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

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

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

Voluntary efforts of small groupsService users began to carry out their own

research, sometimes supported by NGOsSometimes 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

Survivor led researchEXPLAINS AND CELEBRATES THE ACHIEVEMENTS OF THE PAST 20 YEARS OF SURVIVORS DOING RESEARCH

(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.

The History of Shock Treatment (1978)

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....’

The Well Being ProjectDr. 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.

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

Mental Health Foundation: user led research on alternatives

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

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

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

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

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

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.

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

Agenda for mental health policy emerging from survivor work

RecoverySelf managementStrategies for livingWellness action planningService user-leadership and user involvement in mainstream research

Choice in medical treatments e.g. drugs

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

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)

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.’

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

How pharma industry 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

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?

New research concepts – or strengthening of existing onesDifferent ethical position.Challenge to positivist biomedical research

based on identifying and curing ‘diseases’Challenge to diagnostic system as an

explanation and predictive systemChallenge 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.

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

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.

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’

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.

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

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

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

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

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

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

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

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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

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support and change, Sainsbury Centre.