• This is Survivor Research

This is Survivor Research

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ISBN 978 1 906254 14 8 (2009)
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There has been a major development in health and social science research: it is now being carried out by people who had previously only been seen as its subjects. At the forefront are people with experience as mental health service users/survivors who have taken a lead in pioneering a new approach to research which is now commanding increasing attention and respect. This is Survivor Research for the first time details this important new approach to research. Written and edited by leaders in the field it:

• explores the theory and practice of survivor research
• provides practical examples of survivor research, and
• offers guidance for people wishing to carry out such research themselves

This is a groundbreaking book for policy makers, researchers, educators, students, service users and practitioners in the mental health field and beyond.


Foreword Mary O’Hagan

1 Introduction Diana Rose and Peter Beresford
2 Background Peter Beresford and Diana Rose
3 So what is survivor research? Angela Sweeney

4 Survivor-produced knowledge Diana Rose
5 Developing a social model of madness and distress to underpin survivor research Peter Beresford

6 Survivor research: Ethics approval and ethical practice Alison Faulkner and Debbie Tallis
7 Identity issues in mental health research Karan Essien
8 First-hand experiences of different approaches to collaborative research Carey Ostrer and
Brigid Morris
9 Literature reviews: An example of making traditional research methods user focused
Pete Fleischmann
10 Influencing change: Outcomes from User-Focused Monitoring inpatient research in Bristol in 2002 Rosie Davies
11 Influencing change: User or researcher? Elitism in research Heather Straughan
12 A rough guide to getting started Alison Faulkner

13 From activist to researcher and part way back Jan Wallcraft
14 ‘Getting better – in theory’: Creating, then using, a Foucauldian mental health service user/survivor theoretical standpoint in my own journey of ‘recovery’ David G Armes
15 Project accounts:
  • A survivor-led evaluation of a survivor-led crisis service Judy Beckett
  • Empowerment under permit: Canterbury and District Mental Health Forum Service User Evaluation (SUE) project Matt Sands
  • An evaluation of a mental health service in North East Scotland Stuart Valentine
  • My experience of doing academic research to attain a research degree Philip Hill
  • Research and evaluation in East Berkshire Sue Goddard
16 Telling our truths, bringing about change: Being a survivor researcher Tina Coldham and Jasna Russo
  • Turning the tables Alison Faulkner
  • Mickey Mouse scans? Angela Sweeney
  • Benefit of the doubt Anne-Laure Donskoy
  • Challenging beliefs Brigid Morris
  • We don’t start off with the agenda tied up Cath Roper
  • Being a survivor researcher helps me survive David Webb
  • Not just someone who takes Debbie Mayes
  • Having a double identity Diana Rose
  • Working in a twilight zone Heather Straughan
  • Talking back to power Jasna Russo
  • Alchemy: A miraculous transformation or the means of achieving this Keith Halsall
  • Banging against the brick wall Mary Nettle
  • Shocking memories Pete Fleischmann
  • Survivor researcher: An holistic role Peter Beresford
  • Not an academic in an ivory tower Philip Hill
  • Missionary zeal Ruth Sayers
  • The sick and the well? Sarah Carr
  • On board the good ship Survivor Research Tina Coldham

This is Survivor Research is an important and timely publication. Clearly written, comprehensive, interesting, useful, this is a book anyone concerned with survivor research should have readily to hand. Peter Campbell, mental health system survivor

The authors of this pioneering book spell out in every chapter the ways in which research in mental health can [deliver benefits] in every respect by the direct participation of service users. Underlying this recently achieved consensus is a basic challenge to the traditional way that biomedical research has been undertaken. These arguments for service user-/consumer-/survivor-led or participatory research are powerfully argued, strongly justified, and persuasively marshalled in this very important addition to the literature. Graham Thornicroft, Professor of Community Psychiatry and Head of the Health Service Research Department, Institute of Psychiatry, King’s College London

This book marks the coming of age of user- and survivor-led research. It maps out the why, what and how of an important strand of research whose influence is growing in strength. It needs to be read by researchers, policy makers and the wider mental health community to increase understanding of the impact and integrity of user- and survivor-led research. Paul Farmer, Chief Executive, MIND

This book is a major achievement. It helps us understand exactly how far survivor-led research has taken us and how much further there is to go. It also celebrates the enormous achievements of the last 10 to 20 years. It is essential reading for all those interested in mental health research, whether it is survivor led, survivor informed or not. Surely no one can question the substance or relevance of survivor-led research after reading this book. Andrew McCulloch, Chief Executive of the Mental Health Foundation

Peter Beresford

Peter Beresford OBE is a long-term user of mental health servicse and Co-Chair of Shaping our Lives, the national independent service user-controlled organisation and network. He is also Visiting Professor at the University of East Anglia. He has a longstanding involvement in issues of participation and empowerment as writer, researcher, educator, service user and campaigner. He is author of A Straight Talking Guide To Being A Mental Health Service User (2010) published by PCCS books.

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Peter Beresford

Alison Faulkner

Alison Faulkner works as a freelance researcher, trainer and consultant in the mental health field. She has over 20 years experience in social research, and has worked for Rethink, The Mental Health Foundation, the National Centre for Social Research, Mind and The Sainsbury Centre. Alison is herself a mental health service user/survivor, and has written and presented extensively on services from a user perspective and service user involvement in research. She drafted the guidance on service user involvement for the MHRN Service User Research Group, England, and researched and wrote 'The Ethics of Survivor Research' (2004). As a user of servcies, Alison has experienced acute inpatient care, crisis services, psychotherapy and medication.

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Angela Sweeney

Angela Sweeney was part of her local survivor movement as a teenager and young adult, and conducted her first survivor research project as an undergraduate student in 1998.  Sometime after graduating, she joined the Sainsbury Centre for Mental Health to work on a study of the British Survivor Movement (On Our Own Terms, 2003) before moving to the Service User Research Enterprise at the Institute of Psychiatry where she gained a PhD in medical sociology.  She has a particular interest in survivor controlled research, trauma-informed approaches, survivors' perspectives on and experiences of psychiatric services and treatments, and alternatives to mainstream biomedical psychiatry including trauma and social models of causation.  She is currently undertaking a five year Post-Doctoral Fellowship exploring assessment processes for talking therapies. She has two young children, a partner, and a cat.

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Angela Sweeney

Diana Rose

Diana Rose is a social scientist and has also been a user of mental health services all her adult life. After a very difficult time in a lecturing job, followed by five years as a 'community mental patient', she brought her two identities together to do user-led research. This was strongly influenced by her involvement in the UK user/survivor movement. The first project was undertaken in an NGO where she developed a way of evaluating services from the service user perspective. In 2001, she moved to the Institute of Psychiatry, King's College London, to work in the Service User Research Enterprise (SURE). She now co-directs SURE and has been appointed Senior Lecturer in User-Led Research. 

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Mary Nettle

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