Survivor Reviews

Alison Faulkner outlines users'/ survivors initiatives - like the Mental Health Foundation's Strategies for Living programme.

Research Ethics Committees

Researchers are generally vetted by a Research Ethics Committee before being permitted to deal with users - to protect patients from potentially harmful research. Problems arise regarding confidentiality, feedback and information for participants. Users should participate; there should be adequate funding, proper allowance for sufferers from mental distress.

'Distress is not necessarily equivalent to harm'. (p57)

Relationships between research and research subjects should be equalised. Ethics Committees may misunderstand

'the vulnerability and capability of the active participants'. (p60).

"often find it cathartic to talk about their experiences".

"What those committees have probably regarded as appropriate protective considerations have often been seen . . . as being overly paternalistic . . . and disempowering." (p60)

Feminist Perspective

The scientific approach involves

'making male attributes the acme of science' (p.42);

'universal means of producing knowledge'.

7 Identity issues in mental health research - Karan Essien

Karan Essien considers women, especially black women, marginalized in psychiatry. In discussions, the women disclosed that they found their ethnicity more significant than their user identity,

"which may indicate why black and minority ethnic people . . . are under-represented in the user movement." (p.63).

'our identity is socially constructed'.

"When the mental health of women is researched, it generally means white women".

8 First-hand experiences of different approaches to collaborative research - Carey Ostrer and Brigid Morris

Collaborative Research has two foci: a) controlled by academics and researchers, inviting user participation; b) user organisations approaching academic and administrative bodies.

Carey Ostrer liaised between users, a consultant psychiatrist and an academic; - 'a new form of doctor-patient relationship', (p72) - and problematical:

"I did not have personal experience of the diagnosis being researched . . . I felt unable to give a direct user service perspective on it, but what I could do was give some advice about how to involve those who had. I suggested . . . we search for a voluntary sector group with specialist service knowledge . . . this was agreed."

9 Literature reviews: An example of making traditional research methods user focused - Pete Fleischmann

Provides a useful table of definitions (page 83)

A literature review is a general term referring to reviewing written material. A rapid review indicates "a quick dip into the literature". A narrative review or a descriptive review reviews literature on a particular area. Most such reviews would not claim to be comprehensive or rigorous. A systematic review, on the other hand, is one that "the review authors consider... to be comprehensive, rigorous and transparent".

A meta-analysis is a special kind of review that uses combines and summarises research findings. It pays an important role in medicine. However, it only reviews randomised control trials. A knowledge review is a term used by the Social Care Institute for Excellence. These include a wide range of literature, including research, grey literature (literature not published in peer-reviewed journals), policy document and testimony. A survey of practitioners or a focus group with users might also be included

With the peer review system, papers must be approved by two academics prior to publication. Quality criteria: Transparency - openness to scrutiny; Accuracy -well groundedness?; Purposivity - fitness to serve purpose?; Utility - fitness for use; Propriety - being legal and ethical; Accessibility - being intelligible; Specificity - meeting source-specific standards.

"Systematic reviews now occupy the top place in the traditional hierarchy of evidence" (page 84)

"In the early 1970s, Dr Archie Cochrane developed the idea that medical knowledge was not being approached in a systematic and coordinated manner: "It is surely a great criticism of our profession that we have not organised a critical summary, by specialty or subspecialty, adapted periodically, of all relevant randomised controlled trials." (Cochrane, 1979; 9). This insight was the genesis of the development of the UK Cochrane Centre... established in 1992 to oversee the collation of systematic reviews of randomised controlled trials of health care treatments."

10 Influencing change: Outcomes from User-Focused Monitoring inpatient research in Bristol in 2002 - Rosie Davies

Rosie Davies: User-Focused Monitoring highlights user response to services. Key criticisms: poor care environments; insufficient information; little user involvement in treatment; inadequate staff contact, attention to ethnicity and gender; poor protection from harassment/abuse; few meaningful activities; weak outside links. Rosie later joined an Admissions Sub-Group, which produced a patients' information booklet, liaised with the regional health authority, and influenced the design and operational policies for a new hospital in Wiltshire.

11 Influencing change: User or researcher? Elitism in research - Heather Straughan

Heather Johnson Straughan, a psychology graduate/user, feels the term 'user research' suggests lack of foundation, preferring 'researching from a user standpoint':

"How then, as users, can we meet professionals on equal terms and ensure that our standpoint is not put aside . . . in the final summing-up?" (p.107) ". . . I was determined that my work would stand or fall on the quality of the work . . . I felt that it was a didactic . . . training encompassing a more holistic . . . approach to a person's life that was needed, as it touched all areas of life." (p109)

Insider's View Outward: Outsider's View Inward:

There are 'blind spots' in all research projects, among both researchers and participants. Heather wanted her 'own participant observations' (p.110) to fill the gaps. Luckily, her two supervisors came from different backgrounds: an academic, favouring qualitative textual data; a psychiatrist, favouring a quantitative, experimental approach. The research was user-led. One must be both

'within the wider research community and separate from it in our own standpoint group'. (p.117).

The programme succeeded; participants sharpened coping skills, distinguished better between feelings concomitant with their illnesses and 'normal' feelings. This helped professionals hone their therapies. Heather cooperated with existing power structures:

". . . this piece of research would have greater potential for change if it were perceived to be interdisciplinary or collaborative . . . I signed an honorary contract with the trust . . . my trust identity badge gave me membership of a closed circle that initially did not take to my presence comfortably . . .".

"I wanted to start, not from the 'user perspective', but from . . . a fresh one that I hoped would be more constructive." (p.118)

12 A rough guide to getting started - Alison Faulkner

Alison Faulkner supports seeing individual experience in the wider context of social diversity. Research findings cannot automatically be applied to all social groupings.

SECTION 4 THE INSIDE STORY

Jan Wallcraft, after graduating, had a breakdown. On recovery, she worked for Mind as a secretary, then did a PhD, researching people with experiences similar to her own. She applied critiques to science and technology policy, rarely questioned. Jan was inspired by Foucault:

"His concept of discourse enables an analysis of how scientific knowledge is socially and politically constructed . . . he describes how sets of concepts such as psychiatric diagnoses become embedded . . . in . . . laws, institutions and professional practices until they are taken for granted . . . madness might largely be a creation of language and theory, developed to suit particular historical needs." (p.136)

David Armes was approached in 2000 by Hartley Dean to develop a user/survivor standpoint, synthesizing Foucault's approach with a feminist perspective. As yet, users/survivors cannot always speak with one voice.

"There is no single explanation of social relations within the world" (p.142) "A discourse is simply all the possible ways in which statements on a particular issue can be framed/ grouped in a set, which in itself decides what the rules are for a statement to be given legitimacy . . ."(p.143)

"particularly when the media bring up discussion about them in the aftermath of a heinous crime." (p.144)

'incapable of contributing to or producing their own knowledge'. (p.25)

". . . if I allowed my mental life to be based on assumptions, faulty role models, second-hand knowledge . . . I would again be doomed."(p.147). He favours holism and instinctual response: "Speaking and writing my subjective truth is absolutely essential for my own mental health." (p.150)

When eliciting experiences of ECT, information emerges more freely when users/survivors talk to each other.

Evaluation of Survivor-Led Crisis Service

Judy Beckett, when working with Dial House Crisis Service in Leeds, honed her interviewing techniques. She was then a research assistant at the University of Leeds.

"I gained the confidence to view the fifteen years of contact with mental health services as a useful and important part of my life experiences" (p.154).

Matt Sands was a user of the Canterbury and District Mental Health Forum Service. Here users did evaluations for planners. The goals were Five Accomplishments of Normalisation: Competence; Choice; Respect; Community Presence; Community Participation. Discussions engendered standards applicable to questionnaires. There were visits to care homes, housing projects, a sub-acute ward and a rehabilitation project. House managers were interviewed, and allowed to see the interview notes. In networking and management committee meetings, professionals dominated discussions, though there was often a majority of users.

Stuart Valentine was based in North-East Scotland:

"We were able, with quality help and guidance, to achieve a positive outcome." (p.157).

Philip Hill progressed from user/survivor to postgraduate. He aimed to

"identify the main characteristics of paid work that could enable fellow mental health service users to find, retain and thrive in employment" (p.158),

Sue Goddard worked in Slough and East Berkshire. Researchers there were contacted through day centres. One participant's comment strikes home:

"My confidence was very low in the NHS and mental health services. The group is very positive and structured; when research started it was a way forward - a way to 'put back' into the system for future clients." (p.161)

"From these projects we have developed our own skills and have a strong group. We are still 'training' . . . there is always something to learn!" (p.162)

Chapter 16 outlines Survivor researchers' experiences, which might be excluded from academic study: 'mainstream researchers believe that they must keep their subjectivity out of their research' - whereas "we did not want to reduce or analyse the richness of why we do research".

Alison Faulkner researched Section 136 of the Mental Health Act, interviewing detainees, police officers and psychiatrists, learning about ethical practice. Later, she was herself in hospital. Alison strives to 'equalise the relationship between researcher and researched'. (p.164)

"I am fortunate in that I achieved a professional life through doing research alongside using mental health services." (p.164)

Angela Sweeney, once 'a deeply political workingclass teenager' campaigned for her mother, who was given unwanted ECT and stigmatised for discussing childhood sex abuse. She benefited from graduating in Social Sciences.

Anne-Laure Donskoy was firstly a user-worker in a User-Focused Monitoring Project, then a user-researcher:

". . . as user-researchers, we are definitely a new breed".

Brigid Morris trains and supports users in their own research and evaluation.

"Service user researchers highly value the opinions of their fellow service users." (p.167) . . . "User-led research projects appear to provide a supportive and flexible place within which people with mental health problems can challenge their own beliefs, and perhaps also the beliefs of others around them, about what they can and cannot achieve." (p.168)

Cath Roper prioritises adaptability and originality in designing and following programmes:

"Our way of working is to allow the commentary we hear absolutely to influence the direction of research . . . We do not start with the agenda tied up. We do not ignore findings that contradict our studies: we use them to inform the next steps." (p.169).

Diana Rose's academic career and psychiatric experience coincided; she took her first degree in hospital. When medically retired from her profession, she became a 'community mental patient' attending day hospital. She later got a doctorate, then became co-director of the Service User Research Enterprise (SURE).

Heather Johnson Straughan was a patient who also graduated. She had reservations:

"It is my fear that user research may just be a flash in the pan. But I had a deep-seated belief that what I was doing, my perspective of having lived mental health and recovery, was more valid than what textbook researchers without this vital insider knowledge might bring to the subject." (p.173).

'trans-cultural tour guide . . . to bridge both the experience and the research methods',

Jasna Russo criticises clinical research and psychiatry:

"I see psychiatric treatment as an attempt to deny, suppress and control what it is not capable of reaching and responding to . . . I research because of my belief in a different science, in one that is not scared of its topics and its subjects . . . one that does not step back from people's lives, and does not construct closed, simple categories to reduce their realities." (p.174)

On leaving secure hospital, Keith Halsall, finding state rehabilitation services ineffectual, devised his own recovery programme, including Reiki and spiritually-based psychotherapy. He then became a forensic user worker, later to lead Department of Health funded research at a secure unit:

"there is enormous confusion and disinformation surrounding forensic mental health - I like to think I can dispel some of that." (p.175)

Pete Fleischman is researching ECT:

". . . traditional psychiatric research tends to gloss over ECT's potential for long-term memory damage" (p.177)

Committees such as he attended tend to overlook patients' personal testimonies, but to his delight, in that instance proper attention was paid, leading to significant reduction in administration of ECT. Patients now know more of their right to refuse the treatment.

Peter Beresford notices that, though many still doubt users' rationality, survivor research,

". . . bit by bit, is gaining its own credibility and legitimacy." (p.179)

Philip Hill, academically successful, had a breakdown. He observed that

". . . rather than my brain being destroyed by the illness and the medication, I realized that my intellect was not destroyed, it was merely in deep freeze." (p.180).

He feels he can now be a good social worker.

Ruth Sayers, in the Mental Health Foundation's Strategies for Living Project, on the basis of her own experiences, researched people who lost jobs through mental health problems.

Sarah Carr emphasises that patients must speak, and be heard to speak, for themselves.

"Perhaps this can be likened to the difference between a visitor to a foreign country reading a tourist guidebook, and actually speaking with people who have lived there." (p.182)

Sarah experienced the controversial drug paroxetine, so could relate to fellow sufferers. Via personal testimonies, user-centred research has persuaded pharmaceutical companies and the psychiatry profession to restrict this drug's use. Tina Coldham finds survivor-led research is a voyage into the unknown.

"You may think you know where you are going, but be prepared to be surprised." (p.183)

For her, it creates opportunities to further her higher education with.

". . . we plough a furrow through the deep ocean. Risking drowning, but ultimately seeking new lands. Lands where people are treated as equals, treated with respect and dignity, treated so they can repair their lives and move on." (p.184)

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