The Service User Facilitator - Service Users Delivering Treatment M Barker and F Lobban Presented by F Lobban On behalf of: PARADES Psychoeducation and Peer Support for Bipolar Disorder This presentation presents independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG ). Further support was received from primary care trusts, mental health trusts, the Mental Health Research Network and Comprehensive Local Research Networks in the East Midlands and North West England. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

The Service User Facilitator Contents Background Recruiting to the role The co-facilitator Emergent findings The ‘so what’

The Service User Facilitator Background Multi-site Randomised Controlled Trial (RCT) delivering group psychoeducation and group peer support in the management of Bipolar Disorder Service users took on a co-facilitator role alongside two health professionals for each group; 10 service users and 14 health professionals co-facilitated 5 sets of groups in East Midlands; 6 sets of groups in North West

The Service User Facilitator Recruiting to the role Selecting people Training people Supervising people

The Service User Facilitator The co-facilitator Facilitators led the psychoeducation group through a structured curriculum The peer support group remained un-led and largely un-structured Facilitators were allowed to agree and develop their own roles within each facilitator team

The Service User Facilitator Emergent findings (1) Challenges “The other therapists have very clear roles, they were professional roles whereas mine seemed to be a dualism of service user and facilitator. How much facilitating do I do? How much service user do I do?” (Service user facilitator) “the thought of being overwhelmed and saying ‘Hey, I’m a facilitator now’... I just couldn’t get my head round it...’ (Service user facilitator)

The Service User Facilitator Emergent findings (1) Challenges “…it’s very important to [get support] by... reliving parts [of my mental] history and then worrying about what people would think... And then stepping back but the more important thing is that the person doing it has got to be far enough along in their own recovery to do it properly.” (Service user facilitator)

The Service User Facilitator Emergent findings (2) Benefits “...we don’t necessarily always come up with the answers but it’s good to share those feelings and experiences.” (Service user facilitator) “both groups said they felt it was useful, you know… I felt I was a useful part of it. You know I wasn’t just sat there, I was definitely part of the team you know...” (Service user facilitator)

The Service User Facilitator Emergent findings (3) Others’ perceptions of the role “...I think they respected her role more than anyone else’s... because she knew what they knew...’ (Health professional facilitator) “...sometimes they’d want somebody to talk to but they don’t necessarily want to talk to us so [they are] like a middle ground...’ (Health professional facilitator)

The Service User Facilitator Emergent findings (3) Others’ perceptions of the role “…here was someone who was brave enough to stand up in front of a group and tell us about her experiences and also to help us to draw out some of our own… it was quite inspiring…” (Service user participant) “...I think it was reassuring in the early stages to have somebody who was a service user who was obviously trusted [in such a role]” (Service user participant)

The Service User Facilitator The ‘so what’ Including such roles help to empower and inspire those with bipolar disorder Those with bipolar disorder are not only important for research, but have a vital role in developing others’ capabilities to self manage – to ‘stay well’ Not plain sailing – each facilitator will face individual challenges based on background and experience Carefully planned training and ongoing formal support and supervision is required

The Service User Facilitator - Service Users Delivering Treatment On behalf of the PARADES team: M Barker 3, F Lobban 1, S Jones 1, S Peters 2, L Riste 2, D Mayes 1, R K Morriss 3 1 School of Health and Medicine, Lancaster University 2 School of Psychological Sciences, University of Manchester 3 Division of Psychiatry and Community Health, University of Nottingham/Nottinghamshire Healthcare NHS Trust