Conumer and Carer Participation: A Two Way Street

Consumer and Carer Participation: A Two Way Street

A guest editorial by Keith Mahar and Steve Morris, Mental Health Council of Australia -

Article included in the Primary Mental Health Care - Australian Resource Centre, April 2005 PARCupdate - Volume 2 Issue 2

The rhetoric of consumer and carer participation has long been a feature of the mental health sector. Indeed, it is often argued that other areas of health can learn from the mental health sector's experience of integrating consumers and carers into the processes for development of mental health policy and, to a lesser extent, mental health service delivery. For the past 20 years, mental health has led the health sector in this regard, but consumers and carers report that in most jurisdictions of mental health this experience has been flawed and, in some areas, is even regressing. As the concept takes hold in the general practice sector, it is useful to look at an organisational and an individual perspective on consumer and carer participation.

Consumers and carers are each recognised as having unique expertise and understanding due to either lived experience or the experience of (an often fulltime role of) caring for someone with mental illness. Consumers and carers are directly impacted by the quality and effectiveness of mental health care and thus may be considered the key stakeholders in mental health. Consumer and carer participation is seen as a vital mechanism to improve the quality of service delivery through participation in development, implementation, and evaluation, and increase the level of consumer and carer satisfaction with mental health care.

An organisational perspective

Consumer and carer participation is a concept that is enshrined in the structure and practices of the Mental Health Council of Australia ( MHCA ). Twenty-five percent of the Board seats are reserved for consumers and carers, the inclusion of a consumer and a carer on all sub-committees (including the Council's primary decision making body, the Executive Committee) is a constitutional requirement, and the Council frequently engages in community consultation to inform projects and other activities. The Council has a Consumer and Carer Committee to address consumer and carer issues of national importance, and this committee is informed by the Council's role as the auspicing body for the National Consumer and Carer Forum. The Council is also facilitates a large number consumers and carers providing advice on external committees, and employs two consumer staff members. Each of these features act to ensure the Council maintains a strong focus on consumer and carer issues.

Some key principles influence the Council's approach, including the following:

The approach of the MHCA to consumer and carer participation is intended to reflect the language of the National Mental Health Strategy [1] . However, to achieve effective consumer and carer participation, often a number of barriers must be overcome.

While the evaluation reports of the initial and the renewed National Mental Health Plans highlighted the achievements in progressing consumer and carer participation, they also concluded there is still much to be done before full consumer and carer participation is achieved.

Consumers and carers report that often their experience of participation in health service planning and delivery is tokenistic, inadequately resourced, and lacks consistency across the sector. Other barriers include the lack of training and development for consumer and carer representatives and for mental health workers, difficulty communicating with a 'constituency', insufficient support for consumer and carer representatives (e.g. 'on the ground' requirements such as office equipment, remuneration and travel expenses), and standards for appropriate selection of consumer and carer representatives (e.g. support network, constituency, qualifications for role).

Consistent remuneration and resourcing is a vital step towards addressing these barriers. Consumers and carers should not be required to bear the costs of participation and representation expenses. Many consumers and carers who undertake advocacy and representative duties may do so through personal interest and may not necessarily be able to undertake preparation for representative activities during their normal working day.

There is also a need to establish and promote clearly defined roles and responsibilities of consumer and carer representatives. This helps to establish boundaries as well as promote acceptance amongst fellow representatives and / or colleagues.

Care is needed to ensure representatives are selected who can be supported in their role and have an appropriate constituency with which to consult. Reporting and feedback mechanisms ensure transparency and clarity in representation and information flow between government and the community. Mechanisms can include feedback forms, deadlines, appointment of a liaison officer and use of checklists.

Above all, an open, welcoming and cooperative attitude is necessary to ensure that consumers and carers are respected as equal and valued partners in health care.

An individual perspective

I am a 42 year-old male who has lived with Bipolar Disorder for the past ten years. Not only did my mental illness end my corporate broadcasting career, but it also cost me my self-esteem and confidence. As a result, I was at a loss in terms of planning for future employment because I dramatically discounted my past academic and professional achievements. I did not think that I had anything to offer an employer. Moreover, I did not know how to account for the employment gap on my resume, something I had never had to contend with in the past. Given the social stigma of mental illness, I did not think an employer would be willing to hire someone with a psychiatric disability. The longer it took me to try to figure out what to do next, and nothing seemed possible when depressed, the bigger the employment gap became, and the more impossible the task seemed to be.

In January 2004 I was contracted on a part-time basis by the Mental Health Council of Australia ( MHCA ) as a Consumer Advisor & Policy Officer, my first job in a decade. The experience had a positive impact on me from the start, as I instantly felt more part of the community. I no longer dreaded being asked in social settings where I worked. My self-esteem and confidence started to improve, and the social aspect of being with work colleagues also played an important role in a sense of belonging. I did go through a brief stage of anxiety and depression as I adjusted to the stress of returning to work, but the people at MHCA were understanding and supportive. It is my belief that having a job and the support of my colleagues helped me get through that period far more quickly than otherwise possible. Moreover, my mental health has been significantly better than average since that time.

Clearly, the financial value of working has only been one of the benefits obtained from employment. To me, the opportunity to reintroduce myself to the workplace, in such a supportive setting, has permitted me to discover how to best manage both my illness and work. It has helped me to appreciate that I can work despite my illness. In short, employment at MHCA has been extremely important to opening my eyes to future opportunities, and I recently returned to university for a degree in social work. I doubt that I would have had the confidence to enroll at university without the positive experience at MHCA .

Consumer and Carer Participation Policy: A Framework for the Mental Health Sector

Many of the ideas discussed in this article are drawn from the Consumer and Carer Participation Policy: A Framework for the Mental Health Sector , which has been developed by the National Consumer and Carer Forum (NCCF). If you would like to obtain a copy of the policy contact admin@mhca.org.au or go to http://www.mhca.org.au/Publications/index.html.

Writen by:

Steve Morris and Keith Mahar, Mental Health Council of Australia.

References:

Consumer and Carer Participation Policy: A Framework for the Mental Health Sector, National Consumer & Carer Forum (NCCF)

[1] Key documents of the National Mental Health Strategy include:

•  Mental Health Statement of Rights and Responsibilities (1991);

•  National Mental Health Policy (1992);

•  Schedule F1 of the Commonwealth / State Medicare Agreements (1993-1998);

•  National Mental Health Plan (1992);

•  Second National Mental Health Plan (1998); and

•  National Mental Health Plan 2003-2008