1. CORE: Public Involvement and Piloting Peer Support David Hindle and Jacqui Lynskey Presentation for CORE Symposium 27 th May 2014

2. Public Involvement Overview 1)Pre – application and working groups (plus Co-ordinator) 2)Interviews and focus groups 3)Fidelity measure development 4)Fidelity Reviews 5)Resource Kit and future involvement 6)Peer Support work (PSW) 7)Some examples of involvement influences

3. Pre – application and Working Groups Service user consultant (Alison Faulkner) was a co-applicant Two consultations with service users and carers carried out with support of the (former) Mental Health Research Network Once started a Service Users working group and a Carers working group established through interview: –Service users initially 13, now 10 –Carers initially 7, now 7, including adding two more members 16 meetings held (10 separate) and 6 joint, plus training Working Group members central part of involvement – paid £15phr Public Involvement Coordinator 1 day a week NHS band 5 (nurse rate)

4. Interviews and Focus Groups Working Groups members assisted development of interview topic guide Interviewers and Focus Group facilitators for service user and carers came from the working groups – training was provided 40 service user interviews and 20 carer interview conducted Focus groups regarding Peer Support also conducted by working Group members 3 sets of supervision provided

5. Data analysis Thematic analysis of stakeholder interviews assisted by working group members – training provided Interview transcripts read through in order to aid giving advice on the coding frame used for analysis Coding frame for analysis of interviews refined Advice given on write-up of stakeholder interviews

6. Fidelity measure development Participation in concept mapping process, including concept mapping meeting and reducing number of items post meeting Advice on the development of the fidelity measures (first and second versions) – including at least 4 consultations Involvement in the development of questions for service users and carers questions for the fidelity measures Participation in reliability testing of measures

7. Fidelity reviews Working Group members (9 – including PPI Co-ordinator) integral part of the 3 person teams- training was provided. 4 other team members also undertook Peer researcher role Conducted the interviews with service users and carers (6- 12) Participated in other aspects of the review depending on time factors Integral to the scoring of individual items

8. Resource kit and Future involvement Advice on website and content Recorded testimonials for resource kit Material for resource kit from service user/carer perspective The working group will continue to the end of the research

9. Peer Support Working group input into development Pre- pilot 4 PSWs and Pilot 5 PSWS Essential part of refining procedures and inputting into workbook contents Importance of effective supervision Assisted in training of PSWs for pilot and main trial Over 25 PSWs will be involved in the main trial

10. Some examples of involvement influences Paying carer interviewees and Focus group members Not recording PSW Sessions as part of process monitoring Identifying importance of relationships within the analysis of interviews with service users and carers Having a Peer researcher on each of the Fidelity reviews Resolving issues around the Peer Support work Final thought – qualitative v quantitative

11. Piloting Peer Support Jacqui Lynskey Presentation for CORE Symposium 27 th May 2014

12. My experience of delivering the programme An amazing experience! Why I chose to take part –Have worked for 19 years in what is now called peer support – this is special –Fills a gap between the CRT and ‘nothing’ as it feels in Primary care –10 sessions of an hour –Build up relationship, experience –An opportunity to work together – think together – talk together and do things together –Work together using a tool that can and does make a difference – helping peer to believe they can have control –Grow together

13. What did people get from it? The peers we worked with –Continuity with one person –Someone who understands without having to be told –Shared experiences –Role model – You can do it and therefore so can I –Use of a self management tool and help in working with it (the big difference) –Learning and believing that they can make a difference, that they have some control The peer support workers (PSW) –Developing self – my learning, my moving on –Not only do we give, we get back from our peers –Working as a PSW in an area that is so needed –Understanding myself better -

14. What worked well Bonding that built up between the PSWs through the training – the huge trust and ability to work and think together and support each other when situations became challenging and we were unsure The training – including cascading down Reviewing the tool ++ The relationship that built up between the peer and the PSW The willingness and ability of our peers to work and to share with us Exploring together – sharing feelings, concerns, learning to believe ‘I can’ Personal development for both – seeing our peers grow Knowing that it is ok to ask, it is ok to lean on someone else, it does not mean dependent for life but as Ron Coleman said, it is interdependency – something which all humans do, we are social animals. We lean sometimes and others also lean on us sometimes The support ++ from Bryn and Alyssa and the research team

15. What was challenging? Filling in application forms! Surviving the occupational health process and the intrusive questions – we have to be service users with our own experiences and yet.......... High level of support need of peers Lack of accurate information of available support and other structures including CRT Tension between sticking with self management tool and helping to wok on area of need that went beyond what was initially envisaged Supervision fulfilling our needs – as people with lived experience we look at issues differently e.g. elements of control over missed session if DNA even for a good reason Beginnings – going into someone’s home for the first time Endings – very difficult for both peer and PSW

16. Considerations of the future Where do we want to go from here A model to take forward into other trusts We are people with a mental health problem and not a mental health problem Importance of good supervision

17. Comments from service users who took part in the pre- pilot – our peers, on what the experience has meant to them “And also, my PSW was very accepting, so they would accept you without judging, and they would look for things that would...that I would like, not force me to think that I wouldn’t like them. But especially they were very good at listening and they, in a way, were inspiring as well... Because they sometimes said something, from their own experience, and it was always...it wasn’t like they were telling me things but it was always just little things but it was relevant to how I felt. My PSW would make a suggestions where I can go or what can I read and watch out, that would be always sort of spot on”

18. “ It’s just circumstances that was beyond my control, and beyond (peer’s) control, yes? But my PSW has had a big impact in my life, and I can visualise this person, yes and they look a really nice person. It’s only in my mind, but I can visualise them. They were never, ever abrupt. Never, ever abrupt, it was just a very loving, caring voice, yes.” “My PSW kept pushing me forward to think about my kids and to think about the future to come and the better to come and all that, and it kind of lifts me up a lot” Comments – 2......................

19. Comments - 3 “My PSW helped me to get other help and different help.... If it wasn’t for them, I wouldn’t get that other help so much” “And I was very sceptical about that to begin with, before I was paired with someone. Because I thought, oh God, it will be just about like the blind leading the blind and actually it wasn’t at all, it was the complete opposite. So, I’m very grateful to the crisis team for putting me forward.”

20. Any Questions? This presentation presents independent research undertaken as part of the CORE Study, funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Reference Number: RP-PG- 0109-10078). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.