'Nothing about me without me': The growth of the expert by experience

Question 1

In regard to Antipsychiatry, what was the view of Erving Goffman?

Answer 1

‘Total institution’ actually aggravated long-term difficulties.

Question 2

In regard to Antipsychiatry, what was the view of Michel Foucault?

Answer 2

Mental illness was an 18th century social construct.

Question 3

In regard to Antipsychiatry, what was the view of Thomas Szasz?

Answer 3

Denied the very existence of mental illness.

Question 4

In regard to Antipsychiatry, what was the view of Ken Kesey?

Answer 4

‘One Flew Over the Cuckoo’s Nest’

-> conceptualised psychiatric patients as nonconformists

Question 5

In regard to Antipsychiatry, what was the view of R.D. Laing?

Answer 5

• Rejected medical psychiatry

- Encouraged greater attention to patients’ lived experiences

Question 6

What did the 1975 White Paper ‘Better Services for the Mentally ill’, presented by Barbara Castle (Labour Secretary of State), say about the realities of hospital closure?

Answer 6

> Shortcomings of the Hospital Plan
Limited scope for progress within the near future
Concerns over closure before community-based alternatives were available

Question 7

What did Peter Barham say about the realities of hospital closure?

Answer 7

> Inability of community care to deal with the vicissitudes of mental illness
Failures increased the stigma and isolation experienced by recently-discharged patients
-> creating generations of new long-stay and revolving door patients (frequent service users)

Question 8

What did the late 20th century decarceration lead to?

Answer 8

A momentum for

• Community-based studies
• Patient-authored accounts
• Activism
• > Collaboration between Camden Mental Health Consortium (CHMC) and the voluntary organisation Good practices in Mental Health
• Two user controlled research projects

Question 9

What did the collaboration between Camden Mental Health Consortium (CHMC) and the voluntary organisation Good practices in Mental Health in the 1990s consist of?

Answer 9

> First project about service user views of the new inpatient provision in a District General Hospital
Two user controlled research projects
1. Strategies for living
- peoples’ own strategies for dealing with mental distress
- coordinator: service user
- interviewers: service user
- published in 2000
2. User-focused Monitoring
- peer evaluation of community and hospital services based on localities
- coordinator: service user with research skills training
- published in 1998

Question 10

What was criticised about the two user controlled research projects in the 1990s?

Answer 10

The service users who lead this research were members of the “service user movement’ and took their questions and sometimes their methods from it
-> Openly political which some understood as biased

Question 11

What happened after the first two user controlled research projects in the 1990s?

Answer 11

Peer-review later spread to other locations and services assisted by INVOLVE
- a government funded national advisory group on public involvement in research

Question 12

What marked the transition to user-led research?

Answer 12

The creation in 2001 of the Service User Research Enterprise (SURE)
- initiative of Professor Dame Til Wykes who championed service user involvement in all aspects of research

Question 13

Who does the SURE Research at the IoPPN?

What is it based on?

Answer 13

> Tests the effectiveness of services/treatments from the perspective of those with mental health problems and their carers
Based on the premise that service user researchers have insider knowledge about
- mental distress
- treatments
- services
In addition to conventional training and qualification

=> SURE is the largest academic department of its kind in the world

Question 14

What are the prominent research groups in the research community, during the growth of the service user movement?

Answer 14

> Suresearch (est. 2001)
- members include users and survivors of mental health services

> Shaping Our Lives National User Network

• independent user-controlled group, think-tank and network
• works with a wide and diverse range of service users

> The Survivors’ History Group

• celebrate the historical contributions of mental health service users
• maintains a detailed online mental health timeline

> St George’s research group, University of London

• work alongside ‘peer’ researchers with experience of mental health problems
• critique and strengthen knowledge about mental health

> The McPin Foundation

• a dedicated, user-focused mental health research organisation
• now employs core staff and a bank of peer researchers for contracted projects

Internationally, many individuals are working as service user researchers

Question 15

What appeared in edited collections as a result of prominent research groups with user researchers from the 1990s onwards?

Answer 15

Sociological critiques of conventional mental health research

• drawing on epistemology derived from feminism and post-colonial studies
• reframing the ‘double identity’ of researcher/mental health service user into a specialist knowledge broker

Question 16

What’s the issue with a range of organisations and individuals that have become engaged in mental health service user or survivor research?
How does Russo (2012) explains it?

Answer 16

They have varied theoretical agendas, aims and methods.

Russo (2012): two different perspectives on psychiatry
1. “service user” or “consumer”
- focus on reforming the existing system
vs.
2. “survivor of psychiatry”
- puts the entire psychiatric system in question

Question 17

What is the difference between user involvement in research and patient participation in clinical care-planning?

Answer 17

User involvement in research means

• service user researcher
• peer researcher
• expert by experience

Patient participation in clinical care-planning means

• patient
• client

Question 18

What is the noun “service user” criticised for?

Answer 18

• value laden (biased)
• restrictive
• implies passivity
• disregards aspects of an individual’s identity

Also fails to capture those who qualify for, but are unable/unwilling to access support

Question 19

What are the three types of service users described by McLaughlin (2009)?
Why is his approach increasingly controversial?

Answer 19

1. Direct service user:
   - recent or current experience
2. Indirect service user:
   - involved in studies focused on related services outside their geographical area
3. Alternative service user:
   - experience of using services in one specific domain (e.g. breast cancer)
   - may contribute to general panels on health and welfare issues

BUT this is increasingly controversial for its assumed similarity and generalisability of service user experience

Question 20

What is user involvement, as seen with the SURE Research at the IoPPN?

Answer 20

> Set of techniques rather than a single approach
SURE Research implements a collaborative management structure
- user-led evaluation of Cognitive Remediation Therapy (CRT) -> highlighted problems, contributed to service refinement
- systematically reviewed ECT -> highlighted memory loss, challenged official estimates of patient satisfaction
=> Generated influential studies and shaped treatment guideline

> Elsewhere, user involvement in mental health services has evolved to shifts in institutional cultures

Question 21

What does translational research consist of?
How was the translational pathway initially understood?
What do researchers and policy makers argue about it?

Answer 21

> Translational research: convert findings from basic research more efficiently into clinical practice
Initially understood as unidirectional (moving from the lab to the clinic)
BUT, researchers and policy makers increasingly argue that it is a complex two-way process
-> knowledge from the bedside must feed back into the laboratory to have real and lasting success

Question 22

What are the benefits of service user generated knowledge in translational research?

Answer 22

> Assessing the acceptability and feasibility of proposed changes
Evaluating and enhancing the validity of outcome measures
Highlighting areas of concern to service users
Improve organisational efficiency

Question 23

What are the key approaches now explored in the context of consumer studies of ECT?

Answer 23

> Patient-centred Systematic Reviews

• exploring consumers’ perspectives
• peer-reviewed literature
• grey literature and qualitative date

> Patient-reported Outcome Measures (PROMs)

• SURE’s method: generate PROMS entirely from the user perspective to reflect their views and priorities
• ‘Discrete Choice Experiment’: inform drug developers of key side-effects to avoid

> Focus Groups

• variety of topics and at different stages of the research process
• 6-8 people, one facilitator with experience of in-patient care and also a service user
• group meets twice for accurate capture of their views
• > recorded conversation (with consent) + thematic analysis using NVivo software

> Expert Panel

• one drawn from focus group members and one independent
• amending and refining the measure to make sure language and layout are appropriate/consistent

> Feasibility study

• make sure a (new) measure is easy to complete
• groups of approximatively 10, iteratively refined (again and again) until all respondents find it easy to complete

Question 24

What were the outcomes of the Patient-centred Systematic reviews on ECT?

Answer 24

• Conventional research showed much higher levels of satisfaction than this user research
• New NICE guidelines on ECT were developed, especially around information and consent, including risk of memory loss
• User research can have a direct effect on national policy

Question 25

What are the challenges to user-led research and user-produced knowledge?

Answer 25

> Marginalisation of ‘experiential’ knowledge pervaded other sectors

• emphasis on deficit and pathology
• served to justify the segregation and institutionalisation of the ill or impaired
• > Service user testimony was devalued and omitted from psychiatric knowledge production
• > Service user testimony has a focus instead on assumptions and interpretations of these experiences and views

> There is a suggestion that user-research is biased, anecdotal and over-involved

> User-led research challenged conventional hierarchies of status and knowledge
It is excluded form key discussions
Denied access to the training and ressources by others
Collaborative projects nearly always lead by professors of psychiatry or psychology
Subtle meaning of user-produced knowledge
- “Are you a researcher or are you a patient?”

Question 26

What is the counter-argument to the suggestion that user-research is biased, anecdotal and over-involved?

Answer 26

All research comes from a certain standpoint.

Service user researchers are often more explicit than conventional / mainstream researchers about these inherent biases.

Question 27

How can “mad knowledge” be an oxymoron, following the argument of Michel Foucault on Enlightenment and the mad?

Answer 27

Michel Foucault argued:
The Enlightenment characterised by a privileging of reason and the birth of science which positioned the mad as the embodiment of unreason, unwilling or unable to become the docile bodies required to labour in the Industrial Revolution
-> if the epitome (typical ex) of knowledge is reason, “mad knowledge” is an oxymoron

Question 28

How do evidence-based medicine hierarchies rank studies?

Answer 28

Studies are ranked based on:
- strength and precision of their research methods

It is generally agreed that:
Systematic reviews and meta-analyses > Lay expert opinion or anecdotal experience

Question 29

What is the Cochrane Collaboration?

Answer 29

An international voluntary organisation that prepares, maintains, and promotes systematic reviews of the effects of health care.

Question 30

Who created the Recovery model?
What are the oppositions to this model?
What potential justification does this model present?

Answer 30

> Recovery model developed by service users in the UK and the US who wanted to:

• avoid damaging side-effects
• assume greater self-management

> Recently integrated into health care

> Professional interest in the recovery model lead to complaints from service users that believe its goals have been modernised to an unhelpful and sometimes unrealistic extent
- ideals such as “I can manage complex tasks unaided” or “I can find employment” regarded as unattainable for some people

> Endorsing a model of individual responsibility may appear to justify the reduction or closure of services.