User groups are more than mom and apple pie

User involvement in social care and health is at a worrying and complex crossroad. Something must be done soon, if such involvement isn’t to be remembered as a temporary blip in an essentially paternalistic policy tradition.

On the one hand we can see an unprecedented commitment to participation in the government white paper, Our Health, Our Care, Our Say. New structures are also being engineered to provide more opportunities for involvement. On the other hand, recent cuts in Wiltshire and the uncertain future of the Wiltshire users’ network – a beacon organisation for user involvement – raise serious questions about the actual status of involvement on the ground.

This is also far from an isolated development. All over the country, service users are losing support services. There are losses and closures in key advocacy services. Service user groups are going under as their funding is reduced or stopped.

Yet a large and growing number of service users believe that it is only through the development of a network of such local user-controlled organisations that effective user involvement is possible. How else they say, will service users gain the experience, confidence, skills and strength to exert an influence at personal and policy levels?

What adds to the confusion is the ambiguity over the purpose of user involvement. Is it part of a process of democratising policy and provision, or merely concerned with putting a consumerist gloss on policy and services by offering opportunities for market research input to match the everexpanding role of the private sector? But even if it’s  only the latter, infrastructural support is still essential.

It’s time we all became more serious about user involvement. It’s no longer enough to treat it like mom and apple pie – something that comes naturally and that we’re all automatically signed up to. Good policy is achieved through developing a strong knowledge base, being clear what is wanted, negotiating competing interests and then going for it with commitment and determination. Policy and practice for user involvement are no different.

A key recommendation of the prime minister’s strategy unit report, Improving The Life Chances of Disabled People, was the need to support and fund a network of local user-controlled organisations. The government has launched a 12-month cross-government independent living review, led by the Office for Disability Issues, to take forward the report’s recommendations.

One of these is to put in place such an infrastructure of service user organisations to make a reality of user involvement and user-led services. The review is led by two high-profile disabled women: Jenny Morris is executive director and Dame Jane Campbell, formerly of the Social Care Institute for Excellence, chair.

But it is not enough for government to take a lead on user-led services and support. We need to see health and local authorities with the gumption and resources to make user involvement real at local level and equitable nationally. This isn’t about throwing money at participation; it is about investing in it systematically, so that everybody has an equal chance to determine and to receive the right support for them. It is also likely to mean some significant shifts in funding allocation. It’s time to transfer investment from some of the big traditional voluntary organisations, which are often indistinguishable from other providers, to the small user-controlled providers.

It is only by supporting service users to grow their own organisations and networks that new visions for self-directed support and individualised budgets have a chance of being realised.

Peter Beresford is professor of social policy at Brunel University and is involved with the psychiatric system survivor movement

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