Where now for user involvement?

Community Care’s decision to publish a service user issue is a cheering sign of the times. User involvement and service users are now an essential part of the social care and health process. Not only do service users have no intention of going away, but government and other agencies are also paying increasing attention to us in what they say and do.

Personalisation – putting individual service users in control of their support – is now the cornerstone of the adult social care agenda. Service users must be involved in every aspect of professional social work education. A person with learning disabilities is co-director for learning disabilities at the Department of Health. There has barely been a piece of recent child care legislation or guidance which has not been run past children and young people time and again. And an Independent Living Bill to ensure people’s entitlement to social care support has had its first passage through parliament.

And yet, despite all this, service users who are actively involved report their increasing sense of frustration and difficulty in bringing about positive change. Talk to service users about the services they receive and you will hear frequent tales of ever-reducing support.

While fewer than 50,000 people are receiving direct payments, half a million are still living in residential institutions. Older people are currently having their expectations of the support they can hope to receive downwardly adjusted. Children and young people report a fostering system that still results in frequent placement breakdown. Disabled parents fear that their children will be removed rather than them being offered the support they need. Large numbers of children are still taking on the role of carer because their parents are denied the formal support they need. Public attitudes to mental health service users seem to have become more negative. The government has just passed a new Mental Health Act with some draconian principles, despite nine years of concerted opposition. And people with learning disabilities continue to report large-scale bullying and abuse.

In 2005, the Prime Minister’s Strategy Unit published Improving The Life Chances of Disabled People, which called for the development and resourcing of a network of local user-controlled organisations. Yet, over the last year, a significant number of such organisations have closed down because of a loss of, or insecure, funding. Many others report their situation as precarious. While the government has, in all sincerity, pressed for the full involvement of service users, the benefits system continues to work against this. Many people are now too frightened to get involved for fear of jeopardising their benefits, meaning claimants are denied the same democratic rights as other citizens.

In 1992, Community Care jointly organised a national conference on user involvement. It was a landmark event. The then editor wrote that it highlighted “the best of times and the worst of times”. Sadly, that ambiguity is as true now as it was 15 years ago.

Community Care is to be congratulated on producing this service user issue. But it also serves as a powerful reminder that the pace of achievement can be slow, that sometimes one step forward may also mean two steps back, and that we are unlikely to make much progress on user involvement and advancing service user agendas without yet more blood, sweat and tears.

Much more campaigning is going to be needed if we are to match our achievements in putting service users at the centre with our aspirations. We will need new alliances, for example, between social care workers and service users, and between different groups of service users so that we can’t be divided and set against each other. And hopefully we’ll have more service user issues of Community Care.

Let’s make real that rallying cry of the international disabled people’s movement: Nothing about us without us!

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Peter Beresford’s blog
Involvement of service users in social care research

Peter Beresford is chair of Shaping Our Lives, the national service-user controlled organisation and network, and a user of mental health services