Posts Tagged 'service users'

Mental health service users in research

Patsy Staddon

Patsy Staddon

by Patsy Staddon, author of Mental health service users in research

It is exciting, as someone who is a service user and a slightly off-key academic, to be seeing a book with one’s name on the cover. I had never really expected even to have my research projects funded, or to obtain my PhD at the age of 65, let alone to meet and work with the talented people whose work is presented here.

This unusual book applies a sociological perspective to experiential knowledge and academic research. It celebrates a unique achivemen:’ a series of seminars at the British Library which brought together the work of sociologists, ‘service users’ and ‘service user sociologists’ to stand as evidence of the width and depth of service user research and its implications. The series was organised by the Survivor Researcher Network and the British Sociological Association’s Sociology of Mental Health Study Group, and co-ordinated by Lydia Lewis and Angela Sweeney. It included displays of work from two survivor organizations: the Survivors History Group and Recovery.
Eight of the book’s chapters are contributed by presenters in the series: Angela Sweeney; Peter Beresford (with Kathy Boxall); Hugh Middleton; Steve Gillard, Kati Turner, and Marion Neffgen; Lydia Lewis; Patsy Staddon; Jayasree Kalathil; and Sarah Carr. Further perspectives on user involvement are added in the chapters by Katherine Pollard and David Evans, Rachel Purtell and Wendy Rickard, and Hugh McLaughlin. In this way it has been possible to consider the sociological implications of service user involvement both now and in the future.

We see the value, but also the difficulties, encountered in the application of  ‘insider knowledge’ in service user research. We are shown ways of ‘doing research’ which bring multiple understandings together effectively, and observe the sociological use of autobiography and its relevance. We see how our identity shapes the knowledge we produce, and question how voices which challenge contemporary beliefs about health and the role of treatment are often silenced. An imbalance of power and opportunity for service users, and the stigmatising nature of services, are considered as human rights issues. Most of the contributors to the book are service users/survivors as well as academics. Their fields of expertise include LGB issues, racial tensions, and recovering from the shame and stigma of alcoholism. They stress the importance of research approaches which involve mutualities of respect and understanding within the worlds of researcher, clinician and service user/survivor.

Several contributors, the editor included, feared their voices would never be heard if they did not acquire some sort of academic status, and often struggled against remarkable odds to achieve this. Some of them outed themselves from the start, challenging established medical knowledge, as they sought the social perspectives needed to make sense of their worlds. Others have feared that admitting ‘service user’ identity would disqualify them from serious consideration as academics, and even from employment. Yet we are all likely to be ‘service users’ one day and dividing the world into knowers and their subjects obscures and restricts the very knowledge that is so expensively sought in large scale research trials, frequently designed without the benefit of a sociological perspective (McLaughlin, chapter 11).

Mental health service users in research is available with 20% discount at www.policypress.co.uk

 

The Spartacus report, service users and personal budgets

An interview with the authors of Supporting People.

 

Supporting People author imageSupporting People author imageSupporting People author image  Supporting People Cover

 

 

 

 

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.

What about the role being played by service users in the economic crisis?

ImageBill Jordan, the much respected social scientist, launched a spirited and thoughtful response here to Aditya Chakrabortty’s criticism in The Guardian of his academic peers for failing to address the crisis and cuts created by neo-liberal politics. But it, like the other responses from social scientists, seems to have cut little ice with Aditya who has since energetically defended his position. Perhaps, however, both of them are looking in the wrong direction. The sad truth is that social scientists have often been more effective in defending the status quo, than in challenging it.

The severity of the attacks on the most powerless people in our society  under the UK’s current government, including old and disabled people, poor families, disadvantaged young people and asylum seekers without citizen rights, are unmatched in modern memory. The crudity and viciousness of its welfare reform policies echo the poor law. These developments have only been matched by the flight of former allies of poor people who once fought their corner. The parliamentary Labour Party has taken a line on welfare reform little different from the Coalition. Big charities have seemed more interested in gaining government contracts from workfare schemes and outsourcing than speaking up for the constituencies they are supposed to serve. We should not be surprised if the response from social scientists, and indeed social policy academics and their professional organisations seems muted.

But what is much more interesting is the part that marginalized groups are themselves now beginning to play. While think tanks hog the media microphones and academics appear non-plussed under the cosh of the forthcoming Research Excellence Framework, disabled people, service users, their organisations and movements have stepped up to the plate to challenge the excesses of current capitalism. They have provided powerful first hand testimony of the excesses of current social policy and achieved U-turns at both an individual and policy level.

It was the Spartacus report on government welfare reform, put together by disabled people and their allies which first went viral and then stirred the House of Lords into action against welfare reform. It is the local user-led and disabled people’s organisations which have especially encouraged resistance and pioneered new forms of inclusive opposition, making use of social networking and social media. Service users have realized that we have to speak for ourselves because few others, it seems, will speak up on our behalf.

We can see the increasing impact of this action and engagement even in the lists of publishers like Policy Press, a not-for-profit publisher whose core mission is to make a positive difference to people’s lives, where the discourse is increasingly being influenced by service users, by calls for user involvement and by academic theory being recast and revitalized by the involvement of people with direct experience of the problems they talk about. The recent arrival of such ‘experiential knowledge’ into the policy arena, and the growing impact it has, represents a significant new force for change. That’s not to say there aren’t social scientists to be found among the growing band of service user activists. But perhaps we have been looking in the wrong places for them. They are more likely to be out there in the thick of it, rather than in academic associations and in the pages of unread peer review journals published by cutting edge capitalist companies.

Peter Beresford is co-author of Supporting people, published by The Policy Press, which demonstrates how change can be made now, and what strategic changes will be needed for person-centred support to have a sustainable future. It can be ordered here at 20% discount. Other books published for service users include Critical perspectives for user involvement by Marian Barnes & Phil Cotterell, which is also available at 20% discount.


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