Presentation by Toby Brandon and Caroline Kemp at the fourth ESRC funded seminar on participatory research with people with learning disabilities

1. ‘Training away the barriers’:
mental health service users,
carers and academics
experience of a research course.
Toby Brandon and Caroline Kemp
ESRC Conference:2014

2. 2
This presentation presents independent research
funded by the National Institute for Health
Research (NIHR) under its Research for Patient
Benefit Programme (Grant Reference Number
RfPB PB-PG-0808-17269).
The views expressed are those of the authors and
not necessarily those of the NHS, the NIHR or the
Department of Health.
The research team are grateful for the ongoing
support of the NIHR
ESRC OU 2014

3. Introduction
 Work based on a research project funded by the NHS.
 The question: Is there a pathway to mental health recovery
through care coordination?
 Mental health service users and carers became the
researchers designing the project and the tools to be used,
conducting the interviews, analysing the findings and
disseminating the conclusions.
 A short course was designed to help them gain the skills and
knowledge needed to be able to take an active and meaningful
role in the research.
 Move from service users and carers being ‘involved’ in the
project to ‘leading’ the project ‘mad people interviewing mad
people’!
 In this presentation we consider the impact of the training for all.
ESRC OU 2014

4. Training and support
Rigorous process Learning together
Valuing each other
Service User and Carer Led Research:
Principles for Good Practice
ESRC OU 2014

5. Barriers to Training
 Coming to a university can make people nervous.
 People may have bad memories.
 People often think research is something other people to do.
 Their own experience of being researched ‘on’ may not have
been good.
 They may not have confidence around reading and writing.
 People may be concerned about having to work with others.
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7. Breaking Barriers
 Value people through providing a quality course.
 We all have research skills.
 Present the university as a ‘community resource’.
 Support people to learn how to learn.
 Support each other/buddy systems and mentors.
 Instil that everyone is an expert on something.
 Build in a creative writing session.
ESRC OU 2014

8. Training Course in
Mental Health Research
 What’s so good about research anyway?
 Values in research: doing research, ‘on’, ‘with’,
or ‘for’ people. ‘Nothing about us without us!’.
 How to find information?
 How to spot good and poor quality research?
 Measuring ‘things’ and listening to people.
 Doing research responsibly and safely.
ESRC OU 2014

9. The Course Routes
10 Weeks
4 Weeks
Researcher
Finish
Finish
Certificate of
attendance
Informal
Interview
10 University
Credits Level 4
Part 1 (core)
Education
Part 2 (optional)
Training
Ongoing Call
Back Day Training
(session 4 hrs. a week)
Course
Handbook
ESRC OU 2014

10. Runaway Training!
 Original content of course was designed by the
steering group then it evolved under the
influence of the research group.
 Call back days.
 Invitation went out to other researchers and
experts to present around Risk, Service
Provision, Recovery (WRAP).
 Learning took place at a level and practical detail
beyond that required by PhD students.
ESRC OU 2014

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12. Impact of Training: beyond education and study
 Developing a research community
 Becoming trainers themselves (e.g. informed
consent)
 Joining steering group.
 Gain confidence.
 Peoples personal recovery journey.
 People getting jobs.
ESRC OU 2014

13. Conclusion
 Changing identities –
service user and carer to student to researcher
 Responsiveness and flexibility are key.
 Breaking down barriers between mental health service
users and carers and the university is a two way learning
process.
 Giving up some control is vital.
 Ultimately our work concerns blurring the boundaries
between participants in research and researchers.
 Moving to more co production.
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14. POEM?
THANK YOU
ANY QUESTIONS?
ESRC OU 2014

15. The project received the Best Service User Involvement Plan
Award at the National Institute for Health Research, Mental
Health Research Network, Scientific Research Conference
on the 21st April 2010.
Contact email: toby.brandon@northumbria.ac.uk
Steering/Research Group:
Helen Atkin, Deb Helme, Nicola Armstrong,
Alison Flaherty, Caroline Kemp, Lisa Matthews, Shula
Ramon, Jan Wallcraft, Louise Thomson, Mick Hill, Oliver
Wood, Nicola Armstrong, Liz Bowman, Alasdair Cameron,
Paula Edwards and Simon Douglas
ESRC OU 2014