Evaluation of the national mental health strategy

Consumer and carer rights

Page last updated: December 1997

Improving the rights of consumers and carers is a pivotal theme of the National Mental Health Strategy. The commitment to empower the users of mental health services provides a stark contrast to the neglect and gross human rights abuses that characterise mental health services over the past century. It sends important messages both to the community and the industry that consumer and carers should be valued for their intrinsic worth.

Beyond the moral imperative, there is also an economic argument for the initiatives taken, based on the idea that 'good process leads to good outcomes'. Research evidence indicates that there is greater prospect for maximal recovery and less dependence on long term mental health system support when consumers and carers are included as genuine and respected partners in the treatment process.

A broad consensus was evident in the evaluation, across both the national stakeholder and local area consultations, that the structural changes designed to include consumers and carers, introduced under the Strategy, are among its most important achievements. These include:

  • the establishment of peak bodies at the national, State and Territory levels to represent the interests of mental health consumers and carers
  • the allocation of funds to a range of consumer and carer-led projects, designed to strengthen their voice in the mental health market place
  • amendments enacted to mental health legislation of most States and Territories to incorporate the principles contained in the 'Mental Health Statement of Rights and Responsibilities' paper; (see table 4 below)
  • the inclusion of carers and consumers in all working groups established on national strategic issues
  • release in 1996 of the 'National Standards for Mental Health Services' 9 which included relevant service delivery standards for ensuring protection of consumer rights and
  • the commencement of the Community Awareness Program, a high profile national media campaign designed to increase understanding of mental health issues and reduce stigma.
Perhaps for these reasons, it is not surprising that carers and consumers emerged in the evaluation as the strongest supporters of the National Mental Health Strategy.

Data gathered for the National Mental Health Report indicates that there has been some 'trickle down' of the national developments to local mental health services.
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In 1994, two years into the Strategy, only 33% of public sector local mental health service organisations had established a specific, formal mental health consumer and carer group to advise on service planning and delivery (see figure 2). By 1996, this figure had increased to 49%. However, one third of all organisations remained without any formal process for consumers and carers to contribute to service development.

The Area Case Studies provided insight into consumer, carer and service provider perspectives on changes at the service delivery level.
  • In general, all groups were positive about the new roles for consumers and carers in local service planning, with some important differences. Staff employed in hospitals were more cautious about the value of consumer and carer involvement than community-based staff.

  • Providers at all four sites were increasingly willing to involve consumers and carers in individual treatment decisions and plans. Significant benefits were seen to flow from this. For the consumer, treatment could be adjusted by negotiation, or varied to suit personal needs. For the provider, collaborative involvement was more time consuming but led to better outcomes in the longer term. Carers valued the opportunity to add their personal knowledge and learn about how they could best assist the recovery process.

  • Within the four study sites, this personalised approach to mental health care is not yet established as the norm. Consumers reported that providers generally do not relate to them with an emphasis on dignity, respect and privacy. The power shift entailed in collaborative work is experienced by many staff as a threat to their traditional role.

  • The Area Studies revealed little training or planning has been invested in assisting the mental health workforce to make the transition to the new models of care.

  • Differences between the four sites reviewed suggest that the transition has been more far reaching where management unambiguously demonstrated its commitment to consumer and carer involvement, for example, by investing funds in consumer advocates or providing assistance to local groups with establishment costs. The notion that we 'pay for what we care about' has much merit in this context.
The existence of a National Mental Health Strategy has been an important influence on these developments. While little direct guidance has been given about how to 'change the service culture', the policy rhetoric has served to inspire innovative providers and consumers to explore new local options.

The evaluation also revealed that mental health care in Australia is a considerable distance from meeting the principles espoused in the Australian Health Ministers 'Mental Health Statement of Rights and Responsibilities'. Four issues are of particular concern to consumers, carers and their advocates.

The first of these concerns access to treatment and what can be termed the 'ethics of rationing'. Consumers argue that the recent focus on 'severe mental health problems' and 'serious mental illness' has caused damage to people who would otherwise benefit from mental health services. In the absence of a national definition, several variations of the term have come into common usage, but are generally based on a limited set of diagnoses, primarily the psychoses.

Since the release in 1994 of 'Let's Talk About Action' by the National Community Advisory Group10, consumers have reported consistently that many people are excluded from services appropriate to their needs as a result of overly restrictive interpretations of the concept of 'serious mental illness'. The issue was prominent in the committee's earlier report5 and again emerged as a strong warning signal throughout the local and national consultations conducted for the current evaluation. Health professional groups have now also begun registering their concerns on the issue and point to the many negative consequences that may follow denial of access to treatment.

The use of the term 'serious' and its application in defining service eligibility was widely criticised for its pejorative effects, both for consumers who receive treatment and those who are denied services. Recommendations on a fairer and more open basis for targeting mental health services are discussed in the final section of this report.

The second issue relates to community attitudes to people affected by mental illness. Consumer, carers and service providers at all levels in the consultation indicated that the National Mental Health Strategy has failed to reduce the high levels of stigma and discrimination directed toward consumers by the community.
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Of most concern, consumers identified mental health professionals as the main source of stigma and discrimination that they experience. Mental health professionals were often described by consumers as insensitive, poorly skilled and unable to deliver the new models of care. For consumers, the manner in which services are delivered is just as important as the type of service received. Provider groups confirmed that training is inadequate to meet the new demands. This issue is taken up in the final section of this report.

Third, the positive changes introduced in the public sector to promote consumer and carer involvement are yet to transfer to the private hospital sector. Representing approximately 25% of Australian specialist inpatient services, the private hospital sector plays a significant but largely unacknowledged role in mental health care. Like the public sector, it has been the target of past inquiries that have exposed gross abuses of rights in isolated pockets of the industry. Representatives of the private hospitals acknowledged that few steps had been taken to develop consultative mechanisms and this was confirmed by consumer organisations.

The National Mental Health Strategy was developed primarily to engage the Commonwealth, State and Territory funded mental health services and created no formal avenue for engagement of the private sector. This is an area that needs development in the future.

Fourth, in contrast to the development of consumer representation and support, there is broad agreement that approaches specifically designed to meet the needs of carers have been slower to develop. Where initiatives have been taken to expand support groups, these have been valued. Carers and consumer groups agreed that an unintended consequence of the alliance that has formed between the groups over the past five years was the subordination of carers' needs. They are learning to become powerful advocates for others, but not yet for themselves.

Table 4: Consumer and carer rights policy objectives

Table 4 is presented as a list in this HTML version for accessibility reasons. It is presented as a table in the PDF version.

Consumer and carer rights policy objectives:
  • To have the rights contained in the Australian Health Ministers 'Mental Health Statement of Rights and Responsibilities' and in the United Nations 'Resolution on the Protection of Rights of People with a Mental Illness' affirmed in mental health legislation.
  • To ensure that the Commonwealth and all States and Territory Governments have mechanisms for protecting those rights.
  • To support the development and expansion of non-government organisations to assist carers and promote self-help and consumer advocacy, through information provision, opportunities to participate in mental health service decision-making and funding.
  • To expand community-based support for carers.
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Figure 2: Consumer and carer participation arrangements in public sector mental health service organisations, 1994 and 1996

Text equivalent below for Figure 2: Consumer and carer participation arrangements in public sector mental health service organisations, 1994 and 1996

Text version of Figure 3

June 1994June 1996
Specific Mental health Consumer/Carer Advisory Group
33%
49%
Carer/Consumer participation in other committees
22%
17%
No formal mechanism for input
47%
34%
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