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User empowerment 2
The following is an excerpt from an article written by Alison Cox, previously Project Co-ordinator for Changing Minds.
"A vision without a task is a dream.
A dream without a vision is a drudgery.
But a vision with a task can change the world"
Black Elk
The Avon Health Measure (AMHM) is a user-centred approach to assessing need. It is a radical departure from the traditional processes of the care programme approach and care management in that the process empowers individuals to become actively involved in their own care and support needs. People needing help have long been telling statutory services that they find it difficult to have their needs properly assessed, let alone met. This holistic approach begins with an individual’s strengths and abilities, which enables them to be seen and for them to see themselves as more than the sum of their difficulties. The Measure has been designed and developed to challenge - and change - the assumption that having been diagnosed as mentally ill, people cannot and do not have the potential to enjoy positive mental health and the quality of life built on their dreams and aspirations and not based merely on what the agency can provide.
Historically, services for disabled people have been constructed upon the erroneous belief that they are unable to assume responsibility for their own individual needs. Therefore, logic dictates that if individuals cannot assume responsibility they cannot participate. If they cannot participate they are excluded from main stream society and discriminated against (Woods, 1990).
Challenging the notions of discrimination and social exclusion is a daunting task and unless service users are fully included in the process how can we begin to change the preconceived perceptions held by the wider society? (Whittaker and Gilmore, 1997). The inclusion paradigms based on the fundamental assertion that everyone is a participant in the world - everyone belongs and contributes (Snow, 1992). Typical citizens receive one sort of support in this society; labelled citizens receive another. Service users have long been attempting to participate, assume responsibility and be included. The increase in momentum of the user movement, particularly over the past ten years, bares witness to that.
Since it is now estimated that in one year 3.2 million people have serious mental health problems and there are now fewer than 50,000 psychiatric hospital beds (Mental Health Foundation, 1993) the vast majority of mentally disordered people do live in the community. Therefore, however much "nimbyism" exists in wider society (and Mind’s Not Just Sticks and Stones [Read and Baker, 1996] and the ensuing Respect Campaign [Repper et al., 1997] is evidence that it is alive and thriving) we need to find solutions to the age old problem of stigma and exclusion. The AMHM, we believe, is a part of that solution because we consult the experts - individuals themselves. The AMHM has been developed and piloted over the last three years. At its heart is the notion of partnership, this being between service users and carers, psychiatrists, psychologists, social workers and the voluntary sector. The working group started life in 1993, chaired by Bristol Social Services and began work on first draft of a document then known as Social Definition of Mental Health. The project has been recognised as a unique exercise by a grant from the Mental Health Task Force. After an initial workshop for GPs, CPNs, social workers and voluntary workers a draft measure was produced and piloted b research teams from the Bristol University and United Bristol Health Care NHS Trust. Following the pilot study, which included two workshops solely for service users, the draft document was considerably amended. After a final workshop was organised for health and social services, staff acknowledged the measure as a valid and comprehensive basis for drawing up care plans and engaging people from the start in the existing CPA and care management process. The result is a measure which allows people to examine 25 aspects of their lives including:
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housing
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ability to self care
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effects of medication
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social support
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daily routine
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experience of discrimination
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community involvement
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risk to self
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anger
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substance misuse
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mood swings
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experience of a number of mental health symptoms
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income
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communication skills and opportunities
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money management; and
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sleep disturbance
The measure allows users to detail what they would like to happen if a personal crisis was developing. People can also describe any education or training which could enhance their lives or enable them to get back to or into work. This gives a personal profile - essential to planning realistic and individual care. Obviously the flip side is that unmet need is also identified. This information is routinely sent to purchasers and planners to enable them to provide a more efficient, flexible and cost effective mental health service.
Service users have found that the measure helps them to take control of their lives in a way that was not previously possible. I would like to share with you a few of the comments service users have made after their experience of using the measure.
"The measure helped me realise how ill I was and helped me and my worker work out what I really needed"
"It made me realise how chaotic my life was and has given me and my doctor a new way of looking at it"
"I wish this had been around when I was first ill"
"It helps me feel part of things"
"GPs should have them then I could of got what I needed in the beginning"
As soon as people enter psychiatric services they enter a world of coded language. The measure has addressed this by creating a common language between service users and practitioners/providers. The measure also recognises the importance of independent advocacy within mental health services a research shows that mental health service users find it hard to ask for what they need for fear of being seen as "non-compliant" (Woods, 1995). When a person chooses to complete the document and, emphasis should be placed on the choice element as this must not be allowed to become another institutionalised assessment, access to an advocate should be offered. In it’s broadest sense this could be a relative, partner or friend. Once completed, the document remains in the ownership of the service user. The summary sheet informs the purchasers/providers then, the person decides when they will repeat the process. This tool clarifies a path out of the stereotypes and services that define and limit people.
The vision of the AMHM is to create a totally accessible document, available in different formats which has the ability to transcend the traditional boundaries of not only disciplines but also agencies. People will be assessed once for all their support needs.
Note: We are at the stage of updating the measure in light of the feedback from the service users about its effectiveness and ease of use. The updated tool should be available for use by mid 2001.
References
Gostin, L. (1990) The right stuff OpenMind No 47, 12-13.
Mental Health Foundation (1993) The Fundamental Facts.
London: Mental Health Foundation.
Perring, C., Willmot, J. and Wilson, M. (1995) Reshaping the Future.
London: Mind.
Read, J. and Baker, S. (1996) Not Just Sticks and Stones.
London: Mind.
Repper, J., Sayce, L., Strong, S., Willmot, J. and Haines, M. (1997) Respect.
London: Mind
Snow, J. (1992) Structuring an inclusive world. Learning Together Magazine, Issue 3, 14-15.
Whittaker, A. and Gilmore, F. (1997) Excerpts by experience.
OpenMind No 88, 10.
Woods, R. (1990) Care of Disabled People. In: C. Barnes (Ed.) Disabled People in Britain.
London: Hurst.
The project is now referred to as Changing Minds.
Mind received the section 64 grant for a new three year project.
"The Changing Minds project is keen to take an evidence based approach to demonstrating the value of an inclusive approach to Mental Health. The Avon Mental Health Measure is made available to anyone who wants to introduce self-assessment, and feedback is welcomed."
(From: Inclusion for Mental Health Service Users, A discussion with Alison Cox, former Project Co-ordinator of the Changing Minds initiative. An article which appeared in Management Issues in Social Care, October 1998, Issue 4, Volume 5.)
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