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Rethink's Self-Management Project - latest news from David Martyn
Following on from Self-Management article1
This is historical now too, so please don't assume it's up-to-date and current. The info is worthwhile, so it's being kept as a worthwhile piece of history of Self Management.
I wrote about the
project in Perceptions 4 and 6. Now, nearly two years on, it is time for
Phase 1 - Research
The first phase of the project was a piece of research in which over 50 people with a schizophrenia diagnosis spoke or wrote to me about their experiences of self-management. Participants were also invited to a Feedback Conference to comment on the results and to discuss options for the future of the project. Both the research report and the feedback conference report are available on the Rethink website or direct from me. Here is a brief summary:
Results of the research
A key finding was that self-management wasn't just about managing "symptoms" of an "illness", but about managing one's life to live as full a life as possible.
The most important aspects were
* having meaningful occupation, whether education, voluntary work, involvement in the user movement, creative activities or paid work
* having good relationships, especially with family, friends and other service-users
* being able to maintain morale
* having coping strategies for the experiences of schizophrenia
* managing medication, including managing relationships with doctors
* exploring and understanding the experience labelled 'schizophrenia'
People also emphasized that the experience of schizophrenia could have a positive side. In particular they mentioned:
* creativity and appreciation of beauty
* learning through the struggle to overcome the condition
* inspiration and support from other service users
Towards a Self-Management Project
Research participants offered many ideas for the project: many testified to the help they had received from sharing experiences and ideas with others, and proposed self-management support groups, either user-led or co-led with a skilled facilitator. One-to-one peer support, or mentoring by a more experienced self-manager, was also proposed.
There was support for written material for use both by individuals and groups. The internet was suggested, both as a place to publish information, and for the provision of a support group or chat room.
The most common interest was in how other people coped with their symptoms, and also to hear about people who had recovered from schizophrenia. There was concern that the project should be available to everyone - that it should reach people with more severe difficulties, in hospital and supported housing.
Participants also wished to see the project remain as far as possible user-led, and to ensure that self-management was not co-opted to become just another way of being managed by others.
Phase 2 - Development
The next phase involved thinking about how to turn the research into a working project. I have been fortunate to have been working in collaboration with a number of people committed to making the project a reality. A working group of people with personal experience of self-management has turned the findings into a set of frameworks to guide a self-directed support group. The project steering group - also made up of service users or ex-service users - has ensured that the viewpoint of people with a diagnosis remained central.
Our aim is to try out three models of self-management support:
The self-management support group. This will be an open-ended peer group with two co-facilitators (one an expert by experience), working in a self-directed manner This model is likely to be suitable for user-led networks and organizations or services where meaningful user-involvement is already well-established.
The self-management course. This will be a structured programme of perhaps 12 to 16 weeks. It is likely to be most suitable for existing mental health settings such as hostels, day centres, primary care and hospitals (in-patient or out-patient).
The individual support model. This will encompass both mentoring, where the supporter is already a successful self-manager, and peer mutual support, where both partners are in the process of becoming better self-managers. This model recognizes that some people are more comfortable in one-to-one relationships than groups.
Phase 3 - Making it happen
We are now in the exciting position of being ready to run a pilot self-management support group. This will start in January 2004, and will be held in Central or North London. It will be evaluated and will form the basis for funding bids to run further projects in other parts of the country.
We need to find service users interested in acting as co-facilitators. We are offering a 2-day training in facilitation skills. This will take place in London, in November, and we will pay expenses.
October 2003 Publication of Rethink booklet on self-management (an account
of the research with some additional material)
November 2003 Self-management group facilitation skills training (for service users interested in co-facilitating self-management groups)
January 2004 Pilot self-management group
Keynote - a user-led project
The project has been guided throughout by a user steering group, and much of the development of the materials has been done by a user working group. Voices Forum members have led participation - as indeed, the Voices self-management conferences have led the way for Rethink's interest in self-management. Any members interested in taking part in the skills training in November, or in the pilot group in January, please get in touch with me for further information.
David Martyn, Self-Management Project Manager
www.rethink.org/recovery/self-management/ - gone
www.rethink.org/ living_with_mental_illness/ recovery_and_self_management/ recovery/ self-management/ - gone
Also see www.self-management.org.uk - that's still there because it's got an independent domain and hosting! I hope something worthwhile is going to be done with that!