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Disability Rights: Not for Service - Report: Part 6_1

Not for Service: Experiences of injustice and despair in mental health care in Australia

PART SIX: ANALYSIS OF SUBMISSIONS AND FORUMS AGAINST THE NATIONAL STANDARDS FOR MENTAL HEALTH SERVICES

6.1 New South Wales

ANALYSIS OF SUBMISSIONS AND CONSULTATIONS FROM NEW SOUTH WALES AGAINST THE NATIONAL STANDARDS FOR MENTAL HEALTH SERVICES

In summary, information presented in this section was gathered from 82 submissions (see Appendix 8.3.1) and presentations made community forums attended by approximately 163 people (see Appendix 8.1). A draft copy of this report was sent to the Premier and Minister for Health for comment. An analysis of the response from the New South Wales Government (reproduced in Appendix 8.4.1) and an overall review of mental health service delivery in New South Wales is contained in Part 2.7.1.

6.1.1 STANDARD 1: RIGHTS

The rights of people affected by mental disorders and / or mental health problems are upheld by the MHS.

 Under this Standard, submissions and presentations indicate concerns about:

  • non-compliance with relevant instruments protecting the rights of people with mental illness;
  • lack of information about treatment options;
  • problems with the complaints process;
  • consumers not being treated with dignity and respect;
  • rights of people with mental illness in the criminal justice system;
  • lack of access to advocates;
  • lack of access to interpreters; and
  • ministerial discretion and the rights of people with mental illness.

I would like to know if it is possible to take class action against NSW Government on behalf of the mentally ill people and their carers on the basis of discrimination demonstrated by the loss of big psychiatric hospitals such as Gladesville and Rozelle without proper compensation by provision of equivalent community and general hospital based services.

(Clinician, New South Wales , Submission #25)

6.1.1.1 Non-compliance with relevant instruments protecting the rights of people with mental illness

Concerns were expressed that staff of the MHS are not complying with relevant legislation, regulations and instruments protecting the rights of people affected by mental disorders and/or mental health problems (Standard 1.1). Included in the notes and examples for Standard 1.1 are: The Australian Health Ministers' Statement of Rights and Responsibilities, the UN Prinicples on the Protection of People with a Mental Illness and Improvement in Mental Health Care, departmental codes of conduct and mental health legislation.

Why in 2004 are our loved ones still suffering after policy documents from fancy government watchdogs have been released? Why aren't our loved ones receiving the same quality of care as people with physical illnesses? Are they not worthy of treatment? Where is the concern? There are huge problems with the system and some of the staff within the system. There is physical and sexual abuse still occurring. Why do we still use seclusion where there are no toilets, no water?

(Carer, New South Wales , Parramatta Forum #1)

...the basic human rights of people living with a mental illness are still being ignored. What about the voiceless sufferers of people with a mental illness.

(Carer New South Wales , Sydney Forum #2)

It must be recognised that the patient is the most disempowered person, the one whose input is most likely to be disregarded and put down as a symptom. As such it is necessary to ensure their rights.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA), New South Wales , Submission #349)

The Indigenous Social Justice Association (ISJA) and Justice Action (JA) also expressed concern regarding the frequent assumption that people with mental illness lack the capacity to consider matters, give opinion or give directions and that this lays the basis for many rights being denied:

We believe that it is vital to respect the patient as a person. It should never be assumed that the person is incapable of considering a matter, forming an opinion and giving direction regarding the matter. This includes who is privy to information and who may be involved in admission, treatment, and discharge, in terms of Health and non-Health persons and the interaction of the two. There is generally a presumption that any patient with psychiatric disability lacks capacity. This is untrue. It is also untrue that a lack of capacity regarding one issue means that the patient may be regarded as lacking capacity in another or all issues. Issues need to be looked at on a case by case basis.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA), New South Wales, Submission #349)

6.1.1.2 Lack of information about treatment options

Concern was expressed that mental health services are not providing consumers and their carers with information about available mental health services, mental disorders, mental health problems and available treatments and support services. Standard 1.8 states: 'The mental health service provides consumers and their carers with information about available mental health services, mental disorders, mental health problems and available treatments and support services'.

This is of serious concern on many levels with regards to consent, choice, the right of a person to know about their illness and the treatment plan (and any side-effects) and for carers to be informed regarding what is and will be happening and how they best support the consumer or access support for themselves. The following statement by a consumer at the Sydney forum indicates that despite frequent contact with the mental health service, very little information was provided about treatment options to allow the consumer to realise her range of options and elect to receive treatment in the least restrictive setting:

I have had 4 acute episodes but it was only during the last one that I found out that I could be treated at home if I had a support person.

(Consumer, New South Wales, Sydney Forum #11)

The worker left absolutely no information - not even a business card. No information was given about community services ... The worker did not arrange any support services or give any information about them.

(Carer, New South Wales, Submission #48)

6.1.1.3 Problems with the complaints process

Carers who had used the complaints procedure reported feelings of anger with the process, of being ignored or their concerns trivialised or being fearful of losing everything they had. The descriptions provided by carers did not accord with a complaints procedure 'easily accessed, responsive and fair' (Standard 1.10). Failure to have in place a system which allows consumers and their families and carers to make complaints confidentially and ensure that complaints procedures are adhered and responded to weakens this right and fails to provide a mechanism by which to 'improve performance as a part of a quality improvement process' (Standard 1.12). Comments presented via submissions indicate that the complaints procedure is currently obstructive and futile. The complaints process does not allow for the identification of single or systemic failures and thereby does not allow for personal redress or systemic improvement. The following extracts from a number of submissions illustrate some of the frustration experienced by people when dealing with a dysfunctional system:

We have lost our son ... There has not been a hearing yet, which we made a statement to say we wished to be present at. The Dr that was head of the [X] Dept made a comment to us as we left to something of the effect that we shouldn't pursue the matter any further as not having a lot we could lose all that we have. Our son was told he could not leave as he was too ill and was on 24 hour surveillance, and this happened ... Dr [Z] ... [h]e felt there was not enough done. I feel the medication he was on made him do what he did.

(Carer, Mother, New South Wales, Submission #135)

We had made a detailed complaint in writing to Mr [Y] (General Manager, X Hospital) on 23 December 2001 and were unsatisfied with his response which was inaccurate, glib and condescending.

(Carers, Parents, New South Wales, Submission #106)

My wife made a formal complaint about [nurse]'s behaviour, but there was no response from the hospital.

(Carers, Parents, New South Wales, Submission #106)

The health service will only flex a muscle when it feels threatened by actually appearing before a coroner's inquest or being sued.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

There is not enough access to legal aid for those with a mental illness in terms of ongoing support. There seems to be a disparity in what can be accessed by those with a mental illness compared to those without a mental illness.

(Clinician, New South Wales, Broken Hill Forum #20)

People have the right to legal aid. I know from my husband that consumers have been refused legal aid and are put on community treatment orders because of their mental illness.

(Clinician, New South Wales, Broken Hill Forum #19)

I applied under the Freedom of Information Act to get access to files to lodge a complaint - we have been waiting for two months and haven't received any medical files. The mother recently suffered a stroke her sister is caring for her.

(NESB Consumer Advocate, New South Wales, Parramatta Forum #8)

During December 2001 and January 2002, we had a number of discussions and conferences with the MHU [Mental Health Unit] Psychiatric Registrars and with Dr [Y], Director MHU. Our experience with these people was that no follow-up occurred with some issues that we raised, treatments recommended by them were not carried out because they did not appear in the treatment notes, and official complaints were ignored.

(Carers, Parents, New South Wales, Submission #106)

I also wrote to the Health Complaints Commission who felt an internal investigation was warranted. Apparently as a result we have had the business cards of the clinic changed, as the number there was misleading to patients. [X] called it for help upon discharge and the phone had rung in the patients lounge and was answered by a patient. He wanted help and no-one was there. Also I think other smaller things have been changed with regard to patient care especially after an attempt at suicide. Not much in the scheme of things.

(Carer, Wife, New South Wales, Submission #126)

6.1.1.4 Consumers are not being treated with dignity and respect

Overall, many carers and consumers expressed concern that during their involvement with the MHS they were treated with disrespect and as citizens whose rights as described under the National Standards were ignored.

Consumers have a right to be treated with dignity and respect. It is our view that some staff are not acting appropriately in the way in which some consumers, carers and agencies are being treated.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

Some people are transported around in paddy wagons for days because there's nowhere for the police to take them. Some people are held in seclusion for days on end for the same reason. Where is the humanity in this? People who are on community treatment orders are required to turn up at police stations to get their injections.

(Consumer, New South Wales, Parramatta Forum #5)

My wife and I are appalled at the social injustice and undignified treatment to which we and our daughter were subjected during our daughter's 35 days in the MHU.

(Carers, Parents, New South Wales Submission #106)

By 15 December 2001, our daughter had developed severe oral thrush, her tongue being swollen preventing her from swallowing and talking without great distress. Unbelievably, her meals still comprised solid food (which she could not eat); this situation led to her subsequent malnutrition and severe dehydration which resulted in her losing 12 kilograms and being transferred to medical ward 2 East on 4 January 2002 for prompt life-saving intravenous and naso-gastric treatment ... We observed that MHU staff has no time or interest in addressing anything other than our daughter's mental state. Also on 15 December 2001, my wife saw our daughter drinking the toilet water to help relieve her dry and thickly-coated tongue, mouth and throat.

(Carers, Parents, New South Wales. Submission #106)

My brother suicided in a hospital ... My brother is just an example of what will happen to others who are failed by the system. People are placing too much faith in institutions - people need access to good quality community care without having their human rights abused. My brother had care at Rozelle but he didn't really qualify for that catchment area so he then had to go back to St George but there wasn't anything for him to do there.

(Carer, Sister, New South Wales, Sydney Forum #7)

After 4 January 2002 when our daughter had been transferred from the MHU into medical ward 2East, she was immediately treated by the staff as a whole person with dignity, respect, compassion and empathy. We observed that the medical ward staff was a professional caring team at all times, even when our daughter was a handful They accepted the challenge with care, diligence, resourcefulness and a great team effort which achieved a great result in a short time in comparison with the five weeks that our daughter was in the MHU where she deteriorated badly. As parents, we are grateful for the clear concise and accurate information the medical ward team offered us, keeping us informed and assured that our daughter's medical treatment was on-track.

(Carers, Parents, New South Wales, Submission #106)

The clients ... are the ones who end up 'falling between the gaps'. Even of their chosen lifestyle is non-conformist or they are 'difficult clients' they are still human beings who are entitled to be treated. And treated humanely.

(Walgett SAAP Services, New South Wales, Submission #63)

They did not send a letter of introduction with a request for contact prior to the first visit of three people to the home which came as a surprise to the client [aged person] and carer. No reason was given for this ... At no stage did the worker [aged care assessment team] advise the client [aged person] when they would be arriving. They just had to let them in ...

(Carer, New South Wales, Submission #48)

He was supposed to be sent to a hospital with a psychiatric ward but instead he was sent to Silver Water jail which does not have a psychiatric ward. At the jail he was sent into the general population area with no toothbrush, no glasses, no hearing aid. That is where he stayed for 2 months. We spent two months trying to get him his glasses and hearing aid

(Carer, Mother, Victoria, Footscray Forum #8)

6.1.1.5 Rights of people with mental illness in the criminal justice system

The Indigenous Social Justice Association (ISJA) and Justice Action (JA) raised concerns with regard to the rights of people with mental illness in the criminal justice system and the need to be particularly vigilant about protecting the rights of these consumers and their access to treatment and support services. Carers also raised concerns about conditions and treatment received by their children with mental illness while in prison:

They are in a highly restricted environment, have no choice in provision of service, have far reduced access to their support network, have even greater problems in accessing any complaint or oversight body and in allowing such bodies to examine information that they request to be examined.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

Prisoners must also be able to nominate friends / family / advocates as per below and have access to their information and control over who is allowed to have it like any other person.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

In May 2001, as a consequence of that inadequate treatment, he was charged with malicious damage by arson and in April 2002 was found not guilty by reason of mental illness. From May 2001 until June 2003 our son was incarcerated in appalling conditions at Long Bay Prison Hospital. His behaviour throughout that period was exemplary. During all of that time, he was locked for at least 11 hours a day, and often longer, in solitary confinement in a prison cell and was not allowed to have a TV in his cell. He was frequently hungry, due to the poor quality of the food provided.

(Carers, Parents, New South Wales, Submission #75)

We have been shocked by the use of prisons as surrogate mental health care and treatment facilities in NSW. We do not believe that this is an acceptable option in 2004. Furthermore we consider it is in contravention of the United Nations Declaration of Human Rights 1948.

(Carers, Parents, New South Wales, Submission #75)

Section 32 of the Mental Health (Criminal Procedure) Act 1990 (which commenced 14 February 2004) provides magistrates with the option to divert people with an intellectual disability or mental disorder into the 'human services sector' rather than convicting them of a criminal offence. Walgett SAAP Services noted its concern that people with a mental illness have been inappropriately incarcerated because they have been unable to get the documentation necessary to prove their illness:

Local solicitors have advised that it is difficult having client matters dealt with under s32 of the Mental Health Act due to the lack of necessary psychiatric reports. Consequently many clients are dealt with in the prison system.

(Walgett SAAP Services, New South Wales, Submission #63)

6.1.1.6 Access to advocates

Concern was expressed that consumers are not being made aware that they have a right to have 'an independent advocate or support person with them at any time during their involvement with the MHS' (Standard 1.6). This has resulted in support people, including nominated service providers, explicitly being refused involvement when consumers have specifically requested their co-attendance and support:

We have also found problems with the system's recognition of independent advocates, who having been specifically requested to act of behalf of a patient regarding a certain matter, are denied the ability to do so. This even occurs when the request has been in writing - demands are made for the request to be rewritten in a standardised format. This causes frustration in the patient and delay in resolving a problem. The form suggested above plus an expanded ability for friends, family, people in other close relationships and advocates to rapidly contact the Official Visitor and have them look into problems will also assist in this area of concern.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

We propose that communal self advocacy organisations be formally recognised and allowed to do individual patient advocacy on request, and systemic advocacy regarding the issues affecting their members.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

Appealing for a shy person with mental issues is extraordinarily difficult. At least there are hospital visitors for people in hospital. It would seem that there should be a system of advocacy whereby of there is an at home visiting by the ACAT [Aged Care Assessment Team] team there should be an independent advocate who makes contact - both for the carer and the client - who facilitates appeals and ensures the individuals fully understands the process. Unfortunately the client may not appeal because they just don't want the hassle - it is too much for them - there needs to be some way clients and carers can make their views known and taken into account.

(Carer, New South Wales, Submission #48)

6.1.1.7 Access to interpreters

For people who have a hearing impairment or speak a language other than English, access to mental health care is further complicated by communication and cultural barriers. These barriers may make it difficult for the consumer and their family and carers to understand mental disorders, mental health problems and available treatment and support services and how to navigate the system. In many cases a person may be socially isolated or reluctant to have family or friends involved as carers or act as an interpreter for reasons of confidentiality or stigma. Evidence presented at forums and submissions indicate that many consumers from a non-English speaking background (NESB) are not made aware of their rights and responsibilities in either a written or verbal manner as required by Standard 1.3 (e.g. written material in their language or via and interpreter). This failure to appropriately inform people of their overall rights means that consumers may be specifically unaware of their right to have access to an accredited interpreter (Standard 1.7). Additionally, it appears that some health professionals are either not aware of the right of consumers and carers to have access to accredited interpreters or they are specifically denying consumers and carers this right. The following quotes from a number of the community forums serve to illustrate these failures:

We tried to set up a telephone interpreter service in mental health services for the hearing impaired but we had no success. Services are not budgeting for interpreters. There are only 2 F/T hearing impaired community workers for the whole of NSW.

(Disability Community Worker, New South Wales, Parramatta Forum #2)

The use of interpreters is still a big problem. The services are not using interpreters when they should be.

(Multicultural Mental Health Worker, New South Wales, NESB Parramatta Forum #9)

People assume it's not their right to have an interpreter present. We've had dealings with services that simply don't inform people of their right to have an interpreter present. It can also be costly for the client. Phone interpreters were free for just five years.

(Anonymous, New South Wales, NESB Parramatta Forum #13)

Services are saying they don't work with interpreters. Bankstown will but Parramatta won't.

(Service Provider, New South Wales, NESB Parramatta Forum #21)

6.1.1.8 Ministerial discretion impeding rights

Carers expressed concern regarding Ministerial discretion when reviewing Forensic Orders and when the Mental Health Review Tribunal has made a decision regarding changes to treatment orders:

The Minister is sitting on a request for a consumer to go home even after the Mental Health Tribunal has approved his release.

(Carer, New South Wales, Parramatta Forum #1)

During the period of our son's Forensic Order, we have not been satisfied with the 'due process' of administration of conditions of that order. The requirement that the NSW Minister for Health approve these conditions means that the process is inappropriately politicised. Decisions about transfer and leave for patients, seem to be made to appease community attitudes about mental illness and violence, which are steeped in stigma, rather than in the best interest of the patient.

(Carers, Parents, New South Wales, Submission #75)

6.1.2 STANDARD 2: SAFETY

The activities and environment of the MHS are safe for consumers, carers, families, staff and the community.

...the increasing service resource crisis presents significant threats to the rights of mentally ill people. This occurs through compromising safety and increasing the risk of sub-standard treatment, undermining centres of clinical academic excellence, increasingly marginalising those with mental illnesses, and through a tendency when addressing clinical problems to rely increasingly on administrative and legal solutions rather than clinically led solutions. The adverse factors combine to make front-line public mental health professionals an endangered species."

(Public Sector Psychiatrists, New South Wales , Submission #297)

Under this Standard, submissions and presentations indicate concerns about:

  • excessive focus on security;
  • safety concerns for consumers in hospital settings;
  • safety concerns of staff; and
  • inadequate treatment and support services to ensure the safety of consumers, carers and the community.

6.1.2.1 Excessive focus on security

The NSW Police Association expressed a broad range of concerns with the system of mental healthcare in NSW. In particular, the Association highlighted the large number of people with mental health and drug and alcohol problems needing to be dealt with by the police. They regarded this as a clear failure of the mental health system:

A report released in June 1998 on police shootings showed that more than half the 41 people shot dead by Australian police officers since 1990 were under the influence of drugs or alcohol, and one third were depressed or had a history of psychiatric illness - a clear indication that the system is failing.

(Police Association of New South Wales, New South Wales, Submission #59)

Consumers, carers, NGOs and others expressed concerns with the increasing focus and emphasis on security. Many considered these approaches to superficially address safety in a way that increased fear and intimidation and dehumanised those in 'care':

Some of these security measures convey to the public that the people behind the wire are animals that need to be constrained.

(Carer, New South Wales, Parramatta Forum #4)

Everything is so security driven now - this is a real problem. There's increased gates and increased security.

(Consumer Consultant, New South Wales, Parramatta Forum #9)

Consumers are really intimidated by all the increased security. Even during tribunal hearings there might be two security guards present. Hospitals are not supposed to be prisons.

(Anonymous, New South Wales, Parramatta Forum #10)

It is not uncommon for people suffering a mental illness or acting irrationally, to feel threatened if confronted by a police officer ...

(Police Association of New South Wales, New South Wales, Submission #59)

6.1.2.2 Safety concerns for consumers in hospital settings

Standard 2.3 states: 'Policies, procedures and resources are available to promote the safety of consumers, staff and the community'. Clinicians and carers expressed concern that policies and procedures were not in place to promote the safety of consumers, and that often this was due to a lack of resources:

These problems jeopardise patient safety. Every day, there are knife-edge situations that generally do not end in disaster, only because of the extraordinary efforts of frontline personnel. It is difficult to act in the patient's best interest when institutional pressures are so great.

(Public Sector Psychiatrists, New South Wales, Submission #297)

We observed the MHU staff working under considerable pressure, their services being under-resourced and their numbers inadequate for their patients' safety. We are hesitant to single out particular staff, but we believe that individually it is their responsibility to practice appropriate duty of care and nursing similar to that demanded in hospital medical wards.

(Carers, Parents, New South Wales, Submission #106)

My brother, like many others with a mental illness doesn't have a voice. My brother suicided in a hospital - I came from a modest European background. My parents believed that we would get care ... Hospitals need to be safe - we need to make our hospitals places where it is not easy for people to die from suicide.

(Carer, Sister, New South Wales, Sydney Forum #7)

Around 14 December 2001, my wife saw that the hand basin in the MHU female toilets had been removed leaving the taps to flow directly onto the floor. Patients were still using the taps, in their altered mental state. A month later, my wife noticed that nothing had been done to fix this situation. We believe that this is negligent maintenance and also an OH&S issue, apart from giving carers no faith in the basic competence within the MHU.

(Carers, Parents, New South Wales, Submission #106)

Over three weeks from 9 January 2002, our daughter had a series of ECTs [Electro-Convulsive Therapy]. On 23 January 2002, we observed that no MHU staff accompanied her to the theatre. This was the second time that she was unaccompanied by MHU staff, whom we were told had this responsibility as duty of care, and this MHU delinquency angered the medical ward and theatre staff. We observed on this same day that MHU sent a patient to theatre who had had a drink, and she was rejected by theatre staff.

(Carers, Parents, New South Wales, Submission #106)

However, for [public hospitals] to be safe there needs to be more staff because understaffed, frantic places are ripe for further abuse. During these two stays in hospital in Sydney I saw three other patients assaulted by fellow inmates and one of them was not even believed when she tried to report it to staff. I was really angry on her behalf but I said nothing because I thought I might get a personality disorder back on my file if I attempted to stand up for her.

(Consumer, New South Wales, Submission #327)

6.1.2.3 Staff safety concerns

Concerns were also raised about current policies, procedures and resource allocation to ensure the safety of staff:

I now find it stressful being on call for a weekend. But the mix of patients has changed too. They are on the average more aggressive, more violent.

(Anonymous, New South Wales, Submission #303)

I want to talk about an incident that occurred recently which should indicate to you some of the problems we're faced with in the NGO sector. Two of my nursing staff were leaving work at night and were approached by a client. The client was upset at not being able to access accommodation because he was considered to be non-compliant with his treatment. He threw punches at the nurses and they had to run for their safety. One of the nurses managed to get her mobile phone out and phoned the police and then taken to a secure mental health unit. Within ½ hour he was assessed as being intoxicated and not scheduled - he was released onto the streets and was back outside our service wanting accommodation.

(Clinician, New South Wales, Sydney Forum #3)

Public attention rightly focuses on patient safety but not sufficiently on safety of mental health personnel, with regular assaults on staff being ignored in the media. Current services were not designed to accommodate highly dangerous patients or persons in social crisis who are violent. An overwhelming focus on safety issues ultimately will degrade the humanistic base of psychiatry, with fear driving a wedge between patients and personnel.

(Public Sector Psychiatrists, New South Wales, Submission #297)

Safety for staff is very important, but can be assured by other means (working in pairs to home visit unknown people, electronic safety and communication equipment, returning to a common community base at nights and on weekends, insisting on police involvement if there is the slightest hint of possible danger with ensured response dictated by memoranda of understanding with police, by not allowing any staff to see people in community centres alone at night, etc.).

(Clinician, New South Wales, Submission #351)

Ultimately, OH&S and economy-of-scale arguments can be extended to banning all community health centres and all home visits. The appropriate path is to make community work as safe as possible, to screen and divert most assessments and initiation of treatment away from Emergency Departments, and then use Emergency Departments in exceptional, highly ambiguous or emergency circumstances only, or to assess mixed medical/psychiatric emergencies.

(Clinician, New South Wales, Submission #351)

It is not too difficult in reality to accommodate OH&S concerns while maintaining community based services. We could be forgiven for suspecting that this concern is simply a screen for the dominant drive to economically rationalize services, and to realize assets occupied by mental health services for general health purposes.

(Clinician, New South Wales, Submission #351)

As well as the serious implications this crisis has for patients, there are very real and unacceptable consequences for staff. In addition to the obvious risks associated with safety and aggression, there is the deleterious psychological impact on staff constantly frustrated in their attempts to deal humanely with these people in a system that is patently incapable of responding adequately to demand.

(Mental Health Workers Alliance, New South Wales, Submission #325)

6.1.2.4 Inadequate treatment and support services to ensure the safety of consumers, carers and the community

As documented elsewhere in this Report, consumers, carers and staff also raised concerns about their inability to access treatment and support services during times of crisis, including when at risk of harm to self or others.

When released from hospital, they could do no more for him the hospital said, he proceeded to harass his wife. [X] was arrested and charged and sent to jail ... he appealed and was out in five weeks. They did not let his wife know this ... Last resort, he got a sledge hammer and at 4.30 am ... 2004 smashed the back door of [wife]'s house, threatening to kill himself with knives he had, locking his small daughter in her room and held wife all day until Police arrived and arrested him. ... Also his wife and children under constant fear, how do they cope, all having counselling now, how safe are they? All the mental hospitals tried to help but after some time just sent him home on medication when they were unable to succeed, hoping he would survive.

(Carer, Sister and Brother-in-Law, New South Wales, Submission #108)

There have been incidents where Mum was not covered by a CTO (Community Treatment Order), which meant my mother (under partial care) took to living on the streets and could not be picked up off the streets, even if it was for her own good. I even once tried calling an ambulance, when I saw her asleep on a bench hoping they would take her, alas they couldn't. I was constantly beside myself and scared for her safety.

(Carer, Daughter, New South Wales, Submission #134)

On drugs, malnourished and sick, and mentally disturbed [X] was taken in by my mother who is an invalid pensioner suffering from early dementia. This led to inevitable breakdown of my mother's health as she could not cope with such a disturbed individual who was threatening violence.

(Carer, Sister, New South Wales, Submission #104)

[X] subsequently stayed with us for 10 days even though he was clearly very unwell and should not have been released from hospital. He seemed to be getting worse staying with us and constantly paced through the house day and night. [X] became very aggressive towards his family and had problems with his thought processes. His condition was obviously deteriorating rapidly and we were very worried about safety issues, both his and our own.

(Carers, Parents, New South Wales, Submission #198)

6.1.3 STANDARD 3: CONSUMER AND CARER PARTICIPATION

Consumers and carers are involved in the planning, implementation and evaluation of the MHS.

The other thing the NSW govt. is good at is holding inquiry after inquiy, establishing task force or select committee after each other - and all it is, is a big talk fest and we go around the same circle for the next 2-3 years or in Australia's case for the next 10 years.

(Consumer and Consumer Advocate, New South Wales , Submission #8)

Under this Standard, submissions and presentations indicate concerns about:

  • consumers and carers not being heard; and
  • a tokenistic approach by the MHS to consumer and carer participation.

6.1.3.1 Consumers and carers not being heard

Consumers and carers expressed concerns that they are tired of telling their stories and not being heard and they have no avenues to give voice to these views so that they can be heard in a meaningful way. According to Standard 3.2: 'The MHS undertakes and supports a range of activities which maximise both consumer and carer participation in the service'. However, for those consumers and carers who gave evidence either verbally or by submission, their experiences did not reflect realisation of Standard 3.2:

Families are fed up. They've told their stories over and over again. What assurance can I give them that this will be any different. We simply tell our stories yet again and nothing gets done to address the problem.

(Carer, New South Wales, Parramatta Forum #1)

As far as I am concerned there is enough talking and too many different organisations drawing up reports. People with mental illness need access to better care - we know what needs to be done.

(Carer, New South Wales, Sydney Forum #2)

I have had Schizophrenic since 1976 ... The system doesn't handle people with a problem like mine. Nobody cares - no one is standing up and saying these people need care.

(Consumer, New South Wales, Sydney Forum #4)

One consumer felt some progress, although a long time in coming, has been made:

We have to tell our stories time and time again - but there have been improvements - though it's been a long time coming! I think we're getting a good response now.

(Consumer, New South Wales, Broken Hill Forum #4)

6.1.3.2 Tokenistic approach to consumer and carer participation

Standard 3.3 states: 'The MHS assists with training and support for consumers, carers and staff which maximise consumer and participation in the service' and Standard 3.4 states 'A process and methods exist for consumers and carers to be reimbursed for expenses and/or paid for their time and expertise where appropriate'. One consumer advocate expressed concern that the mental health system is not committed to consumer participation and that many of the activities and positions are 'tokenistic':

Let's talk about consumers being employed within the mental health system. Yes, I'm a consumer employee and I get paid for 30 hours and work close on 48 hours each week ... What my gripe is that we have such minimal hours, that we simply cannot do half the stuff we're capable of and try to put into effect. More often than not we're not acknowledged as having any expertise, definitely expected (in my situation) to perform as a manger yet not paid accordingly. In other areas we're the most under utilised resource within a mental health service - and forget the voluntary crap - we deserve to be paid for a good day's work like any other person in the community.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

One of the problems with consumer employment and consumer advocates is the vast dearth of an actual skills base. As a trainer in consumer advocacy for a state organisation, I constantly talk to consumers whose only criteria for having been employed in a consumer position is the fact they're a consumer. Even though some consumers are more sensitive to the situations that many consumers find themselves in - training is a must and understanding the very, very specific role of consumer advocacy is imperative.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

Consumers are grossly under-utilised in Mental Health. There is a need for Independent Advocacy for Consumers by consumers.

(Consumer Activist, New South Wales, Submission #257)

6.1.4 STANDARD 4: PROMOTING COMMUNITY ACCEPTANCE

The MHS promotes community acceptance and the reduction of stigma for people affected by mental disorders and / or mental health problems. 

Social isolation & loneliness are guaranteed triggers of episodes of mental illness, substance abuse, self harm & suicide. This happens, and it happens all the time. And in rural and isolated communities, where resources are even more scarce, the problems are much worse.

(Consumer Advocate, New South Wales , Submission #153)

Under this Standard, submissions and presentations indicate concerns about:

  • feelings of isolation;
  • high levels of stigma and discrimination; and
  • discrimination in employment.

6.1.4.1 Feelings of isolation

Consumers and carers expressed concerns about the stigma that still surrounds mental illness and how all too often this results in friends and other members in the community distancing themselves from the consumer and the consumer's family. This would indicate that campaigns and activities by the mental health system to address community acceptance and reduce stigma to date (Standard 4.1) have not been able to turn community attitudes around. A lack of community acceptance is a key barrier to people with mental illness (and their family members) being able to participate socially, economically and politically in society.

As the following quotes highlight, social isolation, feelings of being a burden on family and friends, are the real outcomes for many people:

Now as a survivor of suicide I find I could probably count my good friends on one hand. Many others I have known over the years either because of their own fears, or because [X] didn't die of an accepted death, have chosen to ignore my family and I. But I have never been ashamed of my husband. He fought it as only he knew how and to this day I'm proud of him.

(Carer, Wife, New South Wales, Submission #126)

There is no such thing as community care because the community doesn't care.

(Carer, New South Wales, Sydney Forum #5)

Many people with a mental illness simply don't survive - I've questioned what sort of society we live in when people stand around and laugh and take photos of the homeless. You can see it happening when you walk down the streets!

(Carer, New South Wales, Sydney Forum #5)

I think it is disgusting what the government have done to the mentally ill people of Australia. No one understands what is like to have a mental health problem in your family unless they are in the situation them selves. We live a silent pain. Ashamed. Embarrassed. In fear of our lives. Family destroyed. No one wants to help.

(Carer, Mother, New South Wales, Submission #90)

6.1.4.2 High levels of stigma and prejudice

Consumers and carers spoke of the high levels of stigma associated with mental illness and prejudice experienced by both people with mental illness and their families. Community awareness campaigns to increase understanding of mental illness, acceptance of people with mental illness and information about how to support people with mental illness and their families and carers were described as being critical. The following extracts show how stigma is still causing immense pain in the lives of people with a mental illness and in their lives of their families:

Stigma is also high in small communities like Broken Hill as people fear what they can't see. In discussions with legal advisors they have encouraged people not to disclose their illness. In addition, community attitudes are often dismissive of people with a mental illness.

(Consumer, Carer & Family Worker, New South Wales, Broken Hill Forum #23)

Stigma is a big problem in this community - people fear what they don't understand. I've experienced a change in body language of a specialist when they ask you what medications you are on. I've been told by a solicitor not to tell anyone that - sometimes our integrity is questioned just because we have a mental illness - we might be unwell but that doesn't mean we're stupid.

(Consumer, New South Wales, Broken Hill Forum #24)

We need to create more awareness in the community. My brother was 27 when he died - that is far too young - it's a waste of life. He was incredibly talented.

(Carer, Teacher, New South Wales, Sydney Forum #7)

Need to be aiming at inclusion not exclusion - I know of people who are banned from coming into shops because they have a mental illness. The stigma in our communities is still very bad. People are treated differently, badly because they have a mental illness.

(Carer, New South Wales, Sydney Forum #13)

There's an Indian saying - it takes a whole village to raise a child. Our younger generation don't always get that support from our "village". There are too many people trying to struggle on their own to make sense of the way things are for them.

(Carer, Mother, New South Wales, Submission #122)

Given the stereotype of mentally disordered people as dangerous, citizens often call upon the police to "do something" in situations involving mentally ill individuals, particularly when they exhibit the more frightening and disturbing signs of mental disorder.

(Police Association of New South Wales, New South Wales, Submission #59)

One major consideration is the release of offenders with a history of mental health problems. Mentally ill people face significant social pressures; the prejudices they encounter are even greater if they have both a criminal history and mental illness. People with a criminal history and mental illness can be over rated for their risk of violence. Therefore they can find it very difficult to access mental health resources in the community.

(NSW Department of Corrective Services, New South Wales, Submission #295)

Community stigma is also a problem. People with mental illness are picked on in the community, but there is no community support from services until these people become very unwell.

(Anonymous, New South Wales, Submission #156)

It is scandalous and a national disgrace that there is no significant commitment by governments and the prevalence of community unawareness and apathy. There has to be a national campaign similar to that for AIDS if mental health is to successfully obtain government support etc.

(Carer, Son, New South Wales, Submission #120)

Do you think that anyone cares about anyone with a Mental Illness. The government definitely do not, not even 3/4 of Australia or any where else for that matter.

(Consumer, New South Wales, Submission #70)

There is also the public perception of "suicide" being some sort of crime or punishment, not as it should be, of a perception of loving care and understanding. I must say however, that this was an accidental overdose, but nevertheless, the end result is the same.

(Carer, Mother, New South Wales, Submission #88)

Why is mental illness such a social taboo? If it were a medical condition, I'm sure there would be no end of help.

(Carer, Mother, New South Wales, Submission #88)

6.1.4.3 Discrimination in employment

Employment and a supportive workplace are seen as key factors in preventing the rapid escalation of mental illness and as being essential in the process of rehabilitation and reintegration into society after a period of mental illness. Standard 4.2 states: 'The MHS provides understandable information to mainstream workers and the defined community about mental disorders and mental health problems'. However, acceptance and understanding of mental illness seem to be lacking in the workplace and, according to submissions received and evidence given at many of the forums, discrimination and high levels of stigma are still prevalent in the workplace:

I have 2 clients who have said that if they disclose that they have a mental illness when going for a job they would not have got the job.

(NGO Worker, New South Wales, Broken Hill Forum #21)

One client did eventually disclose her medical history three months after she got a job and then promptly lost that job.

(NGO Worker, New South Wales, Broken Hill Forum #21)

Where is the employment for our kids? Our children are being discriminated against by sophisticated means.

(Carer, New South Wales, Parramatta Forum #1)

Teacher, police officers etc would be very reluctant to tell their employers they have a mental health problem.

(Consumer, New South Wales, Broken Hill Forum #24)

Meanwhile sufferers continue to lose their jobs when employers discover they have an eating disorder ...

(Anonymous, New South Wales, Submission #58)

6.1.5 STANDARD 5: PRIVACY AND CONFIDENTIALITY

The MHS ensures the privacy and confidentiality of consumers and carers.

 Under this Standard, submissions and presentations indicate concerns about:

  • lack of privacy and outdoor physical space;
  • inadequate indoor physical care environment;
  • staff applying privacy and confidentiality rule without authority or ignore or do not request permission from consumer to share information or involve carers;
  • Indigenous issues;
  • prisoners and problems with information sharing between agencies;
  • information sharing with the police;
  • privacy laws and assisting youth to access care; and
  • rights of carers (carers not informed of discharge).

6.1.5.1 Lack of privacy and outdoor physical space

One consumer advocate expressed concern about the lack of private outdoor space in inpatient units. In particular, not only was this space described as being open to view by the public, but that it was unsafe in design (potential for suicide) and conveyed a sense to the consumers and to the public that mental illness equated to a criminal offence (20ft wire fences with a security guard). Standard 5.6 states: 'The location used for the delivery of mental health care provides an opportunity for sight and sound privacy' and Standard 5.7 states 'consumers have adequate space in regard to indoor and outdoor physical care environments'. Clearly though, as the following show, there are many problems with meeting this Standard:

I would like to talk about St Vincent's Hospital and the fence that surrounds that hospital. It's surrounded by a 20ft high wire fence! There's no privacy for consumers in the court yard or the ward. It is opposite a fashionable cafe where diners can view the inpatients clearly. The fence comes up and turns in at the top - not outward. It's a great place to hang oneself! There are also security guards sitting in the courtyard reading novels during the day. Compare this with Prof Pat McGorry's unit in Melbourne where they planted shrubs which have grown into hedges. It is a stark contrast.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

There have been complaints made to St Vincent's but nothing has been done about it. I think it's there to stay. The nurses lobbied for it and said they had it built to protect their patients and themselves from people coming in off the street. I'm not opposed to secure units at all. That's not what I mean. What I mean is that we need to give more thought about how we build secure units. They shouldn't look like cheap prisons. People, even high security people have a right to privacy and respect.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

6.1.5.2 Inadequate indoor physical care environment

Concern was also expressed about the poor standard of hygiene, cleanliness and ambience of inpatient units. Even though Standard 5.7 states that consumers should 'have adequate space in regard to indoor and outdoor physical care environments' it appears the reality for many consumers was far from this:

During December 2001 and January 2002, we observed that both the MHU wards (open and lock-up) were generally in a filthy state, and we saw numerous cockroaches everywhere. It was embarrassing, in fact, when we met with our daughter's clinical psychologist in the MHU lock-up ward and we all observed cockroaches on the wall; we turned blind eyes because they were the least of our worries. But, we ask, how can a hospital environment permit this? And what does it say about the professionalism of the ward management and staff, and their concern for patients?

(Carers, Parents, New South Wales, Submission #106)

Mental health services in this state, this city are shabby, dirty places. The walls have no posters or adornment. I really can't see the point of someone with a mental illness coming into an environment like that.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

...we have lost our son in Carasta [Caritas] Mental Health Hospital (Branch of St Vincent Hospital Sydney) ... They knew he was very sad, but when we saw the hospital where it happened it was so depressing. They told us that depressed people did not notice their surroundings.

(Carer, Mother, New South Wales, Submission #135)

The James Fletcher Hospital is also frequently "dirty" ... cleanliness could be upgraded to hospital standard. For example, the carpets are very dirty, which leaves patients with black feet. There was an example of food smeared on a window which was left for more than 3 weeks. A dead cockroach was left lying in a corridor for several days. There are frequently coffee stains left on the garden furniture. Overall, it is a very dirty environment, not what you would expect from a hospital. There is also no air-conditioning or fans and so no fresh air. The fans were removed after a patient attempted to hang themself. A plan for installation of air conditioning was developed 12 months ago, but no action has occurred yet. Furthermore, there is only one meal option available to patients, regardless of the individual's tastes or beliefs. There is often no privacy for patients using the telephone because if there is a staff meeting being held in the room housing the phone it is placed in the hallway ... patients are treated as 2nd class citizens. They do not receive the same level of care you would receive in other health facilities.

(Anonymous, New South Wales, Submission #156)

6.1.5.3 Staff applying privacy and confidentiality rule without authority or ignore or do not request permission from consumer to share information or involve carers

Both clinicians and carers expressed concerns that a misunderstanding of the Privacy Act and related policies and procedures to protect the confidentiality and privacy of consumers is hampering communication between consumers, carers and clinicians in the provision of treatment and the sharing of vital information. Furthermore, these concerns would suggest that these policies and procedures are not always being made available to consumers and carers in an understandable language and format (Standard 5.2) and that the mental health system is not encouraging and providing opportunities for consumers to involve others in their care (Standard 5.3):

One of my biggest gripes was the privacy law and how I as [X]'s wife was not told anything that could benefit him or myself. ([X] completed suicide 7 days after discharge)

(Carer, Wife, New South Wales, Submission #126)

We have received complaints that people close to a patient have been told by staff that the person has objected to notice and other information being given out and the patient has stated that they made no such objection. This is abuse of the law which could be guarded against by our suggested Advance Directives, admission procedures and creation of a information consent Form, but really it ought not occur for reasons of right conduct.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA), New South Wales, Submission #349)

...the laws are often given as an easy way to avoid talking about issues with people involved with the patient regardless of the appropriateness or otherwise of the request, and c) privacy laws are often attacked because they are inaccurately blamed for lack of social support, and general medical information about psychiatric disability comprehensible to the general public that people close to a patient might need ... Generally, no matter what laws are enacted regarding them, the problems of information/privacy issues will always come down to the attitudes of all parties in the practical application of any such laws. These are complex relationship and social issues that have to be dealt with at the grass roots level and though three way learning between professionals, patients and people connected to patients.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

Having made these points we wish to state that we believe that legislatively and in practice, that there are problems with the definition and interpretation of classes of persons that are allowed to have/give information.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

No other class of people has their personal individual innermost thoughts so examined by others as psychiatric patients. Inspected, rejected, accepted, labelled, classified, dismissed, pathologised. Judged. It is crucial that they have some space to exist in as a person, and are accorded rights not to have their experience and thoughts blathered to all and sundry. That is a fundamental and profound issue of rights that can directly affect the survival of the person. It needs to be upheld for that reason, regardless of the fact that it is also 'therapeutic' and 'in accordance with privacy laws'. Patients must be informed of any disclosure to another party. They have a right to know what is happening with their information, and to whom it is given. To not abide by this principle is to create a situation of secrecy and actions carried out in an underhand manner.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

We contend that the maintenance of privacy of information must be upheld, and that the laws regarding information in no way accord too many rights to the patient as has been suggested. We oppose any degradation of rights of patients in regards to their information and privacy, and we contend that in many areas it needs to be strengthened. We support provision for discussion and mechanisms that allow for diverse relationships to be recognised and for information to be shared in non-abusive ways.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

It should never be assumed that the person is incapable of considering a matter, forming an opinion and giving direction regarding the matter. This includes who is privy to information and who may be involved in admission, treatment, and discharge, in terms of Health and non-Health persons and the interaction of the two. There is generally a presumption that any patient with psychiatric disability lacks capacity. This is untrue.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

I do not think that being over the age of 18 should stop doctors from letting families know more of their loved ones feelings so that they can understand.

(Carer, Mother, New South Wales, Submission #88)

One carer expressed concern that although the mental health system provides opportunities for consumers 'to involve others in their care' misunderstandings of laws and policies in relation to privacy and confidentiality are hindering carers from accessing care on behalf of the consumer when needed:

For a number of years, I have been trying to access mental health services for my daughter, who is now approaching 17 ... Throughout the last year, her mental state has deteriorated badly and I am no longer able to seek help for her because her age precludes it.

(Carer, Mother, New South Wales, Submission #92)

6.1.5.4 Indigenous Issues

The Indigenous Social Justice Association (ISJA) and Justice Action (JA) expressed concern that issues related to privacy and confidentiality for Indigenous people must also be addressed within a cultural context (and therefore related to Standard 7 - Cultural Awareness):

It is a necessity to recognise formally the Indigenous concepts of family, kinship and community, and to allow communities and individuals within the Indigenous communities to work out appropriate ways of dealing with information that affects the relationships within the Indigenous communities. Indigenous Cultures must be respected and Indigenous people must not be forced or pressured to reveal Cultural information. There are arrangements already existing that are supposed to be respected, such as the AHRC / NSW Health Partnership, to look into these issues and ensure that matters affecting Indigenous people(s) are dealt with at all law, policy and service levels in the appropriate and culturally respectful manner. It cannot be allowed to be done in ignorance of the rights and concerns of Indigenous peoples and without self determination. As these issues are already known to government and departments, a choice to ignore the issue and deny rights amounts to a deliberate decision which we contend must be examined with regard to the International Convention on Genocide. We also argue that these issues be examined in the light of the 2003 WHO guidelines on Mental Health Law and Human Rights regarding the protection of Indigenous ethnic groups and minorities.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

6.1.5.5 Prisoners and problems with information sharing between agencies

The Indigenous Social Justice Association (ISJA) and Justice Action (JA) also expressed concern about the right to privacy of prisoners with mental illness and how their privacy has not been respected and consumers have not given 'informed consent before their personal information is communicated to health professionals outside the MHS, to carers or other agencies or people' (Standard 5.4):

We wish to express here our absolute objection that prisoners, as an entire class of people, have by law no right to privacy due to recently passed laws. This discrimination is offensive in and of itself. It is also highly damaging to prisoners' wellbeing and relationships with medical staff and others. Prisoners' patient records have been given to the media, for example the X-rays of the hand of Ivan Milat. (We note that forensic patients' mental state and therapeutic relationship has also been released and discussed in the media, and that this is a nation-wide problem. Forensicare of Victoria is often considered exemplary in debates around forensic standards, but they are in no way immune from problems and have also revealed such personal information in an inappropriate and political manner.)

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

We have received complaints directly from prisoners so affected about the new lack of privacy laws in NSW. We demand that the laws be repealed, and that prisoners be granted rights of medical privacy in accordance with other patients. Corrections should under no circumstances have the right to give out such information and Corrections is not the prisoner's 'carer'.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

We have also described general privacy problems regarding medical treatment in jail and demand that prisoners seeking medical treatment be accorded respect and that their medical rights as a human being be upheld. Prisoners must also be able to nominate friends/family/advocates as per below and have access to their information and control over who is allowed to have it like any other person.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

We also completely object to NGO / Police access to databases and information sharing regarding the mental state and medical records of patients as suggested in submissions and hearings at the NSW Parliamentary Inquiry into Mental Health Services. This is an abuse of patient's private information and must not occur. NGO's and Police can contact Mental Health Teams if really necessary.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

6.1.5.6 Information sharing with the police

Concern was expressed by the police that due to the inability of consumers to access mental health services when required and increasing reliance by families and the community on the police to intervene and assist, that the police should have access to data about consumers in order to provide more appropriate responses. As mentioned above, Standard 5.4 states: 'Consumers give informed consent before their personal information is communicated to health professionals outside the MHS, to carers or other agencies or people'. While information may need to be shared in specific circumstances, in order to meet this Standard, and protect many rights of consumers beyond confidentiality, the appropriate response would be to first improve the response by the mental health service to minimise the need for police involvement on such a large scale:

Funding needs also to be provided for the establishment of a national health system for the identification purposes in relation to the medical history of those persons with mental illness or disorders with ready access to police to assist them in their encounters with these individuals.

(Police Association of New South Wales, New South Wales, Submission #59)

There needs to be a greater sharing of information by the health department to police in relation to a mental health issues. This could possibly take the form of a type of national database which could contain records of names of individuals who have been hospitalized, the types of mental illness they suffer etc so that when police come in contact with the individual, through the hospital they can be accurately informed as to their mental state, which would be of great assistance in helping police determine how they could be best treated.

(Police Association of New South Wales, New South Wales, Submission #59)

6.1.5.7 Rights of carers - carers not informed

One carer expressed her frustration that carers of consumers also have the right to information that impacts on them, and that it should not just be consumers who claim the right to withhold information:

I have four children and 3 with a serious mental illness. I want to outline an issue about the rights - the human rights of carers. My daughter was taken into care involuntarily - taken in as an involuntary patient and we weren't informed. I didn't know for 24 hours where my daughter was - I knew she was acutely ill but not where she was. When I approached the hospital they informed me that my daughter has exercised her right not to inform her family.

(Carer, New South Wales, Sydney Forum #9)

6.1.6 STANDARD 6: PREVENTION AND MENTAL HEALTH PROMOTION

The MHS works with the defined community in prevention, early detection, early intervention and mental health promotion.

 On 4 December 2001, my wife discussed our daughter's condition with her treating psychiatrist, the MHU Psychiatric Registrar and MHU nursing staff, who agreed that the MHU did not cater for our daughter's then current mental state - she was not psychotic. At the request of my wife, and our daughter's clinical psychologist, our daughter was placed in the MHU lock-up ward for her physical protection. It was not until four weeks later, when our daughter's condition had significantly deteriorated, that she was "specialled". We later discovered by accident that "specialling" is normal procedure for vulnerable patients. It seems reasonable that early "specialling" for our daughter would have significantly reduced the severity, duration and cost of her confinement and prevented her ongoing loss of hair and teeth problems from unnecessary malnutrition.

(Carers , Parents, New South Wales , Submission #106)

Under this Standard, submissions and presentations indicated concerns about:

  • a lack of focus on early intervention or prevention programs;
  • unfairness of promoting early intervention when services are failing to cope with current demand;
  • need for more programs to promote mental health and prevent mental disorders in the deaf community;
  • need for more programs to promote mental health and early intervention to people from a non-English speaking background;
  • preventing depression in older men; and
  • substance abuse and mental illness need to be tackled jointly in mental health promotion programs with children and youth.

A sense of disbelief at how government funding was allocated was conveyed by many. This is aptly captured in the following quote:

I think it's terrible that the NSW Government can spend $1.2 million to put up a suicide barrier on a bridge but can't put money into improving access to mental health care.

(Consumer, New South Wales , Sydney Forum #4)

6.1.6.1 A lack of focus on early intervention or prevention programs

Standard 6.8 states: 'The MHS ensures that the consumer has access to rehabilitation programs which aim to minimise psychiatric disability and prevent relapse'. Concern was expressed however that the mental health system places little emphasis on rehabilitation programs or other programs to prevent relapse or promote recovery and instead waits for a crisis to occur before responding:

I work in a psychosocial rehabilitation unit. I think it's unbelievable that things haven't changed. I have met some very dedicated people in the hospital system but I've also seen the opposite. It all starts with the under-funding of services and this undervalues the problem. People are called the 'worried well' and turned away until they are in crisis. The system is structured in such a way that there's too much of a reliance on medication and not enough attention to the other important things like rehabilitation and psychosocial support, housing, etc.

(Mental Health Worker, New South Wales, Sydney Forum #10)

We require more support groups for people experiencing depression anxiety. There is no money going into programs that promote or enhance recovery.

(NGO worker, New South Wales, Sydney Forum # 8)

[There are] no early intervention programs

(Consumer and Consumer Advocate, New South Wales, Submission #169)

We support a population health model, with its emphasis on promotion, prevention and early intervention in mental health. Many of our organisations believe that the Eastern Suburbs Mental Health Program is falling far short of achieving systematic and strategic approaches to early intervention, often failing to respond effectively or provide any service at all, on many occasions when consumers in our services are in need of proper assessment and timely intervention ... We request the implementation of National Standards as they relate to early intervention and continuity of care.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

Closure of the Living Skills Centres has not been accompanied by any coherent implementation of Statewide, recovery-focused rehabilitation services.

(SANE Australia, National, Submission #302)

6.1.6.2 Unfair to promote early intervention when services are failing to cope with current demand

Although the policy shift to prevention and increasing community awareness of available interventions is laudable, an unforeseen consequence for existing services is the generation of more referrals in addition to providing services to "core" patients in high risk groups.

(Public Sector Psychiatrists, New South Wales, Submission #297)

Clinicians expressed concern that there are insufficient services, resources and committed funding to respond to increasing access demands as a result of mental health promotion programs. Clinicians stated that adequate funding and the structure of service delivery needs to be addressed to cope with current and increased future demand to intervene at the earliest possible moment. Standard 6.1 states: 'The MHS has policy, resources and plans that support mental health promotion, prevention of mental disorders and mental health problems, early detection and intervention'.

This means that as there is no follow up people return to their previous bad state and so these clients have to repeat the whole the process.

(NGO Worker, New South Wales, Broken Hill Forum #5)

The prevention 'push' often has encouraged the funding of short-term projects that risk increasing expectations without interventions being sustainable. Such funding enhancements generally have not generated ongoing new mental health services. In addition, other effective sources for referral have diminished. GPs are often too busy and funding constraints limit the availability of the private sector.

(Public Sector Psychiatrists, New South Wales, Submission #297)

Need to educate the community so they recognise the symptoms.

(Clinician, New South Wales, Broken Hill Forum #25)

6.1.6.3 Need for more programs to promote mental health and prevent mental disorders in the deaf community

As mentioned above, access to interpreters for people with hearing impairment is difficult and not all promotional strategies would successfully reach this community. Standard 6.4 states: 'The MHS has the capacity to identify and appropriately respond to the most vulnerable consumers and carers in the defined community'. Also Standard 6.2 states: 'The MHS works collaboratively with health promotion units and other organisations to conduct and mange activities which promote mental health and prevent the onset of mental disorders and/or mental health problems across the lifespan'. One community worker expressed concern that insufficient programs, strategies or funding are available to prevent mental disorders and psychiatric disability in the deaf community, particularly amongst the young:

The rate of young deaf people suiciding is very high. There's no funding to even enable us to print out emergency deaf cards. We would like the government to help us but it won't ... it doesn't.

(Disability Community Worker, New South Wales, Parramatta Forum #2)

6.1.6.4 Need for more programs to promote mental health and early intervention to people from a non-English speaking background

Standard 6.3 states: 'The MHS provides information to mainstream workers and the defined community about mental disorders and mental health problems as well as information about factors that prevent mental disorders and/or mental health problems'. Included in the notes to this Standard are 'local community groups'. Given the cultural diversity of NSW this would include culturally and linguistically diverse communities. For these communities, many barriers present as a problem when discussing prevention and mental health promotion strategies including literacy skills in English and other languages spoken at home, knowledge of the health system and cultural barriers to acknowledging disability and accessing care. Concerns were expressed that insufficient support services and resources have been allocated to assist consumers from a non-English speaking background and refugees to recognise symptoms and access services as early as possible:

We have to continue to invest in this area. The messages need to be multi-level, and multi media - not just brochures. It takes a fair bit of resources and time. The short term funding that we get to develop and provide resources and supportive programs is a problem, we need long term funding so that we can have a meaningful impact.

(Mental Health Promotion Worker, New South Wales, NESB Parramatta Forum #11)

People in the NESB communities don't understand the system of mental healthcare. So they don't know what is available. They need to use NESB workers but these positions are disappearing, particularly difficult to find a worker who is fluent in the right language for the client. So for example, Polish people are assisting people from Arab backgrounds etc. Ethnic health workers are filling the gaps but these people have different skills and are not as appropriate as multicultural health workers. The rigid funding barriers make it worse.

(Multicultural Mental Health Worker, New South Wales, NESB Parramatta Forum #6)

We provide settlement services and aged care services for the Polish Community. The biggest issue/problem facing this community is mental health problems. The refugees in the 40-50 age group have a high level of post-war trauma that has not previously been dealt with properly. There's also a lot of people with dementia and other mental health issues and people presenting with personality disorders. These people have had these illnesses and been untreated for a very long time. They have developed survival techniques but they can't go on like that. They need help and support but it's not available.

(NESB Welfare Worker, New South Wales, NESB Parramatta Forum #2)

An off shoot of Temporary Protection Visa is long-term mental illness and stress. And family isolation contributes to mental illness.

(Anonymous, New South Wales, NESB Parramatta Forum #1)

6.1.6.5 Preventing depression in older men

Men need more support - because they don't ask for help. There's nothing in this town for men - no support. My partner phoned his parole officer to ask for help because there was nothing else for him.

(Consumer, Female, New South Wales, Broken Hill Forum #24)

Standard 6.5 states: 'The MHS has the capacity to identify and respond to people with mental disorders and/or mental health problems as early as possible'. However, the inequity of treatment and early access to services for different population and age groups was a key concern for some. For example, concerns were raised that the needs of older men who are at increased risk of developing depression were not being met by the mental health system:

A final point to be noted is that although a lot of money has gone into prevention of suicide among young people in Australia, there has been comparatively little attention to the continuing high suicide rate among men in late old age... we need to examine how best to help those whose depression is closely linked to painful or disabling physical illnesses.

(Clinician, New South Wales, Submission #264)

Broken Hill has got the highest suicide rate of older men in NSW. Morbidity is highest in New South Wales' far west. Broken Hill has an ageing population. There is a demographic shift in Broken Hill which means there is an increasing older population and decreasing younger population as many move away to seek higher education and build there lives in other places where they can find work and hope. We need more mental health first aid - looks like it empowers you. We need to educate the community so they recognise the symptoms.

(Clinician, New South Wales, Broken Hill Forum #25)

6.1.6.6 Prevention - substance abuse and mental illness need to be tackled jointly

Concerns were expressed regarding the need to address substance abuse and mental health problems jointly. This indicates greater attention to a preventive focus in the delivery of mental health services is required, as outlined by Standards 6.4 (capacity to identify and respond to the most vulnerable consumers n the community), 6.5 (capacity to identify and respond as early as possible) and 6.6 (treatment and support to occur in a community setting in preference to an institutional setting).

Given the known consequences of substance abuse, it is alarming that treatment and support services are not provided at the earliest possible moment to prevent deteriorating illness. Result of this failure can include deteriorating physical and mental health, risk of harm to self or others, unemployment and social withdrawal, and the need for acute care in restrictive settings with severe treatment regimes.

Excellent prevention strategies are in place in regard to tobacco smoking saving many lives and millions of dollars from the health budget. We need similar public health education and awareness campaigns in relation to marijuana abuse. For example a teenager who has a joint every weekend at a party (smokes cannabis 50 times or more before 18 years) has the following increased risk of serious harm: 6.7 times greater risk of developing schizophrenia (Andreasson et al. 1987; Zammit et al. 2002); 59 times greater risk of using other illicit drugs; Increased risk of depression and suicide; Greater risk of cancer cigarette for cigarette than tobacco cigarettes (50% greater tar burden)

(Clinician, New South Wales, Submission #181)

Lack of information was noted as a major problem for young people receiving care in the hospital system. Young people reported that the primary treatment offered was medication but were concerned about dependency and the lack of monitoring and aftercare by treating staff. Young people stressed that youth services and telephone counselling services were supportive but some young people did not know about them until too late.

(NSW Association for Adolescent Health, New South Wales, Submission #98)

Most participants reported taking drugs at early ages (12-14 years) and experiencing psychotic episodes some years later. Commonly, they did not seek help or recognise that they needed help. They reported having a vague understanding of what schizophrenia is but they failed to associate their own experiences with such a mental illness. In most cases, the first episode of their mental illness was diagnosed when they were brought into hospital by police and assessed and hospitalised in the psychiatric ward.

(NSW Association for Adolescent Health, New South Wales, Submission #98)

6.1.7 STANDARD 7: CULTURAL AWARENESS

The MHS delivers non-discriminatory treatment and support which are sensitive to the social and cultural values of the consumer and the consumer's family and community.

People who do not speak English as their first language have very limited access and their linguistic and cultural needs are not met.

(NESB Consumer Advocate, New South Wales , Parramatta Forum #8)

Under this Standard, submissions and presentations indicated concerns about:

  • lack of culturally appropriate practices for consumers from a non-English speaking background;
  • problems with treatment due to cultural barriers and intellectual disability;
  • the need for cultural competency training of staff in the MHS; and
  • utilisation of staff and services with expertise to provide services to consumers from a NESB.

6.1.7.1 Lack of culturally appropriate practices for consumers from a non-English speaking background

Comments were received which suggests that mental health services have not been planned and delivered in a manner which 'considers the needs and unique factors of social and cultural groups represented in the defined community and involves these groups in the planning and implementation of services' (Standard 7.2). Concern was expressed that in many instances staff were not accommodating the cultural need of consumers to have family present during assessment. Also, concern was expressed that even though culturally appropriate practices could be enhanced by employing staff from a variety of backgrounds, sufficient resources were not available to enable this to occur:

When our clients are assessed, the families want to be included but most of our staff are Australian. So language barriers are a problem. Staff are paid poorly so we take whoever we can get.

(NGO Service Provider, New South Wales, NESB Parramatta Forum #10)

Outcome based interventions don't necessarily work for CALD groups. We need to be able to be flexible with the delivery of interventions to NESB communities and tailor programs to the individual.

(Anonymous, New South Wales, NESB Parramatta Forum #16)

Concern was also expressed that staff of the mental health service may not have the requisite 'understanding of the social and historical factors' relevant to the current circumstances of social and cultural groups represented in the defined community (Standard 7.1):

We have people who are victims of concentration camp medical experiments. She was admitted to hospital but had PTSD [Posttraumatic Stress Disorder].

(NESB Welfare Worker, New South Wales, NESB Parramatta Forum #2)

6.1.7.2 Problems with treatment due to cultural barriers and intellectual disability

One consumer advocate expressed concern regarding the management of a person from a non-English speaking background with intellectual disability. It seems that many factors contributed to the infringement of this person's rights including: interpreter not involved; advocate or support person not involved; consumer or carer not being made aware of their rights and access to interpreters and advocates and information; staff social and cultural prejudice; and lack of disability awareness by staff:

There was a lady from Bosnia, a refugee, who has an intellectual disability. Because of her inappropriate assessment she was involuntarily admitted to hospital for a mental illness. She was considered to have PTSD but she didn't. Some people with an intellectual disability do have behavioural problems but not like a mental illness. I applied under the FOI [Freedom of Information] Act to get access to files to lodge a complaint - we have been waiting for two months and haven't received any medical files. The mother recently suffered a stroke her sister is caring for her.

(NESB Consumer Advocate, New South Wales, Parramatta Forum #8)

6.1.7.3 Need for cultural competency training

Standard 7.5 states: 'The MHS monitors and addresses issues associated with social and cultural prejudice in regard to its own staff'. Included in the notes to this Standard are 'cross cultural training for staff' and 'carers from a range of different social and cultural groups'. However, evidence presented suggested that in some cases this was not happening. It was suggested that staff of mental health services are in need of cultural competency training that will assist them to modify their attitudes and behaviours (decrease discrimination) when dealing with consumers from a non-English speaking background:

Cultural competence doesn't exist at the level it's needed. No cultural competence taught. Unless we make it as a core competency, it won't happen.

(New South Wales, NESB Parramatta Forum #14)

Multicultural courses are available but they are predominantly short courses and they are not mandatory. And these courses are often attended by the converted!

(Anonymous, New South Wales, NESB Parramatta Forum #15)

Staff development is really failing at a systematic level to deliver outcomes for people from a NESB. What do we need to do to improve the cultural competencies of the workers? We are seeing increasing institutional racism.

(NESB Consumer Advocate, New South Wales, NESB Parramatta Forum #7)

There is really inadequate training for consumer issues related to settlement.

(NESB Consumer Advocate, New South Wales, Parramatta Forum #8)

6.1.7.4 Utilisation of staff and services with expertise to provide services to consumers from a NESB

Standard 7.4 states: 'The MHS employs staff or develops links with other service providers/organisations with relevant experience in the provision of treatment and support to the specific social and cultural groups represented in the defined community'. Concerns were expressed from consumers, advocates, multicultural mental health workers, NGO service providers and clinicians that a sufficient number of skilled staff are not being employed to meet demands. Consequently, systemic problems exist with the operation of current policies and the interface between specialist and mainstream services for consumers from a NESB:

There's a systemic failing on a policy level and a marked reduction of providing multicultural workers because we are being mainstreamed.

(NESB Consumer Advocate, New South Wales, NESB Parramatta Forum #7)

I am 1 of 30 bilingual counsellors for NSW. We are not psychiatrists however we do feel the brunt of the community's need. I am aware of only one Spanish speaking psychiatrist. We need a review of bi-lingual psychiatrists.

(Multicultural Mental Health Worker, New South Wales, NESB Parramatta Forum #8)

There's no balance between the ethno-specific workers and mainstream workers.

(NGO Service Provider, New South Wales, NESB Parramatta Forum #10)

Pilots and one-off grants make it very difficult for us to reach out to the communities. Mostly now we don't apply for this money. It's not fair to build people's expectation.

(Clinician, Rehabilitation, New South Wales, NESB Parramatta Forum #17)

6.1.8 STANDARD 8: INTEGRATION

6.1.8.1 Service Integration

The MHS is integrated and coordinated to provide a balanced mix of services which ensure continuity of care for the consumer.

 Under this Standard, submissions and presentations indicate concerns about:

  • lack of coordinated care in rural and regional areas due to high staff turnover;
  • chronic under-resourcing resulting in inability of MHS to deliver integrated and coordinated care;
  • inability of MHS to deliver coordinated and integrated services to consumers from a non-English speaking background;
  • links with NGO services;
  • inability of mental health teams to provide services resulting in reliance on police force; and
  • problems with Schedule II procedures and integrated and coordinated care.
6.8.1.1.1 Lack of coordinated care in rural and regional areas due to high staff turnover

According to Standard 8.1.4: 'Opportunity exists for the rotation of staff between settings and programs within the MHS, and which maintains continuity of care for the consumer'. Also Standard 8.1.1 states: 'There is an integrated MHS available to serve each defined community'. Reports of high staff turnover also concerned consumers in one regional area as this meant that consumers were not receiving continuous care:

There's no continuity of care or no time to establish relationships as staff move on very quickly in this area.

(Consumer, New South Wales, Broken Hill Forum #2)

With resident specialists so often on leave or moving on it is hard to have to re-tell your story to each new arrival. People with mental illness need to build relationships and trust. We can't do that here because we lose staff quickly.

(Consumer, New South Wales, Broken Hill Forum #2)
6.8.1.1.2 Chronic under-resourcing resulting in inability of MHS to deliver integrated and coordinated care

Concerns were also expressed with regard to the shortage of clinical staff in the sector to provide the required treatment and support when consumers were trying to access services or when clinicians were referring consumers for treatment. The shortage of psychologists and psychiatrists in the public sector was reported, as was the shortage of general practitioners who bulk-bill and who have adequate mental health training:

We need a link for people to refer to so people can access care. As there is very limited access to psychiatrists and long delays in seeing psychiatrists, it means many people have to return to GPs to try and get help. But access to GPs is not always easy given the decline in bulk billing.

(Family Support Services Worker, New South Wales, Broken Hill Forum #12)

There is a focus on clients presenting for the first time, at the expense of long-term clients. [X] believes this philosophy of the mental health services "means to me they have given up on the long term patients".

(Anonymous, New South Wales, Submission #156)

A person needs to be on the "acute board" to get a home visit from the mental health team. People at the acute stage of their illness are registered on an awareness / priority register for mental health nurses. Only the hospital doctor at the hospital can put a person on the board.

(Anonymous, New South Wales, Submission #156)

[X] went to a psychologist just 2 months before he died - who referred [X] to a psychiatrist - but unfortunately the psychiatrist was away on holidays - so he couldn't get an appointment - in the detailed referral it was obvious to blind Harry that [X] was screaming out for help he had in a one hour session with the psychologist relayed every vital piece of information in regard to his condition. [X] should never have been allowed to leave that psychologist's office - in the referral it said he had a (suicide) plan - it wasn't the first time etc etc.

(Carer, Mother, New South Wales, Submission #122)

Even this last hospital admission, with a CTO order in place took ridiculous co-ordination between Community Health Centres to ensure that Mum could get picked up. Mum had to be breached, the breached approved, approved to be faxed to the other centres, and then maybe she could be picked up. Meanwhile, you are starting to get nervous as your mother takes to the streets more, her mental health and hygiene slowly deteriorating. Trust me when I say that the catch me if you can game can take weeks, even months.

(Carer, Daughter, New South Wales, Submission #134)

Mental health services are shifting clients onto GPs. However, whilst GPs have now received some training in mental health, they don't have sufficient time to give to patients for mental health consultations. They also have limited training. For example, the GP for [X]'s wife is not fully up-to-date on medications.

(Anonymous, New South Wales, Submission #156)

I have had Schizophrenia since 1976 ... I go regularly to see a psychiatrist at Prince of Wales Hospital. Though there's now only 1 psychiatrist left out of the 8 that were there when I first started going years ago. 1 psychiatrist is hardly enough is it?

(Consumer, New South Wales, Sydney Forum #4)

[X] was identified by a psychologist as suicidal and referred to his doctor [GP]. After repeated attempts to get an appointment, he saw his doctor. Before the appointment occurred he attempted suicide. After keeping his doctors appointment which was only a half hour after the attempt, I was summonsed to drive him to the Emergency Section of our hospital. [X] was given a letter by his doctor in which the doctor stated that the Psychologist [X] had seen on the previous Monday had informed him that he thought [X] was suicidal. Yet, at NO time did [X]'s doctor call him as a matter of urgency to go and see him or to offer help in any way. Lack of duty of care as far as I'm concerned.

(Carer, Wife, New South Wales, Submission #126)

Mental Health staff report they do not have the resources and staff required to meet the demand for mental health services, and services in areas such as supported accommodation, outreach, self-help and rehabilitation are wholly inadequate. Mental health teams no longer provide long-term case management and are limited instead to 'episodic care', with short-term interventions followed by the referral of chronic mental health clients to general practitioners (GPs) for case management. Even so, mental health teams are struggling with caseload pressures.

(NCOSS, New South Wales, Submission #47)

MATT (mobile assertive treatment team) - work with severely sick psychotic people to keep them out of hospital - only one team with 7 staff who see 70 clients for the Central Sydney area which has 5000 consumers, 500 of whom would benefit from seeing the MATT team, which provides intensive case management, support, counselling and supervision

(Consumer and Consumer Advocate, New South Wales, Submission #169)

Case managers in the Community Health Centres are overloaded - have to manage too many consumers (30 each? e.g. 28 people for 1 day a week) - not enough time to work intensively with people. There is hardly any money for community treatment. Crisis teams do not have enough time to spend with consumers in crisis - only time to quickly check symptoms and medication, no time for counselling

(Consumer and Consumer Advocate, New South Wales, Submission #169)

Concern was also expressed regarding staff leaving without planning for continuity of care. The impact for one consumer of having to restart the care process without notification or transition time was devastating. Standard 8.1.4 states: 'Opportunity exists for the rotation of staff between settings and programs within the MHS, and which maintains continuity of care for the consumer'.

A few years ago she finally found a great doctor she trusted. Dr [Z] worked in a Western Sydney Hospital, and for a couple of years she was stable and quite normal, until one day she turned up to her appointed only to be told he had moved to America. EVER SINCE THIS DAY, we have been battling to keep her stable. This doctor had not arranged a transition time to a new line of help. He just left and did not care about the consequences. (author's emphasis)

(Carer, Sister, New South Wales, Submission #79)
6.1.8.1.3 Inability of MHS to deliver coordinated and integrated services to consumers from a non-English speaking background

Standard 8.1.1 states: 'There is an integrated MHS available to serve each defined community' and Standard 8.1.5 states 'the MHS has documented policies and procedures which are used to promote continuity of care across programs, sites, other services and lifespan'. As previously mentioned, many concerns were expressed about the ability of the mental health system to deliver coordinated treatment and care to consumers from a non-English speaking background as reported in the following quotes:

The bilingual counsellors do take the brunt. I am coming across this over and over again. We can do an assessment and see people for 6 sessions then we have to refer them on to mainstream services but they bounce back to us.

(Multicultural Mental Health Worker, New South Wales, NESB Parramatta Forum #9)

I was part of a major service re-educating GPs and developing shared care etc for NESB. It's taken about 5 years and there is evidence that it's working. Everyone puts in an effort but it's just not enough to help someone like me from an acute mental health service dealing with someone from Somalia for example.

(Mental Health Worker, New South Wales, NESB Parramatta Forum #12)
6.1.8.1.4 Breakdown in Links with NGO services

One clinician from an NGO service expressed concern about the lack of resources and breakdown between NGO service providers and the mental health service and not being able to work together to provide continuity of care in a coordinated and integrated manner as stated in Standard 8.1.5:

There's a real breakdown between NGO & public services. The Government is happy to treat NGO's as extensions of services but not fund them accordingly. In fact the Government has cut funding to NGOs and still expects that the NGO's will carry the load. I have had to put a ban on all referrals from services. We're now in a position where we are rationalising our services. We don't like it but we have to run our service within the resources we have to work with ... My service has a budget of $400,000 / year but our funding hasn't increased since early 1990s.

(NGO Clinician, New South Wales, Sydney Forum #3)
6.1.8.1.5 Inability of mental health teams to provide services resulting in reliance on police force

Standard 8.1.1 states: 'There is an integrated MHS available to serve each defined community', including case management and crisis intervention. The under-resourcing of community based services led one consumer advocate and the Police Association of NSW to express concerns that coordinated care was not being provided and, as a result, police were required to become involved unnecessarily:

The community staff are stretched to the maximum and their resort is to tell people to go to their GP or access an emergency service (was one very recent answering machine message I happen to hear when I was trying to contact a community health worker. Mind you, no information about how to contact the emergency service was part of the message.)

(Consumer and Consumer Advocate, New South Wales, Submission #8)

Even though they claim to be available 24 hrs a day / 7 days a week through a 1800 telephone number, they are not providing a true 24/7 service ... Currently, police are finding themselves being called prematurely and often unnecessarily to assist in the management of patients who have been released into the community or who are allegedly being treated while living in the community. They are also often being asked to retrieve AWL (Absent Without Leave) patients from the community without any attempt of the mental health teams to bring the patients back to hospital using their own resources ...

(Police Association of New South Wales, New South Wales, Submission #59)
6.1.8.1.6 Problems with Schedule II procedures and integrated and coordinated care

The Police Association of NSW particularly expressed concern about the frequent and unnecessary involvement of the police in Schedule II procedures. Specifically, they expressed concern that mental health teams should co-attend when necessary and that general practitioners require additional training and information about when police involvement is necessary. Both these factors could result in fewer consumers coming into contact with the police thus treating 'persons with mental illness humanely and with dignity'.

Mental health teams should also be required to accompany police when attending a Schedule II, especially when the individual is not known to police. The police role in these scenarios (and they should only be used in the most extreme circumstances) should only be limited to police merely providing security for the mental health workers. Mental health units and the health system are failing in their duty of care to mentally ill patients released from hospitals ... By working together, they can treat persons with mental illness humanely and with dignity and ensure that these subjects receive the most appropriate services available ...

(Police Association of New South Wales, New South Wales, Submission #59)

A common complaint is that doctors seem to regularly and somewhat routinely sign the schedule that police are required as escorts in situations where they are definitely not required, for example, where the patient is drugged up ...private practice doctors appear to have no idea when it comes to issuing a Schedule II requesting police assistance - they seem to do this almost routinely and appear unaware of any local MOUs [Memorandum of Understanding], largely due to the fact that private practitioners are not a group in partnership with such memorandum ... At the moment, police have no say in the matter. If they refuse to comply with the doctor's request, they are liable to be prosecuted for neglect ...

(Police Association of New South Wales, New South Wales, Submission #59)

6.1.8.2 Integration within the health system

The MHS develops and maintains links with other health service providers at local, state and national levels to ensure specialised coordinated care and promote community integration for people with mental disorders and / or mental health problems.

If you do not have a case worker you do not have particularly good care. Mental Health is not as integrated with other services as it should be.

(Consumer, Male, New South Wales , Broken Hill Forum #8)

Under this Standard, submissions and presentations indicate concerns with: neglect of consumers' physical health care needs in inpatient settings; and the lack of interagency collaboration.

6.1.8.2.1 Neglect of physical health care needs in inpatient settings

Standard 8.2.1 states: 'The MHS is part of the general health care system and promotes comprehensive health care for consumers, including access to specialist medical resources'. Concern was expressed that the mental health system is neglecting the physical health of consumers in inpatient settings:

However on 4 January 2002 (following our threats to involve the media), she was transferred to a medical ward, having become psychotic and also because she had acquired dehydration, malnutrition, severe carpet thrush and split and bleeding heels. These four new conditions had developed in the MHU [Mental Health Unit] whilst she was under the "care" of staff. We believe that our daughter's mental and physical states are inseparable as regards duty of care, and we vigorously question the therapeutic efficacy of the Liverpool Hospital Mental Health Unit.

(Carers, Parents, New South Wales, Submission #106)

At no time did we find evidence of the MHU [Mental Health Unit] treating our daughter for her extensive bruising (suffered from falling over, punching walls and staff handling), yet these injuries were promptly addressed in the medical ward.

(Carers, Parents, New South Wales, Submission #106)
6.1.8.2.2 Problems with interagency collaboration

Standard 8.2.4 states: 'The MHS has formal processes to promote inter-agency collaboration'. However, once again many concerns were expressed that a lack of funding, high staff turnover in the mental health system and a lack of interagency collaboration and protocols is hindering the delivery of integrated and coordinated care:

In defence of mental health services, there has been a big effort to liaise with NGOs - there have been significant efforts made in the last few years to get better community integration of mental health services. But the high turnover of staff it makes it very hard to establish those relationships and collaborations and hard to get the protocols right.

(NGO worker, New South Wales, Broken Hill Forum #10)

The Mental Health First Aid Course has been very useful and 4 of our Lifeline positions were funded to do this by the mental health service. We previously had a MoU with the mental health service but it's no longer functional.

(NGO worker, New South Wales, Broken Hill Forum #10)

The Richmond Fellowship is a good model of community partnership but the mental health services are working in isolation and could be more integrated in community activities.

(Consumer, New South Wales, Broken Hill Forum #8)

6.1.8.3 Integration with other sectors

The MHS develops and maintains links with other sectors at local, state and national levels to ensure specialised coordinated care and promote community integration for people with mental disorders and / or mental health problems.

Under this Standard, submissions and presentations indicate concerns about:

  • the need for whole-of-government approaches;
  • housing and accommodation options;
  • Department of Community Services (DOCS);
  • guardianship;
  • Centrelink;
  • police and the criminal justice system;
  • emergency services;
  • employment;
  • whole-of-government approach needed to improve outcomes for Indigenous communities;
  • wards of the state;
  • affordability of care - bulk billing clinicians, cost of psychologists and private health insurance;
  • cross-border agreements;
  • whole-of-government approach for youth; and
  • national strategies to increase the number of mental health professionals.
6.1.8.3.1 The need for whole-of-government approaches

[X] was then discharged the next morning and on the drive on the way home with his friend he killed his friend because he was still sick and hallucinating. He was sent to jail ... He was supposed to be sent to a hospital with a psychiatric ward but instead he was sent to Silver Water jail which does not have a psychiatric ward. At the jail he was sent into the general population area with no toothbrush, no glasses, no hearing aid. That is where he stayed for 2 months. We spent two months trying to get him his glasses and hearing aid ... he became very suicidal. This was communicated to me and I informed and pleaded with the authorities to make them aware he was sick and suicidal. They informed me he would be put in a cell with another inmate who could watch him but in fact he was placed in a single cell on Friday 1 October and hung himself on the Friday night. I would like to know why he was failed by 3 Government departments. How did this happen? He wouldn't have killed anybody if he hadn't been put in that situation.

(Carer, Mother, Victoria, Footscray Forum #8)

Overall, the thrust of many submissions suggested a lack of integrated service delivery or whole-of-government approach to solve the complex support needs of many people with a mental illness and their families and carers. Their 'right' to live in the community in a dignified manner appeared a dream rather than a reality. These problems were reported with health, welfare, suicide prevention strategies, criminal justice, community services, disability services, legal, housing and disability services. Many submissions identified that a broader governmental, societal and community approach was urgently required:

The issues around mental health must not be seen as a problem solely of a mental health system. They simply are not. There are more fundamental issues that bear on mental health and mental health problems; there are issues around the priority given to mental health by all the human service and related systems.

(Anonymous, New South Wales, Submission #125)

Many problems arise from the systems stasis of Mental Health, Social Security, Corrections, and Social Services, i.e. they serve the system, not the community, and as such constrain the development of appropriate, diverse, flexible and voluntary services and the growth of good relationships between staff, patients and people close to patients. Policy, political and societal will is as important as legislation here.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

There is an increase in complex presentations, drug problems and violence, and the re-emergence of an alienated 'underclass' whose problems are passed off to psychiatry. Human service institutions (e.g. DOCS) increasingly expect public mental health to pick up the tab for social (rebadged as 'mental health') problems.

(Public Sector Psychiatrists, New South Wales, Submission #297)

There are more fundamental issues that bear on mental health and mental health problems; there are issues around the priority given to mental health by all the human service and related systems. For example, look at the training of general nurses, and of the many of the specialities in medicine. In many of the latter mental health is critically important yet mental health does not feature in the training programmes, I am thinking especially of physicians and paediatricians. But there are others. The same could be said of lawyers and police. Some of the most intractable problems I have found in caring for some young adults with mental illness are the way the justice system and police have treated them, and other systems like housing and income support.

(Anonymous, New South Wales, Submission #125)

To review mental health your purview it must span more widely than mental health services and examine social determinants, different intersecting influences on health and behaviour, and the material provisions for afflicted people and above all the priority accorded to mental health in the broad sense by politics, systems such as health and media.

(Anonymous, New South Wales, Submission #125)

In my mind as a carer, the worst kind of discrimination comes from NSW Government which instead of providing adequate comprehensive services to these people has consistently reduced its provision of services.

(Clinician, New South Wales, Submission #25)

[Stigma and isolation] ... It is not surprising that they turn to drugs, and when they get into financial difficulties the answer should not be to evict them for arrears, but to assess them, and find another solution rather than putting them on the streets without funds or a roof over their heads. There should be some agency to which a mentally ill person can turn for help when things get out of control. Making them homeless when they fail to manage a rental situation is about as uncaring as a government agency can get.

(Carer, Sister, New South Wales, Submission #104)

NCOSS is extremely concerned about the poor coordination of mental health issues, which is occurring across Government agencies in NSW, including poor linkages between specialist mental health services and other Government services. Health consumers and community organisations participating in NCOSS forums have repeatedly raised the need for closer and more consistent integration between mental health services and other Government services.

(NCOSS, New South Wales, Submission #47)

The need for broader examinations of all planning projects from government departments to be examined for their impact on the mental health of the community was also suggested:

I have also long advocated the need for Mental Health Impact Statements (analogous to Environmental Impact Statements) to be prepared as a component of planning services / projects. The purpose being to draw attention/make conscious the contribution (or lack thereof) of matters under consideration and to educate us all as to how pervasive is our neglect (or otherwise). Whether it be housing, fostering programs, recreational facilities/ programs, religion based plans, setting up a business, claimed therapeutic practice, governmental proposals ... This may well get up a few noses, including our own, with benefit! Rhonda Galbally was interested before she left VicHealth, but it was not taken up.

(Clinician, New South Wales, Submission #154)

It was good to hear the emphasis on the responsibility of the community as a whole and the need for leadership in government on the issues and the need for money being contributed in support of innovation and existing agency function ... It did my almost broken heart good to hear the focus on the full picture and the recognition that it is not all the responsibility of the mental health services, or of the voluntary sector.

(Clinician, New South Wales, Submission #154)
6.1.8.3.2 Housing and accommodation options

The lack of available housing and accommodation options for people with mental illness was repeatedly raised as a critical gap in the attainment of mental, physical and social well-being. Concerns were expressed (as detailed in Standard 11.4.B Supported Accommodation) that the lack of available supported accommodation or other accommodation options resulted in people becoming homeless or remaining in care for longer periods of time than necessary because there were no viable alternatives. There was also considerable concern expressed that families bear the brunt of this gap.

Affordable and stable accommodation remains one of the greatest areas of unmet need, particularly for people in the large cities such as Sydney.

(Clinician, New South Wales, Submission #197)

Access to secure and safe accommodation is recognised in the National Standards as essential in the process of reintegration into the community and improved mental health. The lack of available housing and accommodation options and the process of deinstitutionalisation and consequent lack of increased community services have resulted in many people with mental illness becoming homeless, placing intolerable strain on families and contributed to declining health and quality of life:

The problem of finding suitable accommodation was a constant source of frustration for all those working in this industry. I don't believe that the community or the government fully understand the impact that lack of care and accommodation not only on the chronically ill but also to the cost to society.

(Social worker, Student, New South Wales, Submission #118)

Licensed boarding houses are an appalling infringement of people's human rights.

(Anonymous, New South Wales, NESB Parramatta Forum #20)

The move to community based services, while positive, has not been matched by attention to stratified and good quality accommodation options for persons with chronic mental illness who rarely can access supervised community accommodation. Disabled and disorganised patients flounder in unsupervised single accommodation, are cast onto the streets, or are involved in "revolving door" admissions to acute units, which are the only "accommodation" facilities remaining for them. A distressingly high number kill themselves.

(Public Sector Psychiatrists, New South Wales, Submission #297)

We do not consider service providers to be 'carers'. Noting cases of locked boarding houses that dole out huge doses of pills, and noting that Boarding Houses Inspection teams have been refused entry by those that run such places, we consider they should not be accorded any rights whatsoever, and should be stopped from incarcerating people and medicating people.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

Crisis, medium and long-term supported accommodation for offenders with mental health issues and intellectual disability is urgently needed for all community-based offenders (probationers and parolees) throughout the state.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

There is a consistent lack of accommodation and community based services for women offenders with mental health issues. Additionally, if a woman is the primary carer of children it is even more difficult for that woman to find appropriate accommodation. Most women in custody are the primary carers of children.

(NSW Department of Corrective Services, New South Wales, Submission #295)

Living on the street further complicates matters by making it difficult for mentally ill person to receive follow-up services. Without this and ongoing care, these individuals stop taking their medication and sooner or later, end up having a run in with law enforcement. It is at this point that, what was once the institution's mental health problem, now becomes a police problem.

(Police Association of New South Wales, New South Wales, Submission #59)

Undoubtedly, homelessness is a major issue for offenders with mental health issues ... homeless mentally ill people are up to 40 times more likely to be arrested and 20 times more likely to be imprisoned than those with stable, suitable accommodation. While statistics are not available, there would appear to be no compelling reason why the situation would be different for mentally ill offenders in NSW. Incarceration appears to worsen post release accommodation issues ... Further, offenders released with no stable accommodation were three times more likely to re-offend than those who had accommodation.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

As a result of Drug Summit reallocation of funding COS have been able to develop a limited crisis accommodation initiative for higher risk offenders who are at risk of drug relapse due to homelessness.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

I am here today to represent the homeless people who are homeless because of their mental illness. There isn't enough crisis accommodation for homeless men. From my observations about 80% of homeless people have a mental illness, about 50% of those have a dual drug and alcohol diagnosis. We regularly have about 50-60 men sleeping in the laneways in the surrounding blocks to our accommodation service and at any one time you'll see about 100 "sleeping rough" on the streets.

(NGO Nurse Unit Manager, New South Wales, Sydney Forum #3)

Tragically, the homeless people are the forgotten people. You won't hear from the homeless people even in a meeting like this.

(NGO Nurse Unit Manager, New South Wales, Sydney Forum #3)

I am advocating a modern asylum model. The move to community care hasn't improved the situation. We need to target funding to meet the needs of the homeless. The homeless don't have friends or family. There are deaths all the time.

(NGO Nurse Unit Manager, New South Wales, Sydney Forum #3)

The change in vagrancy laws and the Richmond Report have greatly contributed to one of the changing face of the homeless, being mentally ill sufferers. The government tried to sell the proposal as the community helping the community.

(Carer, Daughter, New South Wales, Submission #134)

NCOSS has grave concerns about the impact of the social housing package reforms on people with a mental health issue. The creation of market rental bonds, renewable tenancies (rather than security of tenure), the need to prove that you are able to sustain a tenancy and the new policies around nuisance and annoyance will all have a negative impact on people with a mental health issues and are contrary to the recommendations within the mental health inquiry report ... NCOSS is particularly concerned as the availability of support services is currently very limited and those services that are available are over-stretched ...

(NCOSS, New South Wales, Submission #47)

I am aware there are no answers, but one would think that provision for housing for people with an incurable mental illness should be a basic requirement. When I spoke with an officer of the Dept. of Housing explaining the upcoming situation I was told that the mentally ill were not their problem and for [X] to fill in application papers and he can then go back on a waiting list.

(Carer, Sister, New South Wales, Submission #104)

In [X]'s case, The Dept. of Housing had knowledge that he was on a mental health pension, yet ordered him to not only pay enormous (and ultimately unjustifiable) renovation costs, but rental arrears. When he appealed to them for help, he was advised in writing he could not re apply for housing assistance from them without first providing them with a reference showing a six months good rental record in the private market. How absurd is that?

(Carer, Sister, New South Wales, Submission #104)

Supported accommodation is in short supply. The Boarding House Reform program instigated by the NSW Government in 1996 has seemingly failed in its objectives. The standard care in those boarding houses remaining open is still poor and the number of beds available greatly reduced - where have all the previous residents gone? A lucky few were rehoused under the boarding house reform program into NGO run group homes. The bulk have possibly added to the majority of people accessing homeless shelters who have mental health problems, live on the streets or in unsupported private rental ghettoes. Seemingly no government department feels it is their responsibility to provide disability support and / or housing for people experiencing mental health problems ...

(Clinician, New South Wales, Submission #197)

...the Association recommends that: ...NAAH continues to work with the Youth Accommodation Association and other key bodies to advocate for more responsive supported accommodation programs for young people with a dual diagnosis in New South Wales; that this includes the consideration of specialist, short-term respite services for young people in accommodation services.

(NSW Association for Adolescent Health, New South Wales, Submission #98)
6.1.8.3.3 Department of Community Services (DOCS)

Concerns were raised at the forum for consumers from a non-English speaking background regarding the involvement of the Department of Community Services in the removal of children from parents with a mental illness. These descriptions suggest that cultural and language barriers complicated the protection of the rights of these parents and that these parents were potentially discriminated against both due to their mental illness and their ethnicity.

I had contact with DOCS. I was the case manager of a woman with schizophrenia. I was never given the opportunity to comment or to speak for my client. She lost her two children.

(Anonymous, New South Wales, NESB Parramatta Forum #4)

[X] and his wife both have a disability. When these problems occurred with the children a whole machine of DOCS came crushing down on the family. The problems started for the family when [X]'s wife developed post-natal depression. She had two kids then had the third child and all of a sudden a whole lot of people got interested in the family. But instead of people putting in place support, a whole lot of draconian child protection strategies where put in place. It is a nightmare! It took me three years to get legal aid for this family.

(NESB Advocate, New South Wales, NESB Parramatta Forum #3)

There is a woman from Macedonia who has chronic schizophrenia and has a brother with schizophrenia. Her mother has no disability. The daughter with schizophrenia has a 3 year old child and the child fell and injured herself. The family took the child to hospital and the case was reported and five people came to the house and took the child. The child was appointed a public guardian and even though we tried all avenues to correct this problem there was no success. This person's cultural and linguistic needs were not taken into consideration.

(NESB Consumer Advocate, New South Wales, Parramatta Forum #8)
6.1.8.3.4 Guardianship

One carer expressed concern regarding procedural problems and delays in obtaining guardianship for her son. This delay resulted in fears for the safety of all concerned: the consumer, family members and the community.

I begged and begged for my son to be admitted to hospital but they wouldn't because he wouldn't consent - I couldn't get guardianship. He then went on to another state - the police were the only ones who were sympathetic - it took me 4 months to get guardianship and I finally got him off the streets - his brothers were terrified of him, the local school was terrified of him.

(Carer, New South Wales, Sydney Forum #5)
6.1.8.3.5 Centrelink

The NSW Consumer Advisory Group Mental Health Inc expressed concern regarding the financial vulnerability of many consumers and their families and the need for increased access to welfare payments. Some families, as a result of being unable to access supported accommodation or other treatment and support services for their family member, are often unable to maintain employment and the family is forced to rely on payments from Centrelink.

The closure of long term residential care beds in institutions, and the transfer of responsibility for care to families, has not been accompanied by the development and implementation of appropriate legislation and support for families to enable them to continue to care without severe emotional and financial distress.

(NSWCAG, New South Wales, Submission #273)

Concern was also expressed regarding Centrelink's perceived unnecessary demands for excessive amounts of information and attempts to influence the medical treatment of consumers:

We have also received complaints regarding Centrelink demands to patients and persons close to them a) for very detailed medical information, including letters sent between Doctors ... This is done on threat of termination of payment. It is not acceptable. A patient should not have to give yet more information than the already extensive amount that Centrelink is legally able to get, and in no way should Centrelink be directing patients' medical treatment ... Centrelink is not a 'carer' or the patient or a practitioner.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)
6.1.8.3.6 Police and the criminal justice system

There is great disappointment that the promised 135- bed 'forensic hospital' turns out to be part of the new prison hospital at Long Bay - continuing to regard people as 'mentally ill prisoners' rather than forensic patients.

(SANE Australia, National, Submission #302)

Due to diminishing access to mental health services for consumers throughout their illness, police are increasingly being called to respond to issues relating to people with mental illness, especially in times of crisis. This places consumers at increased risk of coming into contact with the police and the distinct possibility of entering the criminal justice system. The Indigenous Social Justice Association and Justice Action expressed the view that a whole-of-government approach is needed to address the increasing number of people with mental illness who are being incarcerated. Such an approach then needs to take into account issues relating to access to care, crisis prevention and the protection of people's rights when and if they are at risk of entering the criminal justice system. Even though some Memoranda of Understanding have been developed and training has occurred, the presentations and submissions suggest that further consultation is required to more clearly define police involvement with people and acknowledge the limitations of their involvement. Additionally, involvement of police to assist with people with mental illness increases the stigma that ensues from police contact and may heighten community fears, in what should be a mental health response. These views are shared by the NSW Police Association:

The public mental health system and the criminal justice system must collaborate so that police officers have several alternatives, not just arrest or hospitalisation, when handling mentally ill persons in the community ...

(Police Association of New South Wales, New South Wales, Submission #59)

Comparing the situations of people with psychiatric disabilities to the general population, despite being more likely a victim of crime without restitution, people with psychiatric disabilities are more likely to: have their actions come to the attention of the police, to be charged if suspects, to be remanded to custody, to be convicted, and to get heavier sentences - especially custodial. This does not necessarily mean that people so imprisoned are guilty. According to the then Police Minister Paul Whelan, "I think people would be shocked to find out how many people have been wrongly convicted." (SMH 8 Jun 2001). He attributed much to "unethical behaviour by police". There is also now a massive problem of false guilty pleas due to it being a worse situation to press for exposition of your innocence.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

People with psychiatric disabilities are at a disadvantage in terms of police interviews, defence, communications with lawyers, self representation, understanding and communicating during court and so on due to disability (including effects of medication and prejudice concerning credibility) which exists regardless of not being currently defined as meeting status of unfitness to plea or stand trial. More could have their charges simply dismissed under Mental Health (Criminal Procedure) Act Sec 32, and this Section should be made known and available for people to use if they want - but it does mean you can't have the case heard fully, and it depends on the 'bravery' of Magistrates to act against demands for guilties, zero tolerance, 'street cleaning' and harsh punishment.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

The depressing recalcitrance of the intractable Ministries related to the criminal justice system - as evidenced by governmental responses to HREOC Social Justice Reports, Parliamentary Inquiries such as SCIPP [Select Committee of Inquiry into Prisoner Population] or Crime Prevention through Social Support, and Reports on Kariong and State Wards - has meant that issues of anti-racism, social support, prison and criminal justice reform are lost, so community suffering, prison trauma, rates of psychiatric disability and the abuse of the rights of people with psychiatric disability continue. Evidence of widespread severe problems and unmet needs are answered with singular pilot program examples, denial and so on. We suggest that the Health Department's problems would be massively reduced if the government took seriously the evidence of the community put before Parliament and acted compassionately in response to the investigations of Inquiries & Reports.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

The feedback of our members strongly indicates to us that an enormous amount of their time is spent trying to make improvements in protocols involving police and mental health services responding to mental health issues.

(Police Association of New South Wales, New South Wales, Submission #59)

The overburdened role police have been forced to bear in relation to mental health would thus be shifted rightfully back to NSW health services where it belongs and where it can be best managed by specifically trained mental health professionals.

(Police Association of New South Wales, New South Wales, Submission #59)

...police are experiencing many instances of non-compliance with the MOU and local protocols by mental health staff and hospitals ... it is open to interpretation which allows mental health professionals to be selective with what they choose to use from it to best suit their needs.

(Police Association of New South Wales, New South Wales, Submission #59)

...COS [Community Offender Services] can direct the offender to attend for treatment even if this is not a specific condition of a court or parole order. However, no provision exists for the service provider to accept the offender for treatment and, frequently, offenders experience barriers to treatment services from mainstream community agencies. Such problems occur for a variety of reasons including the philosophical issues of mandated treatment provision, the offender's particular diagnosis and/or failure of the offender to meet strict criteria for treatment provision, fear of potential harm to staff and apparent individual service interpretation of existing policy. Anecdotally, cooperative and coordinated approaches between COS and community treatment providers in dealing with mutual clients exist in some areas. However, there is a notable lack of consistency in terms of an integrative approach throughout the state.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

Policies designed to address appropriate treatment plans for offenders with mental health issues, a commitment to the plan by treatment providers and addressing factors associated with greater risk of reoffending such as stable accommodation would also serve to increase the likelihood of suitability for all community sentencing options and assist in the diversion of the mentally ill from custody. Such services require a whole-of-government partnership approach to meeting the needs of offenders, in particular those with severe psychiatric disorders and those with co-morbid substance use disorders. Service delivery agreements between agencies would allow for such cooperative case management to be formalised.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

The Police Association of NSW stated that police require more training in dealing with and recognising mental illness:

Training seems to have been improved with various courses containing segments relating to mental health, however, this does not go far enough. Despite training, police officers cannot be expected to be mental health experts. They are police men and women - not mental health professionals, and as such, their involvement with the mentally ill should be kept to a minimum ...

(Police Association of New South Wales, New South Wales, Submission #59)
6.1.8.3.7 Emergency services

Emergency services receive many calls involving assistance with mentally ill consumers. The Police Association of New South Wales expressed concern that operating procedures for all emergency services need to be revised to ensure appropriate responses. Also, emergency numbers (e.g. '000') receive many repeated, unnecessary calls from people with mental illness who may be delusional or lonely or isolated, thus tying up valuable community resources. It was suggested that strategies need to be implemented to address this:

Revised Standard Operating Procedures (SOP's) with clearer instructions should also be created for the responsibilities of police, ambulance, mental health teams, hospitals and mental health team doctors who act as assessors.

(Police Association of New South Wales, New South Wales, Submission #59)

A network of phone-backs and communication between patients and nominated contact persons has minimised impact on the emergency service organizations of unwanted and irrelevant 000 calls ... The Association recommends that the Department of Health looks towards establishing a system or process to alleviate the negative impact repeated telephone calls to 000 by the mentally ill and isolated continues to have on police responding to genuine emergency calls at the first opportunity.

(Police Association of New South Wales, New South Wales, Submission #59)
6.1.8.3.8 Employment

Access to welfare, the supported wage and finding suitable employment are all critical components in the process of social inclusion and living a meaningful life with dignity in the community. However, many concerns were raised regarding difficulties with the current welfare and employment systems and models in assisting consumers to remain in or access employment. As reported previously in this Report (Standard 4, Promoting Community Acceptance), concern was expressed regarding discrimination in employment settings:

There is a huge gap in Broken Hill in terms of opportunities for those with disabilities trying to access some form of work. Many people are also referred on to Nova from CRS Australia - the Australian Govt employment agency. A fundamental problem is that CRS will not help people that are unwell but they do not themselves recognise that employment is part of the recovery process. CRS therefore offer little or no assistance to those with psychiatric disability.

(Employment Service Provider, New South Wales, Broken Hill Forum #18)

Employers in Broken Hill have a large pool to choose from so temporary contracts of three month trials are commonplace so this situation also makes it harder for those with a mental illness. Through our experience we try to go out and canvass for work - when there is an ad there'd be 17-120 people applying for the job. The competition is high and because of the 3-month trial short-term employment seems to be the norm here.

(Employment Service Provider, New South Wales, Broken Hill Forum #22)

Liberal government has been trying to get people off DSP to save money - number of people on DSP has doubled in the last few years; plenty of older people with back and neck problems have been shifted to DSP, no programs for retraining; this has confused unemployment figures. Currently you can work up to 30 hours and keep part of your pension; under Howard's plan if you work up to 15 hours you will lose all of your DSP and only keep 15 hours pay; criteria would be are you capable of working more than 15 hours a week; if so, you would get cut off DSP. If someone has an episode at 19; gets better a few years later; if they are threatened with getting cut off if they can work more than 15 hours a week they have no incentive to work, encouraging them to simply do the easy thing and stay on DSP, rather than try and work and risk getting cut off, so they end up not trying to improve their lives, and the govt. ends up probably losing more money; people will get sick more often because they are not working (due to less self-esteem) which leads to more hospitalisations and more money spent

(Consumer and Consumer Advocate, New South Wales, Submission #169)

Unemployment rate for consumers of mental health services is 80%

(Consumer and Consumer Advocate, New South Wales, Submission #169)
6.1.8.3.9 Whole-of-government approach needed to improve outcomes for Indigenous communities

The Indigenous Social Justice Association and Justice Action raised concerns about the lack of progress on the Aboriginal Mental Health Policy and other health and related social policies to improve outcomes for the Indigenous communities and reduce discrimination and entry into the criminal justice system. Their concerns are outlined here:

We object to the lack of progress - noted by ISJA - on the Aboriginal Mental Health Policy that has been around since 1998. ISJA's President, Mr Ray Jackson, then of the Aboriginal Deaths in Custody Watch Committee, was part of the team that was assembled to work it up to an acceptable document (Long Bay forensic ward was also involved) and it is, we have been informed, still no nearer to completion or acceptance. The 1989 National Aboriginal Health Strategy, although it got to a stage of being "excellent" according to Tony McCartney of NACCHO, "but the government has failed to implement it" ("'Deadly': Indigenous Health Today", Aust. Nursing Federation, Oct 2004), which is a bad sign for the Aboriginal Mental Health Policy.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

The rate of Indigenous imprisonment has increased 205% for women and 95% for men over the last 8 years. The criminal justice system is highly discriminatory, especially in terms of race, culture and disability. As a marginalised, impoverished, disadvantaged group suffering public prejudice, over-policing and discriminatory laws and procedures, it is no surprise that people with psychiatric disabilities are so disproportionately imprisoned. This is not the fault of deinstitutionalisation, which has not been shown to have contributed to greater rates of offences by people with psychiatric disabilities.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

It must be recognised that many Indigenous people regard the Mental Health Act and associated services as another form of Policing, as being another form of 'Protector' / 'Welfare' role and as such as being abusive, and just another form of control, monitoring and interference (many others, especially from marginalised groups agree). The problem is acute at the intersection of Corrective Services and Health. This is not the peoples' attitudinal problem. It is an issue for Legislators and services to resolve to the satisfaction of the public they serve with particular regard for the rights of minorities and the disempowered. Laws and services that affect Indigenous people must be altered to recognise the rights and needs of Indigenous people. Community control and respect are vital. What is a social problem, what is a political problem, what is a cultural issue, what is an issue of trauma and grief, and what is a medical problem, and what are the solutions must be determined by Indigenous people. Ideas of individuality, family, kinship, community, land and spirituality must be respected. It is the duty of governments, departments and services to sincerely listen to, learn from and work with Indigenous people in the design and provision of law, policy and services. Every policy created through Indigenous community work has called for specific sorts of services that people not only will go to voluntarily, but that they actually want and think they need. It is a matter of self-determination, respect and justice, and it is an emergency.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

It is of great concern that the latest statistics set reported by the MHRT [Mental Health Review Tribunal] regarding involuntary treatment, CCOs [Community Counselling Order], CTOs [Community Treatment Order], ECT [Electroconvulsive Therapy] and forensic matters does not include Indigenous specific data, meaning trends can no longer be assessed and unmet needs for Indigenous specific services for people under the Act, and for the prevention of their coming under the Act, may be ignored.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)
6.1.8.3.10 Wards of the State

One presentation at the forum in Sydney highlighted the need for the Government to adequately respond, through a whole-of-government approach, to the needs of children and adolescents placed in the State's care. As indicated in the following transcript, the claim was made that gaps existed in multiple areas and that the needs of these children and youth are ignored resulting in mental health problems and serious negative life consequences:

I'm representing a large group of people with a mental illness. I was first diagnosed with a mental illness at 7 and charged with being abandoned (people who have been in the care of the state and the churches). Burdekin didn't give us much of a mention ... We state that 25 out of 1000 of children in state care attempt suicide. We are basically ignored by services. The problems are particularly acute when people leave the care of the state - thrown into their own resources after age of 18. Recommendation - audits done to see what happens to those who leave the care of the state - what is the government doing?

(NGO worker, New South Wales, Sydney Forum # 8)
6.1.8.3.11 Affordability of care - bulk billing clinicians, cost of psychologists and private health insurance

Concern was expressed throughout the consultation process that due to the lack of services available though the public mental health sector, consumers were increasingly forced to pay for care (to see psychiatrists and psychologists). Additionally, concerns were expressed that even those prepared to pay have difficulty accessing services due to long wait lists. Many people though are unable to consider such options for financial reasons, including inability to work or pay for private health insurance, and difficulties in finding clinicians prepared to bulk-bill:

...I was fortunate enough to have found a really experienced private psychiatrist who I clicked with and who was prepared to bulk bill. Before this, money was a major problem because my psychiatric disability meant that I have never been able to work full time. In the past I have tried to get some help from the private system but I could not afford private health insurance and most psychiatrists wanted to charge me more than I could possibly afford ...

(Consumer, New South Wales, Submission #327)
6.1.8.3.12 Cross-border agreements

Concern was expressed with regard to agreements between NSW and the ACT and that consumers were "falling through the cracks". Such agreements could be used to the mutual benefit of all signatories and enhance access to scarce resources and enable consumers to receive continuous and coordinated care or treatment close to their social support networks.

Concern was also expressed about the difficulty in obtaining documentation (clinical records) to provide continuity of care from Victoria to NSW. Standard 10.4 states: 'A system exists by which the MHS uses the individual clinical record to promote continuity of care across settings, programs and time':

In December 2003 ... She was in a coma for about 3-4 days before she recovered. When she recovered, she went back to the Psychiatric ward at St Vincent's [Victoria]. I had several discussions with the Doctors at St Vincent's as it was coming up to Christmas, they said they could do no more for her there, they attempted to transfer her to Nolan House in Albury. But we couldn't get Nolan House to accept her, interstate red tape.

(Carer, Father, New South Wales, Submission #102)

We feel that [X] is a victim of the cross border problem existing between the ACT and NSW. There is a dispute that he is not an ACT resident, when clearly he had an extended period of rehabilitation in the ACT before going overseas, and then returning temporarily to stay with his family prior to getting employment organised in the ACT. It is obvious that [X] will fall through the cracks yet again if suitable supported accommodation isn't found upon his release from The Chisholm Ross Centre.

(Carers, Parents, New South Wales, Submission #198)

The hospital [X, NSW] needed to get his patient history from our normal hospital in Echuca [Victoria] but there was a delay in getting this information. I tried to get his medical history for them but couldn't.

(Carer, Mother, Victoria, Footscray Forum #8)
6.1.8.3.13 Whole-of-government approach for youth

In particular, many submissions and presentations identified the paucity of services and integrated services to assist young people with mental illness or mental health problems as a serious concern (See Standard 11.4 Treatment and Support). Such coordinated services are seen as essential from an early intervention perspective to halt spiralling negative life consequences which result in homelessness, suicide, entry into the criminal justice system or separation from the family. The need for integration with drug and alcohol initiatives was seen as critical:

...the Association recommends that: ...An intergovernmental approach be developed to identify, support and build on the existing knowledge of agencies currently offering services to young people with dual diagnosis and their families / carers.

(NSW Association for Adolescent Health, New South Wales, Submission #98)

...the Association recommends that: ...NSW Health embark on a comprehensive health promotion and education campaign on dual diagnosis which includes programs targeting police, health professionals and others who work with young people with dual diagnosis issues.

(NSW Association for Adolescent Health, New South Wales, Submission #98)
6.1.8.3.14 National strategies to increase the number of mental health professionals

Concern was expressed that initiatives to address the declining numbers of mental health professionals also needed to be tackled at a national level:

There is also an urgent need for the Federal Government to increase the number of training places for mental health nurses and psychiatrists, to alleviate the chronic shortage in the mental health workforce.

(Carers, Parents, New South Wales, Submission #75)

6.1.9 STANDARD 9: SERVICE DEVELOPMENT

The MHS is managed effectively and efficiently to facilitate the delivery of coordinated and integrated services.

I have worked in the mental health sector in 4 states in Australia over a period of 20 years ... I have seen a steady decline in the situation in NSW.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

Under this Standard, submissions and presentations indicate concerns about:

  • the current state of mental health services in NSW;
  • no progress despite inquiries being conducted, reports released and recommendations being made;
  • problems identified with the loss of a coherent vision and direction;
  • lack of appropriate services;
  • poor quality of existing services;
  • lack of funding and accountability;
  • lack of funding for NGOs;
  • an inappropriate focus on the medical model for service delivery;
  • concern about relocation of community based services back to hospital sites;
  • reinstitutionalisation;
  • service development issues in rural and regional areas;
  • low regard for psychogeriatric planning and funding;
  • recruitment and retention of staff in rural and regional areas;
  • loss of clinical leadership;
  • staff issues as a result of lack of resources;
  • addressing staff shortages;
  • staff attitudes and practice;
  • need for training for all mental health workers;
  • lack of consultation with clinicians when planning and changing service delivery;
  • lack of consultation with consumers, carers and community groups;
  • the dismantling and subsequent "imploding" of working services;
  • the lack of support for research;
  • accountability; and
  • fear of repercussions for 'speaking out' on mental health issues.

6.1.9.1 The current state of mental health services in NSW

Many submissions and presentation at forums conveyed feelings of anger that since the Burdekin Report, the closure of institutions and the promise of community care, services have been seriously declining and deteriorating. They did not observe any noteworthy improvements to improve service delivery or protect the rights of consumers. The following quotes highlight these problems:

All we are talking about now is more beds. We don't want more beds - we want a system of community based care. We want early intervention in the community. We have to move from talking to doing.

(Consumer Consultant, New South Wales, Parramatta Forum #9)

Everything is so security driven now - this is a real problem.

(Consumer Consultant, New South Wales, Parramatta Forum #9)

Carers carry the burden of this system. They are used as cheap resources - this is wrong!

(Carer, New South Wales, Parramatta Forum #1)

The Richmond Report was based on good intentions but failed to provide the alternative community-based services it promised and therefore left many persons with mental illness homeless and without services.

(Police Association of New South Wales, New South Wales, Submission #59)

It is becoming obvious, that persons who previously were treated within the mental health system are increasingly being shunted into the criminal justice system. People with mental illness must not be criminalised as a result of inadequate funding for the mental health system.

(Police Association of New South Wales, New South Wales, Submission #59)

...the blaring inadequacy of our mental health system in dealing with the often forgotten mentally ill. It seems nothing has changed.

(Police Association of New South Wales, New South Wales, Submission #59)

I've been in the system for 30 years and I've never seen it so demoralised. There must be better management.

(Anonymous, New South Wales, Submission #303)

I was at the last Burdekin Inquiry. We are facing very frightening times at the moment. We are in a system in crisis and there is an enormous amount of abuse going on. The MHCA brings together an enormous number of voices but we are far from getting our human rights met. The government has failed us - all the governments have failed us. We must be absolutely vigilant that there aren't more human rights abuses committed. We're not planning for increased demand either but we know that mental illness is increasing in prevalence. We are living in frightening times which impacts on people's mental health. We are also living in bad drought times and economic downturn. All these things are affecting communities, families and individuals but the system isn't coping now with the demand and it won't cope in the future unless something is changed.

(Consumer, New South Wales, Sydney Forum #14)

In every country and state like NSW where there has been a winding down of psychiatric services there has been an increase in the prison population. Such an outcome is logical and obvious and I believe that the failure to care about what is obvious is reprehensible.

(Clinician, New South Wales, Submission #26)

Public hospitals are not really therapeutic places these days so I learnt not to expect that. They are multi-roomed holding bays where you can be safely stored until your symptoms respond to medication.

(Consumer, New South Wales, Submission #327)

...the Burdekin Inquiry, and of course not enough resources have ever been put into the community. The situation is worse now than it was some years ago. And as well, there are not enough psych beds now ...

(Family Member, New South Wales Submission #9)

Recent press statements are still saying the same things, that NSW and Australia, are allocating about 6% of the Health Budget compared to about 12% that other western countries allocate. Talk about the Lucky Country, which of course it is, provided that you Don't suffer from a Serious Mental Illness. (author's emphasis)

(Carers, Parents, New South Wales, Submission #17)

Mental health services are worse than 10 years ago

(Consumer and Consumer Advocate, New South Wales, Submission #169)

However, improvements (as well as areas still requiring attention) in the NSW mental health system were noted in the following submission:

There have been some significant improvements in the provision of services for people experiencing mental health problems since the Burdekin Report was published ion 1993.

•  Increasing development of community treatment options.
•  Improvements in medications available and how they have been used.
•  Recognition of the importance of and provision of psychological interventions (the beginnings of this).
•  The beginnings of incorporating consumers / carers as partners in service development and provision.
•  Greater awareness of mental health problems - health improvement projects such as "Beyondblue".

However, there remain areas of great unmet need and neglect.

•  Crisis in acute care provision ...
•  Dual diagnosis ...
•  Accommodation ...
•  A move away from a social view of health ...

(Clinician, New South Wales , Submission #197)

6.1.9.2 No progress despite inquiries being conducted, reports being released and recommendations being made

Concern was expressed that despite a number of inquiries and reports being produced detailing problems with the delivery of mental health service, very little had changed, or indeed, services have deteriorated. One consumer reported being "sick to death of inquiries" and one clinician stated that the continual disregard by the NSW government of the "blight of the most vulnerable members of our community" was "discrimination of the worst kind":

Since the Richmond report these resources have been taken away from people with mental illness without establishing comprehensive community and general hospital based services of equivalent value as recommended in the report. Despite numerous government reviews of mental health services since then, NSW Government has failed to act on the recommendations and continues to ignore the blight of the most vulnerable members of our community. This is a great shame and morally wrong. It is discrimination of the worst kind and hence should be also legally wrong.

(Clinician, New South Wales, Submission #25)

Did the Burdekin Report do anything to really change consumers' lives and their experiences? Well, there was a lot of noise, a small injection of funding yet really things are worse than what they were.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

I'm sick to death of inquiries, committees and the like who simply write and report, have a bit of fan fare and absolutely nothing changes. Oh let's write another policy. We don't need more policies. We need the one's we've got actually taken seriously and implanted and consequences for MHS and Staff and Directors who actually don't implant them.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

There have been many Inquiries and Reports over the years, and yet the situation does not seem to have altered much.

(Carers, Parents, New South Wales, Submission #17)

Clearly, there has been little improvement, if not a further degradation of services since the Burdekin Report in 1993.

(Carers, Parents, New South Wales, Submission #75)

6.1.9.3 Loss of coherent vision and direction

The Comprehensive Area Service Psychiatrists (CASP) Group expressed concern that the mental health system has lost direction and is working in an ad hoc manner that is inconsistent with the aims and strategies enshrined in the National Mental Health Strategy and the National Standards for Mental Health Services. The CASP Submission particularly highlighted problems with:

•  the inconsistency with the direction of the National Mental Health Strategy, Standards and evidence;
•  stalling and lack of completion of deinstitutionalisation. Stand alone institutions not integrated with local mental health services;
•  knee-jerk planning;
•  band-aiding of a failing system;
•  acute bed planning rather than MHS system planning; and
•  lack of protection and dismantling of core services

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

What is more alarming is the complete lack of vision and insight by Health in the pursuit of reducing costs above best practice research that offers solid support for resourced community teams, rather than hospital based services in reducing the impact upon the health system. The mental health system in NSW is a case in point ...

(Clinician, New South Wales , Submission #197)

6.1.9.4 Lack of services

The lack of services, both in the community and to acute care services in hospitals across NSW, was reported extensively in most submissions and at the community consultations. As discussed in more detail later in this report (particularly Standard 11.4, treatment and Support), the lack of services to deliver treatment and support from the early intervention phase to recovery and rehabilitation for many mental health disorders and problems, across the life span and across NSW, impeded the delivery of coordinated and integrated mental health services to consumers and their families and carers. This would suggest that planning is not occurring 'through a process of consultation with staff, consumers, carers, other appropriate service providers and the defined community' (Standard 9.8) and that resources are not being allocated 'in a manner which follow the consumer and allows the MHS to respond promptly to the changing needs of the defined community' (Standard 9.15).

What is needed are PROPERLY RESOURCED community based services which provide social and emotional supports, peer support and advocacy - which return to people their humanity, their dignity, their self-respect. (author's emphasis)

(Consumer Advocate, New South Wales, Submission #153)

The government in NSW is totally focused on beds as they can count beds and have starved community mental health for years. So much so that consumers are increasingly becoming unwell to the point they need actual hospitalization, thereby placing more emphasis and demands on inpatient beds and the lack thereof. So, what's our erstwhile NSW Health Minister deciding to do - increase the number of beds? Nobody seems to be able to get through that if there were adequate community mental health services, the demand on inpatient beds would actually decrease via people able to remain well or only access an inpatient when in absolute necessity, and maybe even the length of stay might even be shorter for some people.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

Even the mobile assessment teams have been reduced significantly. There's now only 1 team for the whole Central Sydney area - only 7 staff. Most of the new money announced recently by the Government was for hospital beds and forensic services. Bob Carr sees mental health as a law & order issue not a health issue. There was no money announced for community based mental health services.

(Consumer, Female, New South Wales, Sydney Forum #11)

Increasing the capacity of inpatient units and community services to guarantee 24 hour access to those in need of treatment.

(Mental Health Workers Alliance, New South Wales, Submission #325)

Appropriate crisis care, including 24 hour mental health expertise in emergency departments and community teams, to alleviate pressure on front line emergency services.

(Mental Health Workers Alliance, New South Wales, Submission #325)

Hospitals and Community Mental Health Services have to provide resources on a 24hr basis for emergency services. However these services are profoundly under-resourced and underpaid, the staff being forced to take time off in lieu rather than being paid for extended work hours. Staff on call, sometimes experiencing 6 call outs are still expected to work the next day as there are insufficient staff on the payroll.

(Social worker, Student, New South Wales, Submission #118)

6.1.9.5 Quality of services

Associated with the concerns expressed regarding the lack of services, staff and funding were reports regarding the quality of services received from those services which are operating.

We found that the therapeutic situation in the MHU [Mental Health Unit] is unacceptable in its overall treatment of people with mental illness ... We found that the management of the MHU raises issues of delinquency or malpractice, whether by inadvertence, incompetence or deliberation. We observed the MHU staff working under considerable pressure, their services being under-resourced and their numbers inadequate for their patients' safety.

(Carers, Parents, New South Wales, Submission #106)

Safety issues and adverse confrontations with patients and families relate to inadequate resources and unrealistic expectations.

(Public Sector Psychiatrists, New South Wales, Submission #297)

Dr [Z] ... who gave evidence at an inquest following the death of an adolescent 10 hours after discharge from a Mandala Psychiatric Unit, " ...funding of mental health services was not the only limiting factor. An Australia wide shortage of psychiatric staff is a major problem".

(The Coroner's Report in Carers, Parents, New South Wales, Submission #137)

We live in what everyone around the world is known as "The Lucky Country". I myself have a long history with ear problems (22 years) and the care I have received has always been better that 100%. Yet for the first time in my life, I can honestly say, that I am truly unhappy with the care my fiance` and I have received.

(Carer, Partner, New South Wales, Submission #20)

It is also very well for various legislative Acts to decide relevant standards - and we agree that it is important to have standards - but it is extremely unreasonable for services to be expected to provide additional services without additional staff or funding.

(Walgett SAAP Services, New South Wales, Submission #63)

A case manager [Y] was involved in [X]'s care by visiting him at home. This is where I become angry, [Y] failed to turn up on a number of occasions and no explanation was given, indeed I had to contact Mental Health Services to inform them he failed to come ... Despite stating to my son and I that he would see him "next week" he did not appear. This is disgusting, the people he deals with are mentally ill some may not have any family and they wait anxiously for a visit and they are left dangling, surely this could send some over the edge. My son was upset and felt he was not worth the effort for [Y] to see him. I have left messages for him before but I don't bother now as he rarely replies.

(Carer, Mother and Nurse, New South Wales, Submission #147)

My sister lives in Marrickville and sees the community centre physiatrist on bulk billing. We wanted to arrange the crisis care team (which the community centre initially told us was available) in the area to visit, at home, every couple of days to ensure things were going well that week and basically to have someone other than family provide care. BUT would you believe the response she got - they said she was a difficult case and the community centre basically did not recommend her for this service.

(Carer, Sister, New South Wales, Submission #79)

In February [2002], help was sought in a private hospital in Sydney as there was no adequate care in the public health system.

(Carer, Mother, New South Wales, Submission #88)

6.1.9.6 Lack of funding

Associated with the complaints of lack of available resources to deliver quality mental health services are requests and demands that the level and control of funding is changed in order that appropriate services are delivered and the rights of people with mental illness are protected. Funding issues were raised both with regard to Federal and State government contributions to the health budget and the provision of support services for people with mental illness and their families and carers. Claims were made that the MHS was focusing on beds (end crisis point) and not community services (early intervention) and resources were not being allocated to reflect national mental health policies (Standard 9.14) or in manner which allows the MHS to respond promptly to the changing needs of the defined community (Standard 9.15).

I have concluded that there is definitely cause for concern in New South Wales. There is good public policy but no resources to back it up.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

There is a crisis in the NSW mental health system. It is under-resourced with inadequate community support programs for the mentally ill. More funding is needed in the area of mental health ...

(Police Association of New South Wales, New South Wales, Submission #59)

Resources have continued to contract gradually and this has significant and lasting effects on the type of service we can offer.

(Anonymous, New South Wales, Submission #303)

Many of us don't find it rewarding work anymore. It's really stressful and we're expected to do more and more with less and less.

(Anonymous, New South Wales, Submission #303)

There's a really big problem with resources. In NSW we've the lowest funding of all States. We're far behind which badly impacts on our inpatients services and our community care.

(Anonymous, New South Wales, Submission #303)

Mental health is a medically neglected area. We only got about 8% of the health budget for mental health - comparable countries spend much more.

(Carer, New South Wales, Sydney Forum #13)

I want to know where will we go in the next 5-10 years? We need 9-20% of the budget for mental health. We need more money for community support. In the press release the NSW Health Department talked about community but we need the government to define what it means by community care.

(Consumer, New South Wales, Sydney Forum #15)

Current expenditure in Australia on mental health is about $3.1 billion / year - out of a total health budget of $66 billion. As of end 2002, national mental health spending fell from 6.6 to 4.5% of total health spending. This trend represents a visible lack of commitment to the mentally ill and their welfare. Available indices suggest that NSW public mental health services may be disproportionately underfunded, compared with the national picture.

(Public Sector Psychiatrists, New South Wales, Submission #297)

When I first joined the suicide prevention team I was associated with I used to ask the question - why doesn't mental health get any funding - we all used to hear about the mental health initiatives - but if there's no money, there's no treatment or care.

(Carer, Mother, New South Wales, Submission #122)

Appropriate funding for mental health by increasing the mental health proportion of the State Health Budget to at least 10%, as recommended by the National Mental Health Strategy, and for mental health expenditure to be transparent and quarantined.

(Mental Health Workers Alliance, New South Wales, Submission #325)

Insufficient Funding

•  Erosion of funding for core components of mental health services - waiting lists for case management rehabilitation and residentials

•  Siphoning of budgets by general hospitals and Area Health Services

•  Per capita recurrent funding and capital transfer and investment equivalent to New Zealand or at least Victoria required (Ref: Rosen and Manns, (2003) Who Owns Callan Park? A Cautionary Tale, Australasian Psychiatry)

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

You bet the mental health system has continually failed to meet the needs of mental health consumers - absolutely big time. However, in saying this, I also recognize the absolute starvation of mental health dollars being put into the system.

(Consumer and Consumer Advocate, New South Wales , Submission #8)

Increasing demand

•  comorbidity
•  age demographics
•  longer admissions
•  increasing involuntary admission
•  pressure on Emergency Departments
•  pressure on shrinking community mental health services
•  increasing demand on Consultation-Liaison Services

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

We need to be listened to and we can tell you what we want and need. One of them is funding.

(Consumer, New South Wales, Submission #70)

In particular, there is a chronic underfunding of community mental health teams and rehabilitation and support services.

(Carers, Parents, New South Wales, Submission #75)

It was abundantly clear though, that unless more resources are made available to our area, most of these issues will never be resolved.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

There is a need for a significant increase in Federal Government funding to increase the percentage of the total health budget spent on mental health care. This percentage should be in line with comparable first world countries. Currently it is way below that.

(Carers, Parents, New South Wales, Submission #75)

% of health budget in Australia spent on mental health is 7% (in NZ 12%)

(Consumer and Consumer Advocate, New South Wales, Submission #169)

6.1.9.7 Lack of funding for NGO services

Concern was also expressed about the quantity of services the MHS has contracted out to a poorly-resourced NGO sector. As indicated in the following quotes, many feel that the Government is simply 'passing the buck' to the NGO sector:

There has been a rapid devolution to NGOs in NSW but the degree of funding is very poor. In fact, what governments have devolved to NGOs is the problem! Such devolution is unacceptable if NGOs do not have the capacity nor the resources to deliver the necessary services. There are huge gaps in clinical services, case management.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

The Government is happy to treat NGO's as extensions of services but not fund them accordingly. In fact the Government has cut funding to NGOs and still expects that the NGO's will carry the load. I have had to put a ban on all referrals from services. We're now in a position where we are rationalising our services. We don't like it but we have to run our service within the resources we have to work with ... My service has a budget of $400,000/year but our funding hasn't increased since early 1990s.

(NGO Clinician, New South Wales, Sydney Forum #3)

Better resourcing for the non-government sector and supported accommodation, with particular attention to the plight of the homeless mentally ill.

(Mental Health Workers Alliance, New South Wales, Submission #325)

NCOSS is concerned at the inadequate services for mental health care in the community and the low level of funding for mental health NGOs ... NCOSS is receiving consistent reports of inadequate resources in specialist mental health services and in other services, which include people with a mental illness in their client group.

(NCOSS, New South Wales, Submission #47)

Governments are unwilling to fund additional positions. It appears that both state and federal governments are willing to fund 'new initiative' or to start new programs but are unwilling to provide funding for an additional staff member in an existing service - especially a NGO. Budgets just do not stretch far enough to allow additional employment.

(Walgett SAAP Services, New South Wales, Submission #63)

...the 'new initiatives' are often for 12 months. Short term programs are totally non-productive when dealing with Mental Health and AOD [Alcohol and Other Drugs] clients. It takes time to gain the trust of individuals. No sooner does a program start to achieve results, than the funding ceases. This attitude is only setting individuals up to fail - yet again.

(Walgett SAAP Services, New South Wales, Submission #63)

NGOs are most often the 'front-line' agencies who meet clients in their raw, most vulnerable state and who are expected to cope with a range of dysfunctional behaviours with little or no support. Respect from professionals would help.

(Walgett SAAP Services, New South Wales, Submission #63)

Dealing with our SAAP [Supported Accommodation and Assistance Program] clients is difficult because of the holistic approach we take to the individual. We no longer just provide them with a bed and a feed but endeavour to help them achieve their chosen quality of life ... everyone is aware that prevention is better than cure and that early diagnosis is the preferred treatment option. Government departments to allow sufficient funding in NGO budgets for an on-site counsellor who can take the case-management role.

(Walgett SAAP Services, New South Wales, Submission #63)

6.1.9.8 Focus on the medical model for service delivery inadequate

Concerns were also expressed regarding the use of the medical model as the basis for the planning and delivery of treatment and support services and that this model was limiting the protection of the rights of people with mental illness:

THE MEDICAL MODEL RULES SUPREME. The focus is always FIRST on clinical interventions, usually focused on the crisis event, with community based services coming 2nd ... Medical intervention is important, but in the long run, plays only a relatively small part in people regaining & retaining wellness. When too much emphasis is placed by government on clinical interventions, resources are disproportionately allocated to the clinical sector at the cost of too few resources finding their way into the community. The first priority should NOT be more funding for educating GPs, Help Lines or more clinical Services. (author's emphasis)

(Consumer Advocate, New South Wales, Submission #153)

One common response from the Liverpool Hospital was that soon a new facility would be built to house the Mental Health Unit, which would address our concerns. But a prudent mind will see that the new building is not the answer; it is the systems, the people and the resources that are the essential elements in order to comply with the National Mental Health Strategy and provide equity for people with mental illness and their families.

(Carers, Parents, New South Wales, Submission #106)

The trend towards medicalising further the realm of psychiatry away from the social and contextual experiences of clients continues to lead to the erosion of essential social, recreational and intensive rehabilitation based services for mental health clients.

(Clinician, New South Wales, Submission #197)

With the medicalisation of mental health services those most in need of social networks and support are left without essential services, and consequently as a community we have become increasingly dislocated, traumatised and impoverished.

(Clinician, New South Wales, Submission #197)

6.1.9.9 Concern about relocation of community based services back to hospital sites

There is a statewide drive to consolidate all community health services onto existing hospital sites in the name of "economy of scale" or the current health finance ideology of "capital-charging".

(Clinician, New South Wales, Submission #351)

Concerns were expressed regarding the recent pattern to relocate community based services to hospital sites primarily for financial reasons. It was suggested that this effectively "re-institutionalises" services and works against all the aims of community based service delivery and emphasises the medical model of mental health. Evidence was presented that suggested that this approach results in less face-to-face consultation and home visits, reduced ability of clinicians to go into the community, less communal access, and will divert people to assessments in emergency departments and hospitalised based treatments. This pattern will contradict stigma reduction campaigns and do little to assist with access to a variety of treatment and support services in the community or the promotion of the rights of people with mental illness to participate socially and economically.

At the same time, it is concluded that simply converting buildings on hospital sites does not constitute a community base.

(Clinician, New South Wales, Submission #351)

Implementation of the National Mental Health Strategy has always been problematic in NSW because of the fragmentation into largely autonomous Area Health Services. While it is hoped the 2004 reform will improve this situation, things currently look bad in the State. Community-based mental health services are in retreat, with widespread funding restrictions, cutting of 24-hour crisis services to office hours only, and pulling back of resources into the hospital system so that so-called 'community services' are in reality 'outpatient departments'.

(SANE Australia, National, Submission #302)

Apart from the crucial issue of ease of local communal access, appropriate crisis and community care depends more on team attitudes than the site of services. But there is a widespread international consensus that it is much easier to generate and maintain the appropriate attitudes on a community site, rather than a hospital based site. Further, international expert opinion concludes that a balance needs to be struck between local physical access, and critical density of staff to provide a) cover for leave, absence and professional training and b) a range of service options.

(Clinician, New South Wales, Submission #351)

Newcastle Mental Health Services have received a new director in recent years. This has brought changes, which now see a more top heavy, less operative approach to mental health in the area. There are now less staff for face-to-face consultations and so less home visits. There is now a centre-based service with reduced ability to go into the community.

(Anonymous, New South Wales, Submission #156)

I was notified late on 15 September 2004, that Northern Sydney Area Health Service now favours a proposal to transfer all the staff and facilities of Cremorne and Chatswood Mental Health Centres, Westview Consumer Services, and our Assertive Rehabilitation/Recovery service as soon as possible to a defunct paediatric ward on the Royal North Shore Hospital site. This temporary placement will last 5 - 10 years and then NSAHS's plan is to move the entire Lower North Shore Community Mental Health Service into a generic community health precinct on hospital grounds ...

(Clinician, New South Wales, Submission #351)

This is planned ostensibly because NSW Department of Health and NSAHS do not wish to spend the $4 million required to refurbish or rebuild the Chatswood site to a reasonable standard, nor will they consider retaining the Cremorne site. It is clear that NSW Department of Health and NSAHS wishes to sell the Chatswood and Cremorne Community Mental Health sites, worth respectively upwards of $10-12 million and $3 - 5 million at conservative estimates provided to NSAHS. Only a small fraction of this will be spent on merging and squeezing existing Community Mental Health facilities into a generic community health hospital precinct. Capital resources presently dedicated to Mental Health will be reabsorbed into NSAHS's contribution to its general hospital redevelopment funds. This is similar to the loss by stealth over the last 15 years of Gladesville and Macquarie psychiatric hospital sites to general health administration, etc. This has occurred without recompense to Mental Health, and without reprovision of the full range of community and general hospital based acute, residential and day rehabilitation facilities which are missing from most catchments in NSW, but are present throughout Victoria (see Report on Site Visit to Victorian MHS and "Who Owns Callan Park", attached).

(Clinician, New South Wales, Submission #351)

Our NSAMHS Area Director argues that siting Ryde CMHS on the edge of a hospital site has not compromised its operation. However ... it will no longer provide the degree of communal access that Professor Jim Lawson envisaged - for instance when he acquired the Chatswood site - in a residential setting near major shopping, bus and train hubs, or with the Cremorne site, straddled between residential and shopping zones on a major local transport route.

(Clinician, New South Wales, Submission #351)

Ultimately, OH&S and economy-of-scale arguments can be extended to banning all community health centres and all home visits. The appropriate path is to make community work as safe as possible, to screen and divert most assessments and initiation of treatment away from Emergency Departments, and then use Emergency Departments in exceptional, highly ambiguous or emergency circumstances only, or to assess mixed medical / psychiatric emergencies.

(Clinician, New South Wales, Submission #351)

It is not too difficult in reality to accommodate OH&S concerns while maintaining community based services. We could be forgiven for suspecting that this concern is simply a screen for the dominant drive to economically rationalise services, and to realise assets occupied by mental health services for general health purposes.

(Clinician, New South Wales, Submission #351)

The randomised control evidence clearly favours community and home based mobile extended hours crisis services over hospital based assessment and initiated treatment (see references). We are told by our Director of MHS, NSAHS that all the arguments for having community mental health services on community sites are purely "ideological". Well, no one side of such a debate has a monopoly on ideology. Further, although some of the evidence for local community siting is indirect, there is no evidence-base whatsoever for siting all community mental health services in hospitals. Wherever a difference can be inferred directly or indirectly from the evidence, it is in favour of community-based teams. Though it is important to be cautious and not to overclaim in extrapolating from the literature, this general trend is fairly consistent and not "in contention" as stated by our Area Mental Health Director.

(Clinician, New South Wales, Submission #351)

In fact, continuing capital investment in dedicated mental health facilities ensures the continuing existence of mental health services, rather than their continual erosion, dilution and ultimate merging again with generic outpatient services.

(Clinician, New South Wales, Submission #351)

Meanwhile, mental health services do not have sufficient resources to bring the fabric of community mental health centres up to acceptable community standards. They are generally left in poor repair until they rot and become unsafe. Then there is a sudden but predictable panic to bring these services back to a hospital site. Neither are capital resources allotted to providing the range of community based residential drop-in, rehabilitation, residential, dual disorder, personality disorder and forensic facilities that are provided locally or regionally throughout Victoria and New Zealand.

(Clinician, New South Wales, Submission #351)

On the very local level at the Lower North Shore, the decision to close Cremorne Mental Health Centre means a loss of badly needed community based mental health services. If NSW Government had adequately funded the service the Centre would be offering a comprehensive program supporting recovery and independent living in the community to consumers and their carers. Instead the Centre has lost 10 members of staff due to lack of funding and service users are expected to travel long distances by public transport to a new temporary centre (temporary at the cost of $ 4.6 million) that is to be built in Chatswood. Many consumers are not well enough to travel long distances, frequently not even short distances by public transport. This means that the carers have to drive them or service providers have to visit them at home on a continuous basis. Neither one of these alternatives foster independence but dependency and poor self image. It also adds to the burden of caring. It is another obstacle to access the services.

(Clinician, New South Wales, Submission #25)

6.1.9.10 Reinstitutionalisation: more acute beds and forensic facilities and less community based care

Concern was expressed about the focus on increasing the number of acute beds, the building of a forensic unit at Long Bay Gaol and the recent pattern to relocate community based services to hospital sites primarily for financial reasons. It was suggested that this effectively "re-institutionalises" services and works against all the aims of community based service delivery and emphasises the medical model of mental health.

The crisis in community mental health services is misrepresented by politicians and the media as a 'bed crisis,' leading to creeping reinstitutionalisation as the Health Department knee-jerks with more beds as the principal response.

(SANE Australia, National, Submission #302)

Latest funding announcement for NSW Mental Health announced $241 million - most was for inpatient services. Most were already announced funds, and most was allocated to building a forensic unit at Long Bay Gaol - thus NSW put more priority on gaoling consumers with psychotic illnesses rather than for health facilities in the community - Bob Carr treating mental illness as a law & order issue, not a health issue.

(Consumer and Consumer Advocate, New South Wales, Submission #169)

6.1.9.11 Service development issues in rural and regional areas

Many concerns were raised at the forum in Broken Hill regarding the lack of services in rural and regional areas of NSW. Many consumers and carers spoke of the absence of any services to access, especially after hours, and their only options were at a great distance away; due to the scarce number of services and clinicians, these services were also difficult to access (e.g. long waitlists). Concerns were also raised that planning and resource allocation for services located in rural and regional areas needs to consider a multiplicity of factors that may hinder the operation of such plans or not cater appropriately for the differing needs of those communities. For example, as mentioned above, the recruitment and retention of staff in rural areas, higher rates of unemployment and the ageing population:

Our area has 12% of the population but receives 6% of the funding. We don't have anywhere near enough resources, enough staff or enough beds! We don't even have enough basic services!

(Carer, New South Wales, Parramatta Forum #1)

Murray, Judd et al (2004) have recently demonstrated in Australian rural settings that locations of mental health services with greater access to services and social interaction were statistically associated with higher levels of subjective wellbeing or resilience dimensions for individuals with mental illness.

(Clinician, New South Wales, Submission #351)

In Broken Hill the mental health services and the counselling services are combined which is the only area in NSW where the services are combined. The model is not the problems it the fragility of the location - the service could be good one moment and then in crisis the next.

(Clinician, New South Wales, Broken Hill Forum #16)

There are 4 teams operating in the local area including Broken Hill, Deaton, Bourke and Lightening Ridge. Broken Hill is probably the best as access to supporting services is much worse in the other locations.

(Clinician, New South Wales, Broken Hill Forum #16)

The Richmond Fellowship has been helpful for people with disabilities and housing. Certainly problems in employment, particularly in rural areas, make it more difficult for local people.

(Clinician, New South Wales, Broken Hill Forum #17)

Broken Hill has an ageing population. There is a demographic shift in Broken Hill which means there is an increasing older population and decreasing younger population as many move away to seek higher education and build there lives in other places where they can find work and hope.

(Clinician, New South Wales, Broken Hill Forum #25)

I would hate to see [X]'s death be in vain, I would like to see an inquiry into the mental health system in country areas, the type of things addressed would be a decentralised mental health facility to deal with long term problems. Specifically set up in major country areas.

(Carer, Father, New South Wales, Submission #102)

6.1.9.12 Psychogeriatric planning and funding

A number of clinicians expressed their concerns that the level of funding allocated to the provision of mental health services to the aged population across NSW was particularly poor and there was inadequate psychogeriatric needs assessments or planning in NSW:

I have concerns about the relative lack of attention that has been given to the needs of older people in Australia who have mental disorders or problems.

(Clinician, New South Wales, Submission #264)

There is a lack of financial equity. The elderly make up 13% of the population. It is hard to obtain accurate figures but it appears that in most Areas, older people do not receive their 13% share of the budget.

(Anonymous, New South Wales, Submission #303)

One reason for the relative lack of attention is that surveys of Australians (such as the Mental Health and Wellbeing survey conducted in 1997, published 1998) have used investigative schedules that are not appropriate for questioning older people. What's more, that large and expensive Mental Health and Wellbeing survey was methodologically flawed ... In spite of the flaws, governments in Australia have cited the survey as evidence that older people are less likely to need mental health services than younger people. For example, the survey has been quoted in NSW Department of Health literature concerning the allocation of resources.

(Clinician, New South Wales, Submission #264)

There was a Mental Health for Older People Committee convened by the Centre for Mental Health, which produced a 250 page report in 1998. This report never saw daylight and was shelved. A 24 page summary policy was developed before the 1999 election, but sadly did not reflect the large report.

(Anonymous, New South Wales, Submission #303)

It is true that some areas don't have old age psychiatrists but this is not because of a shortage of them; it is because some areas have tried to get away without creating specialist positions specifically for old age psychiatrists, possibly again because of conclusions from flawed studies. However, there are certainly too few nurse and social worker and occupational therapist positions in old age psychiatry teams ...

(Clinician, New South Wales, Submission #264)

Another NSW committee has been formed including some excellent clinicians and bureaucrats. Hopefully soon we will see some more resources eventuate. One initiative has been the establishment of Areas Coordinators Of Specialist Mental Health Services For Older People, with $1.6 million across NSW to fund these positions. We are yet to see what these positions will achieve but it is at least one small but positive step.

(Anonymous, New South Wales, Submission #303)

Despite all of this, NSW still does not have a good psychogeriatric plan. VIC and QLD are doing much better. VIC spends more per capita on mental health in general and for older people in particular. VIC has psychogeriatric homes. We had the 9 Cade homes previously but 2 closed so we're only left with 7.

(Anonymous, New South Wales, Submission #303)

...some administrators have argued that Mental Health should not be responsible for dealing with cases of dementia. They have argued that dementia is not a mental disorder ... In my view, psychiatry should look after people referred for specialist assessment and/or care because of dementia unless they are non-ambulant and have other reasons for needing the involvement of geriatric services.

(Clinician, New South Wales, Submission #264)

I think there is real potential for the Commonwealth and State Governments to work together and put in joint funding, which is what VIC is doing. VIC has also put a lot of funding into memory clinics.

(Anonymous, New South Wales, Submission #303)

Another deficiency in our system ... is the lack of availability of old age psychiatry teams to be involved in psychiatric and behavioural programmes in aged care facilities. We wanted to set up such an arrangement in our sector in Sydney, but when the money was allocated to our area it was diverted to paying for another half-time old age psychiatrist.

(Clinician, New South Wales, Submission #264)

6.1.9.13 Recruitment and retention of staff in rural and regional areas

Lack of funding and resources were identified as part of a package of problems in recruiting staff to fill vacancies in rural and regional areas. Inability to attract and retain staff in rural and regional areas was also identified as a significant problem for continuity of care (See Standard 8.1):

It is acknowledged that the people currently employed are very good but it is hard to get staff to locate to Broken Hill. Overall the system in Broken Hill needs more people with more training.

(Carer, New South Wales, Broken Hill Forum #1)

Recruitment and retention of staff is very hard as the service can not afford the high wages and benefits required to attract people to come and stay to work in Broken Hill.

(Service Provider - representing the Director of Mental Health in the Far West, New South Wales,
Broken Hill Forum #14)

Not many staff that come out to Broken Hill actually stay for a long period of time. They have managed to attract some resident psychiatrists to Broken Hill but they all seem to leave as soon as they have completed their residency. The service is attempting to increase the specialist mental health workforce and hope to have increased numbers in the future.

(Service Provider - representing the Director of Mental Health in the Far West,
New South Wales, Broken Hill Forum #14)

The recruitment of staff is a huge problem - we can't offer staff incentives to work in this rural area - we get quite a lot of intern psychologists and then they leave after 12 months. We hope to offer some training incentives.

(Service Provider - representing the Director of Mental Health in the Far West,
New South Wales, Broken Hill Forum #14)

Staffing levels are probably at the best for the last 6 or 7 years however about 6 of the team are in their first 18 months of work so they are young team.

(Clinician, New South Wales, Broken Hill Forum #15)

Normally the mental health worker works as a specialist working in a consultative role. The mental health worker would consult with other specialists to address a specific area of expertise and need. We are considering how we can encourage some workers to develop a second area of expertise and we are hoping the Department of Health for NSW would provide some funding for this to happen. There is a tour of duty mentality for workers in Broken Hill where they come, do their time in a rural area and leave.

(Clinician, New South Wales, Broken Hill Forum #16)

6.1.9.14 Loss of clinical leadership

The Comprehensive Area Service Psychiatrists (CASP) Group also expressed concern that there has been a trend, which the group believes is likely to continue, to destabilise many permanent Directors or Clinical Directors and that this is resulting in unnecessary resignations and the loss of clinical leadership:

Loss of psychiatrists as permanent Director or Clinical Director (f/t or substantial p/t) in many sectors / areas of NSW, including:

•  Prince of Wales / Eastern Suburbs
•  St Vincent 's / Kings Cross
•  St Georges
•  Manly / Northern Beaches
•  Bankstown
•  Wollongong / Illawarra
•  Campbelltown
•  Albury
•  Gosford / Central Coast Area / Sector
•  Hornsby-Kuringai Hospital and Sector

Other directors / clinical directors are currently being destabilised, and are likely to resign if this does not cease.

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

6.1.9.15 Staff issues as a result of lack of resources

There are also real problems with the workforce. Medical graduates are just not going into mental health. Who can blame them if they see this as the model?

(Anonymous, New South Wales, Submission #303)

Lack of resources, high demand and overstretched staff is also seen to be contributing to high staff turnover, low morale and impacting on attitudes and behaviour of staff. All of these factors impact on the ability of the MHS to deliver 'a range of high quality mental health treatment and support services (Standard 11.4) and protect the rights of people with mental illness and mental health problems'.

Because of the budgetary restrictions that have been imposed on us there's a freeze on new positions. What this means is that I can't be critical of staff who may not be ideal because if they leave we can't replace them! What do we do?

(Anonymous, New South Wales, Submission #303)

Many times it is a case of identifying good workers and targeting them for assistance as you know they will try and do their best. This puts a drain on these workers but people in need really are in crisis and they need help.

(NGO Worker, New South Wales, Broken Hill Forum #5)

As I said before, the administrative burden has increased significantly at the same time as bed numbers have been reduced. It's a vicious circle, a negative feedback loop - the more people (clinicians etc) who leave the more the increased workloads fall on those who are left behind. Then of course, they leave! This is happening at a consultant and registrar level and it is compounded by the declining entry into psychiatry of trainees.

(Anonymous, New South Wales, Submission #303)

Staff on call, sometimes experiencing 6 call outs are still expected to work the next day as there are insufficient staff on the payroll. Therefore high turnover rates are also a problem. Those that work in this industry are those that are compassionately aware of their clients needs and quite often feel helpless in being able to assist."

(Social worker, Student, New South Wales, Submission #118)

Don't get me wrong it's not that I think all government workers and hospital staff are incompetent, they are bound by a resource strapped, inefficient bureaucratic framework.

(Carer, Daughter, New South Wales, Submission #134)

Committed workforce becoming demoralized and leaving:

•  loss of medical directors / psychiatrists / registrars
•  loss and aging of mental health trained nursing staff
•  hospitals removing RMO's [Resident Medical Officer] from working in Psychiatry - loss of replacement recruiting ground
•  unreasonable and destructive bureaucratic pressures upon clinical practice and leadership
•  perceived media and government fuelled "blame" culture and "lock-em-up" mentality

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

Mental health services in this State have been in crisis for a long time and the chronic under-resourcing of this sector is responsible for an unacceptable decline in working conditions for the police, ambulance officers, nurses, doctors, allied health staff and security officers who are attempting to provide safe care and humane treatment for this vulnerable group.

( Mental Health Workers Alliance , New South Wales , Submission #325)

We have experience of working with a social worker dealing with people with mental health problems and this social worker was burnt out in 3 weeks due to the demand on their time.

(NGO Service Provider, New South Wales , Broken Hill Forum #13)

...less staff than 10 years ago, worse attitudes towards patients among staff (from nursing staff and consumer representatives); morale in mental health services is very low, due to bad conditions and lack of funding

(Consumer and Consumer Advocate, New South Wales , Submission #169)

6.1.9.16 Addressing staff shortages

Concern was expressed about the shortage of supply of mental health professionals, loss of key staff and retaining those currently employed. Concern was also expressed about the current strategy to address recruitment and retention problems by hiring Visiting Medical Officers (VMO's) and that the broader picture of service delivery and other strategies need to be examined.

Visiting Medical Officers

•  Loss of supervising and system building psychiatrists

•  Can't build service out of fragments of VMO time, doing only direct clinical work. Even major metropolitan services are now trying to limp along with poorly coordinated "VMO de jour" arrangements.

•  Often no regular communication, peer review or calibration of clinical practices

•  Need wide job description encompassing full range of work required.

•  Can't retain staff specialists as attracted to more lucrative VMO sessions advertised in some areas.

•  If service has to rely increasingly on VMO's, funding for other staff shrinks

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

Addressing the problems of recruitment and retention in the sector by providing incentives to enter employment, enter training schemes, supporting learning and development.

( Mental Health Workers Alliance , New South Wales , Submission #325)

Loss of key staff is an urgent problem in NSW, brought about by demoralisation and 'ageing out'. Immediate action is required to recruit and retain psychiatrists, nurses and other mental health professionals - including creating a positive, recovery-focused environment in which to work.

(SANE Australia , National, Submission #302)

6.1.9.17 Staff attitudes and practice

Concerns were expressed about poor staff attitudes towards consumers and carers indicating that staff may be in need of training in order to change their attitudes and behaviours and be more supportive when dealing with people with a mental illness:

Encountered rude and uncaring attitudes by staff.

(Carers, Parents, New South Wales, Submission #106)

There are many accounts of stigmatising and inappropriate treatment of mental health clients by some staff within the ESMHP [Eastern Suburbs Mental Health Program]. The manner in which people are spoken to, comments and remarks made are suggestive of a significant problem within the service.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

We believe that staff must receive training from consumers and carers, designed to raise awareness of perspectives of their care, attitudes, and practices.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

We need to charge the attitudes of the people who are providing care.

(Former consumer of mental health services, New South Wales, Sydney Forum #12)

Lack of communication between staff, and with parents.

(Carers, Parents, New South Wales, Submission #106)

Most mental health staff don't like working with a lot of older people so admitting them to general psychiatric wards does not result in good treatment as those staff become resentful at the number of older patients. This is another reason for having separate dedicated psychogeriatric wards.

(Anonymous, New South Wales, Submission #303)

Also no amount of dollars equates to good staff practice and there are many, many instances where the situations that consumers find themselves in have more to do with actual poor staff practice than inadequate funding.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

Feedback we receive from people with a diagnosis of Personality Disorder suggest that they are being treated badly by staff (e.g., staff are irritable towards them, their concerns being dismissed as part of their illness, they are characterised as manipulative) ... We request that the MHS considers conducting an evaluation to determine how people with a diagnosis of Personality Disorder experience ESMHP services, and address staff attitudes towards these consumers.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

[My psychiatrist] did lots of things that were useful. These included showing me my file everyday ... Staff felt a bit threatened I am sure but it meant that people had to take greater responsibility for the language that they used and this was really beneficial for me. He also took up issues for me and treated my complaints, even the very little ones, seriously ...

(Consumer, New South Wales, Submission #327)

Many young people in the focus groups described their first experiences with health professionals and authority figures as unpleasant, frightening, coercive and humiliating, which subsequently had a profound effect on their attitudes to future dealings with health professionals. Young people said:

...It broke my spirit ...

...Humiliation ...

...It took away my rights ...

(NSW Association for Adolescent Health, New South Wales , Submission #98)

6.1.9.18 Need for training for all mental health workers

Standard 9.17 states: 'The MHS regularly identifies training and development needs of its staff' (for example with reference to industry-validated core competencies for mental health staff) and Standard 9.18 states 'The MHS ensures that staff participate in education and professional development programs'. Concerns were expressed regarding the lack of comprehensive, standardised training for all mental health workers and problems with service demands to release staff to attend training based on identified needs or professional development.

I would like to raise an issue that I believe has contributed significantly to the decline of the standard of service provision in MH facilities (community and inpatient): the absence of a comprehensive, standardised training program for all MH workers.

(Anonymous, New South Wales, Submission #71)

Other than training provided at undergraduate level (which is known to be very limited and variable in quality and quantity for all disciplines), or short distance-based post-graduate courses, there is no comprehensive, skills based training program for non-medical staff working in MH. The only long-term programs are available through the stand-alone facilities such as Rozelle and Macquarie, and are limited to staff employed there. The bulk of staff accepting employment in MHS in NSW do not have a baseline of core knowledge, and are required to attain this on the job. The variability of opportunities for mentoring and models of practice on the job means that someone could be working in MH for some years without fundamental training in the principles and practice of MH care. This means that shared standards of practice and conceptual frameworks amongst and between disciplines is non-existent, resulting in inconsistencies in practice and outcomes.

(Anonymous, New South Wales, Submission #71)

I believe the Centre for MH should commission a training organisation (?Institute of Psychiatry) to develop a standardised training program aligned to the one provided for Psychiatric registrars, that would provide the baseline training for all staff working in MHS in NSW.

(Anonymous, New South Wales, Submission #71)

Numbers of trained and experienced staff have been critically reduced, a trend which has been superimposed on chronic understaffing. This is so for most categories of mental health professionals, but particularly psychiatrists, psychiatric registrars and nurses. An additional problem is the limited pool of professionals that can be recruited to the field, even if money were available. As a consequence of these factors, viability of overtime rosters is in jeopardy, risking the safety of patients and registrars. Also, rosters are becoming increasingly onerous for consultants.

(Public Sector Psychiatrists, New South Wales, Submission #297)

There are more fundamental issues that bear on mental health and mental health problems; there are issues around the priority given to mental health by all the human service and related systems. For example, look at the training of general nurses, and of the many of the specialities in medicine. In many of the latter mental health is critically important yet mental health does not feature in the training programmes, I am thinking especially of physicians and paediatricians. But there are others. The same could be said of lawyers and police. Some of the most intractable problems I have found in caring for some young adults with mental illness are the way the justice system and police have treated them, and other systems like housing and income support.

(Anonymous, New South Wales, Submission #125)

Service demands (e.g. registrar rosters) jeopardise training requirements.

(Public Sector Psychiatrists, New South Wales, Submission #297)

There is a lack of diversity in work experiences.

(Public Sector Psychiatrists, New South Wales, Submission #297)

Barely workable registrar rosters jeopardise registrars' training requirements and / or mental health, leading to resignations, negative perceptions of psychiatry, and problems with recruitment and retention. The current pattern poses a growing risk to a sustainable, home-grown psychiatric workforce for the public sector in the future.

(Public Sector Psychiatrists, New South Wales, Submission #297)

6.1.9.19 Lack of consultation with clinicians and service providers when planning and changing service delivery

Concerns were also expressed that clinicians and service providers are not being consulted about key changes to service delivery even when they are directly responsible for associated budgets and delivery of such services. Standard 9.8 states 'The strategic plan is developed and reviewed through a process of consultation with staff, consumers, carers, other appropriate service providers and the defined community'. However, as the following quotes highlight, this is not always occurring:

There must be better management. We are carrying all the responsibility but no authority for budgets. We only know when it gets cut.

(Anonymous, New South Wales, Submission #303)

I was not notified about the nature of and was not included in the [Y] Area meeting ... which made this decision, although I was on duty and available to participate ... Such unfortunate decisions have enormous clinical implications for the operation of our mental health services, and should not be made administratively without the input and agreement of the clinical director of our service.

(Clinician, New South Wales, Submission #351)

In her conceptual diagram of the new Acute Mental Health Service Models at a combined Northern Sydney - Central Coast Area workshop at Hornsby RSL Club on 30th July 2004, Consultant [y] proposed that Emergency Dept. Mental Health Triage and Assessment Team, and the Psychiatric Crisis and Acute community care teams, a Psychiatric Emergency Suite should be concentrated within Emergency Departments. Central Coast MHS have already operationalised such a plan, apparently to meet severe Emergency Department pressures, having had to concentrate their "front end" crisis services in Emergency Department at the expense of their so-called "back-end" (continuity of care and rehabilitation services) which they have sorely depleted. [Y] has not amended this hospital centred model in the consultative document September 2004, despite detailed concerns expressed at and since this workshop.

(Clinician, New South Wales, Submission #351)

Agencies in this community are wondering, when we have shown a willingness to advocate for more funding and better resources for mental health services in this area, why we have encountered strong resistance from the ESMHP [Eastern Suburbs Mental Health Program] to work with us in direct and open partnership; address inadequacies, creating better outcomes for consumers, their families and friends, and the community generally.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

We request more direct communication from the ESMHP, so we can have more direct involvement in creating effective and timely strategies to address early intervention and continuity of care issues for people living with mental illness in our area.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

We are attempting to work collaboratively with the ESMHP, in accordance with National and State policies, to address individual and systemic issues. We want to do this effectively, and we want this collaboration to commence now. We are requesting the ESMHP to select senior representatives to meet with us on a monthly and ongoing basis, to address issues, and to establish a transparent and accountable process of joint consultation.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

6.1.9.20 Lack of consultation with consumers, carers and community groups

Concerns were also expressed that consumers, carers and community groups are not being listened to (and that they have a right to be heard) and are tired of consultations which result in no changes and are not meaningful. Standard 9.8 states 'The strategic plan is developed and reviewed through a process of consultation with staff, consumers, carers, other appropriate service providers and the defined community' and Standard 9.9 describes the process for such a plan (e.g. consumer and community needs analysis and a service evaluation plan including the measurement of health outcomes for individual consumers). These concerns suggest that even when consumers and carers are involved such processes are not being adhered to in a meaningful way and also indicate that criteria listed under Standard 3 (Consumer and Carer Participation) are not being met.

The decision to close Cremorne Mental Health Centre illustrates NSW Government attitude towards people with mental illness and their carers; they don't matter. This same attitude was demonstrated by [the Director of ... Area Health Services] today when he called the representatives of concerned community groups as rubble rousers to their face and warned them not to kick a fuss or they might be worse off.

(Clinician, New South Wales, Submission #25)

We request that the ESMHP is more inclusive of consumers, carers and service agencies, in relation to the development of future Strategic Plans.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

6.1.9.21 The dismantling and subsequent "imploding" of working services

The Comprehensive Area Service Psychiatrists (CASP) Group expressed concern that the government is dismantling and "imploding" functional services, thus reducing the capacity of the mental health system to deliver treatment and support services to consumers and their carers and families. The CASP Group gave the following as examples:

The dismantling and subsequent "imploding" of Working Services

•  South-Eastern Sydney
•  St. Vincent's / King's Cross: loss of virtually all psychiatrists, registrars, resident medical officer
•  St. Georges: loss of psychiatrists
•  Illawarra: closing mobile crisis services after 9 - 5, M-F
•  Northern Sydney - Amalgamation, merging and contracting of RNS and Ryde award-winning nationally renowned services. - loss of community staff
•  Central Sydney, Northern Sydney, Central Coast, Far West etc: Retreat from community sites to hospital sites for community mental health services
•  Cumberland Hospital and Community Services - staff shortages - working to clinical standards
•  Nepean Hospital and Community MHS - demoralised and administratively harassed staff

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

A good example of services being driven by administrative efficiencies not by consumer focus is the centralisation of services in the Northern Sydney Area of Mental Health including reduction in community based mental health services. Whilst a huge area of Central Coast is added to the Northern Sydney Area of Health including Mental Health this Area becomes the biggest in NSW with a population well over 1 million. At the same time Lower North Shore and Ryde Sectors of Mental Health are amalgamated. It is said that these are only administrative moves. Not so, they bring more hierarchy to the structure, making it more top heavy and more funds has to be directed from the coal face to administration. There is no way that this would not have an effect on the service delivery.

(Clinician, New South Wales , Submission #25)

6.1.9.22 Lack of support for research

Two submissions expressed the view that more funding needs to be allocated to research to improve the mental health of the community. According tho Standard 9.31, 'The MHS conducts or participates in appropriate research activities' and Standard 9.30 states 'The MHS routinely monitors health outcomes for individual consumers using a combination of accepted quantitative and qualitative methods'.

...lip service is paid to supporting research in the public health system, This is a real problem too. For example, we don't have proper space for our own research - we have to inspire graduates somewhere! We are given little recognition for the research that we do and it seems to be viewed by some as detracting from the real, i.e. clinical, work.

(Anonymous, New South Wales, Submission #303)

...the Association recommends that: ...Further Australian specific research be funded into the epidemiology and aetiology of dual diagnosis with specific focus on young people, and including the issues for culturally and linguistically diverse (CALD) background, same sex attracted and Indigenous Australian populations..

(NSW Association for Adolescent Health, New South Wales, Submission #98)

6.1.9.23 Problems with accountability

The Comprehensive Area Service Psychiatrists (CASP) Group expressed concerns with the culture of cover-up in the NSW mental health system and that existing monitoring systems were being misused. Concerns were also expressed by Eastern Area Interagency NSW and NCOSS:

Culture of Cover-Up in NSW Mental Health Services

•  Clinical Leaders are necessary focused on providing the best possible quality of clinical services.

•  There is pressure from Area Administrations to cover-up shortfalls in clinical services, which come as result of diversion of resources to area administrative positions.

•  Administrative Managers have been increased and highly committed clinical leaders have/are being extruded from the mental health service system. Administrative managers are under pressure to sanitise or downplay the deficiencies in local mental health services.

•  Clinical leaders are either ignored or bullied and disciplined for speaking up internally within their Area Health Service about the adverse impact of area management's decisions on clinical services.

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

We, local service agencies, have encountered, over a significant period of time, a culture of defensiveness; aggression; lack of communication; personal retribution; refusal to answer reasonable questions; refusal to work with us; and totally inadequate complaints procedures from our local mental health service.

(Eastern Area Interagency NSW, New South Wales , Submission #100)

Abuse and Misuse of Existing Monitoring Systems

•  Misuse and abuse of the Australian Health Care Standards Accreditation process and of the National Mental Health Standards, and annual National Mental Health Reports, allowing the dismantling of local 24 hour mobile community mental health services, and the reclassification and reporting of increasingly sedentary "psychiatric out-patients" as "community mental health care"

(Comprehensive Area Service Psychiatrists (CASP) Group, New South Wales , Submission #350)

There are many concerns that many of the National Standards for Mental Health Services are not being implemented by the ESMHP, as indicated by actual outcomes for consumers, carers and relevant services within the community. We are deeply concerned that there appears to be a culture of non-reporting to the community about the progress of National Standards implementation; and the results of any independent evaluations of the ESMHP's performance against the National Standards (eg EQUIP Survey).

(Eastern Area Interagency NSW, New South Wales, Submission #100)

NCOSS receives regular reports that money ear marked as mental health funds has been spend on other areas. In some cases this is a transfer of funds, in others it occurs through disparity in the overheads charged to mental health and other Area Health Service activities. These overheads range from 25% - 45%.

(NCOSS, New South Wales, Submission #47)

Finally now, in 2001, 2002, and 2004 more deaths and abuse of patients by administrative psychiatry has been exposed in a Parliamentary inquiry. The reckless behaviour of management in reducing mental services to a hazardous level is in my eyes tantamount to the tortuous notion of 'negligence by omission to act'.

(Clinician, New South Wales, Submission #26)

These episodes are arguably the result of the Richmond Report delivered in NSW being run to its terminal point and beyond, accompanied by blind acceptance by empire building administrators and ignorant politicians with the able assistance of some psychiatrists. I realised that major bed shortage has been the widespread result in western countries of the application of economic rationalism. However NSW had more than a simple shortage by 2001 and continuing into 2004.

(Clinician, New South Wales, Submission #26)

We request access to the current Strategic Plan for ESMHP, including information regarding the budget and expenditures for the last two years.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

6.1.9.24 Fear of repercussions for 'speaking out' on mental health issues

Concern was expressed that if service providers "speak out about mental health issues" then their clients will be denied acute care services. :

There is a strong perception that if local Services speak out about mental health issues, they are being denied acute care service for their clients. Agency staff are often not trained mental health workers, but feel that they are left to manage acute care because the ESMHP does not take responsibility for providing a timely service when it is needed.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

6.1.10 STANDARD 10: DOCUMENTATION

Clinical activities and service development activities are documented to assist in the delivery of care and in the management of services.

Neither should a patient or close person have to take out an FOI [Freedom of Information] to get information regarding treatment as we have suggested such things should be available to the patient at MHRT [Mental Health Review Tribunal] hearings and so on.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales , Submission #349)

Under this Standard, submissions and presentations indicate concerns that:

  • often clinical documentation fails to provide a comprehensive, factual and sequential record of treatment and support.

The above concern also indicates that individual care plans are not being developed with or being made available to the consumer according to Standard 11.4.8 ('there is a current care plan for each consumer, which is constructed and regularly reviewed with the consumer and, with the consumer's informed consent, their carers and is available to them').

6.1.10.1 Documentation is not comprehensive

Standard 10.5 states: 'Documentation is a comprehensive, factual and sequential record of the consumer's condition and the treatment and support offered' and Standard 10.6 states 'each consumer has an individual care plan within their individual clinical record which documents the consumer's relevant history, assessment, investigations, diagnosis, treatment and support services required, other service providers, progress, follow-up details and outcomes'. Concerns however were expressed that documentation was not comprehensive and treatment plans were often not acted upon as the plans were not recorded in the treatment notes.

Treatments discussed were not acted because proper treatment notes were not recorded.

(Carers, Parents, New South Wales, Submission #106)

He made notes of the first meeting but not the second as he said he did not have enough time to do so. Statement made by treating doctor of events during inpatient care at Mandala Psychiatric Unit after admission of [X] after two suicide attempts and prior to discharge (and suicide 10 hours after discharge.

(The Coroner's Report in Carers, Parents, New South Wales, Submission #137)

During December 2001 and January 2002, we had a number of discussions and conferences with the MHU Psychiatric Registrars and with Dr [Y], Director MHU. Our experience with these people was that no follow-up occurred with some issues that we raised, treatments recommended by them were not carried out because they did not appear in the treatment notes, and official complaints were ignored.

(Carers, Parents, New South Wales, Submission #106)

On 8 January 2002 at the case meeting, my wife suggested to Psychiatric Registrar Dr [Y] that it might be a good opportunity to get a catheter into my daughter for a urine sample while she is under anaesthetic on 9 January 2002 for an ECT. Dr [Y] agreed that this would be done. On 9 January 2002, no attempt was made for the urine sample because nothing had been written in the treatment notes for the theatre staff.

(Carers, Parents, New South Wales, Submission #106)

One anonymous submission indicated that lack of staff and resources is contributing to the inability of staff to keep up with the administrative tasks that are ever-increasing.

The administrative burden is ever increasing. I have worked for 30 years in the public system and there has been a steady creep of administrative duties but now it's out of control and on top of that there are fewer administrative staff to assist us.

(Anonymous, New South Wales, Submission #303)

6.1.11 STANDARD 11: DELIVERY OF CARE

Principles guiding the delivery of care: The care, treatment and support delivered by the mental health service is guided by: choice; social, cultural and developmental context; continuous and coordinated care; comprehensive care; individual care; least restriction.

In mental health we are completely discriminated against. Other health areas get different, better treatment responses.

(Carer, New South Wales , Parramatta Forum #1)

Under this Standard outlining the principles underlying the provision of care, submissions and presentations indicate concerns about:

  • lack of choice;
  • lack of comprehensive care;
  • lack of individual care; and
  • restriction of rights.

Living on the street, suicide or being shot by the police are the options available to people with mental illness. Care isn't an option most of the time.

(Carer, New South Wales, Sydney Forum #5)

I came along today because my wife might end up a mental case herself because of her daughter. There's nowhere for someone who is mentally sick to go, there's nowhere for her daughter to get care. The police are nice and try to be helpful but they are not the health service.

(Carer, New South Wales, Sydney Forum #6)

I've just stopped going because of the poor standard of care in the system. It was making me even sicker to go there. So I've decided I don't need it. I need to surround myself with people who are better than me so I can get better also.

(Former Consumer of mental health services, New South Wales, Sydney Forum #12)

Many activities seem to be offered on a group only basis, and don't make provision for individual needs. Do activities such as computer recreation offer opportunities at the skill and interest level of the consumers?

(Eastern Area Interagency NSW, New South Wales, Submission #100)

6.1.11.1 Access

The MHS is accessible to the defined community.

Under this Standard, submissions and presentations indicate concerns about:

  • the lack of access to services during a crisis;
  • lack of access to care;
  • police acting as the de facto mental health service;
  • difficulties in accessing care in rural and regional areas;
  • general difficulties in accessing care if 'new to the system' or from an Indigenous, NESB or low socio-economic background;
  • accessing services 'out of area';
  • inequality of access on the basis of older age;
  • inequality of access on the basis of past forensic status;
  • problems for consumers from a non-English speaking background; and
  • denied access for people with Borderline Personality Disorder.

have a daughter with schizo-affective disorder - as her Mother the stress of her illness and the difficulties we have experienced in trying to access care for her has driven me to a suicide attempt. It wasn't until after I went to the newspapers and politicians that my daughter was finally admitted.

(Carer, New South Wales, Sydney Forum #2)

Problems with access to treatment and support services, both within the community and inpatient care settings, resulted in a whole series of rights being infringed for consumers, carers and the community. For the consumer, these problems ranged from increasing disability and hence consequent inability to care for oneself or others, participate socially or work or study, and in some cases, the potential for harm to self or others, incarceration, or becoming homeless and poor.

There is a lack of resources to ensure good quality mental health care in NSW. Our son was unable to access early intervention and rehabilitation. Instead his condition was left to deteriorate, resulting in gross violations of his human rights on his imprisonment at Long Bay Hospital. His future prognosis has been compromised by the years of neglect by the system and his level of disability is worse that it would have been, had he received the treatment he required.

(Carers, Parents, New South Wales, Submission #75)

Similarly, increased burdens on carers disrupted their ability to participate socially and work when their family member became increasingly ill and required increasing care. The inability to access care for their family member resulted in deteriorating mental health for carers as evidenced by the suicide attempt of one carer. Increasing disability also exposed the consumer, and their family, to discrimination and social exclusion. This often resulted in the further deterioration of the consumers' mental illness. For consumers in rural and smaller regional areas, their ability to access care often required long trips to metropolitan or large regional centres and social dislocation if hospitalisation was required.

6.1.11.1.1 Inability to access services during a crisis

One of our families today is severely traumatised because their daughter died. She committed suicide after being refused care.

(Carer, New South Wales, Parramatta Forum #1)

A constant theme throughout many submissions was not only an inability to access services when needed throughout the course of illness, but that access was also difficult when consumers were at risk of self harm or harm to others. According to this information it would appear that Standards 11.1.4 'the MHS is available on a 24 hours basis, 7 days per week' and 11.1.2 'the community to be served is defined, its needs regularly identified and services are planned and delivered to meet those needs' are not being met:

There's no crisis team in the area ... There is differential access depending on which area you live in. For example, Fairfield, Camperdown and Bowral have no crisis assessment teams.

(Carer, Mother, New South Wales, Parramatta Forum #1)

Some people are transported around in paddy wagons for days because there's nowhere for the police to take them.

(Consumer, New South Wales, Parramatta Forum #5)

As to crisis services - what crisis services - consumers are usually told to have a cuppa and go to bed. The services close at 10pm and consumers simply cannot revolve their crisis around mental health service timeframes, which we are continually expected to do. I've even had staff tell me the consumer can go to Life Line if they're in crisis, who happen to be volunteers are not clinicians and cannot make mental health assessments. If Life Line counsellors refer consumers back to the MHS the consumer within a couple of hours are back onto the phone with Life Line - because at least a Life Line counsellor will try and listen to what is actually happening to the consumer.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

We're dumped, virtually told in every which way, unless it's absolute life & death then don't bother contacting us in a crisis. The crisis teams are under huge stress to try and meet the demands, especially with the MOU between Police & Health.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

6 weeks ago I was taken to the mental health service by my parole officer. I needed help. They said they'd get in contact with me but they didn't. I took an overdose 2 weeks after that. They told me I'd have a case worker - but I haven't got one. I'm not getting the care I need.

(Consumer, New South Wales, Broken Hill Forum #3)

I took someone who was suicidal up to the mental health service and they didn't do anything - there didn't appear to be any protocols in place. Where are we supposed to take someone when they need care?

(Carer, New South Wales, Broken Hill Forum #11)

For years I tried to have him assessed or committed. The police tried on several occasions only to find the mental health unit would say he was OK after an hour and release him. I pleaded to the mental health unit to take him and was turned away. He was very violent and suicidal. As a parent it is so sad to see your children in so much pain and not to be able to help. The police told me they had no faith in the mental health units and I understand why.

(Carer, Mother, New South Wales, Submission #90)

[X] stated there is difficulty in getting after hours care from the mental health team due to lack of staff. On weekdays there is 1 person servicing the Newcastle area from 5:00pm to 8:30am. On weekends, there is 1 person working an 8:00am to 4:00pm shift, which overlaps with another person working a 2:00pm to 10:00pm shift (approximate times). There is no longer a 24 hour system.

(Anonymous, New South Wales, Submission #156)

There is a real shortage of beds and this results in a crisis occurring every weekend with respect to beds and community based care. Last weekend when I was on call there were no beds available. It was a fairly typical Saturday where we saw a range of patients who were quite disturbed with comorbid mental health and drug and alcohol issues - they are either a danger to themselves or to others.

(Anonymous, New South Wales, Submission #303)

We also have complaints regarding severe trauma being caused to family of patients who have been unable to prevent abuse by the system, and whose requests for community assistance for the patient, especially for shelter and counselling were all rejected up to and including the time at which the patient was forcibly scheduled against the family wishes, with the family being made complicit in abusive treatment that they actually had objected to.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

Our members have also noticed that juvenile mental health is also becoming a big problem and is in need of major attention, particularly in country areas. In many cases, juveniles whom police have attempted to schedule have been flat out refused on the basis that no accommodation was available for the person which in turn places strain on the families etc ...

(Police Association of New South Wales, New South Wales, Submission #59)

I sought help from Mona Vale Hospital Psychiatric Officer, but was told unless [X] actually committed violence they could do nothing ...

(Carer, Sister, New South Wales, Submission #104)

I have been informed that a male person committed suicide on Thursday night. The person ... was an outpatient of Bunya, a Parramatta forensic facility. He was living in the community under conditional release. As I understand it he presented himself at Bunya for readmittance as he was "relapsing" (episodic symptoms). However, sadly, Bunya had no beds. He was taken home by the Sydney Mental Health Community Support Team and left there alone being told that they would be back in a few hours. While he was alone he killed himself by taking poison. Tragic that he must have wanted "pain relief" so badly that he chose suicide as the way of terminating his pain and life.

(Anonymous, Victoria, Submission #272)

At the beginning of July, 2004, he admitted to his wife, [Y], that he was not well and said that he wanted to be readmitted to the Lindsay Madew Ward at Hornsby Hospital. He phoned the hospital and they sent two people to his home. His request to them for admission to hospital was refused, and they said they would monitor him at his home. They immediately increased his medication to 800 mg. daily, indicating that the 400 mg. dose was far too low. On their second visit, he again asked to be readmitted to hospital, but again was refused ... From memory, the home visits by Hornsby Hospital staff were made on Friday 2nd, and Saturday 3rd of July, 2004. They phoned him on Sunday 4th and again on Monday, 5th. On that Monday and also on Tuesday 6th, he went to his workplace in the city. On his way home on Tuesday evening, he fell / jumped from a suburban train. He was admitted to St. Vincent's Hospital, and died the next morning, Wednesday, 7th, without regaining consciousness. In effect, within days of Hornsby Hospital's refusal of his request for admittance to hospital, and the doubling of his medication, [X] was dead. As laymen, we cannot help feeling that he would be alive today -

. had he been readmitted as requested, to the secure psychiatric ward at Hornsby Hospital.
. had his condition been monitored regularly after his first episode, which we are now told is normal procedure.
. had his daily medication of Epilim not been reduced from 1000 mg. to 400 mg. when at the Sydney Adventist Hospital in 2002.
We feel the system failed us - and [our son] ...

(Family Member, Father, New South Wales, Submission #346)
6.1.11.1.2 Lack of access to care - resulting in entry into the criminal justice system

As mentioned previously, failure to access services when needed in some instances resulted in consumers entering the criminal justice system purely because of their escalating and untreated mental illness. In extreme cases, criminal acts, including serious assault and homicide, were committed. The Police Association New South Wales expressed concern that often, as a result of their inability to assist consumers to access care; they feel they are left with no other choice than to 'proceed by charge':

When these individuals are refused to be scheduled on the basis of being affected by drugs or alcohol or if they are deemed to have behavioural disorders, they are being let down by the health system..Police then have only one avenue available to them in their duty of care, and that is to proceed by charge when inappropriate ... In order to provide protection to the mentally ill person and the community, for example to stop further criminal acts, breaches of the peace and self-harming, police feel they have no alternative but to go around the mental health system who are currently not doing their job.

(Police Association of New South Wales, New South Wales, Submission #59)

At another service it was reported to me that a client, who had a long standing serious mental illness and a long history of spending his time between SAAP [Supported Accommodation and Assistance Program] services and correctional facilities, was approached by a welfare case worker to commence planning his discharge from the SAAP service ... The case worker was assaulted. When the police transported the client to the local mental health service, he was assessed and deemed not mentally ill enough for admission. He was released back to the care of the SAAP service. Within two hours, he had assaulted another welfare worker and was again transported by police to another psychiatric facility. He was not admitted as he was deemed not mentally ill enough and was considered "out of area". He was returned to the SAAP service. Within the hour, he had walked to the local police station and assaulted the officer who had been transporting him to the psychiatric facilities. He was charged with assault and held in custody. It is of major concern to HomelessnessNSW.ACT that mental health services are failing to provide proper mental health care to people with some of the most complex health issues.

(HomelessnessNSW.ACT, New South Wales, Submission #27)
6.1.11.1.3 Police acting as the de facto mental health service

There's nowhere for someone who is mentally sick to go ... there's nowhere ... to get care. The police are nice and try to be helpful but they are not the health service.

(Carer, New South Wales, Sydney Forum #6)

Due to the inability of consumers and carers to access mental health services during times of crisis, police are called as a last resort as they are available 24 hours a day 7 days a week. The Police Association of New South Wales stated that they have 'neither the resources nor the knowledge' to fulfil this role. As stated above Standard 11.1.4 states: 'The MHS is available on a 24 hour basis, 7 days per week'. Included in the notes to this Standard are crisis teams, extended hours teams and 'cooperative arrangements with other appropriately skilled service providers and community agencies including General Practitioners, private psychiatrists, general hospitals'.

The police are already, if reluctantly, in the front line of caring for people with severe mental illness.

(Police Association of New South Wales, New South Wales, Submission #59)

The fact remains that police, being the 24 hour, 7 day a week, mobile and free public service that they are, usually means that the residual problems of the community are left for them to handle when they have neither the resources nor the knowledge to adequately do so.

(Police Association of New South Wales, New South Wales, Submission #59)

Police, by virtue of their position, become the only emergency response agency to which the public can turn in times of crisis, whatever that crisis might be. The police are turned to for help - it is the only agency available 24 hours a day and the only service that can be relied upon to turn u within minutes of being called.

(Police Association of New South Wales, New South Wales, Submission #59)

Concerns that upon calling the MHS for emergency assistance, people are often simply told to just call the police. We believe this is a totally unsatisfactory approach to mental health emergencies, and is in breach of the MOU. There is concern that Police, by default, are being used as quasi-mental health workers. (We know how they feel!)

(Eastern Area Interagency NSW, New South Wales, Submission #100)

For in the end, it is the police who are called on to handle mental health system "rejects", the people often cited as "bad patients" or poor treatment cases with little perceived chance of recover. You will invariably find that these are frequently people with multiple hospital admissions and court appearances. Police see that as adding to their workload - as unnecessary burdens which should be sorted out elsewhere.

(Police Association of New South Wales, New South Wales, Submission #59)

A contradiction arises, however, because the police feel that their job is to step in only when action is deemed necessary, usually when someone is in danger or breaking the law. Police do not feel, and rightly so, that it is their role to provide psychotherapy, counselling or aid and comfort for the lonely and confused. This is the job of mental health professionals, a group whom police see to some extent, as abdicating their responsibilities. Police see the responsibilities thrust upon them as they are - they are being asked to shoulder duties no one else wants or can manage.

(Police Association of New South Wales, New South Wales, Submission #59)

With the mental health system the way it is, police are being thrust with responsibility in an area which is time consuming and which they argue, is not a proper police function, except in a first response situation. But when limited or no assistance is obtainable from other agencies, police have little choice but to continue to carry the burden of a lack of effective government policy and lack of funding in mental health services.

(Police Association of New South Wales, New South Wales, Submission #59)
6.1.11.1.4 Difficulties in accessing care in rural and regional areas

The vast geographical areas in regional and rural areas of NSW poses serious challenges to the planning and delivery of services to meet Standards 11.1.3 ('mental health services are provided in a convenient and local manner and linked to the consumer's nominated primary care provider') and 11.1.5 ('the MHS ensures effective and equitable access to services for each person in the defined community'). For people living in many areas of NSW, there are very few services that were considered to be convenient and local (Standard 11.1.3). For many people, access to care involved travelling long distances by car, creating significant difficulties for those who are not so readily mobile or have their own transport, sedation and transportation with the Royal Flying Doctor Service or escorted by the police. Concerns were also expressed with treatment and support mediated by a telephone triage service:

There is a general lack of responsiveness from the mental health services and there is a real need in Broken Hill for face-to-face counselling for those people in the country.

(Consumer, New South Wales, Broken Hill Forum #7)

There is a real need in Broken Hill for after hours care as there is not even a 1800 number that people can call to get assistance.

(Consumer, New South Wales, Broken Hill Forum #7)

The level of telephone care in Broken Hill is not good enough and often people are told by mental health services that they will get back in touch with them but the service is not responsive in a time of crisis. An example might be that you call the service on a Friday night but you would get no follow up call and so it is left up to the client to take responsibility to do the following up. This is not easy when people are ill and in crisis.

(Consumer, New South Wales, Broken Hill Forum #7)

I strongly feel a need for after-hours care - not a 1800 number where you just got a few regular questions - but real help. For example, I rang on a Friday night and had a really poor response weeks later. People need face-to-face counselling.

(Consumer, New South Wales, Broken Hill Forum #7)

There have been times when a family member is ill and we're told that there is a bed but it's in a hospital well outside our community. For example, we have been told that we could send our family member to them to a hospital in Orange. The other alternative put to us was that we could take them home and accept the clinical responsibility for them while they are heavily sedated!

(Carer, New South Wales, Parramatta Forum #6)

Transportation in regional areas is a real problem as many seriously ill patients have to go to Orange with the Royal Flying Doctors Service but then they have to make their own way home. Some people in Bourke have even been sent from Bourke to Orange in police cars.

(NGO Worker, New South Wales, Broken Hill Forum #26)

Many of our clients use drugs and alcohol as a means of self medication to cope with their unresolved mental health issues. The Court sends them to local rehabilitation services that are in remote locations where it is difficult to gain access to mental health workers. When they return home the same issues exist and the cycle begins again.

(Walgett SAAP Services, New South Wales, Submission #63)

The Far West Area Health Service (Upper Western Sector) Mental Health and Counselling team is based in Lightning Ridge which is approximately 45 minutes away. The professionals in this team are extremely obliging but naturally they each have local case loads. When an emergency arrives at Walgett SAAP Services, it is often quite some time before the client can be assessed by a professional.

(Walgett SAAP Services, New South Wales, Submission #63)

The need is both dire and urgent, particularly on the South Coast of New South Wales. For persons with a mental illness the main issues are Hospitalisation, rehabilitation places for persons leaving psychiatric hospital, not enough case workers. The closest hospital for acute treatment is at Chisholm Ross Hospital in Goulburn, a four to five hour trip from parts of the South Coast. Beds there are like hens teeth, accepting only the most acute cases; so with a degree of improvement, patients are discharged back into the community ... Community resources are stretched to the max. when a patient is required to be transported to Goulburn. This is costly in both money and workers time: such as police, local emergency hospital staff and community mental health workers. The South Coast is in desperate need. Money injected for projects now would both save lives, and save money in the long run.

(South Coast Mental Health Community Consultative Committee, New South Wales, Submission #244).

I would say that the level of expertise in relation to [X]'s problems is limited in the Albury / Wodonga area or really non-existent. To actually see a psychiatrist in this area you would have to wait up to 2 to 3 months.

(Carer, Father, New South Wales, Submission #102)

The facilities are to say the least poor. Because Nolan House is a short term facility it was never an option for [X] to stay. The only option was for [X] to go to Sydney or Melbourne for treatment. They are just inadequate to deal with local problems, when you go to Melbourne, most of the children are form the country.

(Carer, Father, New South Wales, Submission #102)
6.1.11.1.5 General difficulties in accessing care if 'new to the system' or from an Indigenous, NESB or low socio-economic background

Concern was also expressed in one submission that consumers new to the system find access to services even more difficult than those known to the service. Concern was expressed in another submission that 'good mental health treatment' is only accessed by hard lobbying by families and carers or people who could navigate or knew how to work the system. It was suggested that this could disadvantage Indigenous people, people from a non-English speaking background or people from low socio-economic backgrounds making access inequitable:

But for 'first timers' or those new to the system it is very difficult to get help.

(Anonymous, New South Wales, Submission #156)

We have discovered that often the only way to access good mental health treatment in NSW is by constant hard lobbying by family or carers. The consequence of this is that adequate mental health care is frequently out of the reach of people from aboriginal and ethnic backgrounds, and those from lower socioeconomic areas.

(Carers, Parents, New South Wales, Submission #75)
6.1.11.1.6 Accessing services 'out of area'

One carer expressed concern that hospitals were not assisting consumers who were attempting to voluntarily admit themselves (Standard 11.4.E.3 'where admission to an involuntary facility is required, the MHS makes every attempt to promote voluntary admission for the consumer') by granting access and making subsequent arrangements:

We encouraged him to admit himself voluntarily into Waratah House, the mental health unit attached to Campbelltown Hospital. (Incidentally, he had tried to admit himself into Cumberland Hospital on a couple of occasions and was not allowed due to the fact that he would be "out of area.")

(Carer, Mother, New South Wales, Submission #12)
6.1.11.1.7 Inequality of access on the basis of older age

Standard 11.1.1 states: 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's age ...'. However, one extensive submission detailed concerns that older people had difficulty in accessing appropriate services.

Nursing home patients are discriminated against. This is a policy problem. Psychiatric services don't always provide the same treatment access to older people living in residential care as they do for older people living in the community.

(Anonymous, New South Wales, Submission #303)

For many older people with dementia and mental health problems there is nowhere for them to go except to the geriatric wards. We wouldn't accept physicians looking after 40 or 50 year olds with mental health problems so why should we accept this for older people.

(Anonymous, New South Wales, Submission #303)

It is harder for older people to gain admission to a system which is responsive to danger and acute suicidality. If you are an older person at home quietly depressed and not eating and just fading away it's much harder to get an urgent admission.

(Anonymous, New South Wales, Submission #303)
6.1.11.1.8 Inequality of access on the basis of past forensic status

According to Standard 11.1.1 discrimination by the MHS against consumers on the basis of past forensic or current "offender" status is not to occur and such consumers are not to be diverted to other services. Instead, the Standard states that: 'The MHS ensures equality in the delivery of treatment and support regardless of ... past forensic status...'. However, there is a perception that some consumers are being discriminated against:

Generally, offenders with mental health problems are regarded as the responsibility of Corrections and Justice Health. However, as noted above, the majority of offenders are in the community where they compete with more compliant, law abiding citizens for scarce community health resources. An offender who is unable to access mental health and associated services such as accommodation, within the community is likely to be incarcerated either as a result of further offending and/or as a result of failure to comply with current conditions of a court order or a parole order.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)
6.1.11.1.9 Problems for consumers from a non-English speaking background

Concerns were also expressed regarding access difficulties for consumers from a non-English speaking background. Standard 11.1.1 states: 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's ... culture ...'

I have 60 clients and 80% of these people have a mental illness. Unfortunately most of them don't get the care they need.

(NESB Consumer Advocate, New South Wales, Parramatta Forum #8)

A lot of people fall between the gaps. We have cases of people who have died at home. Their life is like hell.

(NESB Welfare Worker, New South Wales, NESB Parramatta Forum #2)

If someone is 65+ it's really difficult to get them any care. We have clients who are diagnosed with dementia but they don't have dementia but we can't get them in to see a psychogeriatrician. There's a 3-5 year waiting list!

(NESB Welfare Worker, New South Wales, NESB Parramatta Forum #2)
6.1.11.1.10 Access denied if consumer has personality disorder

Concern was also expressed that a diagnosis of 'personality disorder' resulted in an inability to access treatment and support services form the MHS. Standard 11.1.1 states: 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's ... previous psychiatric diagnosis ... or other disability'. Concerns were also raised that access was being limited to those meeting criteria under the Mental Health Act and not, as stated in Standard 11.1.5 'equitable access to services for each person in the defined community'.

We are concerned that on the basis of a diagnosis of Personality Disorder, people are being denied access to case management.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

There are concerns that the Mental Health Act is often used as a convenient excuse to provide no service to a person in need of treatment, simply because they don't meet the criteria for coercive treatment.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

I have had 14 different diagnoses ... The different diagnoses have different consequences within the mental health system. Some bring rewards like more services or legitimacy within the system. Some bring shame and guilt and institutional ignorance. The one that has hurt me the most is 'Borderline Personality Disorder' ... People, who have been diagnosed as having 'Borderline Personality Disorder', for an example of a more common Axis II diagnosis or 'disorder', are at awful risk of being denied services, and treated with contempt by a system which completely fails them ...

(Consumer, New South Wales, Submission #205)

6.1.11.2 Entry

The process of entry to the MHS meets the needs of the defined community and facilitates timely and ongoing assessment.

Under this Standard, submissions and presentations indicate concerns about:

  • long waits with entry via emergency departments and the lack of appropriately qualified mental health professionals.
6.1.11.2.1 Long waits with entry via emergency departments and lack of appropriately qualified mental health professionals

Concerns were expressed about entry via hospital emergency departments including problems with the assessment process and consumers having to repeat their stories many times. According to Standard 11.2.4: 'The entry process to the MHS can be undertaken in a variety of ways which are sensitive to the needs of the consumer, their carers and the defined community'. Notes to this Standard state that this process should be non-traumatic and non-damaging. Standard 11.2.6 further states 'An appropriately qualified and experienced mental health professional is available at all times to assist consumers to enter into mental health care'. Concern was expressed that often appropriately qualified mental health professionals are not available:

The trend towards generalisation is such that now consumers have to wait for anything up to 4 days plus in the Emergency Department which is a totally inappropriate environment for consumers in an acute phase of illness, especially if suicidal or aggressive, to be in. There is simply not the space; the noise factor is high, lights continually on, plenty of instruments to harm oneself or another in Emergency Departments. God help you if you actually want to talk to a mental health clinician in an emergency department if it happens to be out of hours of the CNC (Clinical Nurse Consultant) who happens to work business hours and a five day week.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

The event I want to tell you about occurred about three months ago ... We encouraged him to admit himself voluntarily into Waratah House, the mental health unit attached to Campbelltown Hospital ... On the afternoon in question, I drove him down to Waratah House. We tried to enter the door and it was locked. A nurse came to the door and told us that we could not be admitted there, we had to go through general admission in the emergency section of the hospital. When I remonstrated with him and told him it had been difficult enough to get my son down to admit himself, he called a security guard and they both told us that we had the choice of going away or going to the emergency section - both my son and myself were upset by the incident. We walked down to the emergency section of the hospital - there were quite a few people down there. I asked at the reception area for help for my son ... we were told that he would have to be assessed by the triage nurse ... she... told him he would have to have a physical examination ... At about 11.30pm, my son was shown into a cubicle. He had a short physical by a resident doctor and we were told to wait for the resident psychiatrist. At about quarter past midnight, another doctor arrived. He told us he was not a psychiatrist but had had some experience in the area. He told my son that he was allowed to admit himself as a voluntary patient but as there were no beds in Waratah House, he would have to go to Banks House, (part of Bankstown Hospital). We again waited for about half an hour. Then we were told that because my son was a voluntary patient there was no transport for him and we would have to take him to Banks House ourselves. We had a nightmare trip over there, by this time my son was quite distressed and disturbed. He was finally admitted at about 1.30am or thereabouts.

(Carer, Mother, New South Wales, Submission #12)

6.1.11.3 Assessment and Review

Consumers and their carers receive a comprehensive, timely and accurate assessment and a regular review of progress.

Under this Standard, submissions and presentations indicate concerns about:

  • problems with assessments in emergency departments;
  • assessment problems in rural and regional areas;
  • extended police involvement once at hospital for assessment;
  • management of large staff caseloads;
  • assessment concerns for people from a non-English speaking background; and
  • assessments are not comprehensive and reviews not being conducted.

When you read the literature it makes it sound like everyone gets unproblematic, non-changing, helpful diagnoses of what is wrong with them ... This has not been my experience at all. In eight year in the system in Sydney and Brisbane I managed to gather nine different diagnoses ...

(Consumer, Male, New South Wales, Submission #327)
6.1.11.3.1 Problems with assessments in emergency departments

Carers and clinicians expressed concern about the increasing trend to conduct assessments only in emergency departments often after lengthy delays (up to eleven hours). According to Standard 11.2.12: 'The MHS has a system which ensures that the initial assessment of an urgent referral is commenced within one hour of initial contact'. Not only were these reported assessments not conducted in a 'comprehensive and timely manner', consumers and carers commented on the inappropriateness of this setting and its negative impact on consumers. Standard 11.3.2 states: 'Wherever possible, the assessment is conducted in a setting chosen by the consumer. The choice of setting is negotiated by the consumer and the MHS and considers the safety of those people involved'. Included in the notes to this Standard: 'The MHS provides a home visit rather than expecting the consumer to attend the community mental health centre, emergency department or psychiatric unit'. Clearly, as seen in the quotes below, this is not always the case.

For example, the authors of the following submission reported that they and their daughter waited four and a half hours for an assessment; on a previous occasion they waited 11 hours in the Accident and Emergency department of a hospital without being admitted:

...it implies that perhaps only imminent death is the criterion for Dr [Y] to admit patients to the Liverpool hospital MHU [Mental Health Unit]. This is unacceptable in today's climate where emphasis is on preventing the deaths of young people.

(Carers, Parents, New South Wales, Submission #106)

Every day our members are faced with pressures and accountabilities that are entirely unreasonable given the gross resource deficiencies throughout the system. The chaos that surrounds the assessment of these patients in public hospital emergency departments is the most obvious example, but there are many others.

(Mental Health Workers Alliance, New South Wales, Submission #325)

Now the PET [Psychiatric Emergency Treatment] unit asks you to bring the [unwell] person to the hospital. Previously the mental health nurses would come to the person's home to provide assessment and assistance. If a person is acutely unwell, it can be impossible to convince them to go to hospital. This leaves the police as the only resort, which is embarrassing and inappropriate. When you get to the hospital, there is only a junior doctor [i.e. registrar] on duty, as there is no senior doctor at the hospital anymore.

(Anonymous, New South Wales, Submission #156)

This trend towards Emergency Department assessments is occurring in many places ostensibly on an Occupational Health and Safety basis. But it can also be construed as part of the erosion and retreat of community teams back into hospitals increasingly turning them into out-patient mental health services. I see this happening in both city and rural / remote services. As services become more hospital based, medical matters (bed availability, symptoms and signs) take precedence. Our experience is that as community crisis assessment and other mental health services get put back in hospitals:

I. people present at Emergency Departments with more amplified clinical symptoms than life problems as currency to get attended to in a hospital;

II. In Emergency Departments, life crises become confused with psychiatric emergencies. People get unnecessarily and more expensively treated as psychiatric emergencies for acute technical treatment, whereas if they were assessed in the community, life stressors and relationship difficulties fuelling the crisis could be sorted out in a more low-key and practical way;

 III. Community mental health teams get diverted to become handmaidens to admission and discharge pressures and hospital doctors' priorities (e.g. clearing out Emergency Department of non-psychiatric social and D&A problems). Of course Emergency Departments will initially love you for this, until the consequent depletion of coherent 24 hour community-based crisis and continuity of care MHS results in ever-increasing demands upon and presentations at Emergency Departments;

•  teams based in hospitals become more sedentary, and home visits become infrequent;

•  coherence and funding for distinct community teams evaporate, leaving a few staff to arrange "follow-up" from hospital only.

(Clinician, New South Wales , Submission #351)

Ultimately, OH&S [Occupational Health and Safety] and economy-of-scale arguments can be extended to banning all community health centres and all home visits. The appropriate path is to make community work as safe as possible, to screen and divert most assessments and initiation of treatment away from Emergency Departments, and then use Emergency Departments in exceptional, highly ambiguous or emergency circumstances only, or to assess mixed medical / psychiatric emergencies.

(Clinician, New South Wales, Submission #351)
6.1.11.3.2 Assessment problems in rural and regional areas

Access to assessment and appropriate assessment procedures in rural and regional areas was an area of common concern. One consumer stated that in Broken Hill there is confusion as to who is responsible for conducting a psychiatric assessment:

Triage is a real problem in Broken Hill as there is constant confusion over who is responsible for assessment. This confusion makes it hard for consumers if they require immediate assistance ... I have always presented to the hospital or to the mental health service but there seems to be no clear protocol amongst the staff about how to conduct an assessment when I am unwell. I have never been assessed by a psychiatrist and am normally assessed by the registrar on duty.

(Consumer, New South Wales, Broken Hill Forum #8)
6.1.11.3.3 Extended police involvement once at hospital for assessment

The Police Association of New South Wales also reported lengthy delays occurring before consumers were assessed after arriving at an emergency department or psychiatric unit. These delays unnecessarily tie up considerable police resources while they wait for an assessment to be conducted. According to Standard 11.2.12 'The MHS has a system which ensures that the initial assessment of an urgent referral is commenced within one hour of initial contact'.

In regards to the amount of time ... this is generally due to the fact that there are not enough accredited persons to perform this role.

(Police Association of New South Wales, New South Wales, Submission #59)

Section 24 Orders - The problem faced by police in relation to this section of the Act, involves the amount of time police are forced to sit around at hospital waiting for relevant staff to make a decision on whether or not to schedule patient ... Examples our members have provided, include it being the norm for two officers to sit in a particular western metro hospital for 3 hours whilst waiting on a decision to schedule or not to schedule ... In another western metro suburb, this can mean that there are no police cars at all available to do other jobs at certain times of the day.

(Police Association of New South Wales, New South Wales, Submission #59)

Considering the stages in procedure as just described, it's not surprising that the entire process takes anywhere between 2 to 4 hours and even longer in some cases. Recently, two police officers were required to wait at a certain western suburbs hospital for 7 hours before medical clearance could be given so that the person could be scheduled. The time delay unfortunately impacts on the number of police on the streets, the amount of time it takes to police to get to other jobs and their response times, which remains a source of community frustration for those touched by crime.

(Police Association of New South Wales, New South Wales, Submission #59)

Police are frustrated and angered by the misuse of Section 24 of the Act by mental health professionals, who are fully aware of a police officer's duty of care. Duty of care essentially dictates that a police officer must do all within their power to take a person o a place of safety. Mental health professionals abuse the fact that once police bring in a person on a Section 24, they then cannot simply leave due to their duty of care to the individual concerned. Hence whilst the decision is being made on whether or not to schedule a patient, police continue to remain with the patient, their role in effect changing from a policing role to a mental health role. Once the individual is delivered to the hospital by police, they enter into the health system and from this point on, should cease to be the responsibility of the police.

(Police Association of New South Wales, New South Wales, Submission #59)

Another problem that needs addressing, involves the transferring of patients between hospitals. What generally happens, is that at the time they are originally assessed at the first hospital and consequently may be classified as being mentally ill or mentally disordered, by the time they are transferred to another hospital and are again assessed.

(Police Association of New South Wales, New South Wales, Submission #59)
6.1.11.3.4 Management of large staff caseloads

Many submissions acknowledged that the failure to deliver quality treatment and support services was not the fault of individual staff but more related to broader systemic issues such as increasing workloads, management of work and overall lack of resources that restricted the ability of clinician ability to deliver timely and accessible quality care. This indicates a failure to meet the requirements of Standard 11.3.19 which states:

'The MHS has a system for the routine monitoring of staff case loads in terms of number and mix of cases, frequency of contact and outcomes of care':

Another social worker arrived and they burnt out quickly also which reflects the demands on their time. The staff need support - there needs to be a system that can back these people up.

(NGO Service Provider, New South Wales, Broken Hill Forum #13)
6.1.11.3.5 Assessment concerns for people from a non-English speaking background

Even though Standard 11.3.9 states: 'There is opportunity for the assessment to be conducted in the preferred language of the consumer and their carers' and Standard 11.3.10 states 'Staff are aware of, and sensitive to, language and cultural issues which may affect the assessment', there were some who did not perceive this be the case. For example, concern was expressed about the potential misdiagnosis of a person from a non-English speaking background, which could indicate problems with the assessment process:

She has been informed that she has a mental health problem and in my opinion she doesn't. She had been wrongly diagnosed. After the assault she had been arrested three times by police. This is not uncommon - people from NESB backgrounds are often misdiagnosed.

(Legal Counsellor and Multicultural Mental Health Service worker, New South Wales,
NESB Parramatta Forum #5)
6.1.11.3.6 Assessment process is not comprehensive and reviews not being conducted

Concern was expressed that during the assessment process, sufficient information was not being considered for the assessment to be called 'comprehensive' and appropriate conclusions to be drawn with regard to diagnosis, risk or review of progress. Standard 11.3.5 states: 'The assessment process is comprehensive and, with the consumer's informed consent, includes the consumer's carers (including children), other service providers and other people nominated by the consumer'. Included in the notes and examples to Standard 11.3.5 is the following: 'multidisciplinary assessment which includes physical, social and psychological strengths, risks, family and functional components' and 'information is gathered from a number of sources including, with the consumer's informed consent, the General Practitioner':

We question the practice of conducting minimal assessments, (those conducted in a few minutes) - it is our view that assessments must be thorough, and that unwell consumers can manage to hold it together during short assessments when it is harder to do so if an assessment is conducted with more time devoted to speaking with the person.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

There is a concern that when an assessment has been conducted, and the Acute Care Team is subsequently informed of a further deterioration in the person's condition, they will not come out to conduct subsequent assessments.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

6.1.11.4 Treatment and Support

The defined community has access to a range of high quality mental health treatment and support services.

Under this Standard, submissions and presentations indicate concerns about:

  • the lack of care, treatment and support being provided by the mental health system;
  • individual care plans not discussed with consumers and carers;
  • concerns about relocating the provision of community treatment and support services to hospital settings;
  • lack of services for youth;
  • lack of services for people with dual diagnosis - drug and alcohol;
  • lack of mental health services for the aged;
  • lack of services for consumers with hearing or both hearing and vision impairment;
  • difficulties in accessing treatment and support for consumers from a non-English speaking background (NESB);
  • difficulties for community-based offenders with mental health problems;
  • problems for consumers subject to the criminal justice system;
  • lack of treatment and support for people with mental illness after release from prison;
  • lack of services for people with personality disorders;
  • lack of treatment and support services for consumers who are homeless;
  • limiting access to treatment and support by diagnosis;
  • lack of treatment and support services for people with eating disorders;
  • lack of treatment and support in rural and remote areas; and
  • lack of treatment and support for people with Acquired Brain Injury.
6.1.11.4.1 No care, no treatment and no support being provided by the MHS

Many consumers and carers expressed feelings of despair and frustration at being unable to access any care, treatment or support form the MHS and feeling horrified at some of the responses they had been given when seeking care:

There is a lack of response - the mental health service thought the doctors were looking after me and the hospital thought the mental health service was looking after me - actually nobody was. I just wanted to kill myself.

(Consumer, New South Wales, Broken Hill Forum #3)

The problems encountered in "the system" over the years have been both terrifying and frustrating. The feeling that no one cares, and that this is "your cross to bear".

(Carer, Mother, New South Wales, Submission #97)

Please, if you are aware of any services I could access for my daughter or myself, could you let me know, as I cannot accept the answer I have been given by a number of health care professionals - that if my daughter survives into her twenties, I will have done well !

(Carer, Mother, New South Wales, Submission #92)

I live in fear for my life most days. But, I won't turn him on the streets to be homeless. I am not sure what the answer is, the prison system seems to be were they all end up. There is no help there for them. Actually it is the worse place they can go as they are treated like animals.

(Carer, Mother, New South Wales, Submission #90)

I came along today because my wife might end up a mental case herself because of her daughter. There's nowhere for someone who is mentally sick to go, there's nowhere for her daughter to get care. The police are nice and try to be helpful but they are not the health service.

(Carer, New South Wales, Sydney Forum #6)

I have had Schizophrenia since 1976 ... When I was sick in 2000 I called in the acute care response team - they gave me Valium, the next day they again gave me Valium - every time I've gone for care the system has failed me.

(Consumer, New South Wales, Sydney Forum #4)

The incident that occurred recently when the police shot dead that young student who was stabbing someone is a good example of how badly our system is failing people who have a mental illness. The student went to a mental health service to seek care but was turned away and told he was okay. He wasn't okay but he didn't deserve to die.

(Carer, New South Wales, Sydney Forum #5)

Consumers need a whole range of support systems not just 2 weeks or less in an inpatient service to then be dumped back into the community experiencing symptoms.

(Consumer Activist, New South Wales, Submission #257)

...my daughter, [X] who passed away in March 2002 as a result I think, of inadequate mental health care. [X] had a history of depression and Obsessive Compulsive Disorder. For the last 12 months of her life, [X] sought unsuccessfully for help to control her depression and OCD ... As [X] became more and more depressed and anxious, she developed an eating disorder and worried about being fat, even though she was only 52 kilos. After attending a local doctor, whom I don't know, she was prescribed Duromine, a weight loss tablet I knew nothing of this. [X] also sought help from an OCD clinic near Newcastle and one in Sydney, but was put on a "waiting list". We are now left with the grief of a child we will never see again. There was nowhere to get help for this terrible nightmare we found ourselves in and we had to watch her waste away before our eyes. On the morning of March 24, [X] was found dead by her 9 and 10 year old daughters as an interaction of these lethal drugs when too many are taken. These little girls are now in my care and I blame the "system" for my daughter's death and the children not having a mother.

(Carer, Mother, New South Wales, Submission #88)

Crisis in Acute Care provision: There is definite crisis in the availability of appropriate care for people experiencing episodes of acute illness. This includes the availability of treatment options in hospital and in the community. The results of this include early and poorly planned discharge; long waiting times in emergency departments; increasing pressure and stress placed on carers; involvement of the police and emergency workers to address mental health issues; increasing use of Community Treatment Orders; imprisonment of mentally disordered offenders.

(Clinician, New South Wales, Submission #197)
6.1.11.4.2 Individual care plans not discussed with consumers and carers

Despite Standard 11.4.9 acknowledging the involvement of consumers and carers ('there is a current individual care plan for each consumer, which is constructed and regularly reviewed with the consumer and, with the consumer's informed consent, their carers and is available to them'), reports were received suggesting that both consumers are carers are repeatedly being excluded from assessment and treatment planning. Given the reported problems with access and limited services available in the community, practices which involve carers to assist with the delivery of care and achieve the best possible outcomes for consumers would both help recovery and protect many of the rights of people with mental illness.

For the 35 days that our daughter was in the MHU, we often experienced poor internal communication in the ward. We were given incorrect information about our daughter's medications and levels; the Psychiatric Registrars, Doctors [Y] and [Z], were reluctant to contribute to our twice-weekly case meetings, and items that were to be noted for our daughter's treatments were not actioned.

(Carers, Parents, New South Wales, Submission #106)

Neither should a patient or close person have to take out an FOI to get information regarding treatment as we have suggested such things should be available to the patient at MHRT hearings and so on.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

We have clients who are 16 and 17 year old adolescents who live with their parents. Often the child may not be responsive to the mental health services but as the parents are left out of the treatment circle it makes communication between that family and the service extremely hard.

(Family Support Services Worker, New South Wales, Broken Hill Forum #6)
6.1.11.4.3 Concerns about relocating the provision of community treatment and support services to hospital settings

An underlying theme in many submissions was that treatment and support services were not available for consumers in the community to address their mental illness and assist with recovery, rehabilitation and integration back into the community. Standards 11.4.3 - 11.4.8 state that the MHS will 'ensure' or 'provide' 'access to a comprehensive range of treatment and support services' which are specialised with regard to age, stage in the recovery process, dual diagnosis, cultural factors, and which address 'the physical, social, cultural, emotional, spiritual, gender and lifestyle aspects of the consumer' (11.4.6). Additionally, Standard 11.4.10 states 'The MHS provides the least restrictive and least intrusive treatment and support possible in the environment and manner most helpful to, and most respectful to, the consumer'. Concerns were also expressed regarding the location of community based services within hospital settings and the preference for these to be located in the community.

There is a good reason for us to have a better community focus. Services at the moment are focused internally which is located in the hospital. To the Broken Hill people it may seem like just another hospital service.

(Clinician, New South Wales, Broken Hill Forum #9)

The randomised control evidence clearly favours community and home based mobile extended hours crisis services over hospital based assessment and initiated treatment (see references). We are told by our Director of MHS, NSAHS that all the arguments for having community mental health services on community sites are purely "ideological". Well, no one side of such a debate has a monopoly on ideology. Further, although some of the evidence for local community siting is indirect, there is no evidence-base whatsoever for siting all community mental health services in hospitals. Wherever a difference can be inferred directly or indirectly from the evidence, it is in favour of community-based teams. Though it is important to be cautious and not to overclaim in extrapolating from the literature, this general trend is fairly consistent and not "in contention" as stated by our Area Mental Health Director.

(Clinician, New South Wales, Submission #351)

Just because it is becoming more common to relocate such community-based services in Emergency Departments and elsewhere on acute hospital sites, doesn't imply that this is the most effective deployment at all. This retreat to a "fortress" hospital mentality is ostensibly due to administrative staff OH&S concerns. However it is really due to Health Executives' "land hunger", plus the perceived need to make shortsighted attempts to assuage general hospital clinical pressures, eclipsing the real need for community based services which prioritise the best possible outcomes for service users and their families.

(Clinician, New South Wales, Submission #351)
6.1.11.4.4 Lack of services for youth

Carers expressed concern at the paucity of services for youth and indicated that services need to be broader in their approach than treatment just for 'mental illness' as other mental health problems and life crises were generally associated with this age group. Standard 11.4.3 ensures access to a 'comprehensive range of treatment and support services which are, wherever possible, specialised in regard to a person's age and stage of development'.

For a number of years, I have been trying to access mental health services for my daughter, who is now approaching 17. She suffers an array of mental health issues, including obsessive / compulsive traits, depression, and self-abuse. Unfortunately, it seems that adolescent health support is sadly lacking, and I am unable to find anyone who will take my daughter's difficulties seriously. As a parent, it is absolutely heart-breaking and soul-destroying to watch my child gradually self-destruct. Throughout the last year, her mental state has deteriorated badly and I am no longer able to seek help for her because her age precludes it.

(Carer, Mother, New South Wales, Submission #92)

Department of Ageing, Disability and Home Care can't find somewhere for a young boy to go so he is being held at Bankstown.

(Carer, New South Wales, Parramatta Forum #1)

The main point I want to make is that is was so difficult for me to get any help for [X] because he was over 17. He realised just before he died he really wanted to turn his life around and we thought he was just about there when he suddenly decided to end his life. Parents need to be heard - young people can't alway help themselves to get the right treatment. Although having said that now (too late for us) but there are web sites / phone lines and help now available."

(Carer, Mother, New South Wales, Submission #122)

My experience is that getting young people with debilitating mental health issues into the NSW Health system's care, namely the child and adolescent mental health services, is very difficult as the child virtually has to be actually self-harming or close to it. Not only is this turning our back on these young people and their families, it is woefully inefficient, with mounting costs in the areas of the following over extended periods of the young person's later life: unemployment benefits, ongoing mental health treatments and their bodily concomitants, problem gambling / alcohol abuse costs to society and treatment program costs, and legal / punitive services costs, costs of marriage breakdown etc.

(Clinician, New South Wales, Submission #5)

A partnership between the Richmond Fellowship of NSW and South Sydney Youth Services resulted in a pilot service that provided support, information and education for young people with a dual diagnosis. The program sought to motivate participants to more readily contemplate and reduce their substance use. Preliminary evaluation findings indicated a high level of engagement of clients, with evidence that young people responded well through practical support (Walker 2002) ...

(NSW Association for Adolescent Health, New South Wales, Submission #98)

It is clear that for young people with a dual diagnosis, their families and carers, the key issues are:

•  Timely and appropriate access to treatment that is able to engage young people in addressing both mental health disorders and substance misuse or abuse,

•  Continuity of care with access to appropriate support and information.

For young people with a dual diagnosis they are ...

•  Caught in the gap between child and adult services, neither of which are appropriate,

•  Caught in the gap between mental health and AOD services with differing philosophies, assessment processes and treatment models.

•  Caught in the current gap in research and evidence based models to direct best practice in working with young people with a dual diagnosis. (author's emphasis)

(NSW Association for Adolescent Health, New South Wales , Submission #98)

...the Association recommends that: ...Age and developmentally appropriate services for young people are provided in mental health and AOD (Alcohol and Other Drugs) services.

(NSW Association for Adolescent Health, New South Wales , Submission #98)
6.1.11.4.5 Lack of services for people with dual diagnosis - drug and alcohol

Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of services which are, wherever possible, specialised in regard to dual diagnosis ...' In the notes to this Standard, this includes dual case management with alcohol and other drug services. Concern was expressed that there are an insufficient number of such services to provide treatment and support to these consumers with complex needs:

The major problem is the lack of skilled follow up and supervised accommodation. My son spends time living with me, which always ends in violence, drugs in the house and the availability of more money for drugs, because everything is "laid on" at home for him. Police are involved due to threats (usually towards my husband), and the removal from the home. This makes us feel really guilty and depressed.

(Carer, Mother, New South Wales, Submission #97)

My son [X] committed suicide 2 years ago - he was 26. He was extremely intelligent, creative and a good athlete. His story started when he was 17 and started smoking marijuana and became quite depressed. My husband and I encouraged him to go to the local mental health service - where he saw [Y] and was encouraged by [Y] not to "prostitute" his ideals or lifestyle choices. I also went to see [Y] separately (as did my husband) who more or less said it was none of my business - he's 17 ... Anyway - [X] started drinking and smoking at the age of 21 (before that he didn't like alcohol) then of course problems began - with psychotic episodes where [X] would become violent (have no recall of what happened and then have deep remorse) and we had to call the police - of course this was no use - it only made the spiral deeper and his self esteem lower.

(Carer, Mother, New South Wales, Submission #122)

To be a consumer with a mental illness and, for example, drug or alcohol abuse problems or a compulsive gambling problem is to find yourself falling between the cracks. Whose responsibility are you? Lack of integrated services means the system is failing consumers with co-morbidity issues.

(NSWCAG, New South Wales, Submission #273)

...conventional MH systems still consistently fail the needs of:

3) those naughty people who take alcohol or other drugs, or at least who tell the MH staff about it, and

4) those who have complex jumbled pictures, esp with two or more of the above. We need a far more integrated MH and D&A treatment / management system, and we need at least double the current budget.

(Clinician, New South Wales , Submission #128

[There is] confusion about what to so with people with dual diagnosis

(Consumer and Consumer Advocate, New South Wales, Submission #169)

I have watched with grave concern the impact of cannabis abuse on the mental health of many of my clients and heard too many news items with the following scenario: A client with mental health problems becomes actively psychotic and a risk to his family, often smoking cannabis heavily aggravates this psychotic episode. The family, or the client himself, seek admission and treatment for the psychotic client and are refused. The client goes out and kills or seriously injures someone and gets free treatment, detoxification and medication in jail for many years. Generally cannabis abuse has made a significant contribution to the tragic scenario - possibly precipitating schizophrenia or drug induced psychosis in the first place and then aggravating it and hindering recovery in the long term. The murder of a four year old girl recently was a tragic example of this scenario. Doubly tragic as it was so avoidable.

(Clinician, New South Wales, Submission #181)

Recognition of cannabis abuse and dependency as a problem that can be treated needs to be heightened. Most people would be able to find a Quit group for smoking quickly and easily, however there is very limited availability of Quit groups for cannabis and no public health messages as to where to find them. Access to inpatient psychiatric care should be much more readily available to those who need it. Compulsory treatment should be enforced where necessary. (I will not submit in detail on these topics but strongly support increased availability of treatment and realistic and workable conditions for compulsory treatment where necessary).

(Clinician, New South Wales, Submission #181)

Cannabis abuse needs to be carefully assessed and treated. Treatment will help the client come 'out of the fog' and face life issues (like getting a job and communicating with family members). Treatment will also dramatically reduce the risk of progressing to heroin use. Cannabis use may be particularly dangerous for psychiatric and dual diagnosis clients. These clients especially should be clearly advised of the risks they face if they continue to use cannabis and offered good assessment and treatment.

(Clinician, New South Wales, Submission #181)

Cannabis use is associated with greater psychotic symptoms and increased depression. Previous research has found raised levels of psychopathological syndromes and higher relapse and readmission rates among people with schizophrenia who abuse cannabis ... Cannabis use, and years of cannabis use, was associated with increased levels of psychotic and non-psychotic symptoms, including depression and paranoid ideation.

(Clinician, New South Wales, Submission #181)

The provision of co-ordinated and comprehensive services for people who experience mental health problems and drug and alcohol problems remains an area of great need. Services continue to be provided by separately funded and managed government agencies with some extremely limited flexible services being run by NGOs. The presentation to mental health services of people experiencing mental health problems and significant drug and alcohol problems has continued to increase significantly since 1993.

(Clinician, New South Wales, Submission #197)
6.1.11.4.6 Lack of mental health services for the aged

Standard 11.4.3 ensures access to a 'comprehensive range of treatment and support services which are, wherever possible, specialised in regard to a person's age and stage of development'. However, concerns were raised with regards to the many difficulties in providing services to this age group. Behaviour problems were cited as a difficulty both in terms of settings where treatment is provided for other patients (e.g. acute care and mix of consumers, aged residential setting) and staff.

Another problem is the lack of dedicated facilities for older people with psychiatric disorders requiring admission. Older people don't mix well with younger people, particularly those younger violent patients who are taking illicit drugs and are psychotic. There are strong arguments for separate for separate facilities.

(Anonymous, New South Wales, Submission #303)

...the problem is that geriatric services are not set up or trained for providing appropriate treatment for people with dementia who display disturbed behaviour (BPSD) or who have co-morbid depression or anxiety or paranoid states. Commonly, dementia first presents with depression or paranoid ideas ... The ideal arrangement is a close liaison between geriatric and psychiatric services for older people, so that they can work together for those who have both psychiatric problems (e.g. dementia, depression, paranoid states) and physical problems.

(Clinician, New South Wales, Submission #264)

Another deficiency in our system ... is the lack of availability of old age psychiatry teams to be involved in psychiatric and behavioural programmes in aged care facilities.

(Clinician, New South Wales, Submission #264)

There's no policy for behavioural problems in the elderly. The funding formula devised by the Centre for Mental Health in NSW, MHCCP, does not (yet?) provide for dementia. We can only admit patients with dementia into care if they have a fully formed psychosis, but not if they have behavioural problems not accompanied by a psychiatric diagnosis. Further nurses often don't want to admit people with dementia and behavioural problems because they fear the facilities are not suitable for them or they do not have sufficient staff or sufficient male staff.

(Anonymous, New South Wales, Submission #303)
6.1.11.4.7 Lack of services for consumers with hearing or both hearing and vision impairment

Included in Standard 11.4.7 with regard to the delivery of services to people with dual diagnosis are people with 'other disability'. One Disability Community Worker expressed concerns that people with hearing impairment or dual hearing and vision impairment were experiencing difficulty in accessing services and are being discriminated against. Standard 11 (Access), states that: 'The MHS ensures equality in the delivery of treatment and support regardless of ... physical or other disability' and Standard 11.1.7 states 'the MHS, wherever possible, is located to promote ease of physical access with special attention being given to those people with physical disabilities ...'.

I also want to talk about improving access to services for children with a hearing impairment. The resources in Australia, in this State, are extremely poor for hearing impaired children. The children become so isolated and disconnected from their communities. There are so many issues from a community justice point of view. We are desperately trying to train mental health services to become more accessible, responsive and understanding of the needs of people with a hearing impairment. We know many young people with a hearing impairment who are depressed and frightened. I don't have qualifications in psychology - we refer them on but they usually get fobbed off and fobbed off.

(Disability Community Worker, New South Wales, Parramatta Forum #2)

Then if you can imagine how bad it is for people who are both deaf and blind and have a mental illness. Some deaf people get progressively blind and there are absolutely no services for these people. They are so disabled - it has a huge impact on their mental health and nobody knows what to do with them or how to work with them.

(Disability Community Worker, New South Wales, Parramatta Forum #2)

[X] (NSW). [X] uses Auslan and is the only deaf person in her family. She was 24 when she first saw a mental health service provider. When asked to describe her experience, she says, "felt so great. I could get out of my chest which I couldn't express my feelings / experience to my family" (due to limited communication). She experienced counselling in Auslan, with an interpreter and without and interpreter. She says, "if the professional could [be] able [to] do [the counselling] with sign language, then it [would] be excellent!" She felt that having the interpreter (a third person) made it harder for her to express her feelings. She encourages counsellors to: (a) get an interpreter if the deaf person would prefer this; (b) use very clear and plain English when talking or in written communication; (c) to be aware of the different education levels of deaf people "not all the same"; (d) "be patient if deaf people do repeat again". [From: Improving access to mental health services for young deaf Australians - Step by step]

(Deaf Society of NSW, New South Wales, Submission #291)
6.1.11.4.8 Difficulties in accessing treatment and support for consumers from a non-English speaking background (NESB)

Concerns were expressed that consumers from a NESB are experiencing difficulties in accessing appropriate treatment and support services. Standard 11.4.8 states: 'The MHS ensures access to a comprehensive range of treatment and support services which are, wherever possible, specialised in addressing the particular needs of people of ethnic backgrounds'.

People with Post Traumatic Stress Disorder referred to our service don't get care. The waiting lists are long - sometimes up to a year. We need substantially more funding for trauma services.

(Multicultural Mental Health Worker, New South Wales, NESB Parramatta Forum #9)

All we can provide is a referral service but where can we refer them to? There are no services available.

(NGO Service Provider, New South Wales, NESB Parramatta Forum #10)

It is extremely difficult to get assistance or any type of care for those people who have a dual diagnosis and come from a NESB - there's not a lot of expertise to help these people. People are overmedicated by and large. A guy was having bad side effects from his medication but he was not believed because he had an intellectual disability and was from a NESB.

(NESB Consumer Advocate, New South Wales, NESB Parramatta Forum #7)
6.1.11.4.9 Difficulties for community-based offenders with mental health problems

All offenders supervised by COS are members of the community. While they may form a sub-group within the community, offenders should remain entitled to services from mainstream agencies that are funded to provide services to the community.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

Concerns were expressed regarding the difficulties community-based offenders with mental health issues were experiencing in accessing treatment and support services. These services are seen as vital in diverting consumers from incarceration and this group are seen as having 'the most to gain from successful mental health intervention and support services'. Integrated and coordinated service delivery is seen as essential in diverting these consumers from incarceration.

Anecdotally, few offenders with mental health issues are suitable for such diversions from custody due to lack of treatment and other supports necessary for successful completion of such orders.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

Community-based offenders should be seen as a priority for mental health treatment providers and support services such as accommodation providers since this group pose the greatest risk to the community, have fewer social supports and have the most to gain from successful mental health intervention and support services.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

The custodial environment manages the mental health problems of offenders, with a combination of medical services and offender management interventions. For the continuing mental health of those who are released back into the community, the services of the Community Mental Health sector are essential.

(NSW Department of Corrective Services, New South Wales, Submission #295)

An offender who is unable to access mental health and associated services such as accommodation, within the community is likely to be incarcerated either as a result of further offending and/or as a result of failure to comply with current conditions of a court order or a parole order. COS can only effectively supervise offenders with mental health issues, or divert offenders from custody, if a treatment provider is willing and committed to providing the treatment within a partnership approach.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

There is a lack of research on the numbers of community-based offenders with mental health issues, including drug and alcohol disorders. Such epidemiological data is urgently needed if problems relating to mental health, intellectual disability and drug and alcohol disorders are to be addressed.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)
6.1.11.4.10 Problems for consumers subject to the criminal justice system

Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of treatment and support services which are, wherever possible, specialised in regard to ... consumers who are subject to the criminal justice system'.

Most people will not have full forensic procedures (and we could not recommend general extension of this due to the current system's injustices, apart from the fact that choice should be involved).

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

Women's mental health issues are of major significance for service providers in the criminal justice system. There are important differences in the mental health issues of female and male offenders. Female offenders differ from their male counterparts in the prevalence of certain disorders, the age of onset, the presentation and diversity of symptoms, the course and severity of the disorder, responses to interventions and known risk factors. Most women offenders have significant mental health issues and a high rate of co-morbid disorders such as substance abuse and personality disorders, and are poly-drug users.

(NSW Department of Corrective Services, New South Wales, Submission #295)

Important figures (Butler & Milner - 2001 NSW Inmate Health Survey):

•  Women were more likely than men to be currently taking psychiatric medication (24% vs. 1%).

•  A doctor at had diagnosed 54% of women vs. 39% of men sometime in the past with having a psychiatric problem. Large numbers of women's psychiatric problems consisted of depression, drug dependence, anxiety and personality disorders.

•  30% of women and 20% of men had made a past suicide attempt and women were more likely to have made multiple suicide attempts.

•  21% of women vs. 12% of men had deliberately self-harmed or injured themselves at some time in the past.

(NSW Department of Corrective Services, New South Wales , Submission #295)

About 8 weeks ago my son was arrested and put in prison for 8 weeks for breaking a court order. He had been taking medication for years. While he was there he was not permitted to see a doctor or take his medication. While there he was bashed. He was released on strict conditions that he sees a psych. Again we are having difficulty as he does not work and can not afford a psychiatrist. There have been times when I have been to the hospital and spoken with the mental health teams and they have turned us away.

(Carer, Mother, New South Wales, Submission #90)

It is the experience of correctional centre personnel that a significant offender management challenge is posed by a range of symptoms consistent with mental health disorders. These symptoms can be responsive to medication and interpersonal services, and they can be responsive to more behavioural interventions. In either situation, inmate symptomatic presentations provide a significant challenge to this department and to its allied medical services.

(NSW Department of Corrective Services, New South Wales, Submission #295)

In research conducted in NSW prisons, Butler and Allnutt (2003), found that 78.2% of male inmates and 90.1% of female inmates at reception into gaol had experienced a major psychiatric disorder in the past 12 months. These figures would appear to reflect both the lack of treatment services available in the community and the lack of stable accommodation. It is unclear what percentage of these remand inmates are later not convicted. However, according to data collected by the Department (Thompson 2001), of those offenders held in custody on remand, some 56% are discharged without a custodial sentence.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

...if the incarceration of people with mental health disorders is to be reduced, the assessment, treatment and support services for offenders with mental illness/mental health issues (including intellectual disability) are not only required pre sentence and upon transition from gaol to the community, but additionally and predominantly for those who serve their entire sentence in the community.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

They are in a highly restricted environment, have no choice in provision of service, have far reduced access to their support network, have even greater problems in accessing any complaint or oversight body and in allowing such bodies to examine information that they request to be examined.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

As you can see a man with a mental problem to end up in jail is not the place for him but somekind [sic] of mental institution where he can receive long term care and not be able to harm himself or others. Also his wife and children under constant fear, how do they cope, all having counselling now, how safe are they? All the mental hospitals tried to help but after some time just sent him home on medication when they were unable to succeed, hoping he would survive. (author's emphasis)

(Carers, Sister and Brother-in-law, New South Wales Submission #108)

People with psychiatric disabilities suffer discrimination in terms of bail, parole, jail security classification (they get isolation and 'protection' which is very dangerous for prisoners), and access to outside contact and visitors and activities / work / education / rehab programs.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

The new lack of Visiting Justices compounds their problems regarding defence to Corrections 'in-jail' charges on disciplinary proceedings, which often are actually brought against someone for symptoms of disability. Simultaneously imputed disability is used in these unexamined disciplinary proceedings to punish prisoners with the medication and isolation that results from that label. Discipline is at the discretion of the Commissioner, and the Ombudsman has no power to ask him to show evidence of an offence.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

The 2003 NSW Corrections Health Service (now Justice Health) Report on Mental Illness Among NSW Prisoners states that the 12 month prevalence of any psychiatric disorder in prison is 74%, compared to 22% in the general community, and while this includes substance disorder the high rate cannot be attributed to that alone. The twelve-month prevalence of psychosis in NSW inmates was thirty times higher than in the Australian community. The most common disorder was an anxiety disorder with the most common anxiety disorder being Post Traumatic (which can be very severe and disabling and indicates the horrors that many prisoners have experienced prior to and in jail). One in twenty prisoners had attempted suicide in the twelve months prior to interview. This study only touches the surface of evaluation and statistics of the nitty-gritty of what's going on - it excluded many people, including those "too unwell" to be interviewed. It also reflects the attitude of the professional, but considering that we regard 'labelling' to be covered by the term 'psychiatric disability' we consider the report of great use. This outrageously disproportionate situation arises from both prison conditions and the discriminatory nature of the criminal justice system.

(Indigenous Social Justice Association (ISJA) and Justice Action (JA),
New South Wales, Submission #349)

In relation to the 2002 and 2004 situation, some psychiatrists and other professionals working for both the prison services and the Department of Health have been responsible for the reckless indifference. Many professionals were forced to participate in disgraceful practices against their better judgement. Forensic psychiatrists and some general psychiatrists have played the role of whistle blowers as psychiatrists have in times past ... In NSW corrections continue to bulge with psychiatric patients and a survey indicated 60% have a psychiatric diagnosis and 30-40 % have a psychotic illness many going untreated.

(Clinician, New South Wales, Submission #26)

2003 NSW young people in custody health survey: summary of findings [242 young people (223 males, 19 females) representing 76% of all young people in custody]; ... 84% (178) reported symptoms consistent with a clinical disorder; ... 37% (78) had mild, moderate or severe symptoms consistent with a personality disorder; ... 73% (156) reported mild, moderate or severe symptoms consistent with psychosocial problems.

(Anonymous, New South Wales, Submission #64)

The CTOs [Community Treatment Orders] were a great step forward and a boon to the management of chronic schizophrenia when they were included in the Mental Health Act. The extension to six months before review was a needed improvement. BUT, it should be made possible, in the case of a chronic sufferer from schizophrenia who has previously been on CTOs on three or more occasions, for a new CTO to be ordered while the patient remainsin the community. Currently, for a new CTO to be ordered, a hospital admission is necessary. It is very difficult to get a schedule for an admission now, partly because of a lack of beds, and partly because of policy that is probably influenced by resources (even when the arguments under the act can be made out -the policy extends the severity of illness required). So the chronic sufferer begins to decompensate and friends and family watch the condition of the sufferer deteriorate over long periods, sometimes to destitution, and the sufferer disappears and cruises around the country, and unless picked up by police for causing an affray and taken to hospital, it can be many months before treatment is resumed and a schedule to hospital happens. It would be far better not to allow this excessive deterioration to occur. In such cases, a CTO from the community would also cost a great deal less. (author's emphasis)

(Family Member, New South Wales Submission #9)
6.1.11.4.11 Lack of treatment and support for people with mental illness after release from prison

The lack of coordinated treatment and support services for people with mental illness post release was previously mentioned under Standard 8.3 with regard to the need for whole-of-government approaches to circumvent poor release outcomes. In particular, advocacy and support while in prison and transition planning are critical areas of concern that could promote and protect the rights of prisoners with mental illness while in prison and immediately post release:

When he is released [from prison] he will once again go unsupervised relying on a pension. Once again as he has no other place to which to return he will stay with our mother. [X]'s condition is not one which permits us to supervise him. He does not accept family interference in his life except for monetary assistance when he gets into financial difficulty, and we fear that within a very short period of time the previous scenario will repeat itself. ... That the mentally ill feel they cannot cope and commit suicide or violence in those circumstances is not surprising. When a caring family feel that prison is 'good' and release is feared - it is a testament to how desperate things have become.

(Carer, Sister, New South Wales, Submission #104)
6.1.11.4.12 Lack of services for people with personality disorders

The Department of Corrective Services and the Police Association of New South Wales also raised concerns about the inability to access treatment and support services for people with personality disorder due to definition of "mental illness" under the Mental Health Act (1990). Both argued that this is a serious gap which results in no treatment or support services being available to many people with personality and behaviour disorders who come into contact with the police and in the criminal justice system positive results can be achieved from treatment to people with this disorder.

The problem for police is that many of the people they come in contact with who appear to be suffering from a form of mental illness, are being deemed by mental health professionals as not fitting the legislated criteria of a mental health disorder or illness - it is deemed to be behavioural, and as such, whilst these people are being assessed, they are being refused to be scheduled even though it is obvious they are not well ... This is a clear example of the difficulties being faced by police. There appears to police, to be a gap in the legislation in regards to behaviour and personality disorders. These people are not criminals but many are continual self-harmers.

(Police Association of New South Wales, New South Wales, Submission #59)

While mental health treatment is sometimes available for those with illnesses that fall under the Mental Health (Criminal Procedure) Act 1990, such a definition excludes those with personality disorders. There is a very high prevalence of severe personality disorders within the offending population and a major gap in service provision is commonly acknowledged for such individuals. Individuals with personality disorders are frequently not recognised as being "mentally ill". Consequently, Probation and Parole Officers are unable to obtain assistance from treatment providers to manage highly disturbed, and erratic "acting out" individuals, who often display self-injurious behaviour.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

Many behavioural problems among men and women in custody are consistent with symptoms of personality disorders. Until recently, there have been little evidence-based interventions for these more personality based disorders. But Dialectical Behaviour Therapy has emerged as a treatment choice for women with Borderline Personality Disorder and has shown good results in community based treatment programs.

(NSW Department of Corrective Services, New South Wales, Submission #295)

...but my complaint is that within services you get treated very, very differently depending on the diagnoses you have at the time ... Twice I have tried to escape from my psychiatric records by moving to a new city ... But I found out that even if I added things to my file (which you are allowed to do) you can't take things out. The language was awful and the information inaccurate ... I wanted all references to Borderline Personality Disorder expunged from my life and my file.

(Consumer, New South Wales, Submission #327)

One day I asked [my psychiatrist] whether he had any patients with Borderline. He said he didn't like using that label because it brought such terrible consequences for people but, yes, he did see quite a lot of people who would fit into that category. I asked him what the treatment was and his immediate answer was to say, "the first thing I do is treat them nicely! This is a new experience for most of them".

(Consumer, New South Wales, Submission #327)

People who doctors have decided have a 'personality disorder' are treated in the public system like we are not even human half the time - like dirt. My friend calls us ground feeders - we just pick up scraps of services that everyone else has discarded. How do we stop professionals judging us so badly?

(Consumer, New South Wales, Submission #205)

The response of the system to crisis is appalling. It would have been so much more healthy for me if I had been able to say, "if I can't find somewhere safe for a while all hell is going to break loose and I am going to hurt myself" and then have that responded to with respect and dignity as an assertive act of self-help. Instead of being able to say this and have it acted on I always 'knew' (like so many consumers with a 'Borderline' diagnosis 'know') how the system works. We 'know' that the system will only roll into gear after the cutting has happened and then in a judgemental way that is supposed to stop you doing it again. It doesn't. (author's emphasis)

(Consumer, New South Wales, Submission #205)

My experience with this particular label [Borderline Personality Disorder] has left me soured ... I did end up admitted twice after I returned to Sydney in 2001 ... On the whole these were slightly more bearable experiences for a number of reasons. Primarily they were better because I had a diagnosis of a 'real' mental illness (Bi-Polar Affective Disorder) and this meant that staff treated me a bit better. That's not to say it was great but there is something about being seen to be legitimately sick which makes staff more compassionate, more respectful and more tolerant of your quirks and strangness's.

(Consumer, New South Wales, Submission #327)

What I'm trying to convey is the frustration and isolation that we feel with insufficient support for [X] and myself. I live with the terror that he may take his life at any time. The medication takes time to work but no support therapy is offered while you are in this frightening situation ...

(Carer, Mother and Nurse, New South Wales, Submission #147)
6.1.11.4.13 Lack of treatment and support services for consumers who are homeless

Concerns were expressed regarding the lack of treatment and support services for consumers who are homeless. The increasing number of people who are homeless and who have a mental illness and/or mental health problems has also risen with deinstitutionalisation and the subsequent lack of community based treatment and support services to meet the community's needs. Standard 11.4.6 states: 'The MHS ensure access to a comprehensive range of treatment and support services which address physical, social, cultural, emotional, spiritual, gender and lifestyle aspects of the consumer'.

It is the City's view that a number of people who are homeless and who have a mental illness are suffering from significant neglect of their mental health conditions. This contravenes the right of people who are mentally ill to receive adequate treatment and care. (author's emphasis)

(City of Sydney, New South Wales, Submission #345)

Most people who are homeless and who experience a mental illness pose no threat to the public. In too many instances, witnessed by workers in the City's Homelessness services, their mental health conditions remain inadequately treated. Out-patient mental health services, designed for people living in their own homes within the community are a poor model for the provision of treatment for people who are long term and episodically homeless. Significantly more long term rehabilitation and community based supported accommodation options need to be developed to meet current need.

(City of Sydney, New South Wales, Submission #345)
6.1.11.4.14 Limiting access to treatment and support by diagnosis

Concern was raised regarding treatment and support only being provided to a limited group of people with mental illness or mental health problems:

We believe that the ESMHP [Eastern Suburbs Mental Health Program] needs to adopt a less narrow approach to provision of treatment and support - especially given that the vast majority of people who experience mental illness are not treated under the provisions of this legislation [NSW Mental Health Act 1990] anyway. This attitude is blatant on the JGOs committee (Joint Guarantee of Service between Health and Housing), and offered as an excuse for not even considering alternative options or solutions to consumer issues.

(Eastern Area Interagency NSW, New South Wales, Submission #100)

I am sure I will not be the first or only person to note that conventional MH systems still consistently fail the needs of:

•  those who "only" have anxiety,

•  those who have personality disorders, who may get admitted to hospital but rarely get more than acute services

(Clinician, New South Wales , Submission #128)
6.1.11.4.15 Lack of treatment and support services for people with eating disorders

Concern was expressed about the lack of availability and quality of treatment and support services for people with eating disorders:

...consumers or carers affected by eating disorders. I have been very involved with families affected by these insidious illnesses for more than ten years and have seen the discrimination and the refusal of governments to provide funding for treatment and dissemination of information.

(Anonymous, New South Wales, Submission #58)

Meanwhile ... family finances are being over-stretched to meet psychologists' fees because there are very few with E.D. [Eating Disorder] expertise in the public sector; and most important and painful of all, our young people are dying or suffering severe physical and psychological health problems.

(Anonymous, New South Wales, Submission #58)
6.1.11.4.16 Lack of treatment and support in regional and remote areas

The vast geographical area in Far West NSW poses serious challenges to the planning and delivery of services to meet Standards 11.1.3 ('mental health services are provided in a convenient and local manner and linked to the consumer's nominated primary care provider') and 11.1.5 ('the MHS ensures effective and equitable access to services for each person in the defined community'). For people living in many areas of NSW there are few services and generally no services which are convenient and local. Access to care involves long distances by car, a significant barrier for those who are not so readily mobile or have their own transport.

The latest incident was of a client that had been bailed by the Local Court to be assessed by the visiting psychiatrist after attacking his mother. This client was scheduled and sent to the nearest psychiatric facility. The client was dropped off at their local railway station upon release, became intoxicated and was returned to the hospital as he was very distressed, only to be released with no follow up two days later. This client is now homeless as the family has grave fears for their safety and there was nowhere in Lightning Ridge, Walgett or Dubbo to place him. Undoubtedly he will end up in the prison system.

(Walgett SAAP Services, New South Wales, Submission #63)

A local GP recently stated that he preferred to send a mental health client to Walgett SAAP Services as they were understaffed at the local hospital and stated that hospital staff were uncomfortable with handling mental health clients.

(Walgett SAAP Services, New South Wales, Submission #63)

Clients who are violent or threatening self harm are sometimes scheduled after a great deal of difficulty. They are transported at great expense of time and money to the nearest psychiatric hospital. Two days later, the client is sent - not collected or taken - back to Walgett with a note attached that says, "There is nothing wrong with this fellow." When he arrives back in Walgett he immediately becomes a major problem for the Mental Health team, the local GPs, the police, the hospital, the community, the family and Walgett SAAP Services. None of these services or individuals is configured to deal with violent clients. It has become such a problem of late, that GPs and the Mental Health team are extremely reluctant to schedule a patient because they know it will be a useless exercise.

(Walgett SAAP Services, New South Wales, Submission #63)
6.1.11.4.17 Lack of treatment and support for people with Acquired Brain Injury

The lack of mental health services to provide treatment and support for people with Acquired Brain Injury (ABI) was raised by one NGO service provider. In particular, it was noted that people with ABI have very complex needs in addition to mental health problems (e.g. intellectual disability as a result of the brain injury) and that many consumers with ABI "fall through the cracks" due to eligibility criteria. Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of services which are, wherever possible, specialised in regard to dual diagnosis ...'.

[X] was involved in a motor vehicle and suffered head trauma ... [X]'s financial affairs are managed by the Office of the Protective Commission ... As a consequence of the head trauma she has suffered, [X] is probe to mood swings. She can be very anti social, abusive and sometimes violent. Lake Macquarie Mental Health will attend her home only in pairs and with a police escort ... Through face-to-face dealings with [X] in her own home, we have become very concerned for her wellbeing, both physical and mental ... Lake Macquarie Mental Health say that while [X] does have mental incapacity because it was caused by head trauma, she does not come under the charter of the Mental Health Act. As a result she is left without supervision to fend for herself ... Commonsense suggests that if a person or organisation could be found that could by regular face-to-face contact "case manage" [X]'s basic needs, i.e. provision of regular hot meals ... advice on pain management ... home maintenance ... transport ... psychological counselling ... then the quality of life for [X] could be improved dramatically and as a consequence her anti social activities may improve ... Another alternative would be for the Mental Health Act to be amended in order to include in [their] services the many people like [X] who currently "fall through the cracks".

(NGO Service Provider, New South Wales, Submission #129)
6.1.11.4.A Community Living

The MHS provides consumers with access to a range of treatment and support programs which maximise the consumer's quality of community living.

Under this Standard, submissions and presentations indicate concerns about:

  • need for programs which teach self-care skills;
  • lack of access to education, training, work and employment programs;
  • lack of community support services;
  • lack of access to family centred approaches; and
  • lack of social and recreational programs.
6.1.11.4.A.1 Need for programs which teach self-care skills

Living skills and self care programs would enable consumers to live with dignity in society and are seen as critical. Standard 11.4.A.13 states: 'The MHS provides a range of treatment and support which maximises opportunities for consumers to live independently in their own accommodation' and 11.4.A.2 states: 'Self care programs or interventions provide sufficient scope and balance so that consumers develop or redevelop the necessary competence to meet their own everyday community living needs.' As reported in many submissions and presentations, a lack of availability of supported accommodation forces many consumers to return to live with their families. In many instances, this placed strain on families as they waited for places to become available. Additionally, the lack of self care and living skills programs reported meant that consumers were not able to gain the necessary skills to live independently and move out.

Programs like living skills have been dropped out of NSW.

(Consumer Advocate, New South Wales, Parramatta Forum #3)

Our families want a life, a job, accommodation. We can't get home care or meals on wheels for our loved ones. Why is this? When our children come out of hospital they are often severeley disabled, they can't remember how to cook or clean up after themselves. So why can't they get home help in these situations?

(Carer, New South Wales, Parramatta Forum #1)

I have been a carer of my son for the last 15 years. He became ill in his final year of high school and he still lives his life as a child. He has no adult life experiences so he lives his life as a child. There are no opportunities for rehabilitation or recovery for him. He has to rely on me to look after him but what will happen to him if I can't look after him anymore?

(Carer, New South Wales, Sydney Forum #13)
6.1.11.4.A.2 Lack of access to education, training, work and employment programs

Access to education, training, work and employment programs are seen as critical for consumers to reintegrate and live in the community with opportunities to participate socially and economically. Concerns were expressed regarding access to such opportunities. Standards 11.4.A.4 to 11.4.A.9 aim to ensure access to a wide variety of programs, activities and agencies to maximise the consumer's success in these endeavours. Specifically Standard 11.4.A.6 states: 'The MHS provides access to, and/or support for consumers in employment and work'.

Why are consumers lacking equal access to employment, poor health outcomes, access to education. 76% with a mental illness are unemployed.

(Consumer, Carer & Consumer Consultant, New South Wales, Sydney Forum #1)

There is no Employment Agencies for people with Mental Illness. There is only a few. Care Employment in Enfield has closed.

(Consumer and Consumer Consultant, New South Wales, Submission #226)
6.1.11.4.A.3 Lack of community support services

I lost my brother 5 years ago. My brother, like many others with a mental illness doesn't have a voice. My brother suicided in a hospital ... My brother is just an example of what will happen to others who are failed by the system. People are placing too much faith in institutions - people need access to good quality community care without having their human rights abused. My brother had care at Rozelle but he didn't really qualify for that catchment area so he then had to go back to St George but there wasn't anything for him to do there.

(Carer and Teacher, New South Wales, Sydney Forum #7)

The aim of deinstitutionalisation was to provide treatment and support in the least restrictive setting, which for most people means living in the community. However, as discussed above, the necessary treatment and support services and effective systems have not materialised. This is true for both people with serious mental illness living in the community and people who, as a consequence of failure to access treatment and support services at the onset of illness, develop significant disability and require additional community support services to live independently or with their family.

These services once delivered by Health have increasingly been privatised and excised form health interventions. This has led to poorly resourced, and in this area, the closure of essential Living Skills Centres due to cessation of funding and the abdication of all responsibility by Health in providing fundamental social and recreational services. There is good argument for the continued review and improvement of services aimed at helping people experiencing mental illness to remain active members of their communities.

(Clinician, New South Wales, Submission #197)

My dad and my brother both need home care support at the moment. The hospital told us they would just lock them in a room so we would be better off taking them home. I don't know how to explain to you how it feels when you are told to take these people home. The pressure is enormous.

(Disability Community Worker, New South Wales, Parramatta Forum #2)

...there is no community support from services until these people become very unwell.

(Anonymous, New South Wales, Submission #156)

Almost everything I have to do is hard, but I don't let on because I don't want people to think I'm crazy. Finding where I have to go for appointments is hard, figuring out which bus & where to catch it is hard. I put off making a psychiatrist appointment because I didn't know where to go. Getting to my therapist was my main priority & anything that involves thinking exhausts me. I sleep a lot. I have people ring & I don't know who they are or they leave messages & I can't ring them back because I can't find their number ... My therapist has given me her mobile number, but I feel reluctant to use it because sometimes all I need is reassurance. Sorry to rave on, but it just really gets me down sometimes & I feel really alone.

(Consumer, New South Wales, Submission #69)

I think we urgently need respite for single mothers.

(Consumer Consultant, New South Wales, Parramatta Forum #9)

Support to maintain independent living is another area of great unmet need.

(Clinician, New South Wales, Submission #197)
6.1.11.4.A.4 Lack of access to family centred approaches

Many reports were received from carers, NGO and family workers describing the incredible strain that has been placed on families. In particular, a lack of access to family centred approaches and support groups was repeatedly mentioned. Standard 11.4.A.12 states: 'The MHS ensures that the consumer and their family have access to a range of family-centred approaches to treatment and support' and Standard 11.4.A.11 states: 'The consumer has the opportunity to strengthen their valued relationships through the treatment and support effected by the MHS'.

We need to nurture the family unit and we need services to nuture the family unit.

(Carer, New South Wales, Parramatta Forum #1)

Furthermore, there seems to be no support network for parents of mentally ill teenagers, and my 'coping' abilities are being sorely tested.

(Carer, Mother, New South Wales, Submission #92)

As a worker working with vulnerable families - it's the same problem we see - there's no follow up. I spend a lot of time with clients and it is often hard for them to tell their stories time and time again. Often case workers tell them they will contact them but this does not happen. We take them up again and again. They need to see somebody who's specialised.

(Clinician, New South Wales, Submission #5)

People with mental illness often present with families. When people present their carers often have no input into the care planning - this situation really needs to change. It's the people who are closest to the consumer that know best. For women who have un-well children it is hard if they are not informed of the child's treatment care plan. Families are not supported and there is a general lack of information.

(Consumer, Carer & Family Worker, New South Wales, Broken Hill Forum #23)

Families not supported - we know entire families who are adrift.

(Consumer, Carer & Family Worker, New South Wales, Broken Hill Forum #23)

Families and friends of people with mental illnesses are similarly under increasing pressure to fill the gaps in necessary care and support. Family support groups frequently bemoan the lack of response from emergency and case management services and the lack of access to psycho-social rehabilitation services. Assessment of the capacity of carers to support consumers and their inclusion in planning care programs needs to be formalised. The impact of caring for a family member or friend experiencing mental illness can, itself create mental health problems in carers. Carers may experience fear, anxiety, guilt and depression and may in some circumstances have real concerns for their personal safety. There is currently inadequate consideration and support given to carers of people experiencing mental health problems.

(Mental Health Coordinating Council, New South Wales, Submission #298)
6.1.11.4.A.5 Lack of social and recreational programs

Access to day programs to meet the needs for leisure, recreation and employment (Standard 11.4.A.4) were also reported to be declining. Access to such programs is seen as critical for consumers to reintegrate and live in the community with opportunities to participate socially and economically and to prevent relapse. Concerns were expressed regarding the lack of access to such programs and that consumers in the community have no opportunity to develop any skills. Standards 11.4.A.4-11.4.A.9 ensure access to a wide variety of programs, activities and agencies to maximise the consumer's success in these endeavours.

The impact of the erosion of community based rehabilitation services has been underestimated, as the networks of support so critical for the maintenance of stable mental health are removed, the burden upon the health system grows even larger. This again typifies a lack of understanding indeed an ignorance of the issues of those living with mental health conditions, as these programmes that offer social networks, education and recreation play a key role in the maintenance of mental health, community and social cohesion, and significantly contribute towards decreased admission rates, and burden upon the health care system.

(Clinician, New South Wales, Submission #197)

[X] needs something to keep him occupied as he is unable to work. Why there are no day centres for menta health sufferers to make them feel useful and valued in our community. He is a human being and deserves to be looked after just as a cancer or heart attack suffer does.

(Carer, Mother, and Nurse, New South Wales, Submission #147)

The MHCC strongly supports a community focussed, non-institutional system of mental health care ... MHCC's major concerns are related to the inadequate levels of community mental health services provided by the public health system and the shortage of psychosocial rehabilitation services. The latter services respond to a person's 'whole of life' needs in a community setting and include supported residential services, day centres which provide social and recreational activities and link clients to other such services in the community, outreach support services, vocational and employment services, and information and education services. Even though NSW Health has recently acknowledged in its draft document, NGOs and Mental Health: a Framework for Partnership, that these services are most appropriately provided by the non-government sector (NSW Health, 2002), there has been no indication that new funds will be allocated for this purpose.

(Mental Health Coordinating Council, New South Wales, Submission #298)
6.1.11.4.B Supported Accommodation

Supported accommodation is provided and / or supported in a manner which promotes choice, safety, and maximum possible quality of life for the consumer.

Tragically, the homeless people are the forgotten people. You won't hear from the homeless people even in a meeting like this.

(NGO Nurse Unit Manager, New South Wales, Sydney Forum #3)

The move to community-based care initiated under the Richmond Report has resulted in increased numbers of people with mental illness who are homeless. "The change in vagrancy laws and the Richmond Report have greatly contributed to one of the changing face of the homeless, being mentally ill sufferers. The government tried to sell the proposal as the community helping the community."

(Carer, Daughter, New South Wales, Submission #134)

Under this Standard, submissions and presentations indicate concerns about:

  • the lack of supported accommodation;
  • lack of supported accommodation for offenders with mental illness or mental health problems;
  • lack of supported accommodation options for consumers form a non-English speaking background (NESB); and
  • ack of resources and support services for NGO supported accommodation providers.
6.1.11.4.B.1 Lack of supported accommodation

As noted previously in this Report (8.3 Integration), the lack of housing and accommodation options, and supported accommodation options in particular, for people with mental illness is a serious barrier to consumers attaining the 'maximum possible quality of life' and integrating and contributing to the community. Many consumers who could not access supported accommodation became homeless, complicating access to treatment and support and increasing the likelihood of entry into the criminal justice system. An indication of the lack of available supported accommodation in NSW was the report by one carer in Sydney who was offered a place for her mother in Goulburn. Standard 11.4.B.9 states: 'Where desired, consumers are accommodated in the proximity of their social and cultural supports'.

I am advocating a modern asylum model. The move to community care hasn't improved the situation. We need to target funding to meet the needs of the homeless. The homeless don't have friends or family. There are deaths all the time.

(NGO Nurse Unit Manager, New South Wales, Sydney Forum #3)

In her recent and still current admission, the various workers who are involved with my mother called me into a meeting and proposed that I consider an option of permanent hospitalisation for my mother, based on how well she responds to the structured environment of the hospital and how well she was on "Clozapine". Of course, I needed to think about the proposal but I knew it would mean that Mum would be safe off the streets and in an environment that she seems to respond to. The corker of the situation is, that my mother comes under the Eastern Suburbs area, and the closest option for my mother is to be based in Goulburn, which apparently is not really a long-term stay facility.

(Carer, Daughter, New South Wales, Submission #134)

There isn't enough crisis accommodation for homeless men. From my observations about 80% of homeless people have a mental illness, about 50% of those have a dual drug and alcohol diagnosis. We regularly have about 50-60 men sleeping in the laneways in the surrounding blocks to our accommodation service and at any one time you'll see about 100 "sleeping rough" on the streets.

(NGO Nurse Unit Manager, New South Wales, Sydney Forum #3)

The problem of finding suitable accommodation was a constant source of frustration for all those working in this industry. I don't believe that the community or the government fully understand the impact that lack of care and accommodation not only on the chronically ill but also to the cost to society.

(Social worker, Student, New South Wales, Submission #118)

The move to community based services, while positive, has not been matched by attention to stratified and good quality accommodation options for persons with chronic mental illness who rarely can access supervised community accommodation. Disabled and disorganised patients flounder in unsupervised single accommodation, are cast onto the streets, or are involved in "revolving door" admissions to acute units, which are the only "accommodation" facilities remaining for them. A distressingly high number kill themselves.

(Public Sector Psychiatrists, New South Wales, Submission #297)

Living on the street further complicates matters by making it difficult for mentally ill person to receive follow-up services. Without this and ongoing care, these individuals stop taking their medication and sooner or later, end up having a run in with law enforcement. It is at this point that, what was once the institution's mental health problem, now becomes a police problem.

(Police Association of New South Wales, New South Wales, Submission #59)

[X] has been placed on Clozapine, which requires regular blood testing as a health precaution. Also, problems can occur is she comes off the medication. This is difficult as she is regularly non-compliant and homeless.

(Carer, Daughter, New South Wales, Submission #134)

[X] was in a dreadful mental state and got in arrears with his rental, and his carer (who was a druggie friend) caused complaints from neighbours. This resulted in [X] being evicted and becoming homeless, and losing all his possessions as he had no place to store them. He also was charged with two offences and went before the court where THEY FINED HIM ... (author's emphasis)

(Carer, Sister, New South Wales, Submission #104)

The closure of long term residential care beds in institutions has not been accompanied by the development of properly resourced and supported community accommodation. Sub-standard conditions in boarding houses are of great concern. In addition, placing consumers (people with mental illness) into public housing without ongoing supervision and support has lead to a deterioration in health of consumers and serious problems for other tenants in public housing.

(NSWCAG, New South Wales, Submission #273)

The Richmond Fellowship (providing supported accommodation for people with schizophrenia) has waiting lists of up to 2 years - cannot take on any more clients

(Consumer and Consumer Advocate, New South Wales, Submission #169)

We have been told that there is nowhere suitable for [X] to be released to after leaving the Chisholm Ross Centre. The extended care unit at Goulburn has a 6 month waiting period and that the most we can hope for is that [X] will be able to move into an unsupported community house on his own in Queanbeyan. We believe this to be unsuitable and to pose an unacceptable risk to [X]. We believe that the health authorities have a duty to keep [X] safe, and wish to record our concern, based on recent history as outlined above, that this is not being achieved in an effective manner.

(Carers, Parents, New South Wales, Submission #198)

We are still trying to find suitable accommodation for [X] after his release from hospital. It is very obvious to all that [X] needs to go into supported accommodation to help with his rehabilitation. He has shown that he can be very well, given the right set of circumstances, which include support of his family, psychiatrist and suitable supported accommodation. It is our greatest wish that [X] be well enough so that he may enjoy a useful and happy independent life.

(Carers, Parents, New South Wales, Submission #198)

We have been told that there is a 4 month wait for a bed, and that interim arrangements are not possible. We find this very frustrating and have not had a very satisfactory explanation as to what strategy is being put in place to get [X] back to Hennessey House.

(Carers, Parents, New South Wales, Submission #198)

One submission was received highlighting the positive outcomes that can be achieved when supported accommodation is available and support is provided which maximum quality of life for the person with mental illness:

After my mother's death in 1999, I went to live in a room for 12 months up until the end of 2002. Then I was fortunate enough to be offered a place at Irene Luth Cottages at Carlingford in April, 2003, where I have lived happily for about 15 months now. We have four carers / support staff who look after us, and one of them is "on call" 24 hrs a day in case of any emergencies. There are 21 residents in two complexes at Carlingford. This includes two houses & 16 separate units. There are 2 people in our house, and 3 in the other one. We have men and women living here ... I haven't had a further breakdown [schizophrenia] since 1976, and I am trying very hard, with the help of my medication not to have one. I keep myself pretty busy, with grocery shopping, walking & occasionally going for a swim in a heated pool at Northmead. Also I go on "little adventures" as my friend [Z] calls them ... Occasionally I do some voluntary work ... I find there is still a "stigma" attached to people with a mental illness ...

(Consumer, New South Wales, Submission #308)
6.1.11.4.B.2 Lack of supported accommodation for offenders with mental illness or mental health problems

The Department of Corrective Services expressed concern at the lack of crisis, medium and long-term supported accommodation options for offenders with mental illness and / or mental health problems. The Department of Corrective Services noted the importance of such accommodation as many offenders may have intellectual disability and many female offenders are the primary carers of children.

Crisis, medium and long-term supported accommodation for offenders with mental health issues and intellectual disability is urgently needed for all community-based offenders (probationers and parolees) throughout the state.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

There is a consistent lack of accommodation and community based services for women offenders with mental health issues. Additionally, if a woman is the primary carer of children it is even more difficult for that woman to find appropriate accommodation. Most women in custody are the primary carers of children.

(NSW Department of Corrective Services, New South Wales, Submission #295)

Undoubtedly, homelessness is a major issue for offenders with mental health issues ... homeless mentally ill people are up to 40 times more likely to be arrested and 20 times more likely to be imprisoned than those with stable, suitable accommodation. While statistics are not available, there would appear to be no compelling reason why the situation would be different for mentally ill offenders in NSW. Incarceration appears to worsen post release accommodation issues ... Further, offenders released with no stable accommodation were three times more likely to re-offend than those who had accommodation.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)

As a result of Drug Summit reallocation of funding COS have been able to develop a limited crisis accommodation initiative for higher risk offenders who are at risk of drug relapse due to homelessness.

(Community Offender Services, Probation and Parole Service, Department of Corrective Services,
New South Wales, Submission #317)
6.1.11.4.B.3 Lack of supported accommodation options for consumers form a non-English speaking background (NESB)

One clinician expressed concern at the lack of accommodation options for people from a NESB. Standard 11.4.B.12 states: 'Wherever possible and appropriate, the cultural, language, gender and preferred lifestyle requirements of the consumer are met'.

Structured and supported accommodation services for people with a mental illness and aged care is in crisis. Some people from a NESB believe they are responsible to care for their family member. The problem is that when we finally convince them to accept support them they find there are no services.

(Clinician, New South Wales, NESB Parramatta Forum #17)
6.1.11.4.B.4 Lack of resources and support services for NGO supported accommodation providers

Concern was expressed that NGO services providing accommodation are unable to access support from mental health services when required, even during a crisis, placing consumers at risk. Standard 11.4.B.14 sates: 'The MHS support consumers in their own accommodation and supports accommodation providers in order to promote the above criteria' [11.4.B.1 - 11.4.B.13]:

NCOSS has received reports that supported accommodation providers are consistently unable to obtain necessary support services from mental health teams, including crisis response services, to assess and manage clients with mental disorders.

(NCOSS, New South Wales, Submission #47)

Walgett SAAP Services is receiving more and more clients referred by the court system and the mental health team ... It is important to emphasise here, that Naomi House is a Non Government Organisation. The staff are caring and supportive but are not trained professionals. They do the best that they can, but the role of Naomi House and Walgett SAAP Services is that of referral to professionals. Walgett SAAP Services is dealing with clients who are non-conformist in the extreme. If Walgett SAAP Services does not / cannot take the client, often the only alternative is a jail cell.

(Walgett SAAP Services, New South Wales, Submission #63)
6.1.11.4.C Medication and 0ther medical technologies

Medication and other medical technologies are provided in a manner which promotes choice, safety and maximum possible quality of life for the consumer.

Under this Standard, submissions and presentations indicate concerns about:

  • the emphasis on medication; and
  • unsafe practices during treatment using Electro Convulsive Therapy.
6.1.11.4.C.1 Emphasis on medication

Concern was expressed that the major focus of treatment for mental illness is a reliance on medication without consideration for other necessary treatment and supports and overall well-being.

The system is structured in such a way that there's too much of a reliance on medication and not enough attention to the other important things like rehabilitation and psychosocial support, housing, etc.

(Mental Health Worker, New South Wales, Sydney Forum #10)

I lost my brother 5 years ago ... [X] had a dual diagnosis (mental illness & drug and alcohol) - he suffered for 11 years from the age 16. As many carers would know most people with a mental illness need large doses of medication - they do take the drugs but they need more.

(Carer and Teacher, New South Wales, Sydney Forum #7)

Inpatient Care is often characterised by an over-reliance on medication as the only form of treatment. While there are often some groups being run in inpatient areas, these are usually very scant on weekends, and consumers often report they spent a week in the inpatient area and no nurses talked to them the whole time. Admittedly, this is mainly the old-guard mental health nurses, the younger ones usually have a better attitude and often do talk to consumers.

(Consumer Activist, New South Wales, Submission #257)

Since then I believe there has been improvements in the medications being used and how they are used. I believe also there has been a growing interest in consumer participation in deciding suitable drug use.

(Clinician, New South Wales, Submission #356)
6.1.11.4.C.2 Unsafe practices during treatment using Electro Convulsive Therapy (ECT)

Carers expressed concern regarding the apparent lack of regard for the safety of their daughter by staff during treatment using ECT. However, a clinician noted use of this therapy has improved.

Over three weeks from 9 January 2002, our daughter had a series of ECTs. On 23 January 2002, we observed that no MHU staff accompanied her to the theatre. This was the second time that she was unaccompanied by MHU staff, whom we were told had this responsibility as duty of care, and this MHU delinquency angered the medical ward and theatre staff. We observed on this same day that MHU sent a patient to theatre who had had a drink, and she was rejected by theatre staff.

(Carers, Parents, New South Wales, Submission #106)

The use of ECT has improved over the years with the most recent being a lowering of the electrical current used to produce a more effective seizure that is safe and has fewer undesirable SEF's.

(Clinician, New South Wales, Submission #356)
6.1.11.4.D Therapies

The consumer and consumer's family / carer have access to a range of safe and effective therapies

Under this Standard, a presentation indicated concerns about:

  • the costs associated with accessing therapies making this a limited option for many consumers.
6.1.11.4.D.1 Lack of access to a range of accepted therapies

According to Standard 11.4.D.2: 'The MHS provides access to a range of accepted therapies according to the needs of the consumer and their carers'. However, concern was expressed that many people can not afford to access such therapies as access via the public mental health system is difficult, bulk-billing psychiatrists are few and Medicare is not available for psychologists.

While living with a mental illness is hard, the fact is that if you have money you can get help. For example, with money you can access other forms of therapy (non-drug), which can help greatly but we can't access this care through Medicare.

(Carer, New South Wales, Sydney Forum #9)
6.1.11.4.E Inpatient care

The MHS ensures access to high quality, safe and comfortable inpatient care for consumers.

[X] believes that patients are treated as 2nd class citizens. They do not receive the same level of care you would receive in other health facilities.

(Anonymous, New South Wales, Submission #156)

Under this standard, submissions and presentations indicate concerns about:

  • consumers suiciding in hospital settings;
  • lack of beds;
  • excessive use of restraint;
  • protection from harm not ensured;
  • need for separate psychogeriatric facilities;
  • inpatient units in poor condition;
  • lack of privacy and lack of choice;
  • patients absconding from hospitals and involvement of police; and
  • use of police to transport consumers to and between hospitals.

Early discharge - people are moved from wards to overnight rehab beds so another patient can have their bed. This type of system is not in favour of patients or their family or staff. We have 56 patients in a 33 bed ward. Patients are often put on leave for a week because we have a bed shortage. Their clinical care is being determined not by their need but by the availability of resources! The ones who have families are the ones who are discharged more quickly.

(Service Provider, New South Wales, NESB Parramatta Forum #21)
6.1.11.4.E.1 Death while an inpatient

Of most serious concern were reports of deaths of consumers while an inpatient and that hospitals did not provide safe settings or have adequate policies and procedures to ensure safety. Reports were also received of consumers who died very soon after discharge (see Standard 11.6).

...we have lost our son in Carasta [Caritas] Mental Health Hospital (Branch of St Vincent Hospital Sydney). It happened on the 16th of June 2003. We are devastated as we thought he would be safe and looked after in hospital. We made several calls to Dr [Y] (second name slips my memory) and the nurses who where looking after our son. I also told them to get in touch with Dr [Z] who had seen our son 18 months prior. He was willing to speak to them. Our darling son had written a letter and if you read it, he didn't want to die. I don't know how he could manage to get a sheet, plait and wet it and hang himself in the corridor without being noticed. They knew he was very sad, but when we saw the hospital where it happened it was so depressing. They told us that depressed people did not notice their surroundings. Also it was 12 hours before the police (not the hospital) called us. We kept him on life support for 10 days and in that time felt the staff, especially [W] and [V] kept very tight ranks on the matter. There are so many bazaar happenings and as we both were shocked and devastated we felt we should have stayed on and pursued it more ... Our son was told he could not leave as he was too ill and was on 24 hour surveillance, and this happened ... Dr [Z] ... He felt there was not enough done. I feel the medication he was on made him do what he did. So much to say, but I think you would know.

(Carer, Mother, New South Wales, Submission #135)

I lost my brother 5 years ago. My brother, like many others with a mental illness doesn't have a voice. My brother suicided in a hospital - I came from a modest European background. My parents believed that we would get care. [X] had a dual diagnosis (mental illness & drug and alcohol) ... My brother had care at Rozelle but he didn't really qualify for that catchment area so he then had to go back to St George but there wasn't anything for him to do there.

(Carer, Sister, New South Wales, Sydney Forum #7)
6.1.11.4.E.2 Lack of beds

The lack of available beds for acute care was also cited as a serious concern. As discussed previously, access to these beds for consumers in rural and regional areas was particularly problematical. Patients requiring admission were generally in desperate need of medical care, often life-saving medical care. It appears that the demand far exceeds the number of beds available which results in a whole series of other decisions which jeopardise the safety and rights of consumers including: non-admission and returned 'home', admission and someone else who is still unwell is discharged to vacate a bed, lengthy waits in emergency departments, being held in seclusion, or admission to other wards with the use of sedation or security guards.

In this area we have 30 beds for 900,000 people. We need at least 90 beds. What we have is a rolling door of people in and out of hosital. They are frequently discharged too early to make way for others.

(Carer, New South Wales, Parramatta Forum #1)

On 4 January 2002, after a case meeting, MHU staff helped us remove my daughter from the floor of the isolation room where she'd put herself, into a self-contained room in the MHU ward. She could hardly walk, (because of her state of mind and her cracked and bleeding heels), a wheelchair was unavailable and so she was carried; another female patient who was recovering from an ECT had to be removed from the bed for my daughter's occupation. I would be very displeased if I were the father of that patient.

(Carers, Parents, New South Wales, Submission #106)

The inpatient system comprises a small number of beds in psychiatric hospitals, and a large number of scattered small acute admission units in general hospitals. For those at the coalface, there is an insurmountable, overwhelming daily challenge searching for beds, arising from a state-wide bed gridlock. Registrars in particular get 'chewed up' trying to find beds. Associated community services have generally contracted and community rehabilitation positions have been lost, resulting in increased pressure on beds and emergency departments. These services are swamped by inexorably increasing caseloads and demands. It is impractical to explore and provide innovative, 'best practice' models of service delivery in such an environment.

(Public Sector Psychiatrists, New South Wales, Submission #297)

There is a real shortage of beds and this results in a crisis occurring every weekend with respect to beds and community based care ... What happens is that they get lined up in emergency departments, which are overfull in any case and ED staff are stressed and unhappy. Alternatively other patients are moved from the psych unit to general wards to make room for new admissions or people are sent home earlier than desirable clinically, with fingers crossed! This is really a system problem, not a clinician problem.

(Anonymous, New South Wales, Submission #303)

The bed problem is out of control. Previously we had 121 at our hospitals and now we have less than 54. We had 10 neuropsychiatry beds and now there are 2!

(Anonymous, New South Wales, Submission #303)

It is reasonable to ask why the law permits the release of mentally ill individuals and why chronic community problems are not kept in hospitals for longer periods of time ...

(Police Association of New South Wales, New South Wales, Submission #59)

Lack of community support leads to 'revolving door' admissions - leads to no spare beds in hospitals. Huge shortage of mental health nurses. In Manly, 5 patients were being looked after in emergency by security guards.

(Consumer and Consumer Advocate, New South Wales, Submission #169)
6.1.11.4.E.3 Excessive use of restraint

Standard 11.4.E.1 states: 'The MHS offers less restrictive alternatives to inpatient treatment and support provided that it adds value to the consumer's life and with consideration being given to the consumer's preference, demands on carers, availability of support and safety of those involved'. Excessive use of restraint, sedation and seclusion infringes on many consumer rights, as described in the submission below. The unnecessary use of such practices is also problematical given the scarcity of early intervention and treatment options in the community setting, necessitating consumers to reach crisis point before access to treatment is allowed, and then they are 'punished'.

I also want to talk about a story that was reported in the Penrith Press. The story is about patients being sedated for up to 5 days and being strapped to beds - they have no access to any therapeutic services, only TV or smoking.

(NGO worker, New South Wales, Sydney Forum # 8)

The use of Seclusion Rooms and involuntary restraint is still continuing in NSW. Seclusion Rooms and involuntary restraint, which are often, degrading, inhumane and traumatic, are a normal form of 'treatment' in NSW Public hospitals. Why is it that in other parts of the World including the U.S., Prevention Programmes have greatly reduced the need for these abuses, yet in NSW this form of treatment is still seen as legitimate?

(Consumer Activist, New South Wales, Submission #257)
6.1.11.4.E.4 Protection from harm not ensured

Concerns were expressed that protection from harm while an inpatient is not being ensured. Standard 11.4.E.15 states: 'The MHS provides a physical environment for inpatient care that ensures protection form harm, adequate indoor and outdoor space, privacy and choice'. Included in the notes to this Standard are: separate space for consumers with acute and sub-acute disorders, segregation/specialised units in the basis of gender and/or age and monitored seclusion.

[X]'s biggest complaint is that there are only 4 wards at the James Fletcher Hospital, and one of these wards is used for acute patients as well as forensic patients. While admitted to the locked ward, [X]'s wife was locked up with potentially aggressive men and / or criminals. There should be separate wards for males and females. Acutely psychotic patients, particularly large men can be very intimidating and not conducive to recovery when unwell.

(Anonymous, New South Wales, Submission #156)

We are also seeing a situation where there is an amalgamation of acute units with secure/involuntary wards. This means that patients are now being locked up in the same wards as involuntary patients.

(Carer, New South Wales, Parramatta Forum #11)

Previously it was rare to have very difficult and violent patients, but now we have many. I attribute this to increased illicit drug use and a lack of resources in the community.

(Anonymous, New South Wales, Submission #303)

Because the MHU ward is un-segregated according to patients' age, sex and degree of illness, we believe that our daughter unnecessarily became psychotic, which led to her body malfunctioning and thus to her having to be revived in a medical ward, and finally to her total duration in hospital of 8 weeks. We observed that MHU staff numbers only allowed ¼ of a person to each patient in the lock-up area, which we believe is inadequate supervision to guarantee a vulnerable patient's safety.

(Carers, Parents, New South Wales, Submission #106)
6.1.11.4.E.5 Need for separate psychogeriatric facilities

As noted above, Standard 11.4.E.15 states: 'The MHS provides a physical environment for inpatient care that ensures protection form harm, adequate indoor and outdoor space, privacy and choice'. Included in the notes to this Standard are: segregation/specialised units in the basis of gender and / or age. Concern was expressed the need for separate psychogeriatric facilities.

Another problem is the lack of dedicated facilities for older people with psychiatric disorders requiring admission. Older people don't mix well with younger people, particularly those younger violent patients who are taking illicit drugs and are psychotic. There are strong arguments for separate for separate facilities.

(Anonymous, New South Wales, Submission #303)

Not all psychiatric wards have a team approach to patient management. Old age psychiatry in particular needs a team approach.

(Anonymous, New South Wales, Submission #303)
6.1.11.4.E.6 Inpatient units in poor condition

Concerns were expressed (and noted previously in this report under Standard 1 - Rights) regarding the frequent poor condition and 'filthy' state of many inpatient units.

The James Fletcher Hospital is also frequently "dirty". [X] qualified that statement to say that "cleanliness could be upgraded to hospital standard". For example, the carpets are very dirty, which leaves patients with black feet. There was an example of food smeared on a window which was left for more than 3 weeks. A dead cockroach was left lying in a corridor for several days. There are frequently coffee stains left on the garden furniture. Overall, it is a very dirty environment, not what you would expect from a hospital.

(Anonymous, New South Wales, Submission #156)

During December 2001 and January 2002, we observed that both the MHU wards (open and lock-up) were generally in a filthy state, and we saw numerous cockroaches everywhere.

(Carers, Parents, New South Wales, Submission #106)
6.1.11.4.E.7 Lack of privacy and lack of choice

As stated above, Standard 11.4.E.14 stated that the MHS provides a physical environment that ensures privacy. Concern was expressed that a place for private telephone conversations was not available. Also, concern was expressed at the lack of any choice with regard to meal options.

... there is only one meal option available to patients, regardless of the individual's tastes or beliefs. There is often no privacy for patients using the telephone because if there is a staff meeting being held in the room housing the phone it is placed in the hallway.

(Anonymous, New South Wales, Submission #156)
6.1.11.4.E.8 Patients absconding from hospitals and involvement of police

The Police Association of New South Wales expressed concern regarding the high number of consumers, both voluntary and involuntary, who abscond from hospital. This is of serious concern for the safety of the consumer and the community. Additionally, the Police Association alleges that failure of hospitals to provide appropriate policies, procedures and resources to ensure the safety of consumers, results in the use of considerable police resources.

The problem for police, is that poor security and practices of mental health centres allows patients to leave care all too easily. Police must then use already sparse resources to return those patients to the centres and hospitals ... The first concern relates to the welfare and safety of patients who are Absent Without Leave...

(Police Association of New South Wales, New South Wales, Submission #59)

Secondly, police are concerned with the fact that they continue to expend considerable resources recording and investigating AWL [Absent Without Leave] reports, regularly escorting AWL patients back to Mental Health Units. On occasions, police have recorded up to 2 hours attending various locations and conducting patrols to locate patients, only to return the patient and have them leave the unit again, sometimes within hours. Thirdly, police are concerned with preserving the dignity of the patient. This brings up the issue of the inappropriateness of placing a patient suffering a mental health illness into the back of a police truck which is the least suitable vehicle for transport (this issue will be discussed in greater depth later in the submission) ...

(Police Association of New South Wales, New South Wales, Submission #59)

Police officers there are complaining that almost on a daily basis, both voluntary and involuntary patients are managing to leave the facility without the permission of staff. Little effort appears to be made by the staff there to return the patient other than on some occasions making a telephone call to the local police station advising them of the missing patient's name and description ...

(Police Association of New South Wales, New South Wales, Submission #59)
6.1.11.4.E.9 Transport to and between hospitals

Whilst we're talking about the police, numerous consumers have complained about the way the police have handled them on transporting them to hospital. Major education of police - if they're to be the transport service, which they shouldn't be, needs to take place.

(Consumer and Consumer Advocate, New South Wales, Submission #8)

Concern was expressed from one consumer advocate regarding the often unnecessary use of the police to transport consumers to hospitals and treatment. The Police Association of New South Wales also expressed many concerns regarding the use of police to convey consumers to hospital. Standard 11.4.E.3 states: The MHS ensures that a consumer who requires involuntary admission is conveyed to the hospital in the safest and most respectful manner possible'. Police expressed concerns that they are being used indiscriminately, in effect, as a "taxi service".

A problem has developed for police whereby mental health crisis teams are relying on them to transport mentally ill patients in contravention of the MOU. The fact is, mentally ill persons are a health issue, not a police issue ...

(Police Association of New South Wales, New South Wales, Submission #59)

A common complaint made by our members, is that there the use of police is being abused and that increasingly they are being used as a taxi service ... police are having to convey patients for example, from a hospital in a western metro area to a hospital in an inner metro area under schedule II, with no alternatives even being tried by doctors, which is effectively wasting police resources ... that medical staff are either ignorant of or disregarding of the MOU and local arrangements.

(Police Association of New South Wales, New South Wales, Submission #59)

The Association does not see this as a solution, however, as there are many occupational health and safety (OH&S) issues with placing the mentally ill and mentally disordered in the back of an ambulance. ... using police escorts in ambulances is also a concern due to other issues such as weapons safety and the return of police to the origin of the trip ...

(Police Association of New South Wales, New South Wales, Submission #59)

The fact remains that these individuals should not be treated as offenders and as such it is inappropriate to be transporting them in police vehicles. Police have received complaints regarding this very point by concerned family members of these patients ...

(Police Association of New South Wales, New South Wales, Submission #59)

The distance and time factors, particularly in country NSW with the limited number of mental health facilities and cost implications in police travel and escorting patients should be considered ...

(Police Association of New South Wales, New South Wales, Submission #59)

Hospitals are using police vehicles under the guise of Schedule II escorts as a cost-cutting measure as it means that they do not have to pay for ambulance transports ...

(Police Association of New South Wales, New South Wales, Submission #59)

What is desperately required is the establishment of a specialist service transport unit to take up this role ...

(Police Association of New South Wales, New South Wales, Submission #59)

6.1.11.5 Planning for Exit

Consumers are assisted to plan for their exit from the MHS to ensure that ongoing follow-up is available if required.

Under this Standard, submissions indicate concerns about discharge without adequate planning.

6.1.11.5.1 Discharge without adequate planning prior to discharge

One submission raised serious concerns about the inadequacy of discharge plans, and that sometimes they are not even instigated. Specifically, the allegation suggests that discharge plans have not been developed in collaboration with the consumer (Standard 11.5.2), that understandable information about the range of relevant services and supports have not been provided (Standard 11.5.4) and that consumers have not established contact with the service providers prior to exit (Standard 11.5.6).

Around this stage [July 2004], someone from the hospital telephoned and spoke to [X]'s wife, [Y], and asked hadn't they been monitoring him since his discharge from Hornsby Hospital in 2001. They indicated that he should have been monitored, initially weekly, then extending to monthly, and eventually quarterly, and that he should not have been discharged without arrangements in place for ongoing visits to a psychiatrist. When told that none of this had happened, the reply was that he must have "slipped through the cracks".

(Family Member, Father, New South Wales, Submission #346)

6.1.11.6 Exit and re-entry

The MHS assists consumers to exit the service and ensures re-entry according to the consumer's needs.

Under this Standard, submissions and presentations indicate concerns about:

  • suicide or homicide soon after exit;
  • lack of follow up despite promises; and
  • quick discharge without adequate planning prior to discharge.
6.1.11.6.1 Suicide or homicide soon after exit

Concern was expressed regarding the inappropriate discharge of consumers when they were still unwell. Such concerns were reinforced by the reports below from carers whose sons and daughters were discharged and either committed homicide or suicided soon after exit.

He said he didn't feel very well on his injections - and one night started hallucinating. He was on a trip with a friend in NSW and so he was taken to a large country town and was admitted to the hospital. The hospital called me to let me know what had happened and I was assured he would be ok. The nurse put him on the phone to me and he sobbed like a baby. The nurse said they would look after him. I kept phoning all day. It was like a panic button had gone off in me. At the hospital in NSW the Psychiatric Consultant who examined [X] phoned me and told me he was going to be discharged as he was only homesick. I pleaded with him not to discharge him as he was really sick and needed help. The Consultant said he was ok to be discharged. I begged him to keep my son in hospital. Eventually the Consultant agreed he could be kept in overnight but he told me he would then be discharged early the next day. I asked him if he would do another examination in the morning and he said he would not and that no further examination would take place from mid afternoon until he was discharged. [X] was then discharged the next morning and on the drive on the way home with his friend he killed his friend because he was still sick and hallucinating.

(Carer, Mother, Victoria, Footscray Forum #8)

My 30 year old daughter committed suicide on the first March 2004. She had been depressed for eighteen years. [X] has been in both private and public hospitals - St Vincent's [Victoria] and Nolan House at Albury Base Hospital let her go to her death ... In February 2004 [X] was then transferred and scheduled to Nolan House ... a court order was made for [X] to stay for 14 days ... I told him she shouldn't be allowed out. I was told by [Z] that she had been approached by the head of Nolan House and asked if [she] was happy to take care of [X] 24/7. [Z] told him no. He didn't reply to [Z] and told her [X] could go. [X] left with [Z] ... I spoke with [X] over the next two weeks ... one incident ... [X] rang me in tears ... I then again spoke to her to go back out and stay at a friend [W]'s place ... She said she would. This was the last time I spoke with [X] ... The heads psychiatrist at Nolan House in Albury would have known that he was sending her out to commit suicide, the village idiot would have known that.

(Carer, Father, New South Wales, Submission #102)

In January 2002, [X] took an overdose and was taken to hospital when found by myself. The hospital kept her in overnight and discharged her the next morning. [X] and her two daughters came to live with me until her passing in March [2002].

(Carer, Mother, New South Wales, Submission #88)
6.1.11.6.2 Discharge while still unwell

Concerns were expressed that discharge was occurring while consumers were still unwell and without carers being notified. One carer reported that their son was discharged while very ill, which indicates that that an individual care plan had not been devised, and an exit plan (Standard 11.5.1) and a clinical review of the consumer had not been conducted prior to discharge (Standard 11.3.18).

During this time there was a lot of pressure put upon our family to provide accommodation for him on release. It was obvious to his family that e wasn't well enough to be released because he displayed delusional thoughts and behaviour. However, [X] was released to a men's refuge in Queanbeyan without his family being told. He rang us up and told us where he was and asked us to pick up his car.

(Carers, Parents, New South Wales, Submission #198)
6.1.11.6.3 Lack of follow-up despite promises

Concerns were also expressed about the lack of follow-up, even if discharge plans were arranged:

In my agreement I was only allowed to stay a maximum of 5 days. The psychiatrist I saw in hospital was very nice & agreed with my therapist that I should have a case manager temporarily, however he wasn't there the day I was discharged & his registrar discharged me. I asked her if she could arrange for someone to help me as I was happy to go home but I didn't know where home was or how to do a lot of things. She said I'd remember when I got home.

(Consumer, New South Wales, Submission #69)

A couple of days later I found the phone number for the mht [Mental Health Team] near me & phoned to request help. I was told that some one would ring me back, when no-one did I tried another day with no luck. I asked my therapist to help & she spoke to them in my presence & was told they would call me Monday to sort out a time. That was a week ago & I still haven't heard anything. I have given up on getting any help.

(Consumer, New South Wales, Submission #69)

I saw my husband rapidly lose weight, lose sleep, lose more interest in things he loved to do and withdraw from me, and yet it never occurred to me that he would attempt suicide again. I had no idea on the high statistics of that happening. No-one told me anything. Especially the fact that a Mobile Crisis Team was available if I needed them to be at my beck and call. I didn't know of their existence until they came to see me after [X] died and they said to me, "your husband has fallen through the cracks. If you wanted to take further action I wouldn't blame you." My heart just sank. Apparently in the clinic they asked [X] if he thought he needed acute care????? What sort of a question is that to ask a suicidal patient? How in the hell would he know? During the whole 9 days after [X]'s discharge from the clinic he did not receive one follow up phone call or anything to check on his condition. That I find is appalling.

(Carer, Wife, New South Wales, Submission #126)

He is supposed to have a case manager who should be dropping by to see how he is coping at home. I think he has been visited on one occasion only.

(Carer, Mother, New South Wales, Submission #12)

After I took the overdose I was admitted to hospital. I only saw the doctor on the day I was being discharged and he told me I would be assigned a case worker but still 4 weeks later I have had no contact.

(Consumer, New South Wales, Broken Hill Forum #3)
6.1.11.6.4 Quick discharge without adequate planning prior to discharge

Many submissions from carers highlighted serious concerns about the inadequacy and sometimes absence of discharge plans. One report indicates that a discharge plan had not been developed in collaboration with the consumer or carer (Standard 11.5.2), that understandable information about the range of relevant services and supports had not been provided (Standard 11.5.4) and established contact with the service providers had not been arranged prior to discharge (Standard 11.5.6):

My son was, at one stage, discharged from hospital whilst we were in the process of moving house and there was nowhere for him to go. They gave us no warning of discharged, as previously promised. He was just thrown out "cured", onto the street. We weren't even told.

(Carer, Mother, New South Wales, Submission #97)

6.1.12 STORIES OF HOMICIDE AND SUICIDE IN NSW

I am a Carer from country Victoria who had a middle aged son called [X] who used to live at home and was cared for by the family. [X] suffered from schizophrenia. He was a good boy with his medication and he was good to us. He did more for us than we did for him. He was a loving, caring person. For many years he lived with the family but after many years he decided he wanted to try something new. I think he felt he was a burden on us and he decided he would move out. Not long after he moved out he stopped taking his medication - he said he didn't feel very well on his injections - and one night started hallucinating. He was on a trip with a friend in NSW and so he was taken to a large country town and was admitted to the hospital.

The hospital called me to let me know what had happened and I was assured he would be ok. The nurse put him on the phone to me and he sobbed like a baby. The nurse said they would look after him. I kept phoning all day. It was like a panic button had gone off in me. The hospital [X] was at needed to get his patient history from our normal hospital in Echuca but there was a delay in getting this information. I tried to get his medical history for them but couldn't.

At the hospital in NSW the Psychiatric Consultant who examined [X] phoned me and told me he was going to be discharged as he was only homesick. I pleaded with him not to discharge him as he was really sick and needed help. The Consultant said he was ok to be discharged. I begged him to keep my son in hospital. Eventually the Consultant agreed he could be kept in overnight but he told me he would then be discharged early the next day. I asked him if he would do another examination in the morning and he said he would not and that no further examination would take place from mid afternoon until he was discharged.

[X] was then discharged the next morning and on the drive on the way home with his friend he killed his friend because he was still sick and hallucinating. He was sent to jail and had his glasses and hearing aid removed and not returned. He was supposed to be sent to a hospital with a psychiatric ward but instead he was sent to Silver Water jail which does not have a psychiatric ward. At the jail he was sent into the general population area with no toothbrush, no glasses, no hearing aid. That is where he stayed for 2 months. We spent two months trying to get him his glasses and hearing aid. He didn't phone on Father's Day and none of us knew where he was or what was happening.

Eventually we were informed his court hearing was to be held on a certain Monday but we were worried as no contact had been received from him by the Tuesday. As it happened and without telling the family he had been moved to Long Bay Jail where he was supposed to undergo a psychiatric assessment prior to his court hearing. On the day of the assessment the doctor never turned up on the Friday to conduct the assessment and neither did the solicitor who was acting on his behalf. As such the hearing never took place and as a result he became very suicidal. This was communicated to me and I informed and pleaded with the authorities to make them aware he was sick and suicidal. They informed me he would be put in a cell with another inmate who could watch him but in fact he was placed in a single cell on Friday 1 October and hung himself on the Friday night.

I would like to know why he was failed by 3 Government departments. How did this happen? He wouldn't have killed anybody if he hadn't been put in that situation.

I think more consultation with patients is required in terms of medication and more checking if the medication works. I think the prison system does not know how to handle or cope with those with a mental illness. I would also like to say that nearly two and a half months after the police arrested him in NSW we have not heard a thing from the NSW police regarding his possessions and if they are going to return his possessions.

(Carer, Mother, Victoria, Footscray Forum #8)

One of our families today is severely traumatised because their daughter died. She committed suicide after being refused care.

(Carer, New South Wales, Parramatta Forum #1)

The incident that occurred recently when the police shot dead that young student who was stabbing someone is a good example of how badly our system is failing people who have a mental illness. The student went to a mental health service to seek care but was turned away and told he was okay. He wasn't okay but he didn't deserve to die.

(Carer, New South Wales, Sydney Forum #5)

My brother, like many others with a mental illness doesn't have a voice. My brother suicided in a hospital - I came from a modest European background. My parents believed that we would get care.

(Carer, Sister, New South Wales, Sydney Forum #7)

My son [X] committed suicide 2 years ago - he was 26. He was extremely intelligent, creative and a good athlete. His story started when he was 17 and started smoking marijuana and became quite depressed. My husband and I encouraged him to go to the local mental health service - where he saw [Y] and was encouraged by [Y] not to "prostitute" his ideals or lifestyle choices. I also went to see [Y] separately (as did my husband) who more or less said it was none of my business - he's 17 ... admitted to Cumberland Hospital after stabbing himself in the stomach 3 times in front of us (not long before he died) and being assured by the psychiatrist that this time they would keep him there and he would get help - but because he was smart and presented well - he was out in 3 days - obviously not a well boy - but the system is overloaded - people don't care - just move on. The main point I want to make is that is was so difficult for me to get any help for [X] because he was over 17. He realised just before he died he really wanted to turn his life around and we thought he was just about there when he suddenly decided to end his life. Parents need to be heard - young people can't alway help themselves to get the right treatment. Although having said that now (too late for us) but there are web sites / phone lines and help now available.

(Carer, Mother, New South Wales, Submission #122)

We are devastated as we thought he would be safe and looked after in hospital. We made several calls to [DR1] and the nurses who where looking after our son. I also told them to get in touch with [DR2] who had seen our son 18 months prior. He was willing to speak to them. Our darling son had written a letter and if you read it, he didn't want to die. I don't know how he could manage to get a sheet, plait and wet it and hang himself in the corridor without being noticed. They knew he was very sad, but when we saw the hospital where it happened it was so depressing. They told us that depressed people did not notice their surroundings. Also it was 12 hours before the police (not the hospital) called us. We kept him on life support for 10 days and in that time felt the staff ... kept very tight ranks on the matter. There has not been a hearing yet, which we made a statement to say we wished to be present at ... Our son was told he could not leave as he was too ill and was on 24 hour surveillance, and this happened.

(Carer, Mother, New South Wales, Submission #135)

Author's son, [X], completed suicide in December 2002, 10 hours after being discharged from the Mandala Psychiatric Unit on the Central Coast. He made 2 suicide attempts prior to admission. [X] was released from the unit after 36 hours in the hospital. "We strongly feel that [X] was not given the chance to want his life to go on. Mental health robbed him of that chance by not giving him the proper care that was required. [X] was released far too early for any counselling or medication to alter his thought pattern, so that he could have made his life worthwhile ... Dr [Y] stated to us that his judgement was wrong in releasing [X]. We were not given any information as to how we could help [X] in any shape or form, nothing. We had not heard of the acute care team until [X]'s inquest, this I find appalling, as we were [X]'s carers and foremost parents. If we had more information on how to help our son things could have been different for us and most importantly [X]. We feel that Mandada should be accountable for the lack of care that [X] received at Mandala.

(Carers, Parents, New South Wales, Submission #137)

He was put into the local mental health clinic that evening and discharged on the following Saturday 19th April. Upon discharge I was told nothing about who to call should I need help or advice. [X] was told to wait until the Luvox "kicked in" and then see the psychiatrist who had been attending to him. As well as Luvox, he was given Valium to counteract the anxiety the Luvox caused. I asked why they didn't change his medication, they replied, "Doctor wants to persevere." I knew no better, so thought this must be right. From that moment on, until [X] made his final successful attempt on April 26th, I saw my husband rapidly lose weight, lose sleep, lose more interest in things he loved to do and withdraw from me, and yet it never occurred to me that he would attempt suicide again. I had no idea on the high statistics of that happening. No-one told me anything. Especially the fact that a Mobile Crisis Team was available if I needed them to be at my beck and call. I didn't know of their existence until they came to see me after [X] died and they said to me, "your husband has fallen through the cracks. If you wanted to take further action I wouldn't blame you." My heart just sank. Apparently in the clinic they asked [X] if he thought he needed acute care????? What sort of a question is that to ask a suicidal patient? How in the hell would he know? During the whole 9 days after [X]'s discharge from the clinic he did not receive one follow up phone call or anything to check on his condition. That I find is appalling.

(Carer, Wife, New South Wales, Submission #126)

...we have lost our son in Carasta [Caritas] Mental Health Hospital (Branch of St Vincent Hospital Sydney). It happened on the 16th of June 2003. We are devastated as we thought he would be safe and looked after in hospital. We made several calls to Dr [Y] (second name slips my memory) and the nurses who where looking after our son. I also told them to get in touch with Dr [Z] who had seen our son 18 months prior. He was willing to speak to them. Our darling son had written a letter and if you read it, he didn't want to die. I don't know how he could manage to get a sheet, plait and wet it and hang himself in the corridor without being noticed. They knew he was very sad, but when we saw the hospital where it happened it was so depressing. They told us that depressed people did not notice their surroundings. Also it was 12 hours before the police (not the hospital) called us. We kept him on life support for 10 days and in that time felt the staff, especially [W] and [V] kept very tight ranks on the matter. There are so many bazaar happenings and as we both were shocked and devastated we felt we should have stayed on and pursued it more.

There has not been a hearing yet, which we made a statement to say we wished to be present at. The Dr that was head of ... made a comment to us as we left to something of the effect that we shouldn't pursue the matter any further as not having a lot we could lose all that we have.

Our son was told he could not leave as he was too ill and was on 24 hour surveillance, and this happened ... Dr [Z]. He felt there was not enough done. I feel the medication he was on made him do what he did. So much to say, but I think you would know.

(Carer, Mother, New South Wales, Submission #135)

Whilst she was in care of the Health Dept Newcastle a few years later, and having some contact with the children, I received two concurrent letters from her, the first stated she was going to jump of the cliff at Nobbys and the second stated 'disregard the first letter' I copied the letters, got in touch with the Health Dept and her case worker and notified them of the letters, they assured me she was OK the Doctor she was seeing had reduced her medication she was doing so well, and all was fine. About 3 months later she through herself under a train at Adamstown. I imagine my experience is not that unusual, but it is a disgrace. Little help that she was to me raising the children, it was at least something, but it left me with no support as a single dad for a good ten years and the children with no Mum.

(Carer, Husband, New South Wales, Submission #160)

I have been informed that a male person committed suicide on Thursday night. The person ... was an outpatient of Bunya, a Parramatta forensic facility. He was living in the community under conditional release. As I understand it he presented himself at Bunya for readmittance as he was "relapsing" (episodic symptoms). However, sadly, Bunya had no beds. He was taken home by the Sydney Mental Health Community Support Team and left there alone being told that they would be back in a few hours. While he was alone he killed himself by taking poison. Tragic that he must have wanted "pain relief" so badly that he chose suicide as the way of terminating his pain and life.

(Anonymous, Victoria, Submission #272)

At the beginning of July, 2004, he admitted to his wife, [Y], that he was not well and said that he wanted to be readmitted to the Lindsay Madew Ward at Hornsby Hospital. He phoned the hospital and they sent two people to his home. His request to them for admission to hospital was refused, and they said they would monitor him at his home. They immediately increased his medication to 800 mg. daily, indicating that the 400 mg. dose was far too low. On their second visit, he again asked to be readmitted to hospital, but again was refused ... From memory, the home visits by Hornsby Hospital staff were made on Friday 2nd, and Saturday 3rd of July, 2004. They phoned him on Sunday 4th and again on Monday, 5th. On that Monday and also on Tuesday 6th, he went to his workplace in the city. On his way home on Tuesday evening, he fell / jumped from a suburban train. He was admitted to St. Vincent's Hospital, and died the next morning, Wednesday, 7th, without regaining consciousness. In effect, within days of Hornsby Hospital's refusal of his request for admittance to hospital, and the doubling of his medication, Andrew was dead. As laymen, we cannot help feeling that he would be alive today -

. had he been readmitted as requested, to the secure psychiatric ward at Hornsby Hospital.
. had his condition been monitored regularly after his first episode, which we are now told is normal procedure.
. had his daily medication of Epilim not been reduced from 1000 mg. to 400 mg. when at the Sydney Adventist Hospital in 2002.

We feel the system failed us - and [our son] ...

(Carer, Father, New South Wales, Submission #346)

...my daughter, [X] who passed away in March 2002 as a result I think, of inadequate mental health care. [X] had a history of depression and Obsessive Compulsive Disorder. For the last 12 months of her life, [X] sought unsuccessfully for help to control her depression and OCD ... As [X] became more and more depressed and anxious, she developed an eating disorder and worried about being fat, even though she was only 52 kilos. After attending a local doctor, whom I don't know, she was prescribed Duromine, a weight loss tablet I knew nothing of this. [X] also sought help from an OCD clinic near Newcastle and one in Sydney, but was put on a "waiting list". We are now left with the grief of a child we will never see again. There was nowhere to get help for this terrible nightmare we found ourselves in and we had to watch her waste away before our eyes. On the morning of March 24, [X] was found dead by her 9 and 10 year old daughters as an interaction of these lethal drugs when too many are taken. These little girls are now in my care and I blame the "system" for my daughter's death and the children not having a mother.

(Carer, Mother, New South Wales, Submission #88)

My 30 year old daughter committed suicide on the first March 2004. She had been depressed for eighteen years. Melinda has been in both private and public hospitals - St Vincent's [Victoria] and Nolan House at Albury Base Hospital let her go to her death ... In February 2004 [X] was then transferred and scheduled to Nolan House. ... a court order was made for [X] to stay for 14 days ... I told him she shouldn't be allowed out. I was told by [Z] that she had been approached by the head of Nolan House and asked if [she] was happy to take care of [X] 24/7. [Z] told him no. He didn't reply to [Z] and told her [X] could go. [X] left with [Z] ... I spoke with [X] over the next two weeks ... one incident ... [X] rang me in tears ... I then again spoke to her to go back out and stay at a friend [W]'s place ... She said she would. This was the last time I spoke with [X] ... The heads psychiatrist at Nolan House in Albury would have known that he was sending her out to commit suicide, the village idiot would have known that.

(Carer, Father, New South Wales, Submission #102)

Author's son, [X], completed suicide in December 2002, 10 hours after being discharged from the Mandala Psychiatric Unit on the Central Coast. He made 2 suicide attempts prior to admission. [X] was released from the unit after 36 hours in the hospital. The coroner stated "It seems to me clear that staff were over anxious to discharge [X] due to the perennial shortage of beds at Mandala and that this is one of many cases which highlight Government neglect in the area of mental health facilities. Many promises are made but many do not eventuate or are delayed excessively. This is causing needless deaths in the community. The mental health beds at Wyong hospital have been promised for some time but are still not available. The public are entitled to expect that the mentally ill will be properly cared for by government funded services ... The standard of care provided for [X] left much to be desired. After considerable questioning, this was reluctantly conceded by some of the doctors who gave evidence at this inquest ... [X] was discharged with a minimum of formality and no guidance or assistance ...

(The coroner's report in Carers, Parents, New South Wales, Submission #137)

On leaving the hospital with her son, the only information given to his mother was a copy of the discharge summary and four pages of "better sleep tips". Dr [Y], the discharging doctor, was asked if there was a discharge protocol. She replied that she did not use one and was unaware if one existed. Dr [Z] later agreed that there should have been a conference with the family before discharge ... The standard of care provided for [X] left much to be desired. After considerable questioning, this was reluctantly conceded by some of the doctors who gave evidence at this inquest ... [X] was discharged with a minimum of formality and no guidance or assistance to them or their son ...

(The coroner's report in Carers, Parents, New South Wales, Submission #137)
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