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Disability Rights: Not for Service - Report: Part 6_6

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

6.6 AUSTRALIAN CAPITAL TERRITORY

ANALYSIS OF SUBMISSIONS AND CONSULTATIONS FROM THE AUSTRALIAN CAPITAL TERRITORY AGAINST THE NATIONAL STANDARDS FOR MENTAL HEALTH SERVICES

In summary, information presented in this section was gathered from 14 submissions (see Appendix 8.3.6) and presentations made at a community forum attended by approximately 100 people (see Appendix 8.1). A draft copy of this report was sent to the Chief Minister and Minister for Health for comment. An analysis of the response from the ACT Government (reproduced in Appendix 8.4.6) and an overall review of mental health service delivery in the Australian Capital Territory is contained in Part 2.7.6.

6.6.1 STANDARD 1: RIGHTS

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

Because intervention comes so late, consumers and families report that once the police are involved and no matter how the police are, there is still a sense of not being treated with dignity. One consumer explained the situation: 'I know when I get sick that I quickly lose insight and will resist treatment but I am sick and there I am being handcuffed by police. No other groups of people with an illness are treated like this. Why are we? Surely there can be a better way. I think it starts with me being able to say, I'm becoming unwell and clinicians taking me seriously.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory , Submission #342)

Under this Standard, submissions and presentations indicate concerns about:

  • problems with complaints procedures;
  • consumers not being treated with dignity and respect; and
  • carers not being provided with information.

 6.6.1.1 Problems with complaints procedures

Consumers and carers who had used the complaints procedure reported feelings of anger with the amount of time the process had taken. None would have described the complaints procedure they dealt with as 'easily accessed, responsive and fair' (Standard 1.10).

Failure to have in place a system which allows patients, families and carers to effectively and confidentially make complaints 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). One clinician also expressed concern regarding the delays in dealing with complaints and that many people are fearful of lodging a complaint as it may impact on treatment and service provision in the future. Evidence presented suggests that the process does not allow for the identification of single or systemic failures and thereby does not allow for personal redress or systemic improvement.

The length of time in responding to the coronial inquiry is too long. There has been a very slow response to [X]'s death. A report has been commissioned but won't be released until May. There has been a lack of follow up to [X]'s death. I am still waiting three and a half years later for the coronial inquiry - my human rights are being violated.

(Carer, Partner, Australian Capital Territory , Canberra Forum #17)

We need to look at improving management of complaints to increase turn around time. People are fearful of making a complaint on services they are going to need to use in the future. We need to support registration of complaints.

(Service Provider, Australian Capital Territory , Canberra Forum #22)

We need to face the truth about the abuses that are still happening far too commonly in mental health services - particularly in acute services. The mental health system in still doing a lot of damage to a lot of people and we do, really, need to expose this and creatively find ways to make it better.

(Consumer, Australian Capital Territory , Submission #287)

6.6.1 STANDARD 1: RIGHTS

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

Because intervention comes so late, consumers and families report that once the police are involved and no matter how the police are, there is still a sense of not being treated with dignity. One consumer explained the situation: 'I know when I get sick that I quickly lose insight and will resist treatment but I am sick and there I am being handcuffed by police. No other groups of people with an illness are treated like this. Why are we? Surely there can be a better way. I think it starts with me being able to say, I'm becoming unwell and clinicians taking me seriously.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Under this Standard, submissions and presentations indicate concerns about:

  • problems with complaints procedures;
  • consumers not being treated with dignity and respect; and
  • carers not being provided with information.

6.6.1.1 Problems with complaints procedures

Consumers and carers who had used the complaints procedure reported feelings of anger with the amount of time the process had taken. None would have described the complaints procedure they dealt with as 'easily accessed, responsive and fair' (Standard 1.10).

Failure to have in place a system which allows patients, families and carers to effectively and confidentially make complaints 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). One clinician also expressed concern regarding the delays in dealing with complaints and that many people are fearful of lodging a complaint as it may impact on treatment and service provision in the future. Evidence presented suggests that the process does not allow for the identification of single or systemic failures and thereby does not allow for personal redress or systemic improvement.

The length of time in responding to the coronial inquiry is too long. There has been a very slow response to [X]'s death. A report has been commissioned but won't be released until May. There has been a lack of follow up to [X]'s death. I am still waiting three and a half years later for the coronial inquiry - my human rights are being violated.

(Carer, Partner, Australian Capital Territory, Canberra Forum #17)

We need to look at improving management of complaints to increase turn around time. People are fearful of making a complaint on services they are going to need to use in the future. We need to support registration of complaints.

(Service Provider, Australian Capital Territory, Canberra Forum #22)

We need to face the truth about the abuses that are still happening far too commonly in mental health services - particularly in acute services. The mental health system in still doing a lot of damage to a lot of people and we do, really, need to expose this and creatively find ways to make it better.

(Consumer, Australian Capital Territory, Submission #287)

Other things that have occurred and to make it relevant I will talk about my last admission. Don't get me wrong I have tried to complain and the complaint is ignored or they say I am imagining it or making it up for attention.

(Consumer, Australian Capital Territory, Submission #287)

Because of the publicity we obtained it forced [Y[, the Minister for Health, to order an independent enquiry into the treatment of [our son] and also to look at the Mental Health Act. This was only ordered after we had not heard from [Y] and wrote to the Opposition Leader, [W] who replied to us immediately. [Y] arranged for [Z], Director of Psychiatry at the Alfred Hospital Victoria to prepare an independent inquiry. We have finally received and we are pleased to see that some things have been put in place to protect the patient more and that they would not have as much freedom as [our son] had. As [Dr Z] said our family was taking the place of the staff who should have been doing their job. They are the "the experts" not us.

(Carers, Parents, Australian Capital Territory, Submission #354)

A protocol needs to be developed for the dealing with complaints on a prompt basis whether it be from official agencies such as OCA or others including family, friends and carers. A responsible accountable system for dealing with complaints may well assist morale and confidence in the safe care provided by PSU. (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

The availability of an accountable complaints system may well alert those responsible to issues that may otherwise be overlooked. (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

6.6.1.2 Consumers not being treated with dignity and respect

The Mental Health Community Coalition Consumer and Carer Caucus reported that many consumers during their involvement with the MHS felt that they were not treated with dignity and respect. Similar sentiments were expressed by a consumer with regard to treatment in hospital settings and, as noted, above, due to involvement with the police.

A lack of dignity and respect in care received from mental health services are reported generally but in particular, forensic patients, young people and Aboriginal patients are reported to be treated poorly.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Acute services are mostly horrible places to be. Some of this is because you are sick but I don't believe they have to be as bad as I have experienced them. I do not like being treated like a five year old. I do not like being patronised. I do not like being ignored and having to plead for attention.

(Consumer, Australian Capital Territory, Submission #287)

Consumers and carers both reported that to get help in a crisis generally means getting the police involved. Carers told of the consequences of police involvement and its impact on relationships. 'Once this occurs the person is carted off in handcuffs by police and we are never forgiven'. And 'We don't want to be seen as the enemy but we are put in this position all because we try to get help before something bad happens.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

The thing that happened was spilling hot tea from a cup above [my] lap 4 times and that was not an accident, refusing me laxatives till I had not passed anything for 10 days and stomach swelled, accusation while [I'm in] the toilet or shower that I am cutting or sniffing, bitching about me to other nurses from the nurses station which is in hearing of other patients and myself. Mocking and kicking me while [I'm] in with the psychiatrist and rolling their eyes at me. I know that these are pretty petty to what happens to others but I would be glad for you to use them.

(Consumer, Australian Capital Territory, Submission #287)

6.6.1.3 Information not provided to carers

Carers expressed concern that they were often not given information about a range of services and supports available. Standard 1.8 states: 'The MHS provides consumers and their carers with information about available mental health services, mental disorders, mental health problems and available treatments and support services'. For many carers, this included failure to be notified that they could receive financial assistance from Centrelink. For many families, the inability to access treatment and support services and the lack of available supported accommodation results in disruption to employment for carers and places other considerable strain on families. This information is therefore vital. Concern was also raised that young members of the family are not always acknowledged as 'carers' and being provided with information about how to access support services for themselves.

Service providers present reported that it is not uncommon for families to be unaware of the carer payment available through Centrelink.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

[Y] noted, in considering what services are available to young carers, there are so many kids who don't know, so don't ask.

(17 year old Carer, Sister, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #1)

As a carer I would ask where can I go to get professional help, rather than pay an arm and a leg for help? I don't have any support.

(Carer, Wife, Australian Capital Territory, Canberra Forum #4)

In response to a discussion on mental health services available for young carers, [Y] said he had been given a phone card which he uses to keep in contact.

(13 year old Carer, Son, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)

The failure to provide information in the above examples also implies that these consumers and carers may not have been provided with a written or verbal statement of their rights and responsibilities as required by Standard 1.2 (consumers and their carers are provided with a written and verbal statement of their rights and responsibilities as soon as possible after entering the MHS) in a way that is understandable to them (Standard 1.3).

6.6.2 STANDARD 2: SAFETY

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

Under this Standard, submissions and presentations indicate concerns about:

  • inadequate treatment and support services to ensure the safety of consumers, carers and the community;
  • safety not ensured in hospital environments; and
  • concern over the handling of critical incidents in hospital settings and safety reviews.

6.6.2.1 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 even when there was an imminent risk of self harm or harm to others. Standard 2.3 states 'Policies, procedures and resources are available to promote the safety of consumers, carers, staff and the community'. Consumers and carers reported that in order to receive treatment, consumers in crisis felt they had to attempt suicide or cause sufficient damage to warrant a response beyond incarceration.

My son deteriorates, he is then in and out of gaol, only ends up in hospital after he has harmed himself.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

The CATT [Crisis Assessment and Treatment Team] said my relative was too dangerous and that we were to call the police. We then spent several weeks trying to get our relative mental health treatment. Our relative became sicker, hungrier, more mal nourished and more dangerous to himself. In the end he got help after seriously harming himself. He could have died from self inflicted injuries but a member of the family found him.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

What is wrong with the CATT and the emergency processes? It's getting worse. They tell us they are short staffed. They tell us they can't talk to us that it's a matter of privacy and confidentiality, but surely when our lives and our safety are at risk, they must listen to us.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

I ended up causing $100,000 damage from smashing windows at the ACT Legislative Assembly. I did this because I had the wrong diagnosis and had received the wrong treatment ...I went to ACT mental health services the day before I smashed the windows [at the ACT Legislative Assembly]. I was given an appointment to see them in three days. This was of no help.

(Consumer, Australian Capital Territory, Canberra Forum #14)

" ...we're the only ones who cop all his crap." When asked what this is like, [Y] replied: "Bad, it should be the mental health crisis team or whatever, but it's us.

(17 year old Carer, Sister, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #1)

My biggest concern is, that because he has often had a tendency towards violence, his delusional state while it continues to go untreated, will escalate and one day he will really lash out and someone will be hurt.

(Carer, Father, Australian Capital Territory, Submission #208)

6.6.2.2 Safety not ensured in hospital environments

Concern was expressed that policies and procedures are not offering sufficient protection for consumers to feel safe in hospital settings. Standard 2.2 states: 'Treatment and support offered by the MHS ensure that the consumer is protected from abuse and exploitation'. The notes to Standard 2.2 state that safety is 'considered in terms of physical, social, psychological and cultural dimensions'. Standard 2.3 further states: 'Policies, procedures and resources are available to promote the safety of consumers, carers, staff and the community'.

With regard to his clinical management, it is surprising, however, that the level of potential overwhelming despair and despondency that the patient intermittently suffered and the accompanying suicidality was not managed by a more restrictive approach to the granting of leave. Evidence of this is that he was given accompanied leave on the day of admission within 24 hours of taking himself to Telstra Tower ... The family was very much involved in the patient's care and were obviously present on a daily basis. The handing over of the care of the patient, when on leave from the ward, to a family naive about the management of a seriously ill patient carried some risks ... Two problems arise when reviewing the leave arrangements. Firstly, the family members and the girlfriend are not skilled in mental health care and are not expert in the area. They did not know what to expect, what were the potential vulnerabilities, what risks were inherent in the illness of depression and what to look out for. The frequency of handing over the care, during times of leave, of the patient into the family's care, was more than I have expected. Clearly there is a balance that needs to be struck between the wishes of the patient to be in the company of family, and the need to monitor the patient and engage the patient in the ward therapeutic activities program. In retrospect the frequency of leave in the context of a fluctuating mental state and patchy clinical progress appears to go beyond usual practice. The family and the girlfriend have put trust in the directions and instructions of the treating staff. The tragic eventual result of this level of practice was that the girlfriend was present and witnessed his death. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

Dr. [V]'s comments that the family could be used to "special" (that is, provided one to one care and safety for the patient) in Hyson Green suggests to me a potential conflict of the role of concerned family members. They may well be a support and an adjunctive to care, but should not replace nursing care, whether it is specialling (as in P.S.U. [Psychiatric Support Unit] overnight of the [dates 2003]), or escorting patients on walks and other activities. The obvious reason is that families are not trained in mental health care. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

Violent and difficult patients: The lack of specified facilities within the ACT mental health system has been identified for coping with violent and difficult patients, in particular with forensic patients in this class ...The arrangements with patient [Y] at the time of the incident was fraught with danger and a disaster waiting to occur (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

Insufficient staff and supervision of the deceased in the HDU [High Dependency Unit] at the time of the incident causing death ... The lack of sufficiently detailed protocols and practices to involve valuable clinical information from family, friends and carers resulted in a situation where the fullness of the risk for the deceased may not have been appreciated ...(Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

For those of us who have experienced childhood trauma of any kind being locked up and searched and detained in any way can cause even further trauma. I know that I have met many, many people in acute settings who come from such backgrounds. These people are very fragile and need protection, which is often not forthcoming.

(Consumer, Australian Capital Territory, Submission #287)

6.6.2.3 Concern over the handling of critical incidents in hospital settings and safety reviews

Serious concerns were expressed about the handling of clinical reviews following the deaths of people with mental illness while in care. Specifically, an independent external reviewer highlighted as a significant concern the fact that no medical personnel were involved in a coronial inquest of a patient who died while in hospital care, and that a thorough investigation and review had not occurred. In particular, it was noted that such processes could reassure staff and the public that lessons had been learnt and future risks minimised. The lack of adherence to policies and procedures to review such critical events and the need to revise policies and procedures were noted as essential to ensure safety for consumers.

In the medical record I reviewed I could find no evidence of significant clinical review post death either at Calvary Private Hospital or The Canberra Hospital. I would have expected that the management of those hospitals and Mental Health A.C.T. would have required that clinical reports be generated as a death by suicide of an inpatient is a sentinel event which requires thorough investigation and review. This has been undertaken. In such a review I would have expected to find, possibly in the format of a root cause analysis, recommendations and actions. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

On [date] 2003, the Coroner held an inquest into the death of [X] ...The lack of medical witnesses, summonsed or otherwise to the court, is surprising. The patient had died whilst in the care of an inpatient ward and was recently detained under the Act in another. Although the deceased did not meet the criteria under the Coroner's Act for an inquest into the death of a person in custody, the death of an inpatient under treatment by suicide should have, in my opinion, led to a more thorough coronial investigation. The opportunity for the family, through its legal counsel, to ask questions of the medical staff so as to assist the Coroner in the discharge of his responsibilities under the Act did not occur. The Coroner in his findings made no comment about the care and treatment provided in The Canberra Hospital or Calvary Private Hospital as the Coroner did not investigate such ...The lack of involvement of medical personnel in the Coronial Inquest is of significant concern. There has been a strong incident reporting and sentinel event review process at both hospitals. I believe that the public and staff can be reassured that lessons are learnt from adverse outcomes and future risks minimised ... A sentinel event / serious incident review process policy should be evaluated. There should be at least a root cause analysis of each sentinel event, and it should include recommendations and actions. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

Procedures concerning the response and reaction of the emergency team upon an alarm being raised in PSU should be assessed and appropriate systems be put in place and be subject to continuous audit to ensure proper and prompt operation. (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

6.6.3 STANDARD 3: CONSUMER AND CARER PARTICIPATION

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

No submissions or comments were received pertaining to this Standard.

6.6.4 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.

The belief exists that people with mental illness are inferior citizens who are best confined to certain areas, if not buildings, because they "would be happier there" and other citizens have a right not to be even mildly bothered by them. In fact people want them out of sight so that they do not have to deal with the reality of their existence.

(Carer, Australian Capital Territory, Submission #173)

Under this Standard, submissions and presentations indicate concerns about:

  • discrimination in employment settings;
  • need for community education;
  • non-acceptance by family;
  • lack of community support, especially in schools; and
  • stigma and stereotypes perpetuated by the media.

6.6.4.1 Discrimination in employment settings

Concerns were expressed about discriminatory practices in employment settings which preclude people with mental illness from participating successfully in the workplace. These included problems with application forms, disclosure during the application process, lack of support when employed and termination as a result of mental illness.

Many of these problems could be addressed by activities associated with Standard 4.2 'The MHS provides understandable information to mainstream workers and the defined community about mental disorders and mental health problems'. Employment and support in the workplace by managers and other employees are seen as critical in the rehabilitation phase, reducing the impact of illness in the long-term and successful reintegration into society at a social and financial level.

I suffer from reactive depression. I've been suicidal. I have not attempted suicide, but the issue never goes away. I'd like to talk about the issue of declaring mental illness to employers. I don't declare my illness when I apply for a job, but I had to on joining the [Commonwealth] Public Service. I had to declare my illness on a superannuation form. Then a black mark is put against my name.

(Consumer, Australian Capital Territory, Canberra Forum #19)

I took 3 months off from work on personal leave to recover from suicidal thoughts. When I came back, I had to deal with new management and new thinking. Previously, I had a supportive supervisor. I asked for a transfer to another section. The new management sought a psychiatric assessment of my illness. Their solution to the problem was to pension me off rather than look to work with me around the illness.

(Consumer, Australian Capital Territory, Canberra Forum #19)

The workforce is in a crisis as there is still a lot of stigma in society.

(Consumer Consultant, Australian Capital Territory, Canberra Forum #23)

The program plays a very important role in supporting the mental health for the people participating. For example, one client of the program who moved on to another job at a cafe which was going really well, he was managing people and doing well. But he was stressed by the pressures of the job and of hiding his illness. He had no support as he was hiding his illness. He got sick again and this time gotten worse than before. This example demonstrates the dilemma for people with mental illness seeking employment. Should people declare their illness or not? This example shows it is better to reveal mental illness to employers up front.

(Carer, Father and volunteer service provider, Australian Capital Territory, Canberra Forum #16)

6.6.4.2 Need for community education

Carers expressed concern about the stigma that still surrounds mental illness and how this resulted in friends and other members in the community distancing themselves from the consumer and the family. A young carer expressed concern regarding the need for additional community awareness campaigns and that simple provision of information is not enough to change the community's level of understanding and reduce stigma. This would indicate that further work such as campaigns and activities by the MHS to address community acceptance and reduce stigma (Standard 4.1) are required.

Discrimination and lack of community acceptance are key barriers to people with mental illness (and their family members) being able to participate socially, economically and politically in society. Carers reported their family members feeling "like outcasts of society".

It seems as soon as one had an experience and is labelled by the system people just don't listen or think they are important or have anything worthwhile to say. Such is the attitude of some people who make them feel like outcasts of society.

(Carer, Sister, and Consumer, Australian Capital Territory, Submission #172)

[Y] added there needs to be more awareness about mental illness. There is still a lot of stigma. People have misconceptions about mental illness. "Sometimes you see people walking around the streets who obviously have something wrong with them, and there needs to be more awareness so people are more accepting." [Y] said in a PD / CD (personal development / Christian development) class there was a session on mental illness but the teachers had no idea. A student commented to [Y] afterwards they wanted to have schizophrenia so they could hear voices in their head. [Y] said even when provided with information, the message doesn't seem to get through. People just don't want to acknowledge it.

(17 year old Carer, Sister, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #1)

There is a complete lack of understanding in the community that people may be able to function in some parts of their lives and not in others, or they may well for some part of the day/week/year and not others. This lack of understanding leads to unjustified criticism and discrimination.

(Carer, ACT, Submission #173)

6.6.4.3 Non-acceptance by family

As the following quote indicates, the need for activities to promote community acceptance not only for the community but for family members is critical.

The family never rings, or visit even though he has asked them to do so. Their excuse is that they are frightened.

(Carer, Father, Australian Capital Territory, Submission #208)

6.6.4.4 Lack of community support, especially in schools

Concern was also expressed about the lack of support and understanding for young carers in the school setting. This was particularly expressed with regard to teachers and the lack of school support offered to accommodate this student's needs.

[Y] said he had got crap from bullies about his Mum and learnt not to tell anyone. "Most people find it confusing."

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

6.6.4.5 Stigma and stereotypes perpetuated by the media

Concern was expressed with regard to the manner in which the media reports suicides and method of suicide. Media coverage and reporting influences community attitudes and understanding of mental illness and activities by the MHS to reduce stigma in the community must also address educating the media.

...partner also criticised the response of the media in reporting suicide, and in particular that the media often reports the method of suicide.

(Carer, Partner, Australian Capital Territory, Canberra Forum #17)

Each time I contact the media, I point out that there are guidelines published by the Federal Government. They obviously sit on a shelf unopened and nobody except SANE does anything about it.

(Carer, Australian Capital Territory, Submission #173)

Another matter that is misrepresented in the press is the association between schizophrenia and violence. Violent behaviour can occur when a person has schizophrenia, but it is usually associated with drug or alcohol abuse and sometimes with untreated illness. When it does occur, however, it is treated in the media as the norm for such illness. There is never a balancing statement about the large number of people with schizophrenia who have not been violent. Invariably a diagnosis of schizophrenia is highlighted in court reporting when a crime has been committed, yet it is never mentioned when a person charged with a crime has diabetes or some other illness. Does this not amount to discrimination against people with schizophrenia?

(Carer, Australian Capital Territory, Submission #173)

I am appalled with the number of times media articles or TV dramas use words like nutters, loonies etc. to refer to people with mental illness. There was a particularly bad example in the Canberra Times some months ago in an article on arson. It talked about the twenty percent of the population with mental illness and then concluded that those ... loonies (I cannot remember the exact words) could not possibly account for all the examples of arson. Secretarial staff at the paper were appalled when I pointed the words out to them, but editorial staff cared so little that there was no apology nor any attempt to speak to me about the matter. I was given the email address of the writer, a freelance journalist. I wrote to him, but received no reply.

(Carer, Australian Capital Territory, Submission #173)

6.6.5 STANDARD 5: PRIVACY AND CONFIDENTIALITY

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

Those in attendance discussed the National Statement of Rights and Responsibilities that states: There may be circumstances where the consumer is unable to give consent or may refuse consent because of their disturbed mental state. In such cases it may be appropriate for service providers, carers and/or advocates to initiate contact and involve those who may be able to assist with the contact and involve those who may be able to assist with the consumer's diagnosis and care.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Under this Standard, submissions and presentations indicate concerns about policies and procedures to protect confidentiality.

6.6.5.1 Problems with policies and procedures to protect confidentiality

Carers expressed concerns that a misunderstanding of 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 vital information. Carers continue to express frustration in being expected to provide support but are not informed of the treatment process and can not contribute information about what is occurring. One mother stated: "How are we supposed to help him if we don't know what's going on with him?" Furthermore, these concerns would indicate that these policies and procedures are not being made available to consumers and carers in an understandable language and format (Standard 5.2) and that the MHS is not encouraging and providing opportunities for consumers to involve others in their care (Standard 5.3).

There is an issue with confidentiality. I wish I had taken out a Guardianship Order when my daughter first became ill. I would have overcome some of the problems we are now experiencing. I am her support not an interfering mother as I am labelled.

(Carer, Mother, Australian Capital Territory, Canberra Forum #1)

What is wrong with the CATT and the emergency processes? It's getting worse. They tell us they are short staffed. They tell us they can't talk to us that it's a matter of privacy and confidentiality, but surely when our lives and our safety are at risk, they must listen to us.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Family members reported that confidentiality is often used as reason as to why they cannot told anything by mental health clinicians. Family members argued: 'Surely when my safety is at risk, I have a right to know certain, if not prescribed, information.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Carers and advocates have the right to put information concerning family relationships and any matters relating to the mental state of the consumer to health service providers.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

[Y] provided an example when her mother took time off work to visit her son's GP, as [Y]'s brother was going through a particularly bad time. [Y] said her brother would come over to the house and her mother wanted to ask his GP what was going on from a medical point of view. The GP told [Y]'s mother he could not tell her anything about her son's illness as medical history was private information. [Y]'s mother explained she just wanted a medical point of view on whether her son was OK or not, and explained she had taken time off work to visit with the GP and that she was his mother. The GP asked [Y]'s mother would she like to see a counsellor. [Y] noted her mother said to the GP "How are we supposed to help him if we don't know what's going on with him?"

(17 year old Carer, Sister, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #1)

The mental health system failed [X] in so many ways. In summary the key failings were: ... the role of family members as carers was ignored: they would not listen to our input and apparently valued privacy requirements above everything else, including [X]'s welfare and even his life.

(Carer, Sister, Australian Capital Territory, Canberra Forum #9)

Family, friends and carers could provide information valuable for such a plan and they need to be involved on discharge of patients to be treated within the community. Information from family, friends and carers is important for treatment planning and risk assessment and for the continuation of treatment upon discharge. The problem of patient resistance to the involvement of family, friends and carers and privacy issues needs to be contended with. Best practice does involve this question. It did not happen here at an appropriate level ... (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

6.6.6 STANDARD 6: PREVENTION AND MENTAL HEALTH PROMOTION

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

Under this Standard, submissions and presentations indicated concerns about:

  • inability to access treatment and support services for early intervention - need to wait for a crisis;
  • need for education campaigns in schools;
  • lack of support for children of parents with mental illness; and
  • lack of rehabilitation programs.

6.6.6.1 Cannot access services for early intervention - need to wait for a crisis

Whether due to lack of resources, or other reasons, ACT MHS operates under a risk management approach. Thus only people who are in crisis receive attention from MHS. As a result, those people who are not in crisis receive very little support, eg case management. In fact we understand ACT MHS does not provide case management now, but "clinical management".

(ACT Disability, Aged and Carer Advocacy Service (ADACAS), Australian Capital Territory,
Submission #139)

Carers and consumers expressed serious concerns about the lack of a preventive focus in the delivery of mental health services, despite the emphasis of such an approach in Standards 6.4 (capacity to identify and respond to the most vulnerable consumers in 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).

In particular, all mentioned how unacceptable it was, on many levels, for treatment and support services not to be provided at the earliest possible moment to prevent deteriorating illness. As a result, the consumer was at risk of harming themselves or others, and the rest of their life had also deteriorated (e.g. employment, social withdrawal, prison) and required acute care, often in restrictive settings with rigorous treatment regimes.

Both consumers and carers reported that in the ACT it is almost impossible to get intervention or be listened to at an early stage when warning signs are initially beginning to appear.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

I come from Toronto in Canada, where I was able to get same-day access to psychiatrists when I need mental health care. In Canberra, I tried to get access to mental health care when I was becoming unwell. The doctor estimated that I wasn't psychotic enough. The doctor told me they couldn't help as they didn't have the resources, but if I was becoming more unwell and reached a point where I couldn't leave my apartment then I should "give him a call". If people are that unwell these things are beyond them!

(Consumer, Australian Capital Territory, Canberra Forum #21)

Families report that mental health services often do not listen to them when they try to get help in a crisis: 'people are just fobbed off in a crisis no matter how well our relative's case is known. The CATT tells us to phone the police.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

6.6.6.2 Need for education campaigns in schools

Concern was expressed by a young carer that information about mental illness and mental health problems and promotion of mental health were lacking in schools. Standard 6.3 states: 'The MHS provide 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'. Such programs could also address stigma associated with mental illness and community acceptance and acceptance of children of parents with mental illness (discussed below).

[Y] added there needs to be more education about mental and physical illness and disabilities in schools. They have sex education and drug awareness and healthy eating education at his school but he hasn't been to a school that talks about mental illness.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

6.6.6.3 Lack of support for children of parents with mental illness

Concern was also expressed by a young carer about the lack of support that was provided to him while he cared for his mother and how this resulted in his mental health deteriorating to the point of feeling suicidal. 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'. In the notes and examples to this Standard are: 'services for the children of parents with a mental disorder ...and liaison with school counsellors'.

[Y] said his mother has schizophrenia. [Y] said when he was 7yrs old his Mum used to lay in bed until 3pm and then get up and watch television before going back to bed. [Y] said his teachers didn't understand and he was insulted by other kids because his family didn't have any money. [Y] said he felt very suicidal between 12-13 yrs and started seeing a counsellor and was put on medication. He said he thought some of the teachers were bullies. He had difficulty doing home work, was often on detention and found it difficult to make friends.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

6.6.6.4 Lack of rehabilitation programs

Rehabilitation programs are a critical step for both reintegrating back into full life after a period of illness and preventing relapse for many people with mental illness. Such programs would include living skills programs, respite and social programs. Access to rehabilitation programs is covered under Standard 6.8 '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 ACT mental health services place little emphasis on rehabilitation programs or other programs to prevent relapse or promote recovery as no rehabilitation programs are available for consumers to access. These programs are essential to promote and protect the social and economic participation rights of consumers.

There is no rehabilitation available as follow up.

(GP, Australian Capital Territory, Canberra Forum #5)

6.6.7 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.

No submissions or comments were received pertaining to this Standard.

6.6.8 STANDARD 8: INTEGRATION

6.6.8.1 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:

  • service not integrated to provide a mix of services to respond to consumer needs, not even in a crisis; and
  • high staff turnover resulting in problems with continuity of care.
6.6.8.1.1 Service not integrated to provide a mix of services to respond to consumer needs, not even in a crisis

A major concern highlighted in many submissions and presentations was the inability for consumers to access services at various stages of the illness cycle. Concern was also expressed that services were not integrated to ensure continuity of care and prevent deteriorating health. The reports indicate that consumers, carers and clinicians had attempted on many occasions to contact the MHS but received an inadequate reply and that separate programs of the MHS were not working in an integrated and supported manner. Standard 8.1.1 states: 'There is an integrated MHS available to serve each defined community'. Included in the notes to this Standard are inpatient care, crisis intervention, case management and rehabilitation.

The mental health system failed [X] in so many ways. In summary the key failings were: Third, was lack of integration across the various mental health areas, such as the hospitals and the mental health crisis team, and related areas such as Drug and Alcohol services and accommodation facilities: we are a very "bureaucracy-literate" family and we had immense difficulty navigating the system.

(Carer, Sister, Australian Capital Territory, Canberra Forum #9)

2 weeks ago I received a call from a person who was suicidal. I took her to see her case manager, who assessed her. He told her "you are depressed but there are no beds available". I got the call the morning she was admitted. She said "I am going to kill myself". I spoke to Crisis. They said they would speak to her. 2 hours later they still hadn't called her. I called around and eventually organised a bed.

(GP, Australian Capital Territory, Canberra Forum #5)

The mental health emergency and crisis processes are simply not working and are frequently failing.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.1.2 High staff turnover and rotations resulting in problems with continuity of care

Concerns were also expressed regarding the high staff turnover in various components of the MHS, which impacts on the ability of the MHS to deliver continuous and integrated care. The impact for one consumer of having to continuously restart the familiarisation process with each new staff member resulted in the consumer choosing an alternative which is less than ideal and jeopardises educational achievement and disrupts his school social system. 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'.

He has a different social worker every three months and suffers from psychotic episodes. He finds it difficult to trust people and the constant changes to the social worker assigned to his case are not helpful.

(17 year old Carer, Sister, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #1)

[Y] has depression and no longer accesses counsellors through ACT government services. [Y] explained the counsellors in the government system change a lot so he had to keep starting from the beginning and moving to a point in his story, when the counsellor would be replaced with another, and he would have to start again. [Y] said he found this really frustrating. [Y] said the counsellors in the government services didn't know why they were swapped around.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

[Y] prefers to use the school counsellor or talk to his friends. He noted it is sometimes hard using the school counsellor as he can only see the school counsellor during lunchtimes so he doesn't really get a lunchbreak. [Y] also explained it is difficult using a school counsellor as he often feels down after a counselling session and finds it difficult to concentrate on school work afterwards. [Y] has been seeing a social worker for about two years and has a Doctor.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

A succession of doctors and caseworkers mean instability and an unwillingness on [X]'s part to do anything.

(Carer, Father, Australian Capital Territory, Submission #208)
6.6.8.2 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.

Under this Standard, submissions and presentations indicate concerns about

  • comprehensive health care not being promoted by the MHS; and
  • inability of consumers to afford basic health care.
6.6.8.2.1 Comprehensive health care not promoted

The Mental Health Community Coalition Consumer and Carer Caucus expressed concern that physical health care needs of consumers are not recognised and treatment not organised. 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'.

There is little recognition of the need for special programs to take care of other medical problems which occur for people experiencing mental illness, often, at least partially the result of side effects of medication. Diabetes, other metabolic problems and cardiovascular conditions affect people with schizophrenia particularly, leading to a life expectancy variously estimated at between 12 and 20 years less than the average of a given population.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.2.2 Inability to afford basic heath care

Concern was expressed that, due to the lack of bulk billing general practitioners and specialist providers, many consumers were unable to access basic health care for many physical health complaints. This may also be the result of mental health staff not knowing about the range of other resources available and how to access them (Standard 8.2.2).

Consumers and carers reported that the most basic of health care is often out of the reach of people experiencing mental illness and sometimes also out of the reach of members of their families. In particular, greater and free access to the following services and professionals is required: GPs; Specialists; Non-urgent, non-life threatening or elective procedures; Dental care; Foot care; Skin care; Optometrists, physiotherapists and psychologists etc.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

There is little access to bulk-billing GPs in the ACT. People with mental illness quickly acquire a backlog of health complaints that remain largely undiagnosed and/or untreated. Dental care is beyond the reach of most people with mental illness as well as their families unless they are able to afford private health insurance.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

You don't have to be mentally ill for long, before you can't afford basic health care. Add in becoming homeless and you soon gather a number of health complaints.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

6.6.8.3 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;
  • lack of services for youth;
  • police and the criminal justice system;
  • lack of recognition of cross-border agreements;
  • housing;
  • Centrelink;
  • employment; and
  • the need to integrate mental health strategy with drug strategy.
6.6.8.3.1 The need for whole-of-government approaches

Overall, many submissions indicated a lack of integrated service delivery or whole-of-government approach to solve the complex support needs required for people with mental illness and their families and carers to live in the community in a dignified manner. These problems were reported with education, health, welfare, the police, corrective services, community services, disability services and housing. Many submissions identified that a broader governmental, societal and community approach was urgently required:

One respondent wrote: 'We just become poorer and poorer. I cannot get dental care, I'm on the waiting list for that. You name it, I'm on the waiting list for a number of things ranging from health care through to accommodation. I probably won't be able to keep the car going after this year. The payment I get is just not enough to live on. I can't remember our last holiday. I shop at St Vinnies, haven't had new clothes for ages. It is just so tiring trying to make ends meet. It can come down to, do I buy milk and food or go to the doctors.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.3.2 Lack of services for youth

Concern was expressed regarding the paucity of services and integrated services to assist young people with mental illness or mental health problems. Such services are seen as essential from an early intervention perspective to halt spiralling negative life consequences which result in homelessness, suicide, and entry into the criminal justice system.

We are letting young people down by not dealing with them properly. We need to provide services in the prison system if that is where they are going to end up.

(Service Provider, Australian Capital Territory, Canberra Forum #20)

I work with young people aged 13-18 years, but this is getting pushed out to work with people as old as 25. I provided 24 hour support to a 21 year old recently who couldn't get care anywhere.

(Service Provider, Australian Capital Territory, Canberra Forum #20)

Services required for adults are different to those for young people. Many young people are presenting to mental health services for the first time.

(Service Provider, Australian Capital Territory, Canberra Forum #20)
6.6.8.3.3 Police and the criminal justice system

Due to diminishing access to mental health services for consumers throughout their illness cycle, police have been increasingly called to respond and assist with people with mental illness, especially in times of crisis. This places consumers at increased risk of coming into contact with the police and the possibility of entering the criminal justice system.

While Memorandums of Understanding and protocols have been drawn up, evidence suggests that further education is required to inform police about how to integrate with a range of services available to access treatment and support services and more clearly protect the rights of people with mental illness who come into contact with them and the criminal justice system. Police clearly expressed concern about their inability to access care and support for consumers when needed.

We have self harmers, people we have to watch in the watchhouses, but we don't have support and care.

(Police Officer, Australian Capital Territory, Canberra Forum #6)

We are looking for more staffing by Mental Health in the ACT. We need to know what services are available and how we can work better with them.

(Police Officer, Australian Capital Territory, Canberra Forum #6)

Despite the existence of an official Memorandum Of Understanding between police and mental health services in the ACT, consumers and families reported that there appears to be a need for clarification of responsibilities on a daily basis and at 'ground zero'. It is reported that mental health services frequently refuse to act and families report they are told by metal health services to phone the police.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

85% of prisoners in NSW have mental health problems. 65 % of prisoners in NSW have substance abuse problems. There has been a huge increase in the numbers of people with mental illness resorting to substance abuse.

(Advocate, Australian Capital Territory, Canberra Forum #7)

Young people should not be going into custody.

(Service Provider, Australian Capital Territory, Canberra Forum #20)

Those in attendance pointed to the apparently increasing role of emergency services personnel in responding to people with mental illness who are in crisis. The need for ongoing education, training and support for emergency services personnel from mental health services was stressed. Consumer and carer advocates and the Mental Health Consumer and Carer Caucus stated that it was important that they assist in such training.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.3.4 Lack of recognition of cross-border agreements

Concern was also raised about the lack of recognition of cross-border orders, transfers and admissions despite formal agreements.

Cross-border recognition of orders, transfers and admissions despite formal agreement and legislative base remain problematic.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.3.5 Housing

The lack of available housing and accommodation options for people with mental illness was raised as a critical gap in the attainment of mental, physical and social well-being of consumers. Reports suggest that access to any housing or accommodation option is almost impossible even in a crisis and no step down facilities are available after discharge from an inpatients unit. Concern was also expressed that the Department of Housing was not taking into consideration the accommodation needs of consumers. Also noted in other parts of this Report (e.g. Standard 11.4.B - Supported Accommodation), the lack of available housing and accommodation options and the inability to access community services has resulted in many people with mental illness becoming homeless or has placed intolerable strain on families and contributed to deteriorating mental and physical health and quality of life.

Those in attendance reported that a critical short fall in services in the ACT is absence of a system of person centred, flexible, community based housing and support options, that respond to a person's changing needs in a timely manner. Bedsits available through public housing were thought to be of a poor standard, inappropriate to the needs of people with mental illness and difficult to access. There is reported to be very little public accommodation for young people and single adults. Waiting lists are reported to be high. Accommodation in a crisis other than at Ainslie Village is difficult to obtain. Crisis accommodation funded by SAAP are reported to be frequently full and also have difficulty in accommodating a person who has been either discharged from a psychiatric inpatient unit or who has been refused inpatient care.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

People in attendance reported that in their experience the Dept Housing either hasn't taken notice of reports from psychologists and psychiatrist concerning the accommodation needs of people with mental illness or has been unable to act on the recommendations contained in these reports.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.3.6 Centrelink

[Y] said at one point his family were living on under $10,000 a year.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

The Mental Health Community Coalition Consumer and Carer Caucus 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.

People experiencing mental illness as well as their families frequently experience financial problems. For the people with the illness themselves, the longer they are sick or the more episodes they experience the more likely it is that their only income is Centrelink payments. It is very difficult to subsist on Centrelink payments. A Centrelink payment barely covers board or rent and people are often left with little for food, transport, clothing and other necessities. People with mental illness frequently have difficulty in affording health care and medications as well.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Family members and other carers are faced with having to cover the unmet costs of living for their loved one. These costs can be considerable - ranging, it is reported, not uncommonly from $60 to over $100 per week. Families also find themselves with unpaid bills, fines and unpaid rent when the loved one is hospitalised or is experiencing an episode of acute illness. Many families due to the burden of caring for a loved one with mental illness have not been able to maintain employment and hence are forced to rely on Centrelink payments. This results in many carers themselves not being able to afford health care and other necessities for themselves.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

One respondent wrote: 'We just become poorer and poorer... The payment I get is just not enough to live on. I can't remember our last holiday. I shop at St Vinnies, haven't had new clothes for ages. It is just so tiring trying to make ends meet. It can come down to, do I buy milk and food or go to the doctors.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Service providers present reported that it is not uncommon for families to be unaware of the carer payment available through Centrelink.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.8.3.7 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, concern was raised regarding difficulties with job support, 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 no supported employment program that meets the criteria of best overseas practice. My son would dearly love to work part-time, but in a field in which he has experience.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

[Y] said he thought the Government is screwing families who have a mental or physical disability. "There aren't really any facilities out there to train people and when they do get jobs it's like at a McDonald's level and when someone on a disability pension gets this type of low-paid job, their pension is docked."

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)
6.6.8.3.8 Need to integrate mental health strategy with drug strategy

Concern was expressed for the need for mental health policies to be linked with drug strategies.

Drug law reform is required. Drug policy setting should be integral to mental health, especially relating to the prison population in NSW.

(Advocate, Australian Capital Territory, Canberra Forum #7)

Mental health problems are not a big predictor of criminal conduct but combinations of mental illness and substance abuse are causing big problems.

(Advocate, Australian Capital Territory, Canberra Forum #7)

A particular problem is the heroin drought leading to increased use of Crystal Method, also known as Ice. Parents are desperate for help. At least with opiates, the consumers are quiet as a baby, but there is a big difference with Ice. We aren't stopping these drugs coming in, despite the heroin busts.

(Advocate, Australian Capital Territory, Canberra Forum #7)

We need to look to the heroin trials in Switzerland and the social integration of people on these programs. These programs make an enormous contribution to people's lives.

(Advocate, Australian Capital Territory, Canberra Forum #7)

You must look at more than resources; you must look at the effects of policies on people. The stress of trying to access drugs is bringing on mental health problems. There is a need to change how we deal with these problems.

(Advocate, Australian Capital Territory, Canberra Forum #7)

6.6.9 STANDARD 9: SERVICE DEVELOPMENT

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

Mental health services are not implementing the National Standards for Mental Health Services and the Third Plan, despite government beliefs.

(Advocate, Australian Capital Territory, Canberra Forum #11)

Under this Standard, submissions and presentations indicate concerns about:

  • the current state of mental health services in the ACT;
  • focus on the medical model for service delivery is inadequate;
  • lack of funding;
  • low quality of services associated with staff shortage;
  • staff attitudes;
  • more services required to support young carers;
  • research needed; and
  • the need for an independent review to ensure ACT strategic plan and services conform to national mental health policies.

6.6.9.1 Concerns about the current state of mental health services in the ACT

The majority of submissions and presentation at forums conveyed a sense of despair that services were not available, a loss of hope that service delivery will ever improve, and the belief that the MHS is chronically under-resourced.

Mental health services are not available here in Canberra. People are being turned away.

(Service Provider, Australian Capital Territory, Canberra Forum #20)

In the ACT we have a chronically under-resourced system that simply is dealing with crisis care.

(Carers, Parents, Australian Capital Territory, Canberra Forum #10)

'Loss of hope that things will ever get better' was how several in attendance reported to view the current state of mental health services in the ACT. Other important comments made by consumers and carers included the following: 'I have lost a lot of hope, I have suffered a lot of stress as there has not been much improvement in my husband's treatment over the last 30 years - the cycle still comes and goes - the high - psychosis - depressions - normal. There have been many backward steps in this time including not being able to get help early or in a crisis and not being able to stay long enough in hospital.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Major service gaps are on the rise, with plans, strategies, and government promises failing to meet the needs of this vulnerable community group. This results in carers, families and the community sector, being forced to take the brunt. As a result, the community sector feels under constant pressure to respond to hopelessness, helplessness, and the despair felt among consumers / carers as they attempt to do the impossible - fill the gaps, but at what cost?

(Mental Health Foundation ACT, Australian Capital Territory, Submission #256)

There is major despair from consumers. Contrast the ACT with New Zealand, which has well resourced and well initiated forums and look how decisions are made. We need programs for consumers to get faith in themselves.

(Consumer and Consumer Activist, Australian Capital Territory,
Canberra Forum #2)

However, if and when I am no longer available, I have no confidence whatsoever that my son will receive what he needs.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

What of the future? Others see a light. I see a black hole. I am sad and every day I get sadder feeling as if I will die knowing that my son may live for a few decades after me in torment, loneliness and victimised.

(Carer, Father, Australian Capital Territory, Submission #208)

I want to speak about motivation. I don't know what the motivation of the mental health bureaucracy is. For mental health workers it is "Please God, don't let them die on my shift". For carers it is "Please God don't let them die and give me my life back". For consumers it is about wanting a quality of life.

(Consumer and Consumer Activist, Australian Capital Territory, Canberra Forum #2)

I have a problem with mental health; I call it a 'Mental Health Service Trauma' induced problem. I recently spent three weeks in a mental health service.

(Consumer, Australian Capital Territory, Canberra Forum #3)

Unless people are heard then the government of the day whether it be State or Federal will do nothing.

(Carer, Wife, Australian Capital Territory, Submission #149)

SANE Australia noted the following recent improvements in service delivery:

Community-based programs have been expanded, with a new outreach worker in the southern as well as the northern region; two dual diagnosis workers working with Aboriginal and Torres Strait Islanders, and introduction of a Forensic Mental Health Team.

(SANE Australia, National, Submission #302)

6.6.9.2 Focus on the medical model for service delivery is 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 rights of people with mental illness.

I would like to know why mental health funding is dominated by the medical model when funding could be better used to develop mechanisms to provide assistance for when people are well. We need to give people an opportunity of a life worth living. In the ACT less than 5% of the funding for health goes into social programs to help people do what they want to do with their lives ... The medical model is about risk management. We neglect people when we leave them out to rot - in front of a TV all day! I lost all my social skills - I see so many of my fellow consumers who can't do this because they have been dominated by the medical model. People go into self-medication with pills and drugs - we are now the dominant group in the criminal justice system. We need case workers who have no more than 8-10 clients and who can give due attention to people's long-term needs.

(Consumer and Consumer Activist, Victoria, Footscray Forum #3)

Finally, ADACAS is concerned at the prevalence of the medical model across all forms of service provision for people with mental illness and/or dysfunction who are living in the community. We do not believe that ACT MHS and community based services overall are in the "right relationship" with mental health consumers. Whilst we acknowledge the importance of the acute health system and long term clinical management for people with mental illness and / or dysfunction, we believe that their role is to support someone to have a good life, not to control it.

(ACT Disability, Aged and Carer Advocacy Service (ADACAS), Australian Capital Territory,
Submission #139)

Our community could benefit from a return to the program of social health visitors initiated by Dr Brain Hennessy... Those selected received substantial training, were given a car, were at the call of, and assisted, psychiatrists, psychologists, doctors and social workers. [They] were mainly the first involved in crisis intervention and the main contact following up patients after their stay in psychiatric ward of the hospital. The difference in [their] position as compared with the other professionals was that [they] we were considered more as a friend to [consumers] and their family, someone on their side. Thus [they] were able to persuade clients to cooperate more fully with treatment plans. Gone are the social health visitors; the service has become more clinically oriented, replacing the human / personal involvement. This makes it more difficult for people to develop a good self image and experience hope for the future. In our endeavour to improve mental health we could do no better than re-examine Dr Brian Hennessy's approach and implement again the strategies that worked effectively in the past.

(Anonymous, Australian Capital Territory, Submission #132)

6.6.9.3 Lack of funding

As stated above, concern was expressed that the ACT has a chronically under-resourced system and is therefore unable to deliver quality mental health services. Claims were made that resources are not allocated to reflect national mental health policies (Standard 9.14) or in a manner which allows the MHS to respond promptly to the changing needs of the defined community (Standard 9.15).

The mental health system is collapsing Australia wide and Canberra included. We just don't have the resources.

(Consumer and Consumer Activist, Australian Capital Territory, Canberra Forum #2)

I am fully aware that resources, both financial and human are inadequate today. I am fully aware that treatment in the ACT does not match best practice in other parts of the world. I am fully aware that appropriate accommodation with appropriate support is almost non-existent in the ACT and I am sure that you will hear much about that.

(Carer, Australian Capital Territory, Submission #173)

The government don't understand the depths of psychiatric disability, which is reflected in the lack of funding as well as attitudes to this issue.

(Carer, Father, Australian Capital Territory, Canberra Forum #18)

A deeper level of resources to support people with mental illness are required.

(Carer, Father, Australian Capital Territory, Canberra Forum #18)

6.6.9.4 Low quality of services associated with staff shortage

Lack of resources, shortage of staff and high demand for services was seen to be impacting on the quality of care in the MHS. The inability of the MHS to recruit and retain skilled and experienced staff was also seen as a factor that impacted on attitudes and behaviour of staff. All of these factors prevented the MHS from delivering 'a range of high quality mental health treatment and support services' (Standard 11.4) and protecting the rights of people with mental illness and mental health problems.

Consumers and carers reported that the standard of care and treatment in in-patient facilities can be very unsatisfactory. Most present suggested that the reasons for this included a shortage of staff and difficulty in keeping sufficient numbers of skilled and experienced staff in the public system.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

I have recently noticed a deterioration in the care my son receives, apparently because there is a shortage of psychiatrists and clinical managers in public mental health services. Appointments are infrequent and very short. Little effort is made to explore the current state of my son's symptoms. His appointed clinical case-manager is most helpful, but, when he is on leave, there is insufficient back up.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

The reality is that there is a lack in staffing. Nurses in PSU don't have a choice about working double shifts.

(Consumer Consultant, Australian Capital Territory, Canberra Forum #23)

One carer described what happens when the case-manager goes on leave: 'I also need support to do what I do. I have fantastic support from my son's clinical manager, but when he has been on leave I am left very much unsupported.' Another said 'each time the case-manager changes, we, the family, start all over again. Sometimes the case-manager is receptive sometimes not.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

It was reported that ACT MHS services including PSU (Psychiatric Services Unit at Royal Canberra Hospital), CATT (Crisis Assessment Treatment Team) and regional Mental Health teams are critically understaffed and have difficulty in maintaining staff with appropriate skills and experience. New graduates are reported to not receive the professional support and supervision they require to 'survive in the job'.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Consumers and carers reported staff shortages as a problem at the Canberra Hospital in particular, leading to limits being placed on acute care admissions.

(SANE Australia, National, Submission #302)

6.6.9.5 Concerns about staff attitudes

Concern was 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 (decrease discrimination) and be more supportive when dealing with people with a mental illness.

At best, the mental health professionals we dealt with were genuinely concerned but were seemingly powerless within the system. At worst they were arrogant, inconsistent, disrespectful and uncaring ... Above all, the mental health system failed to provide [X] with hope. Mental illness should not be terminal, and he wasn't beyond help. He need non-judgmental, respectful, professional care in times of crisis and beyond. He deserved so much more than he received.

(Carer, Sister, Australian Capital Territory, Canberra Forum #9)

The staff treating depressed inpatients should be educated about the potential adverse effect of negative comments on the patient's mental state. Education to staff that persons who attempt suicide can and do later succeed in suicide should be undertaken. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

The participation of the psychologist at [W] in apparently discouraging the patient from seeking more assertively E.C.T. warrants further investigation. The psychologist's comments, as reported by the patient to the girlfriend, that the patient had to do it the hard way, if reported correctly are concerning. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

6.6.9.6 More services required to support young carers

Consumers who attended the young carers forum expressed concern that more funding was required to provide services that support young carers.

[Y], in response to the discussion on what mental health services are available for young carers, said there needed to be more government funding, especially to groups like CYCLOPS. Governments should look into making sure there are enough groups like CYCLOPS.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

[Y] also said there needed to be more recognition that there are kids who care for a parent or family member.

(13 year old Carer, Son, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)

[Y] explained in Canberra there is the St Vincent's Program which is a young carers recreation program, Hidden Theatre Company and CYCLOPS to assist young carers. The first two organisations offer social support. [Y] noted there was not a lot of support for young carers and there is no way CYCLOPS can support all the young carers in Canberra. CYCLOPS is funded through the ACT Youth Services Program and came about through lobbying by service providers and individuals.

(Young Carer Support Worker, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)

[Y] explained CYCLOPS is trying to consolidate, not expand at the moment. [Y] said one of the stresses for him is CYCLOPS is only touching the tip of the iceberg as to the number of young carers who need support. [Y] believes there needs to be more education. Young carers also often have problems at school and CYCLOPS is not about setting up a school, but about raising awareness in school of the issues and supporting young people in school.

(Young Carer Support Worker, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)

6.6.9.7 Research needed

Presentations were made at the forum held in Canberra expressing concern that more funding needs to be allocated to determine the problems currently being faced by consumers and the links between physical and consequent mental illness. According to 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'.

On another issue, there is no systematic approach to studying the epidemic of mental illness. Funders at the federal level are out of touch with the actual problems.

(Consumer, Australian Capital Territory, Canberra Forum #14)

Is there research occurring on the connections between medical conditions - of physical problems leading to mental health problems? For example, research into hypoglycaemia leading to bi-polar leading to other mental health problems.

(Family Member, Australian Capital Territory, Canberra Forum #15)

6.6.9.8 Independent review required to ensure ACT strategic plan and services conform to national mental health policies

Mental Health Community Coalition Consumer and Carer Caucus suggested that an independent review of MHS against national standards was required. Standard 9.33 states: 'The MHS is able to demonstrate a process of continuous quality improvement'.

The meeting agreed that an independent review of mental health services in the ACT against national service and workforce standards would be timely and merited.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Consumers and carers called for an independent review of staffing levels and levels of experience and expertise.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

6.6.10 STANDARD 10: DOCUMENTATION

Clinical activities and service development activities are documented to assist in the delivery of care and in the management of services.

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.

6.6.10.1 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'. Concern, however, was expressed by the Chief Coroner following the investigation of the death of a patient that such documentation was not available:

...there did not appear to be an updated, clear and continuous treatment plan for [X] in the period of admission prior to his death. ...the availability of a continuously updated care and treatment plan with a multidisciplinary input is important. It must be clear, unequivocal and available to all persons who need access to it. (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

The Mental Health Services are developing a data base for patients and other information - MHAGIC. The issue of the inclusion of copies of incident reports on client files needs review. Integration of patient notes at a higher standard on the MHAGIC system would provide a much fuller and consistent base of clinical information for treatment, supervision and care for various patients. (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

6.6.11 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.

6.6.11.1 Access

The MHS is accessible to the defined community.

Under this Standard, submissions and presentations indicate concerns about:

  • inability to access services, even in a crisis;
  • police becoming the de facto mental health service;
  • lack of access to care - "right to access care, not be arrested";
  • no access to treatment and support for consumers who are elderly;
  • limited access for people from low socio-economic backgrounds;
  • access denied if consumer has dual disability; and
  • access denied if consumer has personality disorder.

My son deteriorates, he is then in and out of gaol, only ends up in hospital after he has harmed himself.

(Mental Health Community Coalition Consumer and Carer Caucus,
Australian Capital Territory, Submission #342)

An inability for consumers to access treatment and support services, both within the community and inpatient care, often results in a whole series of rights being infringed for consumers, carers and the community. For the consumer, the consequences of these infringements can include increasing disability and hence consequent inability to care for oneself or others, participate socially or work or study. In some cases, the potential for harm to self or others, incarceration, or becoming homeless and poor also can occur.

Similarly, increased burdens on carers disrupts their ability to participate socially and work when their family member became increasingly ill and require more care. The inability to access care for their family member can result in deteriorating mental health for carers as evidenced by the suicide attempt of one carer. Increasing disability also exposes consumers and their families to discrimination and social exclusion. This often results in the further deterioration of the consumers' mental illness.

6.6.11.1.1 Inability to access services, even in a crisis

I am providing 24 hour support to our clients, when ACT Mental Health are not.

(Service Provider, Social worker working with homeless people, Australian Capital Territory,
Canberra Forum #20)

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.

We have to fight for treatment every time a crisis occurs and the fight seems to be getting harder each time.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

The CATT said my relative was too dangerous and that we were to call the police. We then spent several weeks trying to get our relative mental health treatment. Our relative became sicker, hungrier, more mal nourished and more dangerous to himself. In the end he got I after seriously harming himself. He could have died from self inflicted injuries but a member of the family found him.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

It is always the same, getting help in a crisis means the family has to pit itself against the mentally ill member. Authorities need to understand just what this does to relationships and how long it takes, if ever, for the harm to mend.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Consumers and carers both reported that to get help in a crisis generally means getting the police involved. Carers told of the consequences of police involvement and its impact on relationships. 'Once this occurs the person is carted off in handcuffs by police and we are never forgiven'. And 'We don't want to be seen as the enemy but we are put in this position all because we try to get help before something bad happens.'

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Those present at the meeting, urged Mental Health to compare the rates of people presenting at the PSU who are not admitted with the non-admission rates of similar inter-state admission units.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

The police have told us that the Mental Health people are now claiming that [X] was suffering from a personality disorder (Cluster B Personality Disorder), rather than the depression and obsessive-compulsive disorder diagnosed by other practitioners, and they believe that they are therefore absolved from any blame in their approach to him, which was basically to do nothing to help him. We researched this personality disorder and were unable to relate it to [X] at all. They also chose to regard his dependence on small doses of Valium (prescribed by his doctors for anxiety) as a reason not to help him. This was a feeble excuse, given the life-threatening emergency situation he was in ...While they were equivocating over the diagnosis - apparently looking for an excuse to deny [X] the care he needed - he was approaching the point of no return. We do not know what they said to him on the many occasions during his last days when he was reaching out to them for help, but whatever it was, they failed to save his life. (author's emphasis)

(Carer, Mother, Australian Capital Territory, Submission #288)
6.6.11.1.2 Police becoming the de facto mental health service

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 seven days a week. Police however acknowledge that they are not qualified to deal with mental illness and are left with the dilemma about what to do to help in these circumstances as they have a duty of care. 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'. That is, according the Standard, an appropriately skilled service provider should be available to assist police in these situations.

On one occasion we were told to by the CATT to phone the police, the police came, two officers spent almost a day with my family members, gradually got him to cooperate and to agree to going to the PSU. But at no stage during this day as far we know, did mental health services assist the police.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

We are constantly attending incidents involving people with mental illness ...Our concerns are that we are not qualified in dealing with people with mental illness. We rely on the Crisis Teams.

(Police Officer, Australian Capital Territory, Canberra Forum #6)

Beds are not always available. When this occurs, we are then left with the dilemma of how to help the person. We have a duty of care to this person.

(Police Officer, Australian Capital Territory, Canberra Forum #6)
6.6.11.1.3 Lack of access to care - "right to access care, not be arrested"

As mentioned previously, failure to access services when needed in some instances resulted in consumers entering the criminal justice systems. The failure of services to respond and intervene in these instances has had the regrettable outcome of both consumers being incarcerated for the consequences of their illness and the safety of the community being infringed.

I thought as a worker and a taxpayer I have a health system to full back on but this system is rotten. I have endured years of being injected with chemicals despite the effects on my system and my objections. I ended up in the criminal system as it is the only way I could be heard.

(Consumer, Australian Capital Territory, Canberra Forum #14)
6.6.11.1.4 No access to treatment and support for consumers who are elderly

One clinician expressed concern that older people with mental illness were not being provided with adequate treatment and support. Standard 11.1.1 states 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's age'.

I have noticed lately something that worries me, elderly people with mental illness. Some are homeless. They have no home, no help, no hygiene. These people are wandering around the streets while psychotic.

(GP, Australian Capital Territory, Canberra Forum #5)
6.6.11.1.5 Limited access for people from low socio-economic backgrounds

Concern was expressed that the treatment and support needs of people from low socio-economic backgrounds were being denied. Increasingly, access to psychiatrists and general practitioners who bulk bill is becoming difficult and the trend in health, and particularly mental health, is towards a user pays private system. This effectively denies access to people who can not afford private medical insurance or to pay the difference beyond the Medicare rebate. Standard 11.1.1 states 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's ...socio-economic status'.

There is a need to back the rights of people with mental illness and act on this. There is a need to restore human rights, and look at the needs of people below the poverty line. I am now locked out of the mental health system. I am too afraid of them.

(Consumer, Australian Capital Territory, Canberra Forum #14)
6.6.11.1.6 Access denied if consumer has dual disability

Concern was expressed that people with dual diagnosis (mental illness and drug and/or alcohol problems or acquired brain injury) are frequently denied access to any treatment and support services by the MHS. Standard 11.1.1 states 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's ...physical or other disability'.

People with mental illness and drug and alcohol problems or brain injury are reported to be frequently denied service. Both groups frequently do not receive treatment unless an advocate becomes involved. It was reported that when denied psychiatric assessment, treatment and case management, people with dual disability are at risk of offending and coming to the attention of the criminal justice system.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.11.1.7 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'. For many people with personality disorder, failure to access treatment resulted in deteriorating mental health and entry into the criminal justice system.

Assessment, treatment, engagement, case management and care for people diagnosed with borderline or thought to have personality disorder continues to be a failing of mental health services in the ACT. People with personality disorder are reported to be still frequently denied service. They are reported to be another group that frequently ends up in the criminal justice system.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

6.6.11.2 Entry

The process of entry to the MHS meets the needs of the defined community and facilitates timely and ongoing assessment.

No submissions or comments were received pertaining to this Standard.

6.6.11.3 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:

  • the assessment process not being sufficiently comprehensive; and
  • operations of the Mental Health Act.
6.6.11.3.1 Assessment process is not comprehensive

Concern was expressed that during the assessment process, insufficient information is considered for the assessment to be called 'comprehensive' and appropriate conclusions to be drawn either about diagnosis or safety. 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'.

I was horrified to see my DSM [Diagnostic and Statistical Manual] classification that my stress-induced disorder was classified as Bipolar ...The psychiatrist would not listen to me, would not read my diaries. I saw the psychiatrist several times but he wouldn't listen. My GP rang the hospital five times about my work-related stress. My psychiatrist would not see me through the public system, and I was paying $275 to be put on Lithium. I was put on medication after only one episode, but this should not occur before adequate assessment.

(Consumer, Australian Capital Territory, Canberra Forum #3)

Even though he was a voluntary patient in a private psychiatric ward, restrictions on leave, if not disallowing all leave, could have been imposed on the patient. The matter of leave becomes very relevant after he took himself to the Telstra Tower ...Assessment of suicidality when the patient denies that it exists and reassures staff that it is not present is very fraught with difficulty. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)
6.6.11.3.2 Review of the Mental Health Act is needed

Concern was recently expressed regarding the operation of the Mental Health Act and how changes from 'involuntary' to 'voluntary' status are made. From the quote below, staff were constrained in their decision making and were following the Act, but the death of the patient indicate that this process may need revision:

The decision to take the patient off the involuntary section of the Act requires some comment. The Act, in s40, does not allow for the continued detention of a patient if that patient does not refuse to receive necessary treatment and care. In Mr. [X]'s case he was stating that he was accepting treatment and hospitalisation ...His guarantee of his personal safety proved to be unreliable. However, the provisions of the Act constrain the actions of staff. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

The deceased's family is correct in their view that E.C.T. [Electroconvulsive Therapy] given to the patient shortly after the failed suicide attempt at Telstra Tower would have been clinically appropriate and may possibly have saved his life ...The participation of the psychologist at [W] in apparently discouraging the patient from seeking more assertively E.C.T. warrants further investigation. The psychologist's comments, as reported by the patient to the girlfriend, that the patient had to do it the hard way, if reported correctly are concerning ...In my opinion, after the patient was admitted to P.S.U. as an involuntary patient, he should have continued to be treated as an involuntary patient if the Act had allowed. Application could then have been made to give the patient E.C.T ...However, it is understandable that psychiatrists with actual experience of the provisions of the Act, may well have the considered view that the Act doesn't have provisions that allow for [X]'s involuntary detention or compulsory application of E.C.T. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)

6.6.11.4 Treatment and support

The defined community has access to a range of high quality mental health treatment and support services.

18 months ago we had no knowledge of mental health. Then our son fell into deep melancholy and depression. He took himself to Telstra Tower, where the police intervened and took him to Canberra Hospital where he entered into involuntary then voluntary care. He then transferred to Roselyn Green under chemical therapies. We requested he undergo ECT [Electro-Convulsive Therapy] but we were ignored. Still under chemical therapies, he threw himself in front of a vehicle. In the ACT we have a chronically under-resourced system that simply is dealing with crisis care.

(Carers, Parents, Australian Capital Territory, Canberra Forum #10)

Under this standard, submissions and presentations indicate concerns about:

  • individual care plans not discussed with consumers and carers;
  • lack of services for youth;
  • lack of services for people with dual diagnosis (mental illness and drug and alcohol abuse);
  • lack of services for people diagnosed with personality disorders; and
  • problems with forensic care and the new forensic unit.
6.6.11.4.1 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 indicating that both consumers and carers are repeatedly excluded from assessment and treatment planning. Standard 11.4.11 also states: 'The treatment and support provided by the MHS is developed collaboratively with the consumer and other persons nominated by the consumer'. 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 rights of people with mental illness.

I do not like people keeping records about me behind my back that they share with absolutely everyone but me and the people I designate as my supporters. These things make recovery SO MUCH harder. (author's emphasis)

(Consumer, Australian Capital Territory, Submission #287)

[Y] doesn't " ...feel like they are making an effort to figure out what going on." [Y] also said as the youngest child of five children, she had been kept in the dark about her brother's situation, but her family has also been kept in the dark.

(17 year old Carer, Sister, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #1)

Professional advice and guidance for carers ... Carers are on duty 24 hours per day for very little reward and certainly no thanks. They take what is 'dished' out to them. Peace of mind that they are performing their duty correctly would be to their advantage.

(Carer, Wife, Australian Capital Territory, Submission #149)

When we expressed our fear and worry about [X]'s premature discharge from the psychiatric unit after his first suicide attempt, we were told, "Family dynamics are not our concern."

(Carer, Sister, Australian Capital Territory, Canberra Forum #9)

I recommend that policies and procedures be put in place that ensure:

•  The family of the patient should not be used as a substitute for care of an inpatient, or replacing nursing care ...

•  The family and carers of inpatients are to be actively engaged in information sessions on illness, and to be encouraged to actively participate in treatment decisions

•  The role of the family and carers as valuable partners in care should be recognised

(excerpt from a report prepared by an independent external reviewer)

( Carers , Parents, Australian Capital Territory , Submission #354)

The attitude of the staff to us sometimes appeared to be that we, his family, were ignorant fools and a nuisance. They never asked us about [X]'s behaviour at home over the past years. If they had, they would have received valuable insights. We knew for instance, that for years he had shown many typical obsessive-compulsive behaviours, as well as the morbid pre-occupations (depressive ruminations) that blighted his life. And we could have set them straight on the "personality disorder" they attributed to him. (author's emphasis)

(Carer, Mother, Australian Capital Territory, Submission #288)
6.6.11.4.2 Lack of services for youth

Service providers, consumers and 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'.

Our clients are getting older (up to 25 years old); lots of our clients have dual diagnosis [mental health and drug and alcohol problems].

(Service Provider, Australian Capital Territory, Canberra Forum #20)

Young people were reported to fair poorly in the PSU. The need for a specialised and a purpose built unit for children and young people was emphasised.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

[Y] said the mental health system hasn't helped at all, and when he needs counselling he comes to CYCLOPS (Connecting Young Carers to Life Opportunities and Personal Support).

(13 year old Carer, Son, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)
6.6.11.4.3 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 is an insufficient number of mental health services to provide treatment and support to consumers with complex needs. One advocate expressed concern that an inability to access such treatment and support services for mental illness and drug and alcohol problems results in deteriorating mental health and entry into the criminal justice system.

Out of ACT Mental Health and Drug and Alcohol Services, we get the best response from the Drug and Alcohol Services. Drug and Alcohol Services are taking into account mental health issues a lot more than Mental Health Services are taking into account drug and alcohol issues.

(Service Provider, Australian Capital Territory, Canberra Forum #20)

Mental health problems are not a big predictor of criminal conduct but combinations of mental illness and substance abuse are causing big problems.

(Advocate, Australian Capital Territory, Canberra Forum #7)
6.6.11.4.4 Lack of services for people with personality disorders

Advocates and clinicians raised concerns about the inability to access treatment and support services for people with personality disorder. Concern was expressed that the inability to access care or appropriate care (more than medication) resulted in many people with personality disorder entering the criminal justice system.

People with borderline personality disorder are not receiving care. Pills are not the answer. These people need long term therapy.

(Consumer and Consumer Activist, Australian Capital Territory, Canberra Forum #2)

People with Borderline Personality Disorder are self harming ...an example, a person with Borderline Personality Disorder seen by the PSU [psychiatric support unit]. This person said I'll try to kill myself if you leave. The PSU worker left and the person threw themself off a bridge and now has long term physical injuries to deal with as well ... another example involves a person with BPD who cut her wrist. The injury was deliberately left untreated for several days as a lesson of the consequence of her action.

(Advocate, Australian Capital Territory, Canberra Forum #11)

People with borderline personality disorders get caught up in the criminal judicial system. There are 5 people under my organisation's care with BPD, all had problems with the criminal system ... For example, a client with BPD who was charged with threatening to kill a worker whilst in Belconnen Remand Centre, despite the fact he had no means to carry this threat out.

(Advocate, Australian Capital Territory, Canberra Forum #11)

I see a lot of people with borderline personality disorder. I see lots of people with substance abuse problems.

(GP, Australian Capital Territory, Canberra Forum #5)

ACT MHS base their management approach of people with borderline personality disorder on the text of Watson and Kravitz which essentially argues that:

•  institutional care is not appropriate for people with borderline personality disorder; and

•  there needs to be an immediate consequence for their actions.

ADACAS agrees with this approach. However we believe that ACT MHS have misinterpreted it in their management of people with borderline personality disorder. Their implementation of this approach (in ADACAS experience with 4 different people), has been to deny access to PSU [Psychiatric Support Unit] when they have sought admission because they believe they are at risk of harming themselves, or others, or damaging property. They are turned away with no alternatives made available for them, which often leads to action by them that has been described as "criminal activity". The "immediate consequences" of this action is that ACT MHS has them charged eg with assault, damage to property etc. If the person is on bail, then they are charged with breach of bail etc. The ultimate conclusion to this approach is a custodial sentence. However, prisons are not treatment centres, and the likely outcome is the person is released back into their community even more disturbed and traumatised, effectively requiring increased support from MHS.

(ACT Disability, Aged and Carer Advocacy Service (ADACAS), ACT, Submission #139)
6.6.11.4.5 Problems with forensic care and the new forensic unit

A service provider, a police officer and the Mental Health Community Coalition Consumer and Carer Caucus all expressed concern at the lack of appropriateness of treatment and support received by people with mental illness or mental health problems who become subject to the criminal justice system. Problems included: heavy reliance on medication, consumers not being treated with dignity, poor outcomes for Indigenous peoples, and denial of any access to care for some consumers. 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'.

Concerns were also raised with regard to the location of the new forensic unit proposed for the ACT, as it was considered this will not improve the delivery of treatment and support, or promote or protect the rights of people with mental illness who have become subject to the criminal justice system.

A matter of concern raised by several in attendance was the lack of appropriateness of the care received by forensic patients and other people with mental illness or disturbance who become subject to the criminal justice system. Reported short fallings included:

•  People not being treated with dignity e.g., cases where management plans involve no clothing or night shirts;

•  Behaviour being controlled by high medication dosages;

•  some prisoners having been apparently 'black listed' by mental health services including the forensic service;

•  Aboriginal prisoners doing poorly in the forensic mental health system.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory , Submission #342)

We had 3 clients who were in Belconnen Remand Centre who were well known to ACT mental health services, but whom ACT MH couldn't manage. In all 3 cases there was a lack of management. One was released on an afternoon from the PSU [Psychiatric Support Unit] and taken the same day to the Belconnen Remand Centre because of self-harming.

(Service Provider, Australian Capital Territory, Canberra Forum #20)

The need for appropriate treatment facilities rather than gaol was emphasised. Some in attendance pleaded that the ACT should learn from the difficulties experienced by NSW when the forensic mental health inpatient facility was built within the grounds of Long Bay Gaol. It is hoped that all possible steps are taken to prevent the forensic hospital planned to be built adjacent to the new prison from being antithetical to the therapeutic needs and to the recovery of inmates with mental illness.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

We are setting up a forensic service in the ACT but until these facilities are available we don't have support in this area. We are dealing with people who are not offenders, but we do have a duty of care.

(Police Officer, Australian Capital Territory, Canberra Forum #6)

6.6.11.4.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:

  • lack of support services in community;
  • need for family centred approaches;
  • lack of recognition and support for young carers;
  • the lack of social, vocational and rehabilitation programs;
  • need for programs which teach self-care skills; and
  • support services post suicide need to be improved.
6.6.11.4.A.1 Lack of support services in community

ADACAS' perception of what's available for people living in the community with mental illness is that their social and community living needs are not catered for. There is a prevalence of the medical model, even in the important areas of people's lives such as independent living skills.

(ACT Disability, Aged and Carer Advocacy Service (ADACAS), Australian Capital Territory,
Submission #139)

The aim of deinstutionalisation 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.

Consumers and carers in the ACT reported that there is insufficient, appropriate support in the community including:

•  Sufficient numbers of paid consumer and carer advocates;

•  Peer support;

•  Support that can be accessed in a person's home not just from a center;

•  Affordable and appropriate accommodation linked to support;

•  Recovery and rehabilitation programs that are individually tailored;

•  Training and work options.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory , Submission #342)

I do many things for my son that would normally be done by professional people. I do this for two main reasons. Firstly because it leaves more time for overworked professional people to attend to the needs of those whose families do not or cannot help them. Secondly because, even in a perfect world, I think families can do more than professional people and can do it in a way that allows people to feel more a part of the mainstream. I am more likely to be immediately available when my son needs treatment or reassurance. I can better judge when he can cope with appointments etc by himself and when he needs reminders or even accompanying etc. Sometimes he needs me to hear and remember what he has been told by doctors because he forgets so easily. I am here to judge whether symptoms are psychotic or medical, minor or potentially life threatening. I also provide some mainstream company for him and provide education in cooking and housekeeping. However, if and when I am no longer available, I have no confidence whatsoever that my son will receive what he needs.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

I have no family or children so have had to cope on my own. Some good sound advice and suggestions from a mentor would be wonderful, but where can I go without it costing me an 'arm and a leg'.

(Carer, Wife, Australian Capital Territory, Submission #149)
6.6.11.4.A.2 Need for family centred approaches

As reported throughout this Report, concern was expressed about the incredible strain that has been placed on families as a result of an inability to access treatment and support at the earliest possible stage of onset of illness. For families, this was often further compounded by the lack of housing and accommodation options available for their family members.

Concern was expressed by carers, consumers and a service provider regarding the lack of family-centred approaches and access to support groups. 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'.

The lack of access to other support services (e.g. respite, leisure, recreation, education, training, work, employment, respite, home and community care) also contributed to this strain for consumers and their families. Strain was also seen to emanate from discriminatory remarks made from members in the community towards family members, a general lack of community acceptance and increasing social isolation (family and individual).

As a carer I would ask where can I go to get professional help, rather than pay an arm and a leg for help? I don't have any support. When I go to my husband's psychiatrist he is not interested in me, only in my husband. What help can I as an individual access for professional assistance? I need to be with my husband 24 hours a day to him cope with situations or to prevent problems occurring.

(Carer, Wife, Australian Capital Territory, Canberra Forum #4)

I started being involved with mental health in 1970 with Dr Brian Hennessy, who was looking for social health visitors to work with dysfunctional families ... That service was very effective. We worked with mental health nurses, psychiatrists, and the police force. Nowadays, social workers work as a team with psychiatrists and social visitors with depressed mothers who hurt their babies. When people rang me, you wouldn't book them an appointment, you would jump in the car and go visit them. The important thing was to have someone who could go and relate with them ... Understanding is an emotional thing, and we get too caught up with "professionalism".

(Service Provider, Australian Capital Territory, Canberra Forum #8)

Though the ACT Mental Health Services receive training in family sensitive practice, families report that they are frequently told by the clinical case-manager that they can't be involved or that the case-manager can't talk to them or tell them anything. Families reported feeling 'fobbed off'. Families and other carers pleaded to be taken seriously and for clinicians to understanding their role and the difficult nature of that role.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory, Submission #342)

[X] turns more and more to cigarettes and the occasional blowout on dope. After all he has been living in a flat by himself because he can't live with anyone else. While this is happening he starts to resent any offers of assistance or help, obviously thinking that any help should have been while he was at home.

(Carer, Father, Australian Capital Territory, Submission #208)
6.6.11.4.A.3 Lack of recognition and support for young carers

Advocates and young carers expressed concern that young carers are being ignored by the MHS. This included a failure to recognise their contribution and needs for support, in both their caring capacity and as a child of a parent with mental illness. Provision of support is essential to these children and adolescents in order to promote their mental health and ensure that their rights are not infringed.

Young carers are doubly ignored and disadvantaged. There is lack of acknowledgement of their views and needs and values. The majority are aged 10 to 18 years of age, and they need to be supported. Some may start caring as young as 3 years old.

(Advocate, Australian Capital Territory, Canberra Forum #13)

These young carers have problems that are ignored by mental health services and others. Young carers need to be recognised, involved in their parent's care, and supported.

(Advocate, Australian Capital Territory, Canberra Forum #13)

When I found out about other kids, there were other kids; I'm not the only one. Wow.

(17 year old Carer, Sister, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #1)

[Y], in response to the discussion on what mental health services are available for young carers, said there needed to be more government funding, especially to groups like CYCLOPS. Governments should look in to making sure there are enough groups like CYCLOPS.

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)
6.6.11.4.A.4 Lack of social, vocational and rehabilitation programs

Access to social, rehabilitation, 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 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'.

I would like to know why mental health funding is dominated by the medical model when funding could be better used to develop mechanisms to provide assistance for when people are well. We need to give people an opportunity of a life worth living. In the ACT less than 5% of the funding for health goes into social programs to help people do what they want to do with their lives. People's expectations are so low ... The medical model is about risk management. We neglect people when we leave them out to rot - in front of a TV all day! I lost all my social skills - I see so many of my fellow consumers who can't do this because they have been dominated by the medical model. People go into self-medication with pills and drugs - we are now the dominant group in the criminal justice system. We need case workers who have no more than 8-10 clients and who can give due attention to people's long-term needs.

(Consumer and Consumer Activist, Victoria, Footscray Forum #3)

[Y] said he thought the Government is screwing families who have a mental or physical disability. "There aren't really any facilities out there to train people and when they do get jobs it's like at a McDonald's level and when someone on a disability pension gets this type of low-paid job, their pension is docked."

(14 year old Consumer and Carer, Son, Australian Capital Territory,
CYCLOPS ACT Young Carers Consultation #2)

There is no supported employment program that meets the criteria of best overseas practice. My son would dearly love to work pat-time, but in a field in which he has experience.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

There is no organised rehabilitation program which suits my son's needs. There are programs, but they do not suit him as he needs an individually tailored program ... He was doing well, organising his own activities, but a change in his condition undid all of that and he has not had any strong encouragement to resume activities. A mother is not always the best person for an adult son to hear telling him what to do.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

I am now in the situation where [X] has become so introverted and nicotine dependant that he literally hocks everything in his unit to buy cigarettes. He is left walking around an empty flat without food, company, activity or even a radio to listen to ... His days consist of simply pacing up and down an enclosed room, becoming more and more delusional. He trusts no one - least of all his family, who never contact him anyway. He no longer wants to come around to the family home except when he runs out of food, which is usually about half way through the week.

(Carer, Father, Australian Capital Territory, Submission #208)

After about 10 yrs in the 'system' [X] is literally left languishing in a flat without company or friends and being made responsible for every little thing that could go wrong. Housing ignore him except if they want to threaten him with making him pay.

(Carer, Father, Australian Capital Territory, Submission #208)
6.6.11.4.A.5 Need for programs which teach self-care skills

Living skills and self care programs 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. An inability to access self care and living skills programs meant that consumers were not able to gain the necessary skills to live independently:

In the meantime after one of his stays in hospital [X] was given a Government flat. He had been kicked out at 16 and has received no training in budgeting, cooking or even cleaning, He finds himself in a flat and is expected to be self-sufficient. Many normal people can't do this yet [X] is expected to.

(Carer, Father, Australian Capital Territory, Submission #208)
6.6.11.4.A.6 Support services post suicide need to be improved

Concern was expressed in a recent report by the Chief Coroner that support services for family, friends and carers after the suicide of a person with mental illness needs to be improved:

An issue has arisen from the family in this case concerning the insufficiency of support, debriefing and consultation in the events of the present tragedy. Improvement certainly needs to be take[n] ...The existence of support services, contact and debriefing for family, friends and carers are the responsibility of Mental Health Services and should be the subject of improvement as part of the model of care under present development.

(Excerpt from Report of findings by the Chief Coroner)
(Carer, Partner, Australian Capital Territory, Submission #305)

6.6.11.4.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.

Under this Standard, submissions and presentations indicate concerns about:

  • the lack of supported accommodation; and
  • the need for interim (step up and step down) accommodation.
6.6.11.4.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 chances of entry into the criminal justice system.

Crisis accommodation funded the SAAP are reported to be frequently full and also have difficulty in accommodating a person who has been either discharged from a psychiatric inpatient unit or who has been refused inpatient care.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

I have a young soon in his early 20s. He has schizophrenia and lives with me. He is unmedicated ... He is impossible to live with, and only lives with me because he has nowhere else to go. There is no mental health vacancy anywhere in the ACT and he is incapable of living independently. There is just nowhere for him.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

The lack of supported and other forms of affordable accommodation is a persistent problem in the ACT. This shortage not only has a direct impact on people living with a mental illness, it also creates an additional stress on carers who feel pressured to provide accommodation as well as other support. The ACT government announced a $63.6 million Housing Affordability Strategy in 2004, and it remains to be seen whether this will alleviate the shortage.

(SANE Australia, National, Submission #302)
6.6.11.4.B.2 Need for interim (step up and step down) accommodation

Many submissions argued that a range of accommodation options were needed and that these needed to be flexible, for example, interim step-up and step-down facilities. Concern was also expressed regarding the need for specific accommodation facilities for consumers with complex needs (mental illness and drug and alcohol).

The mental health system failed [X] in so many ways. In summary the key failings were: ... safe, secure accommodation was non-existent: there is nothing between the psychiatric unit and the charity-run refuges, which often have waiting lists and seem to pick up the pieces falling from the mental health system.

(Carer, Sister, Australian Capital Territory, Canberra Forum #9)

We believe that there should have been somewhere for [X] to be cared for safely and securely while he was stabilised on the new drug regimen prescribed for his profoundly-depressed and suicidal condition. Then the Valium dependency could have been addressed. (author's emphasis)

(Carer, Mother, Australian Capital Territory, Submission #288)

6.6.11.4.C Medication and other 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 as the only form of treatment.
6.6.11.4.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.

I have endured years of being injected with chemicals despite the effects on my system and my objections. I ended up in the criminal system as it is the only way I could be heard. Every time I spoke to doctors and said please don't give me more chemicals and had my liberty taken away, they didn't want to listen to me and get to the root of the problems. We are treated abominably by our own communities.

(Consumer, Australian Capital Territory, Canberra Forum #14)

My sister had a bad experience here. She had a drug related incident and has been stuck in the system ever since. I have been fighting for her case for many years now ...she has been misdiagnosed for years. It hurts me so much to see the toxic chemicals that are being given to people and they can no longer think for themselves to protest. When they do protest the control system is very much swayed towards treating symptoms with mind numbing drugs which affect their personality and sense of well-being. I have seen this too many times.

(Carer, Sister, Australian Capital Territory, Submission #172)

6.6.11.4.D Therapies

The consumer and consumer's family/carer have access to a range of safe and effective therapies.

Under this Standard, submissions indicate concerns about the lack of access to a range of accepted therapies in the MHS.

6.6.11.4.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 there is an over reliance on medication and access to such therapies in the public mental health system is difficult. It was suggested that lack of access to therapies resulted in one consumer refusing medication as he believed therapy was an important part of his recovery process.

Both consumers and carers reported that whilst a person is in hospital, very little 'therapy' or 'treatment', other then medication and injections, are available or provided.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

There is a lack of therapy in the ACT other than medical treatment available through public mental health services. My son could benefit from CBT or other similar therapies, but such therapy is not offered. This is one of the reasons why he refuses medication, nothing else is offered and he believes rightly or wrongly that other therapies could help him.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

6.6.11.4.E Inpatient care

The MHS ensures access to high quality, safe and comfortable inpatient care for consumers.

For six years I was shoved in wards during which I had to deal with the loss of freedom and dignity. My views were not listened to.

(Consumer, Australian Capital Territory, Canberra Forum #14)

Under this Standard, submissions and presentations indicate concerns about:

  • deaths while in care;
  • lack of beds; and
  • children of parents with mental illness are not being notified of admission of parent or their needs considered while their parent is receiving inpatient treatment and support.
6.6.11.4.E.1 Deaths while in care

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).

[X] was admitted whilst suicidal to a psychiatric unit in the ACT. There were no permanent staff on the unit, and [X] wasn't under observation. A cleaner noticed that he had a plastic bag with him and informed the staff at the unit. There was no response from the staff, and [X] smothered himself with the bag. The length of time in responding to the coronial inquiry is too long. There has been a very slow response to [X]'s death. A report has been commissioned but won't be released until May. There has been a lack of follow up to [X]'s death. I am still waiting 3 ½ years later for the coronial inquiry - my human rights are being violated.

(Carer, Partner, Australian Capital Territory, Canberra Forum #17)

My partner died as a result of suicide at the HD [High Dependency] Unit of PSU [Psychiatry Support Unit] at the Canberra Hospital April 2001. Attached are findings of the Coroner of the appalling treatment he received ...Mental Health Services in our Territory is not serious about change and improvement of that ward. Superficial changes have happened but many things are unresolved ..."As to the manner and circumstances of death; the deceased was found lying on his bed (in the High Dependency Unit of the Psychiatric Unit of the Canberra Hospital) with a plastic bag over his head secured by rubber bands around his neck. The deceased was revived however significant brain damage had been caused and he died in the Intensive Care Unit on [date] 2001 ...Death occurred at the deceased own hand but at a time when he was in a delusional and psychotic state. As a consequence of his Bi-polar affective disorder he was suffering at the time of the incident resulting in death." (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory, Submission #305)

...our story of our youngest son and how he had taken his life even though he was in the care of a private psychiatric unit, Hyson Green, attached to Calvary Hospital in Canberra. He also spent time in the P.S.U. unit at the Canberra Hospital after he made an attempt to take his life at the Telstra Tower.

(Carers, Parents, Australian Capital Territory, Submission #354)

The patient had been given leave from the hospital accompanied by is girlfriend. He was walking behind her across a bridge. When she looked behind she found him throwing himself in front of a passing vehicle ...The coronial inquest was held on [date], 2003. The family and the deceased's girlfriend were legally represented. The hospitals involved and the medical staff were not represented. Witnesses were called from the police and the deceased's girlfriend took the stand. Medical staff were not called to give evidence in the stand. The transcript of the coronial inquest indicates that written statements were received from [Dr. S] and [Dr. T]. No statement was tendered from [Dr. R], though Detective Senior Constable [V] did report back on the record of a conversation that was taped at Dr. [V]'s residence on 25 June, 2003. That was the day after the death. The Coroner called no expert witness. The Coroner did not call the medical staff to the stand. (excerpt from a report prepared by an independent external reviewer)

(Carers, Parents, Australian Capital Territory, Submission #354)
6.6.11.4.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 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 or lengthy waits in emergency departments.

There are not enough beds for the numbers of "unwell" people in the ACT. Inpatient care/facilities are not well resourced - they are always experiencing staffing shortages. To add to this dilemma is the difficulty of accessing psychiatric hospitalisation when most needed. A treating psychiatrist needs to have admittance rights. Alternative options are to go through the trauma of casualty or via the Crisis and Assessment Treatment Team (CATT), either of which can take up to or over eight hours of waiting.

(Anonymous, Australian Capital Territory, Submission #256)
6.6.11.4.E.3 Children not notified of admission of parent or their needs considered

When a crisis occurs, these young carers are often forgotten, despite their knowledge of the consumer. For example, a young carer, arriving home from school, found no one there. No one had contacted this young person to tell them what had happened.

(Advocate, Australian Capital Territory, Canberra Forum #13)

An advocate and a young carer raised concerns that children of parents with mental illness are often not notified when their parent is admitted to hospital. Some of these children and adolescents fulfil the role as carer. Standard 11.4.E.7 states: 'The MHS assists in minimising the impact of admission on the consumer's family and significant others'. Included in the notes to this Standard is the 'care of dependant children'. Concerns expressed indicate that not only are children not being notified, but provisions are not being for their care if necessary.

There also needs to be some way of getting out people do care for a parent, family member and do need support. Hospitals need to be aware if someone is admitted, a child needs to be contacted.

(13 year old Carer, Son, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)

[Y]'s mother has depression. His mother went to her GP and was admitted to hospital and no one told [Y] she had been admitted.

(13 year old Carer, Son, Australian Capital Territory, CYCLOPS ACT Young Carers Consultation #3)

6.6.11.5 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 and presentations indicate concerns about: discharge plans being inadequate.

6.6.11.5.1 Inadequate discharge plans

Serious concern was expressed about the inadequacy of discharge plans, and that sometimes these plans are not even instigated. Reports also indicate that discharge plans had often not been developed in collaboration with the consumer or carer (Standard 11.5.2), that understandable information about the range relevant services and supports had 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). These plans are vital in order to ensure ongoing recovery, prevent relapse and reintegrate as fully as possible into society.

Psychiatric disability is ongoing, not fixed on release from hospital. There needs to be an adequate discharge plan available for people discharged from hospital. These plans don't always occur. Many plans are not adequate enough.

(Carer, Father, Australian Capital Territory, Canberra Forum #18)

There is little to do, and little assistance is said to be given to preparing for discharge or for ongoing recovery in the community.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

Families report frequently not being informed about discharge or about what they are required to do. Consumers and carers also report that the practice of being 'discharged as a client' can have disastrous affects as it results in people being cut-off from follow up and having to start all over again if their condition deteriorates or if warning signs appear. Consumers argued that whilst they often welcome being discharged as a client or as an active client, there are times when follow-up for a further period might assist to prevent relapse following a major episode.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

6.6.11.6 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:

  • being discharged while still unwell; and
  • suicide soon after discharge.
6.6.11.6.1 Discharge while still unwell

Concerns were expressed that discharge was not occurring to an agreed exit plan or health status of the consumer. Such exits could jeopardise the safety of the consumer, especially as entry is almost always on the basis of risk or actual self-harm, or harm to others. According to Standard 11.5.2: 'The exit plan is reviewed in collaboration with the consumer, and with the consumer's informed consent, their care's at each contact and as part of each review of the individual care plan'. Also, according to Standard 11.3.18, a review should be conducted when the consumer is going to exit the MHS, presumably to ensure that exit is occurring at and appropriate stage of the recovery process.

Consumers and family members and other carers reported that discharge occurs frequently too soon and that people are discharged despite being too ill to care for themselves. "It is just not possible to stay long enough. Maybe you can if you have private insurance but if you are a public patient your stay will be brief if you can get admitted in the first place."

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)

It was reported that people are frequently discharged too early from inpatient units and are discharged apparently without firm plans in place.

(Mental Health Community Coalition Consumer and Carer Caucus, Australian Capital Territory,
Submission #342)
6.6.11.6.2 Suicide soon after discharge

As noted above, concern was expressed about the inappropriate discharge of consumers when they were still unwell. Such concerns are confirmed by the reports below of consumers committing suicide soon after discharge:

Our 19 year old son committed suicide 18 months ago. He was at a mental health place 19 hours before he killed himself. He had a history of repeated admissions and discharge. He was let out before he killed himself. He had been in care at Mindalla Unit for 28 hours.

(Carer, Father, Australian Capital Territory, Canberra Forum #1)

His suicide was tragic, made all the more so because it was preventable, we believe, but for the inadequacy of the public mental health system. [X] died just two weeks after his first suicide attempt, eight days after his discharge from the Canberra Hospital psychiatric unit, two days after being refused admission to the psychiatric following a second suicide attempt, and within hours of contact with the mental health crisis team. On the day of his death, [X] had contact with the mental health system no less than three times. [X] had a ten-year history of depression and anxiety and a recent, conformed diagnosis of Obsessive Compulsive Disorder. He was openly suicidal. [X's suicide occurred in early 2004].

(Carer, Sister, Australian Capital Territory, Canberra Forum #9)

6.6.12 STORIES OF HOMICIDE AND SUICIDE IN THE AUSTRALIAN CAPITAL TERRITORY

Our 19 year old son committed suicide 18 months ago. He was at a mental health place 19 hours before he killed himself. He had a history of repeated admissions and discharge. He was let out before he killed himself. He had been in care at Mindalla Unit for 28 hours.

(Carer, Father, Canberra Forum #1)

His suicide was tragic, made all the more so because it was preventable, we believe, but for the inadequacy of the public mental health system. [X] died just two weeks after his first suicide attempt, eight days after his discharge from the Canberra Hospital psychiatric unit, two days after being refused admission to the psychiatric following a second suicide attempt, and within hours of contact with the mental health crisis team. On the day of his death, [X] had contact with the mental health system no less than three times. [X] had a ten-year history of depression and anxiety and a recent, conformed diagnosis of Obsessive Compulsive Disorder. He was openly suicidal. [X's suicide occurred in early 2004].

(Carer, Sister, Australian Capital Territory , Canberra Forum #9)

18 months ago we had no knowledge of mental health. Then our son fell into deep melancholy and depression. He took himself to Telstra Tower , where the police intervened and took him to Canberra Hospital where he entered into involuntary then voluntary care. He then transferred to Roselyn Green under chemical therapies. We requested he undergo ECT [electroconvulsive therapy] but we were ignored. Still under chemical therapies, he threw himself in front of a vehicle. In the ACT we have a chronically under-resourced system that simply is dealing with crisis care. The investigation into his death will be published as an ACT Coroner's Report.

( Carers , Parents, Australian Capital Territory , Canberra Forum #10)

[X] was admitted whilst suicidal to a psychiatric unit in the ACT. There were no permanent staff on the unit, and [X] wasn't under observation. A cleaner noticed that he had a plastic bag with him and informed the staff at the unit. There was no response from the staff, and [X] smothered himself with the bag. The length of time in responding to the coronial inquiry is too long. There has been a very slow response to [X]'s death. A report has been commissioned but won't be released until May. There has been a lack of follow up to [X]'s death. I am still waiting 3 ½ years later for the coronial inquiry - my human rights are being violated.

(Carer, Partner, Australian Capital Territory , Canberra Forum #17)

My partner died as a result of suicide at the HD [High Dependency] Unit of PSU [Psychiatry Unit] at the Canberra Hospital April 2001. Attached are findings of the Coroner of the appalling treatment he received ... Mental Health Services in our Territory is not serious about change and improvement of that ward. Superficial changes have happened but many things are unresolved ... "As to the manner and circumstances of death; the deceased was found lying on his bed (in the High Dependency Unit of the Psychiatric Unit of the Canberra Hospital) with a plastic bag over his head secured by rubber bands around his neck. The deceased was revived however significant brain damage had been caused and he died in the Intensive Care Unit on [date] 2001 ... Death occurred at the deceased own hand but at a time when he was in a delusional and psychotic state. As a consequence of his Bi-polar affective disorder he was suffering at the time of the incident resulting in death." (Excerpt from Report of findings by the Chief Coroner)

(Carer, Partner, Australian Capital Territory , Submission #305)
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