Originally presented by Rita Long, Service User Researcher with the Spectrum Centre for Mental Health Research, on September 24th as part of the CREST.BD 2014 Webinar Serires.

1. How to fit a square peg in a
round hole
A service user researcher perspective

2. Who are we?
Spectrum Centre for Mental Health Research, School of Health
and Medicine, Lancaster University
http://www.lancs.ac.uk/shm/research/spectrum/
Co-Director – Steve Jones, Prof of Clin Psy
Co- Director – Fiona Lobban, Prof of Clin Psy
Main focus – translational research in mental health – mainly
bipolar disorder and related conditions
Multidisciplinary – clinical psychology, nursing, social science,
service users

3. Some Examples

4. If we achieve these aims
• People with bipolar will have
– A choice of effective psychological therapies
– A choice of therapist-delivered and self-delivered
care
• As more people access these new approaches
it should
– Reduce distress and increase coping
– Help people re-engage with wider society
including the workplace
• A person with lived experience of the condition
the team are researching
• Has an active interest in research
What is a ‘service-user researcher’

5. …………it’s more than just living with a
condition
A few questions:
– Are all researchers who have lived experience of a
condition not service user researchers?
– Does this mean that researchers who live with a
mental health condition have just not ‘come out’?
– What makes a ‘service user researcher’ different
to a researcher who lives with a mental health
condition?

6. In practise what does a
‘service user researcher’ do
• Uses her lived experience to inform research
• Utilises personal links with statutory and non
statutory parties and organisations to work
collaboratively with researchers from the
inside
• Encourages and supports groups and
individuals to get involved in research from a
peer perspective

7. Why employ ‘service –user
researchers?
Service users
• Create an environment where staff are reminded of service user
issues e.g. language that’s used
• Understand bipolar disorder from the inside which may help break
down barriers with clinicians and people with lived experience
• Ensure our work in anchored in the priorities of people who will
receive the interventions
• Provide novel ideas and perspectives
• Challenge perceived wisdom
• Help to cut through obstacles to engagement in research
• Describe and disseminate findings in accessible ways
• Keep staff up to date with the real world!!

8. What are the challenges?
University Perspective
• Have clear roles and responsibilities that leaves
space for the role to develop
• Learn how to work with staff who may not talk
the same language
• New concept. Benefits of user involvement not
always understood
• Challenges academics to think out of the box
• Lack of career progression

9. And there’s more…………..
• Learning in academic institutions has traditionally
been assessed using exam methods as opposed
to transferable skills and knowledge
• Lack of career progression risks not attracting and
retaining staff with the experiences and qualities
to do the job
• How to support staff who may be becoming
unwell. What are the implications for the rest of
the team? (if any)

10. Service-user researcher perspective:
• May be first experience in a university environment
• No good practise template to follow
• The nature of the role exposes you to some difficult
stories………….
• Training with regards to setting boundaries etc. is not
as yet available
• Understand that you will not please all service users.
You have one opinion and others are entitled to theirs
(not always easy)

11. • Be prepared to be challenged by service users on
your role and authenticity
• Being a lone service user in a team can be a
lonely place to be
• No service user researcher support network (as
yet)
• No formal system in place that recognises work
experience and achievements
• Set up systems that support your needs in a
positive way and that managers feel confident to
implement

12. Where are we up to?
• More and more organisations employing ‘service
user researchers’
• Spectrum working on tool to measure impact
• Including service users at meetings etc.
academics etc. are observing the impact for
themselves
• Support network through twitter ongoing
• This network will look at ways to recognise
experience and knowledge outside the academic
system

13. And of course…………………….
@spectrumcentre and @crestBD
are international