An interview with the authors of Supporting People.
Peter Beresford, Jennie Fleming and Suzy Croft are among the co-authors of a book published last May entitled Supporting people: Towards a person-centred approach. Peter recently wrote a piece on this blog about the contribution of service users, disabled people and their organisations to challenging the status quo and making change happen. We asked Peter and his colleagues to tell us more about these movements.
TPP: Peter: in your blogpost you mentioned the viral campaign of the Spartacus report on government welfare reform earlier this year, which eventually led to the House of Lords rejecting the bill. Please could you let us know more about this:
A group of disabled people, service users and allies got together because of their desperate concerns about the effects of planned government benefit reforms. Their first report made clear that the government’s evidence base for its proposed reforms to Disability Living Allowance were not reliable. Since then with minimal resources and capacity, but maximum commitment and skill, they have gone on to highlight the cruel effects of current welfare reform and build up a high profile user led campaign to challenge it. The Reliable Reform or as it has come to be called the Spartacus Report looks like being a major precedent for future ‘user-led’ campaigning.
TPP: Can you all tell us how service users are better placed than academics to ‘make a difference’ and some examples of this:
The great strength of service users is their ‘experiential knowledge’. They are talking from experience. They live the issues that politicians, policymakers and researchers engage with 24/7. That has given them a great determination to make change. That’s the invariable reason people give for getting involved – they want to make a change for themselves and others. This doesn’t mean that academics haven’t a contribution to make, but there do seem to be pressures inhibiting the action of many of many of them.
TPP: You talk about letting service users’ voices be heard when discussing their needs. Can you also let us know what social science academics can do to support service users through their work:
It’s all about inclusion and addressing diversity. The academy is a hierarchical place that sadly mirrors most of the barriers and exclusions of the wider world. First it must mount a bigger challenge to these and secondly, it’ll be great for more academics to follow the paths of those who are already working to support service users’ voices to be heard on equal terms. There are academics working in partnership to support service users research issues that affect them and so create a case for change.
TPP: Supporting People talks of a mismatch between the current social care market and person-centred support. Can you describe what this is and how it can be addressed:
The recent scandals of people with learning difficulties being abused at Winterbourne View and the service provider Southern Cross collapsing, highlight the problems of a social care market that is increasingly dominated by large unaccountable private sector organisations. Service users, carers and practitioners, emphasise the importance of small local organisations to provide sensitive, flexible and appropriate support. There is strong evidence that service users particularly value user led organisations as service providers. However, for all the talk of welfare pluralism, enormous barriers are still working against the development of such provision, even though we know that it has a key part to play in advancing person-centred support or ‘personalisation’.
TPP: Peter, you spoke at the Community Care Live conference this week about the way that personal budgets are being used inappropriately to cut social workers. Could you let us know a little more about how this is happening and what can be done to change things:
Personal budgets were offered as a panacea that could sort out all the problems of an inadequate, excluding and underfunded social care system. Of course, while they’ve worked for some people, they couldn’t achieve miracles and are being increasingly brought into disrepute, as support is cut more and more. In the meantime, using the rhetoric of ‘personalisation’ and ‘self-directed support’, social worker posts have been cut, social workers replaced by untrained, more tractable staff working to scripts, service users have lost valuable advocates and fewer and fewer service users are gaining the support social workers can offer to help them empower themselves.
TPP: Finally, what is special for you all about your book Supporting People from the Standards We Expect project?
Two things stand out. First we spoke to and sought the views particularly of service users, carers, face to face practitioners and middle managers. They are the key people in social care but often their views are ignored. We didn’t want to ignore them as well. We thought they had some of the most important things to say – and they did. Furthermore there is a lot of consensus among them in what they say. Finally what the work really highlighted was that if we are going to improve social care, then it is really only likely to happen if those groups can all get together and form alliances and create a new force for change. We felt that the project helped to show how to do that and what it could achieve.
For us one of the special things about the book is how it shows the importance of user involvement and highlights the impact people’s individual involvement in decisions about their day to day support and also considers how groups of people can be actively involved in the design, delivery and evaluation of services to ensure they better meet needs individually and collectively.
We found that if service user involvement is to make a progressive contribution to the lives of service users then there needs to be a real organisational commitment to listen to what service users say, act on what they say and power sharing. In this way service user involvement can move beyond being tokenistic or seen as an end in itself, and lie at the heart of improving the lives of service users. Things will only change when people who are affected by the issues are involved.
Peter, Jennie and Suzy, thank you for your time. Their book is available at 20% discount here.