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Disability Rights: Not for Service - Report: Part 6_9

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

6.9 NATIONAL

ANALYSIS OF NATIONAL SUBMISSIONS AGAINST THE NATIONAL STANDARDS FOR MENTAL HEALTH SERVICES

This section discusses the submissions that did not focus on services in any one state or territory, but took a national perspective.

In summary, information presented in this section was gathered from 15 submissions (see Appendix 8.3.9). A draft copy of this report was sent to the Minister for Health and Ageing for comment. An analysis of the response from the Federal Government (reproduced in Appendix 8.4.9) and an overall review of mental health service delivery in Australia is contained in Part 2.7.9.

6.9.1 STANDARD 1: RIGHTS

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

Under this Standard, submissions indicate concerns about the rights of carers not being upheld.

6.9.1.1 Rights of carers not being upheld

Standard 1.1 states: 'Staff of the MHS comply with relevant legislation, regulations and instruments protecting the rights of people affected by mental disorders and/or mental health problems'. Included in the notes to this Standard are The Australian Health Ministers' Statement of Rights and Responsibilities, the UN Principles on the Protection of People with a Mental Illness and Improvement in Mental Health Care, departmental codes of conduct and mental health legislation.

Concern was expressed that staff of some mental health services are not complying with all relevant legislation, regulations and instruments protecting the rights of carers of people affected by mental disorders and/or mental health problems at all times. This was seen as particularly problematic given the subsequent reliance on carers while the system is in crisis. Specifically, the lack of sufficient support, information and education about the illness or treatments available was noted. 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 carers, information about the course of the illness and how they can best support their family member and access support for themselves is vital in achieving the best possible outcome for the consumer and minimising the impact of the illness on the family. The following quotes indicate that this information and support is not always being provided:

Under the National Mental Health Strategy, the Mental Health statement of rights and responsibilities, which was adopted by the Australian Health Ministers in 1991, carers and advocates have rights and responsibilities, which include the right to respect; provision of information, education, training and support; to seek further opinions in respect of treatment and diagnosis of the consumer; to limit their availability to the consumer; to have access to appropriate complaint processes; and to have access to assistance in managing their own difficulties in their caring role. A carer also has the right, where the consumer consents, to have access to the consumer, to be consulted by service providers in relation to the consumer's treatment, to be able to access support services for the consumer, and to be able to exchange information with the service providers regarding the consumer ...It must be recognised that a mental health system which does not meet the needs of consumers or provide basic human rights to treatment for mental illness, also has a severe and unrelenting impact on the families and carers of the consumer. In this regard, any actions recommended by the Commission as a result of the current investigation, must take into account the effect on the hidden workforce in mental health care - the families and carers of the mentally ill. The rights of carers, as agreed by all Australian Health Ministers in 1991, are effectively being ignored while the system is in crisis.

(Carers Australia, National, Submission #276)

The following issues are of grave concern to us ... Within the private sector, the burden of care for people with a mental illness or disorder has fallen largely to their carers. While the current Government has increased the Carers allowance, there is little other support or education for this hidden army of service providers. This alone can affect the quality of and ability to deliver continuity of care (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

6.9.2 STANDARD 2: SAFETY

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

No submissions or comments were received pertaining to this Standard.

6.9.3 STANDARD 3: CONSUMER AND CARER PARTICIPATION

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

Under this Standard, submissions indicate concerns about the lack of participation by consumers who are young.

6.9.3.1 Lack of participation by consumers who are young

Standard 3.1 states: 'The MHS has polices and procedures related to consumer and carer participation which are used to maximise their roles and involvement in the MHS' and Standard 3.6 states 'consumers and carers are supported to independently and individually determine who will represent the views of each group to the MHS'. The Australian Infant, Child, Adolescent and Family Mental Health Association expressed concern that children and young people are not being involved at any level and therefore their needs are not being effectively lobbied for or considered in the planning and implementation of services:

Children and young people have a right to participate in and provide input into decisions that are likely to affect them. Parents and caregivers also play a crucial role in advocating for children and young people. While infants and children may find it difficult to speak for themselves, it is also commonplace that young people are not given the opportunity to express their views. Raphael (2000) noted: "Advocacy for and on behalf of children and young people requires recognition of their rights and needs to ensure that appropriate responses and systems of care are provided. It involves providing opportunities for children and young people to have a say in decisions that are likely to affect them. Parents and other caregivers also play a crucial role in advocating for children and young people." (Raphael 2000, Page 1)

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

6.9.4 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.

Under this Standard, submissions indicate concerns about:

  • high levels of stigma;
  • feelings of isolation experienced by consumers and their families due to the rejection by the extended family and the community;
  • the need for community education campaigns; and
  • stigma and stereotypes perpetuated by the media.

6.9.4.1 High levels of stigma

Various organisations spoke of the high levels of stigma associated with mental illness and prejudice experienced by people with mental illness in community, workplace, school, healthcare and family settings. Reports were also received of families being discriminated against. Community awareness campaigns to increase understanding of mental illness, acceptance of people with mental illness and information about how to support people with mental illness and their families and carers were described as being critical. The following extracts show how stigma is preventing people with mental illness from 'being able to participate in the activities of daily living to which they are entitled':

The stigma around mental illness and a history of abuse, and lack of effective responses, prevent many from accessing what should be an integrated approach, drawing on informed and comprehensive community-based appropriate professional and welfare assistance.

(Advocates for Survivors of Child Abuse, National, Submission #262)

There is no doubt that in any forum or group where beyondblue / blueVoices was present that the issue of stigma was a major issue that was raised. Stigma presents in a whole range of ways and we have had significant feedback around stigma in the work place, stigma within families, and stigma within younger Australians at school who experience these illnesses. Stigma presents itself in subtle ways, and blatantly. The overall effect of stigma however, whether it is subtle or blatant, is the further alienation of people from being able to participate in the activities of daily living to which they are entitled. There is also little doubt that the issues of stigma prevents some people from seeking treatment for their illness which can result in further fractured relationships within the family and work environment. Recommendation: That attending public awareness campaigns around the areas of Depression and Anxiety such as beyondblue, continue, that there is active education in the work place and schools on the issues of Depression and Anxiety and that an active school program is instituted nationally on these matters.

(blueVoices, National, Submission #355)

Our research has proven to us that the root cause of inequity and social injustice is stigma. Therefore, as a society we need to continue with public awareness and education and to demonstrate our intolerance of stigma and discrimination in the workplace, the schoolyard and our health care system.

(blueVoices, National, Submission #355)

Australia: The Seven Types of Stigma:

1 Political Australians affected by mental illness are almost completely ignored by government and opposition. The crisis in mental health services is rendered invisible - rarely mentioned in Parliament and kept firmly off the agenda.

2 Funding allocation The proportion of Australia's health budget spent on mental health services is under 8%. In comparable OECD [Organisation for Economic Co-operation and Development] countries, the proportion is 12% or more. This shortfall has a drastic effect on the capacity of services. Research funding in the area is also inadequate.

3 Planning and service delivery Decision-making on mental health services at the highest levels is characterised by low prioritisation, and lack of commitment. Service delivery in some States is being 're-institutionalised' by stealth - with programs being moved back into institutions and hospitals to save money. Effective treatments are rationed because of budget restrictions.

4 Professional Mental health professionals are overwhelmingly focused on treating people when acutely ill - often ignoring the need for recovery-focused rehabilitation and support for family and other carers. Some also treat consumers and carers in a disrespectful manner.

5 Legislative The 2004 Review of the Disability Discrimination Act 1992 revealed that vilification of people with a mental illness is not unlawful in any State or Territory except Tasmania.

6 Media Despite some improvement, news and entertainment media persist in promoting inaccurate and insulting stereotypes of mentally ill people as violent and unpredictable.

7 Community Eighty per cent of people affected by mental illness reported experiencing stigma in the past two years. This day-to-day abuse (fuelled by the media and lack of legal protection) is rated as nearly as distressing as their symptoms by many.
(author's emphasis)

(SANE Australia, National, Submission #302)

SANE Stigma Survey 2004: Conducted during June-August 2004, the survey asked consumers and carers to report on their experience of stigma in the past two years. Analysis of over 300 responses suggests that being treated unfairly and disrespectfully - by health professionals as well as the general community - is a regular occurrence for many Australians whose lives are affected by mental illness.

(SANE Australia, National, Submission #302)

Both consumers and carers alike are seeking acceptance in the broader society in which they live ...

(blueVoices, National, Submission #355)

6.9.4.2 Feelings of isolation - rejection by family members and the community

Standard 4.1 states: 'The MHS works collaboratively with the defined community to initiate and participate in a range of activities designed to promote acceptance of people with mental disorders and/or mental health problems by reducing stigma in the community.' However, concern was expressed that not only does stigma and lack of understanding still shape community behaviour and result in the exclusion of people with mental illness in social and workplace settings, but that often this behaviour extends to close family members and intimate partners resulting in relationship breakdown. As the following quotes indicate, the need for activities to promote community acceptance not only for the community but for family members as well is critical.

...three members of my family who have been diagnosed with Schizophrenia. This has had a devastating effect on not only the immediate family but also on extended family relationships, namely the isolation we have suffered since the diagnoses were made.

(Carer, Anonymous, Submission #224)

People such as myself who've suffered really want friendship, acceptance and kindness, we don't have a need for things.

(Consumer, Anonymous, Submission #133)

6.9.4.3 Need for community education campaigns

Carers expressed concern about the stigma and lack of understanding that still surrounds mental illness and how frequently this resulted in members in the community distancing themselves from consumers and their families and providing little support. Non-acceptance and lack of understanding by some mental health workers and administrators was also noted. This would indicate that campaigns and activities to address community acceptance and reduce stigma (Standard 4.1) to-date have not yet successfully changed community attitudes to mental illness and that more activities to address this are needed:

To overcome this debilitating situation we (as so many other families in our situation) need more public awareness campaigns to reduce the number of misconceptions/stigmas surrounding mental illness; particularly those attached to Schizophrenia.

(Carer, Anonymous, Submission #224)

[mental health and drugs] ...I feel it is an epidemic in our society, that is so little supported.

(Carer, Mother, Anonymous, Submission #164)

There is a place in the lives of those who've been abused to accept help from those in the community, that is the average person who just wants to listen, who is more on a par with these people who don't sit in an ivory tower. The senior mental health community is well trained, educated and hence wealthy and they are therefore advisory, however do they really understand individuals.

(Consumer, Anonymous, Submission #133)

6.9.4.4 Stigma and stereotypes perpetuated by the media

SANE Australia raised concern that activities to reduce stigma in the community must also address education of media personnel to modify their portrayal of people with mental illness and comparative references. The 'Mindframe Strategy' was noted as a positive initiative to address this issue:

While there has been some improvement in media coverage of mental illness, this is not sufficient to counter systemic stigma. Some newspapers and TV dramas also continue to portray mental illness in an inaccurate, sensationalised and disrespectful way. This can suit political leaders, as it displaces blame for the consequences of poor service delivery onto the mentally ill themselves.

(SANE Australia, National, Submission #302)

While our mental health system is in crisis, a number of positive initiatives by the Australian government deserve acknowledgement. Examples of praiseworthy individual programs include: ...Mindframe Strategy. A sophisticated, wide-ranging strategy promoting responsible reporting of mental health and suicide issues in the media.

(SANE Australia, National, Submission #302)

6.9.5 STANDARD 5: PRIVACY AND CONFIDENTIALITY

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

Under this Standard, submissions indicate concerns about:

  • the complicated system of legislation protecting the privacy and confidentiality of consumers and carers; and
  • privacy laws hindering communication with and involvement of carers.

6.9.5.1 Complicated system of legislation protecting privacy and confidentiality of consumers and carers

Standard 5.1 states: 'Staff of the MHS comply with relevant legislation, regulations and instruments in relation to the privacy and confidentiality of consumers and carers' and Standard 5.2 states 'the MHS has documented policies and procedures which ensure the protection of confidentiality and privacy for consumers and carers and these are available to consumers and carers in an understandable language and format'. The consumer is to be encouraged and provided with opportunities for others to be involved in care (Standard 5.3) and they are to give 'informed consent before their personal information is communicated to health professionals outside the MHS, to carers or other agencies or people' (Standard 5.4).

Carers Australia expressed concern regarding the multiple pieces of legislation covering privacy and confidentiality in each State and Territory and that this system imposes a barrier to the potential sharing of information and involvement of carers to achieve the best possible outcome for consumers:

A common problem for carers is the impact of privacy laws and recognition of their role. Each State and Territory has different legislation governing rights of carers and the release of information to carers so that a three-tier system must be overcome prior to information being shared with the mental health service or recognition of their role being granted. This tiered system is comprised of the relevant State or Territory mental health legislation, State or Territory privacy or health legislation and the Federal privacy laws.

(Carers Australia, National, Submission #276)

6.9.5.2 Privacy laws hindering communication with and involvement of carers

Carers Australia expressed concern that barriers associated with policies and procedures designed to protect the confidentiality and privacy of consumers are impeding communication between consumers, carers and clinicians in the provision of treatment and the sharing of vital information. These concerns indicate that policies and procedures related to privacy and confidentiality are often not being made available to consumers and carers in an understandable language and format (Standard 5.2) and that frequently the mental health system is not encouraging and providing opportunities for consumers to involve others in their care (Standard 5.3). The following quote indicates the level of frustration experienced by carers:

Unfortunately, carers quite often experience barriers with privacy issues where they are not recognised in their role, or they are unable to give information to the mental health service about the consumer, whether or not they are seeking information in return. This leads to frustration and anger by families and carers regarding the treatment and care of the consumer and reduces the opportunity to aid the recovery of the consumer and prevent further relapses in illness. This can also entrench the rejection of the carer role or family input by a consumer into their care and treatment when valuable information can be provided to the mental health service.

(Carers Australia, National, Submission #276)

The essential feature which came through from carers in our research is that they be included as part of the treatment program. In order to maximise the health benefits of treatment, consumers and carers should be seen as key members of the treatment team. The issue of confidentiality is always a significant issue. However, if carers are engaged from the commencement of treatment then many of these confidentiality issues can be overcome. However, the desire and right of consumers to have certain facets of their story remain confidential must be respected.

(blueVoices, National, Submission #355)

6.9.6 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 indicate concerns about:

  • lack of rehabilitation programs and recovery services;
  • lack of promotion, prevention and early intervention programs; and
  • lack of focus and early interventions to assist children and youth with mental illness or mental health problems.

6.9.6.1 Lack of rehabilitation programs and recovery services

Standard 6.1 states: 'The MHS has policy, resources and plans that support mental health promotion, prevention of mental disorders and mental health problems, early detection and intervention' and Standard 6.8 states 'the MHS ensures that the consumer has access to rehabilitation programs which aim to minimise psychiatric disability and prevent relapse'.

Rehabilitation programs are acknowledged as a critical step in the reintegration process back into full life after a period of illness and the prevention of relapse for many people with mental illness. Such programs would include living skills programs, respite and social programs. Concern was expressed that the mental health system has not placed sufficient emphasis on developing rehabilitation programs or other programs to prevent relapse or promote recovery and instead has focussed on acute services for consumers who have reached crisis point:

Rehabilitative and recovery services are poorly developed for people with a mental illness with few exceptions. The regaining of social and life skills following an episode of mental illness or psychosis is essential to aid recovery and has the potential to avoid continuing illness and over reliance on acute systems. Rehabilitative and on-going support services for those with an enduring mental illness will reduce the incidence of acute episodes of illness and provide individuals with hope and a pathway to recovery.

(Mental Illness Fellowship of Australia, National, Submission #331)

6.9.6.2 Lack of promotion, prevention and early intervention programs

The Australian Infant, Child, Adolescent and Family Mental Health Association expressed serious concern about the lack of programs and preventive focus in the delivery of mental health services, despite the emphasis of such an approach in Standards 6.4, 6.5 and 6.6 and the development of the National Action Plan for Promotion Prevention and Early Intervention for Mental Health 2000.

In particular, this submission as well as one from Drug Free Australia highlighted the need for programs providing treatment and support services to intervene at the earliest possible moment to prevent deteriorating illness, prevent problems from becoming entrenched and minimising impact:

Promotion, Prevention and Early Intervention (PPEI) Framework. The promotion of mental health, prevention of mental health problems and disorders, and early intervention are key approaches for ensuring health, well being and social inclusion in adult life. Investment within a PPEI framework is critical and should span the period prior to conception and encapsulate childhood and adolescence. "Where effective treatments and interventions are available, intervening in the early stages, when difficulties of symptoms first start to appear, can prevent problems from becoming entrenched and thereby minimise the impact of these problems or disorders on the lives of young people" (Raphael, 2000, Page 1)

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

In Australia, the National Action Plan for Promotion Prevention and Early Intervention for Mental Health 2000 outlines many evidence based programmes that could be implemented across the entire lifespan, yet many of these programmes have not been uniformly rolled out.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Surely, however, where it is possible, preventing such mental illness would be preferable. Particularly of concern must be those individuals whose mental illness is directly attributable to illicit drug use, the correlation is very strong indeed. Although I do believe the question needs to go back another level again regarding the causal triggers and not merely be distracted by the symptom.

(Drug Free Australia, National, Submission #74)

6.9.6.3 Lack of focus and early interventions to assist children and youth with mental illness or mental health problems

Standard 6.1 states: 'The MHS has policy, resources and plans that support mental health promotion, prevention of mental disorders and mental health problems, early detection and intervention' and Standard 6.2 states 'the MHS works collaboratively with health promotion units and other organisations to conduct and manage activities which promote mental health and prevent the onset of mental disorders and/or mental health problems across the lifespan'.

The availability of services to provide treatment for children and youth with mental illness or mental health problems is acknowledged as critical in terms of averting serious life repercussions. The Australian Infant, Child, Adolescent and Family Mental Health Association expressed concern about the lack of mental health services for children and adolescents and that access to adult services could not be considered as an appropriate alternative to fill the gap. The lack of funding and services for children and adolescents was noted as a significant failure by the mental heath service in their ability to identify and respond as early as possible (Standard 6.5), especially to vulnerable groups (for example, children of parents with mental illness, Indigenous youth, refugees, child abuse victims) (Standard 6.4) and to prevent negative life consequences:

Current research evidence emphasises the cost effectiveness of intervening in the early years. However the funding allocated to child and adolescent mental health does not currently reflect the proportion of the population comprising children and young people and is significantly less than funding allocated to adult services. There are also significant socioeconomic inequalities in infant, child and adolescent mental health, including inequities in accessing services.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Effective mental health promotion, prevention and early intervention strategies targeting children and young people involve a range of stakeholders and settings that are different to those for the adult population. Environments and systems play an important role in child and adolescent mental health and include schools, childcare settings, child protection agencies and youth services. Parents play a critical role in children and young people's mental health and in the treatment of mental health problems and disorders.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Mental health problems and disorders in children and young people left untreated can have far-reaching and long-term implications for the individual and the community as a whole. Insufficient appropriate interventions impacts on children's and young people's social, academic and emotional development and can create instability in their families (Rutgers University, US Dept of Health and Human Services & Annie E Casey Foundation, 2002). Sawyer et al (2000) in the National Survey also found that children and young people with mental health problems and disorders reported a lower quality of life.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Certain populations of children and young people have been identified as having a greater risk of developing mental health problems than their peers (e.g. children of parents with a mental illness, indigenous youth, refugees).

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

AICAFMHA recognises that within the infant, child and adolescent population there are particular subgroups that have special needs or may be more at risk due to family or environmental factors. An effective mental health service system needs to consider and accommodate these 'at risk' groups.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

A subgroup of the infant, child and adolescent population is children of parents with a mental illness. This group of children and young people present a special challenge for services as they themselves will not necessarily access or require a mental health service. They do however have particular needs around support, respite, information and protection, as identified within the National Practice Standards for the Mental Health Workforce, 2003 (Commonwealth Department of Health and Ageing, 2002) and the Principles and Actions for Services and People Working With Children of Parents with A Mental Illness (AICAFMHA, 2004).

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Suicide is the leading cause of death in young people. Child abuse victims represent a high percentage of those with suicidal ideation and attempts, successful and otherwise - independent of age.

(Advocates for Survivors of Child Abuse, National, Submission #262)

SANE Australia highlighted the following prevention and early intervention programs for children and adolescents:

While our mental health system is in crisis, a number of positive initiatives by the Australian government deserve acknowledgement. Examples of praiseworthy individual programs include:...Mental Health Matters. An excellent school-based education program on mental health issues being implemented nationally. Other positive initiatives supported include the COPMI (Children of Parents with a Mental Illness) project and associated programs, beyondblue - the national depression initiative, and the Mental Health First Aid program developed at the ANU Centre for Mental Health Research.

(SANE Australia, National, Submission #302)

6.9.7 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.

SANE Australia commented on the need for services for Indigenous people:

Services for indigenous people: Community-based mental health services are especially important to indigenous Australians in urban as well as rural and remote areas for a range of reasons - cultural, geographic, socio-economic and relating to general health status. Mental health services around the country can also learn from indigenous services in terms of treating 'the whole person' not just immediate symptoms. The SANE Mental Health Report recommends adequately-funded, culturally-appropriate indigenous community mental health services be established in all States and Territories.

(SANE Australia, National, Submission #302)

6.9.8 STANDARD 8: INTEGRATION

6.9.8.1 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 indicate concerns about the transition from adolescent to adult mental health services.

6.9.8.1.1 Problems with the transition from adolescent to adult mental health services

Standard 8.1.5 states: 'The MHS has documented policies and procedures which are used to promote continuity of care across programs, sites, other services and lifespan' and 'has specified procedures to facilitate and review internal and external referral processes within the programs of the MHS'. Performance is to be monitored and data collected is to be utilised to improve performance and quality.

Not only were concerns raised at the scarcity of services for children and youth, but concerns were also raised with regards to the continuity of care between adolescent and adult mental health services and the need for greater flexibility in policies and procedures:

AICAFMHA [The Australian Infant, Child, Adolescent and Family Mental Health Association] also believes that reliance on age as a sole criterion for transitioning between child and adolescent and adult services is inappropriate and that some flexibility be built into state run services to enable appropriate transitions. This is particularly the case for young people in the 16-18 year age range.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

6.9.8.2 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.

No submissions or comments were received pertaining to this Standard.

6.9.8.3 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 indicate concerns about:

  • the need for whole-of-government approaches to assist consumers;
  • lack of integrated and coordinated services for children and adolescents, including child refugees;
  • whole of government approach needed to tackle mental health problems and drug use;
  • the need for whole-of-government approaches to care for children who have been made wards of the state;
  • training and support for General Practitioners;
  • lack of support from Centrelink; and
  • national legislative reform of anti-discrimination legislation to cover vilification and harassment
6.9.8.3.1 The need for whole-of-government approaches to assist consumers

Mental Illness Fellowship of Australia expressed concern regarding the lack of integrated service delivery and a 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. This was identified as resulting in an over-representation of people with mental illness among the homeless and in the criminal justice system.

The lack of adequate integrated and coordinated support at the earliest possible moment was also seen to result in negative life consequences for consumers and their families resulting in increased reliance on justice, drug and alcohol, housing, welfare and health systems and sometimes ending in suicide. The need for broader governmental approaches and reform of services was seen as necessary to protect and promote the rights of people with mental illness and avert deteriorating mental health and negative life outcomes as indicated by the following quotes:

People with a mental illness and long term disability resulting from such illness impact heavily on the justice, drug and alcohol, housing and welfare systems as well as the health system. The failure to provide adequate support services has resulted in an overrepresentation of people with a mental illness among the homeless and in the criminal justice system. MIFA calls for structural reform of services, which incorporates a whole of government approach to address the structural impediments and the failure to provide sufficient support systems to address the overrepresentation.

(Mental Illness Fellowship of Australia, National, Submission #331)

Dr Richard Matthews, Chief Executive Officer of the NSW Corrective Health Service gave evidence in 2002 to a House Representative Committee that 90.1% of women on reception in NSW have some form of mental illness or disorder as do 78.2% of men. On substance abuse he reported that compared to 2.8% in the general community, 74.5% of women on reception in NSW corrective institutions are dependent on or abuse alcohol or another drug. For men the figures are 7.1% and 63.3%. The drugs concerned are interesting. 20.5% of the men were dependent on or abused cannabis, 35.2 % on an opioid, 11.9% on a sedative, 30.8% on a stimulant and 22.4% on alcohol. The levels of dependency or abuse by women was much higher for all categories of drug.

(Families and Friends for Drug Law Reform, National, Submission #336)

It is evident that prisons have become receptacles for people with a mental illness or disorder or substance dependence. What is more, the existence of a mental illness or disorder and substance dependence are not independent factors associated with imprisonment. The coexistence of substance abuse, including abuse of alcohol, with other mental illness or disorders dramatically increases the risk of offending behaviour. Whatever the myth, schizophrenia is not particularly associated with violence or other offending behaviour. It is substance abuse that makes a difference. This is shown in a survey of the literature by Dr Paul Mullen, clinical director of the Victorian Institute of Forensic Mental Health and Professor of Forensic Psychiatry at Monash University (Mullen 2001).

(Families and Friends for Drug Law Reform, National, Submission #336)

Another recently published Victorian study found that if a person had schizophrenia their chances of attracting a criminal conviction was 11.7%. If they had schizophrenia and a substance use disorder their chance of obtaining a criminal conviction rose to 68.1% (Wallace et al. 2004, 721).

(Families and Friends for Drug Law Reform, National, Submission #336)

There are no coherent national strategies covering key issues such as dual diagnosis, rehabilitation, supported accommodation, education and training for family and other carers.

(SANE Australia, National, Submission #302)

Suicide Prevention Strategy. The Australian government takes this issue seriously, with establishment of a National Advisory Council and funding of a wide range of programs. It still needs to publicly acknowledge, however, that provision of adequate mental health services is essential to reducing suicide rates.

(SANE Australia, National, Submission #302)
6.9.8.3.2 Lack of integrated and coordinated services for children and adolescents, including child refugees

Standard 8.3.2 states: 'The MHS supports its staff, consumers and carers in their involvement with other agencies wherever possible and appropriate'. Support may be in the form of referral, sharing of resources, sharing of expertise to agencies like Department of Housing, Disability Services, CES, Police Services, schools, Commonwealth Rehabilitation Services and Court Liaison Services.

However, concern was expressed regarding the paucity of services and lack of 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. Specifically, children of parents who misuse drugs, children who are exposed to domestic violence and child refugees were particularly noted as being a vulnerable group requiring coordinated service delivery for identification and provision of appropriate treatment and support services. The Australian Infant, Child, Adolescent and Family Mental Health Association reported the growing number of children and adolescents requiring treatment and support indicating that integration with other sectors would be vital to ensure specialised and coordinated care:

In Australia surveys indicate that between 14 - 18% of children and young people experience mental health problems of clinical significance. This equates to in excess of 500 000 individuals nationally. These findings are comparable with findings internationally.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Recent evidence compiled by the World Health Organization (WHO) indicates that by the year 2020, childhood neuropsychiatric disorders will rise by over 50 percent internationally to become one of the five most common causes of morbidity, mortality, and disability among children. These childhood mental disorders impose enormous burdens and can have intergenerational consequences. They reduce the quality of children's lives and diminish their productivity later in life. No other illnesses damage so many children so seriously.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Two landmark Australian studies undertaken relatively recently are the Child and Adolescent Component of the National Survey of Mental Health and Wellbeing (Sawyer et al., 2000) and the Western Australian Child Health Survey: Developing Health and Wellbeing in the Nineties (Zubrick et al, 1995). These surveys indicate that between 14 - 18% of children and young people experience mental health problems of clinical significance. This equates to in excess of 500 000 individuals nationally. These findings are comparable with findings internationally.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

The adverse consequences for children with parents who misuse drugs are typically multiple and cumulative and will vary according to the child's stage of development. They include a wide range of emotional, cognitive, behavioural and other psychological problems. (Hidden Harm: UK Advisory Council on the Misuse of Drugs, 2003, p.2)

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Children who are exposed to domestic violence are also at high risk.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

There is an increasing body of literature surrounding the effects of re-location on the mental health of children and youth, particularly those as refugees. The Professional Alliance For The Health Of Asylum Seekers And Their Children Submission to the HREOC Inquiry (2002) states "Current practices of detention of infants and children are having immediate, and are likely to have longer-term, effects on their development and their psychological and emotional health." The submission goes on to note that "in young children, disruptions of attachment relationships, such as removal from a primary carer or multiple changes of carer, are severe stressors and may produce immediate symptoms of distress and behavioural disturbance." The absence or limited availability of mental health services for these infants, children and adolescents compounds the issue for these families.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)
6.9.8.3.3 Whole of government approach needed to tackle mental health problems and drug use

Families and Friends for Drug Law Reform expressed concern that 'the overlap of the problems of mental health and drug abuse is falling between stools' and that the National Mental Health Plan and Drug Strategy are failing to address the links and problems in a meaningful way. The need for a coordinated and integrated approach was identified as vital as current strategies and plans are only paying lip service to the ideals while the situation is worsening:

...the current National Mental Health Plan and Drug Strategy. These peak policy documents fail in any meaningful way to address the links between mental health and illicit drug substance abuse. The National Mental Health Plan 2003-2008 passes responsibility for drug and alcohol problems to the national drug strategy. The National Drug Strategy: Australia's integrated framework 2004-2009 makes the platitudinous point that there should be strong partnerships with the treatment services and integration of policies and programs.

(Families and Friends for Drug Law Reform, National, Submission #336)

...the inquiry needs to look at the negative impacts on mental health of existing drug policy responses. It is not enough to point to the obvious correlation between illicit drug use and mental illness or disorders and observe that there would be less mental illness or disorders if there was less such use. A recommendation that ignores the impact of existing responses and urges intensification of those responses will only intensify the mental health crisis that so many families are going through.

(Families and Friends for Drug Law Reform, National, Submission #336)

In this submission Families and Friends for Drug Law Reform is calling on the Commission and Council to examine the link with mental illness or disorders of both illicit drugs and the measures taken in accordance with existing drug policy against those drugs. The evidence is there that the worsening crisis in mental health is largely contributed by this link. The demand for treatments and services is continuing to outstrip what is available. The suffering of those with mental health problems and their families intensifies.

(Families and Friends for Drug Law Reform, National, Submission #336)

Federally, the overlap of the problems of mental health and drug abuse is falling between stools. The National Mental Health Plan 2003-2008 shoves responsibility for drug and alcohol problems to the national drug strategy. For example, it states that: "In Australia, drug and alcohol problems are primarily the responsibility of the drug and alcohol service system and have a separate, but linked, national strategy" (AHM 2003, 5 &, similarly, 36).

(Families and Friends for Drug Law Reform, National, Submission #336)

The current National Drug Strategy 2004 -2009 subtitled Australia 's integrated framework states the platitude that mental health and drug services should work together:

•  "During this phase of the National Drug Strategy, action will be taken to ...build strong partnerships between drug treatment services and mental health services to enhance responses to co-existing drug and mental health problems" (Ministerial Council on Drug Strategy, 2004, 7)

•  and that "policies and programs" under the strategies be "integrated":

•  "There will also be integration between the National Drug Strategy and other relevant strategies, for example, the National Supply Reduction Strategy for Illicit Drugs, the National Hepatitis C and National HIV/AIDS Strategies, the National Mental Health Strategy, the National Suicide Prevention Strategy, and the Aboriginal and Torres Strait Islander Peoples Complementary Action Plan. Such integration will ensure relevant trends in these areas are incorporated in the development of policies and programs under the National Drug Strategy" (Ministerial Council on Drug Strategy 2004, 11)

(Families and Friends for Drug Law Reform, National, Submission #336)

This examination of the various links between mental health and abuse of illicit substances should not lead to a defeatist conclusion that treating effectively and humanely those with comorbid conditions is incompatible with policies that effectively reduce supply of dangerous drugs to young people. The Commission and Council, therefore, should consider what measures can reasonably be expected to make dangerous drugs associated with a mental illness or disorder less available.

(Families and Friends for Drug Law Reform, National, Submission #336)

After considering the negative impacts of current illicit drug policy on mental health, this submission examines three main obstacles to securing improvement. These is, firstly, a moral belief of dominating influence, though probably not widely shared, that overcoming addiction should take precedence over all other issues. Secondly, there is a fear that existing policies, whatever their negative effect, have worked to make dangerous drugs less available. In fact the net effect of existing policies is most probably to promote the distribution of illicit drugs among vulnerable populations. The third obstacle examined is the failure to be guided by the best available evidence in formulating measures to give effect to drug policy.

(Families and Friends for Drug Law Reform, National, Submission #336)

The absolutist view that addiction is the paramount evil is also inconsistent with the values reflected in human rights instruments.

(Families and Friends for Drug Law Reform, National, Submission #336)

Given the recognised links that exist between measures taken to implement existing drug policies and poor physical and mental health, aspects of such policies would seem to be inconsistent with art. 12 of the International Covenant on Economic and Social Rights which obliges parties to "recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health" and to take steps necessary for "the creation of conditions which would assure to all[,] medical services and medical attention in the event of sickness." Even more explicit provisions are found in art. 24 of the Convention on the Rights of the Child. It refers to "the enjoyment of the highest attainable standards of health and to facilities for the treatment of illness and rehabilitation of health". Drug policy bears heavily on children because a high proportion of children use illicit drugs. The 1999 national survey of secondary students found that 50% of 17-year-olds had used cannabis at least once and 12% used it weekly (White 2001). Over the years drugs have become more and more available to young people and more and more are using at a younger age.

(Families and Friends for Drug Law Reform, National, Submission #336)
6.9.8.3.4 The need for whole-of-government approaches to care for children who have been made wards of the state

One submission highlighted the need for the Government to adequately care, through a whole-of-government approach, for those children and adolescents placed in the State's care as this group of children have been identified as having higher rates of mental health problems and severe and enduring mental illness:

Research shows that more children under the care of the State ("looked after children") have mental health problems than other young people, including severe and enduring mental illness. (The Mental Health of Looked After Children, UK 2001 p. 2)

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)
6.9.8.3.5 Training and support for General Practitioners

Concern was expressed by blueVoices and SANE Australia about the variability in availability and quality of treatment and support provided by General Practitioners across Australia. The need to increase accessibility to non-pharmacological treatments, either provided by training general practitioners or via referrals from general practitioners to psychologists under the Better Outcomes in Mental Health Care initiative, was also noted. In particular, SANE Australia noted that limitations on referrals to psychologists under Medicare, with the number of sessions limited to five and those with 'complex and chronic' mental illness. This would assist with early intervention and rehabilitation and recovery.

As has been recorded elsewhere, the majority of people who seek help for mental health problems do so through General Practice. The standard of General Practice has been reported as extremely variable with many practices not appearing to be particularly interested in caring for persons with a mental illness.

(blueVoices, National, Submission #355)

The Better Outcomes in Mental Health Care initiative would appear to have enhanced treatment for some persons, but it remains deficit in many areas of the country.

(blueVoices, National, Submission #355)

Recommendation: That a range of subsidised non-pharmacological interventions be made through General Practices to assist persons with Anxiety and Depression.

(blueVoices, National, Submission #355)

While our mental health system is in crisis, a number of positive initiatives by the Australian government deserve acknowledgement. Examples of praiseworthy individual programs include:

•  Better Outcomes for Mental Health. Twenty-five per cent of GP surgeries now have a doctor trained to provide mental health care (40% in rural areas).

•  Medicare Plus. GPs can now refer people to a psychologist under Medicare - while welcome in principle, this is still only for those with 'complex, chronic needs' and limited to five sessions.

(SANE Australia , National, Submission #302)
6.9.8.3.6 Lack of support from Centrelink

With limited access to mental health services, supported accommodation and access to early intervention treatment and support, the burden on families and carers to provide long-term and crisis support is immense. This often impacts on the financial income of the family by a reduced ability of carers to work. The shifting of care by governments to carers fails to recognise that carers are providing a significant service, the expense of which is not being shouldered by the community. Concerns were raised with regard to the financial hardship experienced by carers due to the lack of services in the community to provide appropriate treatment and support to people with mental illness and/or mental health problems:

There needs to be a significant recognition of the role of carers in assisting consumers in recovery and the significant financial hardship which some carers face through offering care needs to be recognised. Recommendation: That the Government review its approach in offering financial assistance to carers and that non-financial support for carers such as respite becomes readily available.

(blueVoices, National, Submission #355)
6.9.8.3.7 National legislative reform of anti-discrimination legislation to cover vilification and harassment

SANE Australia raised concern that anti-discrimination legislation needs to be amended to ensure that people with mental illness are protected against vilification and harassment. Currently, Tasmania is the only state to offer such protection.

In most parts of Australia it is unlawful under anti-discrimination Acts to vilify people on the grounds of race, religion, sexuality or gender identity. In NSW it is also unlawful to vilify people with HIV/AIDS. Under current Australian legislation, however (apart from Tasmania), people with a psychiatric or other disability do not enjoy this protection. It is totally unacceptable that vilifying the mentally ill remains a legal activity in mainland Australia.

(SANE Australia, National, Submission #302)

Anti-discrimination legislation excludes people with a psychiatric or other disability from protection against vilification and harassment (Tasmania excepted) ...[Report recommendation] Legislative change at Federal and State levels to outlaw vilification and harassment of people with a psychiatric or other disability.

(SANE Australia, National, Submission #302)

6.9.9 STANDARD 9: SERVICE DEVELOPMENT

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

The National Mental Health Strategy is in retreat on many fronts, with old-style psychiatric institutions still in place, community-based services being drawn back into hospitals, prison psychiatric units being built instead of discrete forensic hospitals, and prisons becoming de facto psychiatric institutions.

(SANE Australia, National, Submission #302)

Under this Standard, submissions indicate concerns about:

  • the current state of mental health services in Australia;
  • loss of direction and lack of leadership and vision;
  • the need for a national audit of mental health services;
  • lack of community-based services and the crisis care model;
  • re-institutionalisation: rising rates of people with mental illness in prisons and the transfer of community based care back to hospital settings;
  • quality of care;
  • inadequate funding;
  • shortage of mental health professionals;
  • staff attitudes - need for training;
  • care for children of parents with mental illness and families neglected;
  • public versus private sector - problems with access to care, type of care and affordability;
  • affordability and health insurance;
  • Pharmaceutical Benefits Scheme;
  • care for children of parents with mental illness and families neglected;
  • service development and increased funding for child and adolescent services urgently required;
  • the need for more research; and
  • accountability and quality improvement.

6.9.9.1 Current state of service delivery in Australia

Concern was expressed that since the Burdekin Report and the closure of institutions and promise of community care, the requisite treatment and support services have not materialised, resulting in inadequate services and a 'system lacking the basic ability to meet the needs of people with mental illness'. The following quotes highlight these problems:

MIFA has raised concerns with government about the inadequacy and imbalance in mental health services in Australia and the neglect experienced by many Australians as a consequence. Failure to address the structural and endemic problems of mental illness in Australian society is contributing to continued suffering by people with mental illness and those who care for them.

(Mental Illness Fellowship of Australia, National, Submission #331)

Since the National Mental Health Policy was signed by the Australian Health Ministers in 1992 to deinstitutionalise mental health care and move treatment of mental illness to a community based system, the community has had to attempt to establish some system of care with insufficient funding resulting in a system lacking the basic ability to meet the needs of people with mental illness. In an interview between the Hon Peter Costello MP and Alan Jones on 23 September 2004, the Treasurer openly admitted in relation to this policy of moving treatment into the community 'I don't think that policy has been a great success'.

(Carers Australia, National, Submission #276)

It must be recognised that a mental health system which does not meet the needs of consumers or provide basic human rights to treatment for mental illness, also has a severe and unrelenting impact on the families and carers of the consumer.

(Carers Australia, National, Submission #276)

We feel it is imperative that we bring the subject if mental illness into the political arena particularly now, since in our opinion, in our opinion, mental health no longer appears to be a high priority on any political parties agenda. It is crucial that all politicians of all political parties are aware of this situation and take active steps to address this issue.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

The extensive impact of mental illness in Australia is also reflected in joint research by the MHCA and The Australian Foundation for Mental Health Research, ANU in their publication 'Mental illness: every family in Australia is at risk'. In this publication it is reported that approximately one in five people in Australia will experience mental illness each year and that 'two-thirds of all disability in people aged 15-30 is caused by mental illnesses'. The report notes, significantly, that 3.1 million people are affected by mental illness each year and approximately 62% of these people do not receive treatment for their illness. This leaves approximately 1.9 million untreated people each year either in the care of family and friends, or left to deal with their illness on their own.

(Carers Australia, National, Submission #276)

The Carers of People with Mental Illness Project, completed through a partnership between Carers Australia (known as Carers Association of Australia Inc at the time of publication) and the Mental Health Council of Australia had the aim to identify actions to better support and recognise carers of people with mental illness in Australia. It was revealed in the final report of the project that 'individual carers on average contribute 104 hours per week caring for a person with mental illness' and 'that it is primarily [unpaid] carers who are sustaining the fabric and operational effectiveness of mental health service systems across Australia'. The report also identified that carers of people with mental illness 'are experiencing undue responsibilities and pressures in their caring roles due to significant gaps or inadequate practice in formal consumer mental health service delivery'. This was reflected recently by stories told in the ACT consultation by HREOC and the MHCA, when families presented tragic situations of being ignored by the mental health service when trying to seek help and provide information to the service, being unable to obtain support from crisis teams in emergency situations and ultimately bearing the guilt and overwhelming helplessness when the consumer took their own life.

(Carers Australia, National, Submission #276)

Australia's National Mental Health Strategy is in disarray and in urgent need of reform: in leadership, additional funding and delivery of services

(SANE Australia, National, Submission #302)

The first SANE Mental Health Report, released in 2002, found Australia's mental health system far from 'reasonable' - close to collapse, and urgently in need of revitalisation and additional resources in order to do its job. Since that date there have been at least six major inquiries into mental health services in Australia [Mental Health Council of Australia: Out of Hospital, Out of MindReport; NT - Department of Health and Community Services: Bansemer Review; SA - Ombudsman: Inquiry into Treatment of Mental Health Patients; Victorian Auditor General: Mental Health Services for People in Crisis; NSW Legislative Council: Inquiry into Mental Health Services'; WA - Legislative Council: Inquiry into Mental Health Services]. All of these have uncovered gross underfunding and mismanagement, confirming the first SANE Mental Health Report's conclusions. The plethora of inquiries in a two-year period provides clear proof that this is not simply a State or Territory-specific issue, but that Australia's mental health system is dysfunctional at a national level. The 2004 SANE Mental Health Report finds that the National Mental Health Strategy is in crisis, with services in disarray and in need of urgent reform.

(SANE Australia, National, Submission #302)

6.9.9.2 Loss of direction and lack of leadership and vision

SANE Australia expressed concern that stigma surrounding mental illness is also having an impact on politicians and the prioritisation of mental health within the political arena. SANE Australia commented that the mental health system has lost direction and is working in an ad hoc manner that is inconsistent with the aims and strategies enshrined in the National Mental Health Strategy and needs to refocus:

Stigma is systemic in decision-making at the highest political levels. Ultimate responsibility for mental health services lies with government leaders at Federal and State levels. It is they who have ensured these services have had such a low priority in policy-making and funding. Federal government has a national responsibility to challenge this institutionalised stigma and lead reform, as it did in the early 1990s.

(SANE Australia, National, Submission #302)

Lack of direction. Health Minister, Tony Abbott, has shown disappointing lack of interest and leadership in this area. There is no longer a Branch dedicated solely to Mental Health in his Department, he has delegated the issue to his Parliamentary Secretary and failed to acknowledge that the crisis in mental health services requires any action from him. From January 2004 up to the Federal Election in October, Hansard shows he spoke over 400 times in Parliament; in all this time he mentioned mental health services just once, in answer to a question.

(SANE Australia, National, Submission #302)

[Report recommendation] Leadership by the Australian government of all States and Territories in reform of the National Mental Health Strategy to focus on:

•  closure of all psychiatric institutions, and properly-funded implementation of community-based care for all those in need

•  national strategies for early intervention, dual diagnosis, and treatment of borderline personality disorder

•  Medicare-funded access to psychological treatments provided by clinical psychologists

•  forensic mental health services to replace prison psychiatric units

•  urgent action to recruit and retain mental health professionals

•  genuine involvement of consumers and carers in planning services.

(SANE Australia , National, Submission #302)

6.9.9.3 The need for a national audit of mental health services

The Mental Illness Fellowship of Australia expressed concern regarding the service inequities between states and territories. It was suggested that a national audit was required to determine compliance with agreed national strategies and targets and assist with service delivery and planing and ensuring equality across Australia:

MIFA (Mental Illness Fellowship of Australia) has called on government for a national audit of services across states and territories. The gross service inequities between states - evident in many reports and in verbal feedback from consumers and carers - is evidence of failure by a number of states to comply with agreed national strategies. These inequities could be exposed and highlighted by an national audit of state and territory compliance with national targets for mental health.

(Mental Illness Fellowship of Australia, National, Submission #331)

6.9.9.4 Lack of community-based services and the crisis care model

Concern was expressed that due to the lack of community based treatment and support services, including early intervention and rehabilitation, people with mental illness must wait for their mental health to deteriorate to a point where acute care is necessary. Additionally, due to the demand for such care and the lack of beds, early discharge and the lack of rehabilitation programs, a system of 'revolving door' admissions is perpetuated.

The crisis model as the basis for the planning and delivery of treatment and support services is seen as failing to promote or protect the rights of people with mental illness or those of their families and carers, and as indicated by the Mental Illness Fellowship of Australia, is considered a more costly model for the health system. Carers Australia also expressed concern that this model relies on the burden of care being shifted to carers without adequate recognition or support for their role. The following quotes describe the situation:

A constant catch-cry in feedback is the lack of community services. Failure to provide adequate community services perpetuates a revolving door outcome for the acute sector. There are numerous studies which demonstrate that well-structured community and support services are cost-saving to the health system in the long term.

(Mental Illness Fellowship of Australia, National, Submission #331)

[Report recommendation] Implementation of evidence-based, recovery-focused rehabilitation, supported accommodation and employment services for people affected by mental illness, as well as education, training and support for family and other carers through coherent national strategies and provided by non-government organisations.

(SANE Australia, National, Submission #302)

What this information does not reflect is where the burden of care rests, when the community-based system of care fails to provide adequate care to persons with mental illness. The answer in many cases is the hidden workforce of the mental health sector, the carers and families of the person with mental illness. This is in stark contrast to the second aim of the National Mental Health Policy 'to reduce the impact of mental disorders on individuals, families and the community'.

(Carers Australia, National, Submission #276)

Mental illness has the potential to impact every family in Australia at some stage. With mental illness representing approximately 20% overall disease burden in Australia, the contribution that carers already make in mental health care is enormous, saving the government and communities economically in the short term. However, the continued lack of professional treatment and available support services in mental health can only result in an increase in the cost of this disease to the government in the future and increased pressure on the families and carers of people with mental illness. In reviewing the provision of mental health care in Australia, the significant impact on the families and carers of a person with mental illness must also be counted.

(Carers Australia, National, Submission #276)

6.9.9.5 Re-institutionalisation: rising rates of people with mental illness in prisons and the transfer of community based care back to hospital settings

SANE Australia expressed concern regarding recent decisions to relocate some community based services to hospital sites, primarily for financial reasons. It was suggested that this effectively "re-institutionalises" services and works against all the aims of community based service delivery.

The increasing rate of incarceration of people with mental illness is also suggested as another form of "re-institutionalisation". This pattern will undermine stigma reduction campaigns and do little to assist with access to a variety of treatment and support services in the community or the promotion of the rights of people with mental illness to participate socially and economically.

Re-institutionalisation. The National Mental Health Strategy was launched in 1992 to transfer services from an institutional to a community setting. After 12 years, four of the five mainland States still have standalone psychiatric hospitals! These institutions continue to soak up around $420 million a year - 14% of the entire cost of mental health services of around $3 billion per annum. In several States, community-based services are being withdrawn onto hospital grounds to make short-term savings. Prisons are also becoming de facto psychiatric institutions - in NSW, for example, 46% of inmates at reception have a mental disorder, and the prevalence of psychosis is 30 times greater than the norm.

(SANE Australia, National, Submission #302)

Re-institutionalisation: The pulling back of 'community services' into hospitals is an increasingly popular short-term cost saving measure which contributes to de facto reinstitutionalisation of mental health care in Australia. The SANE Mental Health Report recommends immediate comprehensive implementation of genuine community-based clinical services.

(SANE Australia, National, Submission #302)

6.9.9.6 Concerns about the quality of care

Associated with the concerns expressed elsewhere in this report regarding the lack of services, staff and funding, were concerns regarding the quality of those services which are operating.

Service delivery = Crisis management. Despite carefully non-specific language in policy documents about 'quality of care', ordinary Australians - as this Report [Dare to Care! SANE Mental Health Report 2004] shows - daily endure the distress of inadequate services.

(SANE Australia, National, Submission #302)

Mental health services are in crisis to varying degrees all around Australia, barely able to cope with people experiencing acute episodes of illness, let alone provide ongoing treatment and support.

(SANE Australia, National, Submission #302)

The standards of service vary from adequate to excellent in the major cities around this country, to almost nothing existing in rural Australia. When services can be accessed, the issue of the quality of the service offered has caused us some concern.

(blueVoices, National, Submission #355)

6.9.9.7 Inadequate funding

Associated with the complaints of lack of community based services, are requests and demands that the level and control of funding needs to change in order that appropriate services are delivered and the rights of people with mental illness are protected. Funding issues were raised both with regard to Federal Government contributions to the health budget and the provision of support services for people with mental illness and their families and carers:

...the issue of inadequate funding to mental health services is a major concern. Compared to other OECD [Organisation for Economic Co-operation and Development] countries Australia is falling behind in the level of funds to mental health and the distribution of those funds. As an example New Zealand has increased their overall funding to mental health by 174% in nominal terms over the last decade and by 6.8% in the year 2002/2003. 28% of funds go to services provided by NGOs and 69% of funds are spent on community services with only 31% spent on in-patient services. Australia urgently needs to increase the overall funding to mental health in line with best practice in OECD countries and to avoid being classed as having a 'banana republic mental health system'.

(Mental Illness Fellowship of Australia, National, Submission #331)

Funding to meet the need for mental health services: Funding of mental health services is inadequate in all jurisdictions. The Australian government needs to take the lead in reforming the National Mental Health Strategy to 'bite the bullet' and tackle this at a national level. The SANE Mental Health Report recommends the Australian, State and Territory governments conduct a comprehensive review of funding mechanisms for mental health services and implement a coherent, national, population-based funding model to meet the urgent need for improved clinical and community support services.

(SANE Australia, National, Submission #302)

Underfunding in health services have too often led to a lack of effective treatment for our relatives.

(Carer, Anonymous, Submission #224)

Families who care for their relatives would also be able to function more effectively to reduce the costs on the national purse if more funds were made available to these services.

(Carer, Anonymous, Submission #224)

Unless Australia increases its mental health budget from 5 - 7% to at least 17%; as recommended by the WHO inadequacies will continue to plague the Mental Health System in years to come.

(Carer, Anonymous, Submission #224)

The prevalence of mental health problems and disorders in children and young people in Australia is significant and represents a large public health problem. AICAFMHA believes greater investment is required for infants, children, adolescents and their families within the mental health system.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Current research evidence emphasises the cost effectiveness of intervening in the early years. However the funding allocated to child and adolescent mental health does not currently reflect the proportion of the population comprising children and young people and is significantly less than funding allocated to adult services.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Within the mental health funding system there is a lack of equity in the way funds are divided, with the child and adolescent mental health services receiving approximately 7% of the mental health dollar to service 30% of the population.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Support for the non-government sector: Supported accommodation, rehabilitation, respite, employment support, help and training for carers ....all of these are just as important as clinical care yet receive minimal funding in most States. The SANE Mental Health Report recommends that the essential role of non-government organisations be recognised, and that they be adequately funded to provide supported accommodation and other services at a level which meets need in the community.

(SANE Australia, National, Submission #302)

[Report recommendation] An increase in the proportion of the health budget allocated to mental health services, from 8% to at least 12%.

(SANE Australia, National, Submission #302)

Despite the welcome increase in the mental health budget, almost all of this has gone to fund clinical services. Support for non-government organisations has increased too, but only accounts for around 5% of the budget.

(SANE Australia, National, Submission #302)

6.9.9.8 Shortage of mental health professionals

Associated with the lack of services are reports of an excessive demand for the services that exist, and reports that these services often had difficulties recruiting and retaining staff. The shortage of mental health nurses was particularly noted:

The shortage of psychiatric nurses and other mental health professionals is a major issue. Low recruitment and retention is due in part to perceived low status, inadequate training and extreme workloads.

•  Average age of a psychiatric nurse (2004) 46 years

•  % of nursing graduates entering mental health system 4%

The SANE Mental Health Report recommends that this workforce issue be urgently addressed at a national level.

(SANE Australia , National, Submission #302)

6.9.9.9 Staff attitudes - need for training

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

People with mental health disorders are at times treated as idiots. People who've been professionals and for whatever reason have gone "off the road" so to speak. Whether they've had a split from a relationship, have been in a severe accident or the like, there is a tendency for mental health staff to treat people such as this as stupid, when in reality they are often in agony yet still quite capable.

(Consumer, Anonymous, Submission #133)

In my experience I'd say there is a place for psychiatry, however a limited place. There are other ways and at times it's more healing to be away from mental health staff who have had such different lives and advantage compared to those who are seeking their help.

(Consumer, Anonymous, Submission #133)

I go one step further to suggest that it should be made mandatory for all health professionals working in the Mental Health System to attend Carer Support Group meetings as part of their training.

(Carer, Anonymous, Submission #224)

In many settings there appears to be no multi-disciplinary approach to care, and in some cases, the seeking of care can be further stigmatised by the attitudes of the treating mental health care professionals.

(blueVoices, National, Submission #355)

It is further recommended that all staff who work in Health Care facilities are educated around the impact of mental health care problems, and how to work with Consumers and Carers who are experiencing these problems.

(blueVoices, National, Submission #355)

In order to decrease stigmas [sic] in health care settings, a program be devised and implemented to educate staff at all levels on issues pertaining to mental health care. Attendance at these training courses must be compulsory and should be seen as part of the orientation of all staff to their position.

(blueVoices, National, Submission #355)

It is further recommended that the helping profession become well versed in the needs of carers in their role of care and support for consumers and that carers become seen as vital members of the health care team.

(blueVoices, National, Submission #355)

6.9.9.10 Public versus private sector - problems with access to care, type of care and affordability

The National Network for Private Psychiatric Sector Consumers and Carers outlined significant concerns regarding access and type of care in both the public and private sectors, affordability of care and concerns for the future:

The following issues are of grave concern to us ...A significant number of same-day hospital based psychiatry services require a co-payment to be met by the consumer, as the full cover of the services are not met by certain levels of cover offered by private health insurance funds. This effectively limits access to those services. If these co-payments increase, then some consumers will have to consider the option of dropping their private health insurance cover thus placing more strain on the public system. (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

The Private sector treats a significant number of Australians suffering from a mental illness or disorder and over 60% of people receive their treatment and care in a private sector setting. According to the Australian Institute of Health and Welfare, in 2002-2003, private hospitals provided 68% of all same-day mental health services, 43% of all hospital-based psychiatry services, and treated almost 100,000 consumers. Additionally, private hospitals provided 91% of all same-day alcohol use disorder and dependence services.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

We understand that no one system, public or private can do everything in health care, or for the significant number of people who receive treatment and care in a private sector setting. The private sector is however, striving to meet growing community expectations about access, safety, affordability, choice and equality.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

The following issues are of grave concern to us ... We hold concerns regarding the deregulation of the private health industry and the impact this may have on mental health consumers and carers. (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

We are indeed anxious to avoid the disastrous experiences of other countries, which in our view will only be achieved when the viability of the private mental health system in Australia is both sustained and improved.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

In particular, the maintenance of the private health insurance rebate, the integrity of the PBS [Pharmaceutical Benefits Scheme], and the availability of atypical antipsychotic medications are crucial to sustaining the viability of the private mental health system and the care it is able to deliver.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

6.9.9.11 Affordability and health insurance

The National Network for Private Psychiatric Sector Consumers and Carers expressed concern regarding the private health rebate, capping of services and the cost of private health insurance and the impact of these on access to care:

Maintaining the private health rebate - it is crucial to the ongoing viability of the private health insurance industry that the private health rebate be maintained to ensure private health insurance remains available to all Australians. (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

The following issues are of grave concern to us ...The integrity of private health insurance is based on choice - the current Minister for Health and Ageing has given a commitment that there will be no further "rule changes" to allow health funds to require people transferring from an existing health insurance fund to another on the same level of cover to serve a further waiting period of 12 months for psychiatric care. This commitment should be maintained by Federal Government. (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

Capping of services by some health funds is in direct contravention to good care. Are persons with an ongoing physical illness, such as kidney failure, penalised by having a cap placed on their service? (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

Some of the people we represent put the cost of health insurance before food and clothing, so that they can be treated in private sector settings.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

6.9.9.12 Pharmaceutical Benefits Scheme

The National Network for Private Psychiatric Sector Consumers and Carers expressed concern about any changes to the Pharmaceutical Benefits Scheme:

The following issues are of grave concern to us ...The integrity of the Pharmaceutical Benefits Schedule (PBS) must be maintained and the costs of medications must not be compromised. (author's emphasis)

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

6.9.9.13 Care for children of parents with mental illness and families neglected

The wide range of programmes recommended in the Burdekin report to meet children's and families' varying needs (e.g. during a parent's hospital admission, ongoing support after their discharge and a range of home based, centre-based, school based and community-based activities) are currently not available to children and families in any Australian State or Territory.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Concern was expressed by The Australian Infant, Child, Adolescent and Family Mental Health Association regarding the lack of coordinated and integrated services for children of parents with mental illness across Australia and that great disparity existed between various States and Territories. In addition to the lack of wide range of programs discussed in the quote above, problems with data collection procedures and interagency collaboration and planning were also mentioned:

It is through this aspect of AICAFMHA's work that we have become aware of vast discrepancies between jurisdictions in their response to the needs of children, parents and families affected by mental illness.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Despite the specific recommendations of the Burdekin report relating to children of parents with a mental illness (pages 927- 928), mental health services and professionals still do not consistently seek and record information about dependant children in cases where people present for treatment for a mental illness. As a result, the number of dependant children of people seeking mental health services in Australia remains unquantifiable.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

In most States and Territories government departments such as health, education, family services and community services do not cooperatively plan, develop, fund and implement services for parents affected by mental illness and their dependant children and in the States where this does occur, many of the programmes have short-term funding only.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Where government has allocated resources to non-government agencies to provide programs for children and family members where there is a mentally ill parent, this has also often been on a time-limited project basis only. In consultations with family members and service providers alike we have heard of successful programmes being discontinued, or being unavailable to people living outside of particular geographic areas or of applying restrictive age-limits for participants.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

The challenge for service providers across a range of jurisdictions remains the same as it was in 1993; to work together to promote mental health of these children, prevent problems occurring and intervene early when and if issues are identified. The 'Principles and Actions for Services and People Working with Children of Parents with a Mental Illness' document calls for service providers tostrengthen and support families and children to enhance protective factors that contribute to the parents' and children's mental health, and identify and reduce risk factors in parents with a mental illness, their family and community that contribute to their children's health, well-being and safety.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

6.9.9.14 Service development and increased funding for child and adolescent services urgently required

The Australian Infant, Child, Adolescent and Family Mental Health Association raised serious concerns about the scarcity of services, lack of funding and lack of planning to provide appropriate treatment and support services for children and adolescents with mental illness and/or mental health problems:

Current research evidence emphasises the cost effectiveness of intervening in the early years. However the funding allocated to child and adolescent mental health does not currently reflect the proportion of the population comprising children and young people and is significantly less than funding allocated to adult services. There are also significant socioeconomic inequalities in infant, child and adolescent mental health, including inequities in accessing services.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Recognition of Developmental Milestones and Specific Needs. Children are not small adults. They have particular emotional, social and physical needs that should be considered within a child focused developmental framework. Services should be designed specifically for children that work within this framework and addresses these specific needs

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

It should be noted that unlike adult mental health services where there is a higher need for inpatient beds, the majority of child and adolescent mental health problems can be treated effectively in community settings, including clinic-based and more intensive outreach models.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

In Australia, the majority of CAMHS [Child and Adolescent Mental Health Service] inpatient facilities have an age criteria of 0-18 years. AICAFMHA believes that state governments in the respective jurisdictions should seriously consider allowing flexibility with this upper age range and where appropriate allow a young person to continue to receive services from the child and adolescent focussed facility until they attain the age of 19 years.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

In a similar way AICAFMHA believes that adult mental health services also need to be able to exercise some flexibility to allow young people over the age of 16 years who are developmentally mature, early access to an adult mental health facility, in line with the criteria outlined by the Royal College of Psychiatrists. AICAFMHA recognises that this has funding implications and therefore further analysis of the number of young people that are likely to utilise these more flexible arrangements would need to be determined.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Specific services for young adults in the 18-25 age range, that takes into account their legal status as adults, should be developed to cater for young adults with early psychosis.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

The National Action Plan for Promotion, Prevention and Early Intervention for Mental Health 2000 identifies key locations for action in the early childhood and childhood years as "childcare settings, preschools, primary health care settings, community, sport and recreation settings, schools, child and family welfare services and mental health services". This document recognises the need to design interventions that are available and linked to the multiple environments that a child or young person may access. Building the capacity of these communities to respond appropriately and effectively to children and young people who may be experiencing mental health problems will enable delivery of the most effective intervention.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Most mental health problems experienced by children and young people can be effectively managed by community based services, in clinic-based and outreach models of care. Only a relatively small number of infants, children and young people require hospitalisation or access to hospital emergency departments for mental health problems.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

AICAFMHA supports the development and expansion of a system of care that addresses the needs of infants, children and young people along the developmental spectrum and across different service sectors. AICAFMHA also believes that wherever possible young people should be treated within the context of their family within a community setting.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

6.9.9.15 Need for more research

Standard 9.31 states: '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'. Concern was expressed that more funding needs to be allocated to research to potentially reduce demands on health and welfare services, improve treatment options and service delivery and identify causative factors:

Australia has contributed to groundbreaking research in the neurosciences. Adequate funding to enable Australia to continue such research is vital. Successful research outcomes have the potential to reduce demand on the health and welfare systems as improvements in treatments are realised and causative factors are identified.

(Mental Illness Fellowship of Australia, National, Submission #331)

A more targeted approach to guide research activities is required. For example, in the United States, the National Institute of Mental Health has established a blueprint for research priorities in the area of child and adolescent mental health (Hoagwood & Olin, 2002). This targeted approach to developing a clear research agenda would be an excellent action step to complement the broad statements made in this section.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Implicit in measuring progress is the need to ensure that indicators are appropriate across the lifespan. For example there would be little point in just asking child and adolescent mental health services to report on Primary Care with General Practitioners when an equal amount of their work should be with School Counsellors.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

6.9.9.16 Accountability and quality improvement

Standard 9.28 states: 'There is documented accountability for the evaluation of the MHS' and Standard 9.29 states that the service evaluation strategy should 'promote participation by staff, consumers, carers, other service providers and the defined community'. Consumer health outcomes are to be routinely monitored using a combination of accepted quantitative and qualitative methods (Standard 9.30).

However, concern was expressed that current systems to evaluate services, measure outcomes and ensure quality improvement for all consumers, including children and adolescents, are inadequate. SANE Australia suggested the establishment of a Mental Health Commission to monitor and report effectiveness of mental health services:

AICAFMHA strongly supports the need for accountability. It also supports the development of specific indicators for progress against the Mental Health Plan 2003-08. AICAFMHA recognises that the National Mental Health Report provides a comprehensive overview of mental health service activity in Australia, however this document is primarily focussed on the activities of adult mental health services.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

AICAFMHA supports commitment to community capacity building to enhance sustainability of effective mental health promotion, prevention and early intervention programs through a capable and supported worker base, enhanced by systems which identify and disseminate good practice within the existing mental health promotion framework.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

[Report recommendation] Establishment of a National Mental Health Commission to monitor and report on effectiveness of mental health services.

(SANE Australia, National, Submission #302)

6.9.10 STANDARD 10: DOCUMENTATION

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

No submissions or comments were received pertaining to this Standard.

6.9.11 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.

6.9.11.1 Access

The MHS is accessible to the defined community.

Under this Standard, submissions indicate concerns about the inability of consumers to access treatment and support services, even when in crisis.

6.9.11.1.1 Inability to access services, even when in crisis

Standard 11.1.2 states: 'The community to be served is defined, its needs regularly identified and services are planned and delivered to meet those needs and Standard 11.1.4 states: 'The MHS is available on a 24 hour basis, 7 days per week'.

Serious concern was expressed that not only are treatment and support services difficult to access when needed throughout the course of illness, but that access is also difficult even when consumers are experiencing a crisis or at risk of harm to self or others. One carer stated that her son had to be 'at deaths door' before access was granted and that access was difficult even though she could afford to pay for services if required:

Sadly it is too late for my son who died at the age of 30, 8 weeks ago. For ten years I tried to get help for him, but it seemed he had to be at deaths door for anyone to do anything. As a mother I knew how serious his condition was, but they just kept saying not bad enough. I found in all that time no support from the medical profession, even though I was better off then most people in that I could pay. It is tragic to just watch your child with mental pain, and drugs suffer and have no where to turn ...if it had been physical, cancer, a broken leg, I would have had as much care as I needed.

(Carer, Mother, National, Submission #164)

6.9.11.2 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.

6.9.11.3 Assessment and review

Consumers and their carers receive a comprehensive, timely and accurate assessment and a regular review of progress.

No submissions or comments were received pertaining to this Standard.

6.9.11.4 Treatment and support

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

Consumers and carers want treatments available that give them choice.

(blueVoices, National, Submission #355)

Under this Standard, submissions indicate concerns about:

  • lack of treatment and support services for people with dual diagnosis - mental illness and drug and alcohol problems;
  • problems with treatment and support services for people with mental illness in the criminal justice system;
  • lack of services for people with mental illness and/or mental health problems who have a hearing impairment;
  • lack of mental health services in rural and remote areas, especially for children and adolescents;
  • lack of appropriate treatment and support services for Indigenous people with mental illness and/or mental health problems;
  • lack of treatment and support for people diagnosed with Personality Disorders;
  • carers are not being heard or involved in the planning of treatment and support; and
  • lack of support services for families post-suicide.
6.9.11.4.1 Lack of treatment and support services for people with dual diagnosis - mental illness and drug and alcohol problems

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' including dual case management with alcohol and other drug services.

Concern was expressed that there are an insufficient number of services to provide treatment and support, either directly or in dual management with alcohol and other drug services, to people with mental illness and drug and alcohol problems. As the following quotes highlight, treatment and support services are struggling to cope with the demand and to work together, and an increasing number of consumers continuously 'fall between the gaps':

Drug dependency and mental illness or disorders work on each other. The difficulties flowing from one - the distress, economic hardship, stigma and shame - magnify the difficulties of the other. The scarcity and inadequacy of services for one are even more so for people with both conditions. The predicament of families known to Families and Friends for Drug Law Reform where a member is dependent on illicit drugs is often desperate. Their predicament is aggravated more than twofold where comorbidity with a mental illness or disorder is involved. The mental illness or disorder we refer to is over and above that of substance dependence that is regarded as a mental disorder (Ward et al. 1998, 419; FFDLR 2004, para. 6).

(Families and Friends for Drug Law Reform, National, Submission #336)

The co-occurrence of mental illness and substance abuse is a growing problem in services and creates a huge problem for carers. Close to two-thirds of all people admitted to the acute sector with a mental illness have a co-occurring substance use problem. Effective treatment regimes with a focus on rehabilitation provided in a collaborative model between mental health and drug and alcohol services is essential.

(Mental Illness Fellowship of Australia, National, Submission #331)

In order to cope with crises, scarce resources are being siphoned away from already chronically underfunded services providing low and medium level interventions - that is, from most cost effective to least cost effective interventions. Of course, this deprivation of resources from where needs are low or medium leads more people into crisis thus compounding the health, social and fiscal problems.

(Families and Friends for Drug Law Reform, National, Submission #336)

It is clear that much still needs to be done to "build strong partnerships" between treatment services but however well mental health and drug treatment services work together there is only so much that they can do. For one thing the demand on resources to fund the ever increasing demand for services is already becoming unsustainable. Therefore, an important focus of the Council's and Commission's inquiry should be how policies and programs should be integrated so as to minimise the distress that is already so evident of mental illness or disorders associated with drug abuse.

(Families and Friends for Drug Law Reform, National, Submission #336)

What is more, all the evidence points to a high and still increasing level of comorbid substance abuse and mental illness or disorders. "The use of illicit drugs such as cannabis and psychostimulants such as amphetamines and cocaine is ... higher amongst young adults with severe mental illness compared to either the general population or to other psychiatric comparison groups" (Baker et al. 2004, 155).

(Families and Friends for Drug Law Reform, National, Submission #336)

This is putting more pressure on the health system and families than they can bear.

(Families and Friends for Drug Law Reform, National, Submission #336)

"Hospital morbidity data show a dramatic rise in the number of psychotic disorders due to psychostimulant use from 200 in 1998-99, to 1,028 in 1999 -2000 and a further but smaller increase to 1,252 in 2000-01" (ibid., 156).

(Families and Friends for Drug Law Reform, National, Submission #336)
6.9.11.4.2 Problems with treatment and support services for people with mental illness in the criminal justice system

Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of treatment and support services which are, wherever possible, specialised in regard to ...consumers who are subject to the criminal justice system'.

Concern was expressed regarding the lack of separate facilities to provide treatment and support to people with mental illness or mental health problems who have become subject to the criminal justice system. In the absence of separate forensic facilities, housing of these consumers with the general prison population was described as an inappropriate environment in which to receive treatment and support:

It is reasonable to conclude that many with a mental illness or disorder find themselves in prison as a result of their drug problem. The prison environment is about the worst environment they could be in. Families and Friends for Drug Law Reform can do no better than quote the words of Professor Paul Mullen, Professor of Forensic Psychiatry at Monash University and Clinical Director of the Victorian Institute of Forensic Mental Health, which attest to this:

"The correctional culture and the physical realities of prisons are rarely conducive to therapy. Rigid routines, the pedantic enforcement of a plethora of minor rules, the denial of most of that which affirms our identity, add to the difficulties of managing vulnerable and disordered people. Separation and seclusion are all too often the response of correctional systems to troublesome prisoners, irrespective of whether those difficulties stem from bloody mindedness, distress, mental disorder or even suicidal and self damaging behaviours. Hierarchy and coercion which tends to rule in the official structure is often mirrored in the subculture of the prisoners. Mental disorders and intellectual limitations are frequently constructed by staff and prisoners alike as a sign of vulnerability and vulnerable is not a safe label to wear in prison. Those who do seek mental health treatment are at risk of being seen by staff as attempting to evade the rigours of prison, and by fellow prisoners as weak and unacceptably alien. Prisons and jails are intended to be punishing and they provide hard and unforgiving environments which often amplify distress and disorder. Equally however they provide remarkably predictable environments with clear rules and limited but well delineated roles. Some mentally disordered individuals thrive in this world stripped of the contradictions and complexities of the outside world. Sadly thriving in total institutions is rarely conducive to coping in the community" (Mullen 2001, 36)

(Families and Friends for Drug Law Reform, National, Submission #336)

Forensic services: When mental health services are inadequate, people affected by mental illness are often failed by other social services too (such as drug and alcohol services) and end up in prison. This should not be allowed to happen in Australia. The SANE Mental Health Report recommends humane treatment and rehabilitation-oriented forensic services be established in each State and Territory, with in-patient units located and managed totally separately from the prison system.

(SANE Australia, National, Submission #302)
6.9.11.4.3 Lack of services for people with mental illness and / or mental health problems who have a hearing impairment

Contrary to Standard 11.4.7, concern was expressed that consumers who have a hearing impairment were experiencing excessive difficulty in accessing appropriate treatment and support services to meet their mental health needs:

"Most of the clients here do have mental health issues. They do. And they're not being resolved. We refer [people] to mental health services and I've gone there to the interview with them and given [staff] the background, but they tend to treat [hearing impaired people] the same as a hearing person. They give them ... stress management stuff and its always sounds 'Listen to music, sounds crashing onto the beach, etc.' It's not modified to suit deaf or hearing impaired people." (Queensland Health, 2001, Deafness and Mental Health A Report on the Mental Health Needs of Deaf and Hearing Impaired People in Queensland, Mental Health Unit: Queensland Health, p.10.)

(Deafness Forum Australia, National, Submission #267)

"A close friend of my daughter, a girl she grew up with, has been in the Sutherland Hospital psychiatric ward for over a month now with a mystery illness / disorder. It is heartbreaking to see a beautiful thirty-year-old woman in such a bad way. It would be infinitely worse if she had a hearing disorder. How do the relatives and carers of Hearing Impaired (HI) / Deaf psychiatric patients survive? How do medical professionals converse with psychiatric patients? Does anybody care? I can still remember when the government made the decision to basically empty out our psychiatric institutions. It was a terrible decision that created an under-class of lonely street people that live day to day without adequate support or care. Some of those people will be hearing impaired, or have a chronic ear disorder such as Tinnitus." (Person with chronic ear disorder).

(Deafness Forum Australia, National, Submission #267)

For those that are already deaf, hearing health can go beyond the ears. Deafness and hearing impairment can impact on mental health and this goes largely ignored by the medical establishment.

(Deafness Forum Australia, National, Submission #267)

If nothing else, a person with a mental health problem, who also has a hearing loss, would be in an extremely difficult situation.

(Deafness Forum Australia, National, Submission #267)

"Hearing Impaired elderly report significantly more depressive symptoms, lower self-efficacy and mastery, more feelings of loneliness, and a smaller social network than normally hearing peers. Whereas chronic diseases show significant associations with some outcomes, hearing impairment is significantly associated with all psychosocial variables." (A study of over 3000 people, aged 55 to 85, with a variety of chronic diseases including hearing impairment, investigating links with psychosocial variables by Kramer et al 2002).

(Deafness Forum Australia, National, Submission #267)

Conflicting data exists in relation to the prevalence of mental illness in Auslan-using Deaf people. Some studies suggest that the incidence of mental illness is higher for Deaf people than for the general population. Other studies suggest the incidence is similar to the hearing population and that the disproportionately higher number of Deaf people within mental health services is accounted for as a result of communication difficulties and misdiagnosis of behaviour and communication disorders.

(Deafness Forum Australia, National, Submission #267)

The Step by Step Project is a national education project focused on building mental health in young deaf people. It was initiated in response to significant concerns about the mental health of many young deaf people. It produced some excellent resources, including Guidelines for Mental Health Service Providers aimed at improving access to mental health services for young deaf Australians. That publication lists numerous other useful resources.

(Deafness Forum Australia, National, Submission #267)
6.9.11.4.4 Lack of mental health services in rural and remote areas, especially for children and adolescents

The Report into the National Inquiry into the Human Rights of People with Mental Illness (1993) repeatedly received evidence regarding the inadequacy of mental health services in rural Australia.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

Concerns were expressed regarding problems with access to services in rural and remotes areas. In particular, The Australian Infant, Child, Adolescent and Family Mental Health Association expressed concern regarding the scarcity or complete absence of child and adolescent treatment and support services (Standard 11.4.3) and lack of training for mental health and health professionals in rural and remote areas to work with children and adolescents with mental illness or mental health problems:

The irony is that in many of the areas where the need is greatest the services are fewest. This is particularly the point in small country communities where mental health services - and certainly mental health services for children and adolescents - are almost entirely non-existent. (p.678)

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

The Report also noted that training and support for mental health, health and other professionals involved in working with children and adolescents with mental health problems, in rural and remote areas, was totally inadequate.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

The efficacy of using innovative training and service delivery methods such as Telehealth, have been well described in the literature, yet there are no concrete recommendations on how this technology could be used to assist rural clients and practitioners. (Mitchell, Robinson, McEvoy, Gates (2001); Mitchell, Robinson, Seiboth, Koszegi (2000)).

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

There is a need to recognise that the staffing levels in country areas are in general inadequate to meet the needs of the rural community. Special formulas need to take into account travel and other factors such as the remoteness of the location in determining staffing levels.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)

AICAFMHA supports investment in the effective expansion of existing rural and remote mental health services for infants, children and youth. The utilisation of technological aids has been demonstrated as an effective means of enhancing services.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)
6.9.11.4.5 Lack of appropriate treatment and support services for Indigenous people with mental illness and / or mental health problems

Concerns were expressed regarding the scarcity of appropriate treatment and support services for Indigenous consumers and their families, particularly for youth and those living in remote communities. In particular, the need for culturally appropriate services, consideration of geographical isolation, high rates of physical illness, and social and wellbeing problems were mentioned as important associated factors impacting on access and service delivery:

Aboriginal and Torres Strait Islander (ATSI) people experience disproportionately high rates of mental health and social and emotional well being problems" and the "frequency of child, youth and adult mental health disorders in the community are higher" (Consultation Paper for the National Strategic Framework for Aboriginal and Torres Strait Islander Mental Health and Social and Emotional Well Being 2004-2009, 2003). The delivery of mental health services to ATSI children and youth needs to consider cultural and belief system differences. Geographical issues also affect the accessibility of appropriate mental health services for this 'at-risk' subgroup.

(The Australian Infant, Child, Adolescent and Family Mental Health Association, National, Submission #221)
6.9.11.4.6 Lack of treatment and support for people diagnosed with personality disorders

Concern was expressed about the paucity of appropriate treatment and support services for people diagnosed with Personality Disorders. Discriminatory attitudes towards people with Personality Disorder were also noted, as was the stigma that surrounds the 'label' of this diagnosis:

"Personality disorders" which constitute an increasing percentage of psychiatric diagnoses, lead to many criminal behaviours, drug abuse and social dysfunction. They usually have child abuse aetiologies. While the label of - 'personality disorders' often implies a sense of hopelessness. It is highly probable that dealing with the underlying trauma might reap better results than simply attempting to modify current behaviours. The provision of resources and research into effective interventions would be valuable. Currently, successful treatment is very limited.

(Advocates for Survivors of Child Abuse, National, Submission #262)

A range of psychiatric disorders including anxiety disorders, PTSD [Post Traumatic Stress Disorder], dissociative disorders, and a range psychotic disorders, have a high percentage of sufferers revealing histories of the trauma of childhood abuse. Often people are treated for their label, rather than taking a holistic approach, encompassing their history, repercussions of their past, social situation and illness.

(Advocates for Survivors of Child Abuse, National, Submission #262)
6.9.11.4.7 Carers are not being heard or involved in the planning of treatment and support

Despite the Standards (11.4.9 and 11.4.11) acknowledging the involvement of carers, carers repeatedly reported being excluded and feeling frustrated. 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 help recovery, assist with the detection of early warning signs and assistance to care and protect many rights of people with mental illness:

A second complaint, so familiar to most families dealing with mental illness on a daily basis, is the lack of ongoing support carers usually receive from the medical profession, particularly by treating Psychiatrists. We as carers recognise patterns of behaviour in our relatives that indicate they are not coping with the symptoms of their illness - which often leads to another episode of psychosis (past experiences help to form our judgments) Too often we are not taken seriously until the situation gets out of hand. This situation could be avoided if Carers were given greater recognition as 'credible' participants in the medical process/system of maintaining stability in their relatives' lives.

(Carer, Anonymous, Submission #224)
6.9.11.4.8 Lack of support services for families post-suicide

Concern was expressed that as there are insufficient treatment and support services for people with mental illness even when they are in crisis, there is a complete lack of hope that services will be available to assist family members after a suicide:

I now feel such pain from a broken heart, and now feel as if I am going mad, but where would I turn, after the experience of my son, there seems no point.

(Carer, Mother, Anonymous, Submission #164)

6.9.11.4.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 indicate concerns about:

  • the lack of programs and services to provide access and/or support to consumers in employment and work; and
  • the lack of carer information, education support programs.
6.9.11.4.A.1 Lack of programs and services to provide access and/or support to consumers in employment and work

Standard 11.4.A.4 states: 'The MHS ensures that the consumer has access to an appropriate range of agencies, programs and/or interventions to meet their needs for leisure, recreation, education, training, work, accommodation and employment' and Standard 11.4.A.6 promotes access to, and/or support for consumers in employment and work. The Standards also support and promote access to vocational training (Standard 11.4.A.7), right to fair pay, conditions, award (and above) payments, opportunities for union membership (Standard 11.4.A.8) and support further or continuing education (Standard 11.4.A.9).

Access to education, training, work and employment programs are seen as critical for consumers to live in the community with opportunities to participate socially and economically. Despite presence of these Standards, concern was specifically expressed regarding the lack of access to a wide variety of programs, activities and agencies to maximise the consumer's success in employment and supported employment. Concern was expressed that relevant programs and employment opportunities are scarce in Australia:

Australia is poorly served with employment programs for people with a mental illness and associated psychiatric disability. Traditional vocational rehabilitation services are far less effective than supported employment. As an example successful employment programs Trieste in northern Italy report an employment rate of 60% of people with schizophrenia whereas in Australia over 75% of people with schizophrenia are not working and on a disability pension.

(Mental Illness Fellowship of Australia, National, Submission #331)

Consumers and carers also want employment opportunities to be available in a work force which is empathic to people with special needs.

(blueVoices, National, Submission #355)
6.9.11.4.A.2 Lack of carer information, education support programs

Standard 11.4.A.12 ensures access to a range of family-centred approaches to treatment and support. It includes family involvement in hospital care, psycho-education, training in family communication and problem-solving, counselling and ongoing support, support for the children of parents with a mental disorder and contact with relevant support/self-help groups.

However, concern was expressed regarding the lack of support and services for carers which are vital to ensure the best possible outcomes for consumers. This suggests a lack of access to family-centred approaches as indicated by the following quotes:

Comprehensive programs to support carers of people with a mental illness are still not routinely available. The programs should not just focus on early intervention. Although early intervention is a vital phase for the provision of information and education at the beginning of an illness for both the individual and carers, there is a need for referral to on-going support and information networks which can often be conducted within the NGO sector. Despite advances in research, many mental illnesses are whole of life and carers often require on-going support and assistance to continue as a partner in maintaining the optimum health of their loved one.

(Mental Illness Fellowship of Australia, National, Submission #331)

It is therefore recommended that the report prepared by the Human Rights and Equal Opportunities Commission and the Mental Health Council of Australia on the current investigation into mental health care in Australia:

a) acknowledges the impact that the failure of this system has on families and carers of people with mental illness;

b) reinforces the need for greater recognition and support of the carer contribution to mental health in all aspects of treatment and care and

c) calls on the Australian Health Ministers to take immediate action to:

I. improve the range and quality of mental health services for people with a mental illness and their carers and

II. ensure that the rights of carers that have previously been agreed to, (as part of the National Mental Health Strategy in 1991) are implemented.

(Carers Australia , National, Submission #276)

Support for family and other carers: While there are varying degrees of commitment to peer support groups for carers around the country, there is none for evidence-based family interventions which are proven to reduce the frequency and severity of psychotic episodes as well as reduce stress and distress in family members. The SANE Mental Health Report recommends implementation of evidence-based carer education and training in all States and Territories as part of a reformed National Mental Health Strategy.

(SANE Australia, National, Submission #302)

6.9.11.4.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 indicate concerns about the lack of supported accommodation.

6.9.11.4.B.1 Lack of supported accommodation

While Standard 11.4.B.8 states: 'There is range of accommodation options available and consumers have the opportunity to choose and move between options if needed' and 11.4.B.9 states 'where desired, consumers are accommodated in the proximity of their social and cultural supports, the Mental Illness Fellowship of Australia and SANE Australia expressed concern about the lack of supported accommodation in all Australian States and Territories.

The lack of supported accommodation was cited as a reason for deteriorating mental health resulting in increased admission rates for acute care, increased contact with and entry into the criminal justice system and increased reliance on welfare support. 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:

Supported accommodation Research shows that people with a mental illness in adequate housing, with a variable level of support based on assessed on need, have fewer remissions with less demand on health, welfare and the justice system. Supported housing for people with a mental illness is inadequate in all states and territories and critically so in several states.

(Mental Illness Fellowship of Australia, National, Submission #331)

Supported accommodation: Providing support to people living in their own homes is a keystone of community-based mental health services - but this is dependent on suitable housing being available. The SANE Mental Health Report recommends adequate levels of affordable, appropriate supported accommodation for people with a psychiatric disability be planned in all States and Territories.

(SANE Australia, National, Submission #302)

6.9.11.4.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 indicate concerns about the limited access to safe and effective medications for consumers being treated by psychiatrists in the private sector.

6.9.11.4.C.1 Limited access to safe and effective medications for consumers being treated by psychiatrists in the private sector

The Standards state that 'medication and other technologies used are evidence-based and reflect internationally accepted medical standards' (Standard 11.4.C.1) and that the consumer has access to the 'safest, most effective and most appropriate medication and/or other technology' (Standard 11.4.C.10).

However, the National Network for Private Psychiatric Sector Consumers and Carers expressed concern that psychiatrists in private practice are not always able to ensure that consumers in their care have access to evidence-based best practice and 'to the safest, most effective and most appropriate medication' (Standard 11.4.C.10) in comparison to consumers being treated in the public system:

The following issues are of grave concern to us ...The new atypical anti-psychotic medications should be available to consumers who suffer a mental illness, apart from schizophrenia. There is strong evidence that these medications can be used in low doses to very usefully to treat other disorders, particularly mood disorders. Currently, psychiatrists working in the public hospital system are able to prescribe these medications for disorders other than schizophrenia. However, psychiatrists in private practice are not, which effectively prohibits them from providing evidence-based best practice for many of their patients.

(The National Network for Private Psychiatric Sector Consumers and Carers, National, Submission #225)

6.9.11.4.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.

6.9.11.4.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, blueVoices expressed concern that there is an over reliance on medication and access to other therapies according to need in the public mental health system is difficult for people experiencing anxiety and depression:

A predominant finding in our experience has been the difficulty in seeking non-pharmacological treatments for persons who experience Anxiety and Depression.

(blueVoices, National, Submission #355)

6.9.11.4.E Inpatient care

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

Under this Standard, submissions indicate concerns about adult consumers in inpatient settings not being treated with dignity and respect.

6.9.11.4.E.1 Adult consumers in inpatient settings not treated with dignity and respect

Concern was expressed that some consumers in inpatient settings are not being treated in a manner which 'add's value to the consumer's life' (Standard 11.4.E.1). Instead, and contrary to Standard 11.4.E.9 and Standard 11.4.E.10, these consumers are offered activities which are not age appropriate:

They are then put in a hospital and in my experience have been treated like children - put on drugs, taken to play group to do colour-ins and stick on craft really suitable for 5 year olds. This does life long harm.

(Consumer, Anonymous, Submission #133)

6.9.11.5 Planning for exit

Consumers are assisted to plan for their exit from the MHS to ensure that ongoing follow-up is available if required.

No submissions or comments were received pertaining to this Standard.

6.9.11.6 Exit and Re-entry

The MHS assists consumers to exit the service and ensures re-entry according to the consumer's needs.

No submissions or comments were received pertaining to this Standard.

6.9.12 STORIES OF SUICIDE

Sadly it is too late for my son who died at the age of 30, 8 weeks ago. For ten years I tried to get help for him, but it seemed he had to be at deaths door for anyone to do anything. As a mother I knew how serious his condition was, but they just kept saying not bad enough. I found in all that time no support from the medical profession, even though I was better off then most people in that I could pay. It is tragic to just watch your child with mental pain, and drugs suffer and have no where to turn ... if it had been physical, cancer, a broken leg, I would have had as much care as I needed. I now feel such pain from a broken heart, and now feel as if I am going mad, but where would I turn, after the experience of my son, there seems no point.

(Carer, Mother, Anonymous Submission #164)
© Mental Health Council of Australia 2005. Last updated 29 August 2005.
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