Self-organised user groups of social and health care services are playing an increasingly significant part within systems of local governance. Based on detailed empirical work looking at the user and ‘official’ perspective, this report includes studies of user groups and officials in two policy areas – mental health and disability. The authors examine both the strategies user groups adopt to seek their objectives, and explore conceptual issues relating to notions of consumerism and citizenship. Unequal partners thus contributes to our understanding of the role of user self-organisation in empowering people as consumers, and in enabling excluded people to become ‘active’ citizens. The authors discuss the way in which self-organisation may be supported without being controlled by officials in statutory agencies, highlighting the need to understand and distinguish between user self-organisation and user involvement. The report concludes that if policy makers are genuinely committed to greater user involvement in design, planning and delivery of services, then user self-organisation needs to be both encouraged and supported materially, without being ‘captured’ or incorporated into management. The research points to the significance of ‘user groups’ in challenging the exclusion of disabled citizens from all aspects of social, economic, political and cultural life. Unequal partners is essential reading for health and social care policy makers and practitioners, lobby and pressure groups, students and academics in health and social policy and local government studies, and users.
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Marian Barnes is Emeritus Professor of Social Policy, University of Brighton. She is author of many publications on care, participation, ageing and mental health. Stephen Harrison is based in the Nuffield Institute of Health at the University of Leeds Maggie Mort is Professor in the Sociology of Science, Technology & Medicine at Lancaster University. Polly Shardlow is a forensic social worker.
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