Experience of developing service user/survivor research

1. Experience of developing service user/survivor research Potential for this research agenda to impact on mental health practice, service delivery models and policy Dr. Jan Wallcraft Dec 09

2. Involvement in mental health research based on liberation struggles • Liberation movements of various social groups in 1970s • Disability movement ‘nothing about us without us’ • Aspirations of mental health service users for full citizenship and rights including

3. Where do survivor researchers come from? • Service user activists who turned to research to make a difference and developed research skills • Academics and researchers with lived experience of mental health services: using their skills in researching mental health

4. Voluntary efforts of small groups • Service users began to carry out their own research, sometimes supported by NGOs • Sometimes using conventional social survey methods but with service users designing, asking the questions and analysing the results • Sometimes seeking forms of research based on liberation struggles– emancipatory, standpoint, action research, participatory methods • Personal perspectives, narrative methods

5. Survivor led research EXPLAINS AND CELEBRATES THE ACHIEVEMENTS OF THE PAST 20 YEARS OF SURVIVORS DOING RESEARCH

6. The History of Shock Treatment (1978) (1978) Leonard Roy Frank was treated with blitz ECT in the 1970s – large areas of his memory was erased. He researched the history of shock treatment as a means of coming to terms with the damage he had suffered. He compiled this book to give information (both pro and anti ECT) to others so they could make their own choices.

7. Recent study of ECT by a survivor of the treatment – Linda Andre (2009) Linda Andre was similarly motivated – she was a talented photographer when she was admitted to hospital and given ECT. Her skills and knowledge obliterated, she embarked on many years of research and campaigning to try to get ECT banned. A psychiatrist, Stefan Kruszewski, who formerly gave ECT, reviewed this book: ‘’ A brilliant analysis....the book made me feel ignorant of ECT’s past and deceived by having virtually none of the information presented in Andre’s book brought to my attention previously....’

8. The Well Being Project • Dr. Jean Campbell, a service user researcher was principal investigator of the Well-Being Project, which ran from 1986–1989. • This influential survey programme, based in California, identified the factors that helped and hindered well-being of those labelled mentally ill. • The interviewers were all service users, trained as part of the programme, and carried out over 500 face to face interviews • producing a report (Campbell and Schraiber, 1989) a video documentary, a compendium of statistics, oral history, art and writings.

9. My first user-led research project for a government-funded disability project

10. Mental Health Foundation: user led research on alternatives

11. Healing Minds (1998) • This report brings together evidence for a range of complementary and alternative therapies in mental health, including acupuncture, homeopathy, nutritional remedies, aromatherapy, massage and spiritual healing

12. Coping with coming off - user-led research – Jim Read for MIND

13. CWCO research: Success rates for different drugs • Nearly three quarters of those coming off mood stabilisers succeeded in coming off. • The success rate was lower for those on SSRIs or anti-psychotics – just over half of these succeeded in coming off. • However, people on mood stabilisers were much more likely than those on SSRIs to be discouraged by doctors from attempting to come off

14. Difficulties with coming off drugs • The longer people had been on the drugs, the more likely they were to have difficulties when coming off: • Only one quarter (25%) of those who had been on less than 6 months had problems • Four in five(80%) of those who had been on six years or more had problems

15. CWCO - Staying off drugs • Nearly half those interviewed (91 out of 204) were no longer taking any psychiatric drugs. • Of this group, nearly a quarter had been off drugs for 10 years or more. • This group included people who have taken all forms of psychiatric drugs except for those introduced recently

16. CWCO - People who help in coming off • Those trying to come off generally found that people with no involvement in prescribing drugs the most helpful. • These include voluntary orgs, helplines, complementary therapists, support groups, counsellors, and other service users. • Mental health workers, GPs and Psychiatrists were seen as least helpful.

17. Sainsbury Centre: user-led research on the service user movement

18. Agenda for mental health policy emerging from survivor work • Recovery • Self management • Strategies for living • Wellness action planning • Service user-leadership and user involvement in mainstream research • Choice in medical treatments e.g. drugs

19. Service user involvement in mainstream research The history of service user involvement in mainstream research is one of struggle with the dominant ideology of empirical science and rational/logical positivism, which rules us out as ‘non-rational’ individuals

20. Involvement On Whose Terms? • ‘Collaboration usually starts by academics inviting user researchers to contribute to their projects and not the other way around. The way someone joins the project – on whose initiative and for what reasons – defines their role, at least at the beginning. [Service ] users are invited at various stages of someone else’s project. They are rarely invited to plan and seek funding for the research and to define the roles and responsibilities.’ • (Russo and Statsny, in ‘Wallcraft et al 2009)

21. Allies and supporters of involvement in research • However - service user/survivor involvement in clinical research would not be possible without the work of committed people in government: • ‘Involve’ : set up in 1996 by the Director of Research and Development in the NHS • ‘Consumers are the ultimate recipients and beneficiaries of the knowledge derived from research and development. It is therefore not only desirable, but essential that they be involved in developing and implementing strategies for R&D in the NHS.’

22. Evidence Based Medicine- or Evidence-based Mafia? • EBM in mental health is based on assumptions about madness that cannot be questioned or examined (from 19th century and earlier) • ‘The currently used outcome measures are based on maintenance- symptom reduction and medication compliance. When 'community integration' is used as the outcome measure, the recovery model is more evidence based than the medical model ‘( p.114 Wallcraft et al 2009)‏ • Many common practices are not evidence-based – e.g. Hospitalisation • Many drug trials fail to show any advantage over placebo

23. How pharmaindustry manages evidence in US and UK • Ghost writing articles paying eminent researchers to put their names to them • Advertising (in USA direct to the public) • Targeting pharmacists and doctors • Supporting free journals to publish and disseminate their results • Suppressing negative results and drop-out/deaths • Universities receive money in admin costs for drug trials, speakers fees and consultation costs • Influencing guidelines and evidence hierarchies

24. SPN -Questions that should be asked when starting research • Who has been involved in deciding what needs to be researched? • Who has relevant knowledge and expertise that may be used to guide the research? • Who is going to be participating +how do they give informed consent? • Who is it hoped will benefit from the research and in what way? • How will research findings be used and who will have access to them? • Do all stakeholders in the research process have equal power and influence?

25. New research concepts – or strengthening of existing ones • Different ethical position. • Challenge to positivist biomedical research based on identifying and curing ‘diseases’ • Challenge to diagnostic system as an explanation and predictive system • Challenge to neutral, objective researchers measuring changes in passive subjects – e.g. RCT methods • Greater importance of empowering methodology, service users as conceptualisers of the research question, qualitative methods, narrative enquiry.

26. Involvement does change things Example 1 : ECT • SURE’s work on ECT – a systematic review of what patients say about ECT – this had never been done before: • Included firsthand accounts of ECT. • Found that very few studies follow up patients even as long as 6 months • Memory loss was found to be a persistent side effect, profoundly affecting people’s lives • No long-lasting benefit of ECT was found in patients’ testimony

27. Eliciting users’ views of ECT (Philpot et al 2004) • ‘Doctors who give ECT have shown remarkably little interest in their patients’ views of the procedure and its effects on them’ (Abrams 1997) • This study used a questionnaire designed by a mental health service user group, before and after patients received ECT. • 45% reported persistent memory loss • 47% felt they had been compelled through pressure to have it despite only one actually being under section • First ever prospective study of ECT with an ECT user-designed questionnaire.

28. NICE’s Response re ECT • NICE had asked for this research, and had to act on it: • ‘The Committee considered that the evidence appraised supported the effectiveness of ECT in certain groups of individuals. However, the Committee recognised there remained a number of uncertainties, including a lack of information on longer-term outcomes. The Committee was aware of the negative experiences of some individuals who have undergone ECT. Therefore the Committee considered that that ECT should be used with caution and only in the restricted circumstances recommended in the guidance’

29. Example 2 – Personality Disorder – (Colchester) • Colchester Research: • A group of service users diagnosed with PD met with an advocate, Heather Castillo in Colchester Mind in 1999 and developed a research project on service user perspectives of PD. • They were given support and funding from a local University and training by Mind. • They carried out a service user-led study of 50 people’s experiences of PD, diagnosis and treatment.

30. Example 2 – Personality Disorder (St. George’s, London) • St. George’s Trust PD research • Service user researchers involved in developing proposal and drawing up of original interview schedule • Service user researcher and doctor undertook all interviews jointly • Reflective diaries kept by all members of research team throughout project to explore the impact of service user involvement and collaborative research • First part of interview invites people to describe what ‘recovery’ means to them in the context of their experiences of PD • Second part of interview asks them to reflect on the relevance of other accounts of mental health recovery to them • Combination of narrative analysis (keeping individual recovery stories intact) and content analysis (comparing understandings of recovery and PD with other understandings of mental health recovery

31. Service user involvement in National PD programme • Strategy for PD was sought by Department of Health in London in 2001 • Acknowledgement that service user voices should be included • Parallel reference group of service users set up in 2002 • Pilot PD services set up in 2004 and evaluated with service user involvement in the evaluation process

32. NICE guidance on BPD • NICE guidance was published in January 2009 • Service users and carers were involved as stakeholders in the process of creating this • There is a sizeable section on service users’ experiences of BPD and services • Guidance reflects principles emerging from service users’ work, e.g. • Importance of autonomy and choice • trusting relationships • the role of abuse and trauma and encountered stigma • the role of psychological treatments and drug treatments

33. Danger of co-option of service user concepts example 1: recovery Service user version Service provider version • Self identification of problems and causes • Self-identification of needs • Regaining self esteem, power and control over life • Finding new activities that enhance enjoyment and meaning in life • Reducing dependence on services as far as possible • Classification into long-term severe patients / common disorders (primary care only) • Focus of medical services on long-term patients • Reclassification of long term patients viewed as able to ‘recover’ to lower needs group • Pressure (‘encouragement’) to get former patients into jobs

34. Danger of co-option of service user concepts example 2: self management Self management Illness management • Peer support to learn more about one’s mental health problems or condition • Sharing information on what works • Learning to identify triggers, set goals and make action plans • Achieving and maintaining wellness as far as possible • Learning to support others • Psycho-education from doctors on effects of stress, symptoms, diagnosis, and treatments. • Learning to use medication effectively • Relapse prevention to recognise warning signs • Coping skills to manage stress and reduce symptom severity

35. Potential influence on service delivery models • Recovery and wellness orientation • Collaborative services using concepts of wellness, recovery, self management, choice and strengths • Better acceptance of services, more positive outcomes • New ways to evaluate services, in co-operation with service user groups, using different outcome measures e.g. Recovery Enhancing Environment Measure, Recovery Assessment Schedule, Herth Hope Index, Empowerment Scales, or Goal Attainment Scaling • Greater involvement of families and friends to enhance community support and understanding of mental health issues • Ultimately, changes to legislation to give greater rights to quality services and eliminate discriminatory practices

36. Conclusions What we don’t need What we DO need • Tokenism • Co-option • Hi-jacking service user concepts to make policies look more acceptable • Domination of research agenda by pharma industry • More evidence that ignores service users preferences and views • New outcome measures that measure valued outcomes for service users • All mental health research on services to have service user input at all stages • More use of narrative methods • Implementation of research with service user input • Service users trained and supported to do research themselves

37. References • Andre, L. (2009). Doctors of Deception: What They Don't Want You to Know about Shock Treatment, Rutgers Univ Pr. • Beresford, P. and J. Wallcraft (1997). "Psychiatric system survivors and emancipatory research: issues, overlaps and differences." Doing disability research: 67-87. • Bullock, W. A., M. O'Rourke, et al. (2006). "Effectiveness of the illness management and recovery program in promoting recovery: Preliminary results." New Research in Mental Health • Campbell, J. and R. Schraiber (1989). "The Well-Being Project: Mental health clients speak for themselves." San Dworkin, R.J. (1992) Researching Persons With Mental Illness, London: Sage Publications • Francisco, CA: California Department of Mental Health. • Faulkner, A. and S. Layzell (2000). "Strategies for living: A report of user-led research into people’s strategies for living with mental distress." Mental Health Foundation, London. • Frank, L. (1978). The history of shock treatment, Leonard Roy Frank. • Hanley, B. (1999) Involvement Works: The second report of the Standing Group on Consumers in NHS Research, London: NHS Executive. Available online at: http://www.invo.org.uk/pdfs/involvement_works.pdf, accessed 25/10/08. • Lewis, G., Anderson, L., Araya, R., Elgie, R., Harrison, G., Proudfoot, J., Schmidt, U., Sharp, D., Weightman, A. and Williams, C. 2003. Self-help interventions for mental health problems. Report to the Department of Health R&D Programme • O'Hagan, M. (1993). Stopovers on my way home from Mars, Survivors Speak Out. • Philpot, M., C. Collins, et al. (2004). "Eliciting users' views of ECT in two mental health trusts with a user-designed questionnaire." Journal of Mental Health13(4): 403-413. • Read, J. (2009). Psychiatric Drugs: Key Issues and Service User Perspectives, Palgrave Macmillan. • Rose, D., P. Fleischmann, et al. (2003). "Patients' perspectives on electroconvulsive therapy: systematic review." British Medical Journal326(7403): 1363. • Stastny, P., P. Lehmann, et al. (2007). Alternatives beyond psychiatry, Peter Lehmann Publishing. • Sweeney, A., P. Beresford, et al., Eds. (2009). This is Survivor Research, PCCS Books. • Tew, J., N. Gould, et al. (2006). "Values and methodologies for social research in mental health." London, SPN/SCIE. • Wallcraft, J. (1998). "Healing minds." London: Mental Health Foundation. • Wallcraft, J., M. Amering, et al. (2009). Handbook of Service User Involvement in Mental Health Research, Wiley-Blackwell. • Wallcraft, J., J. Read, et al. (2003). On Our Own Terms: Users and survivors of mental health services working together for support and change, Sainsbury Centre.