1. Development and trial of a peer-supported self- management programme for people leaving CRT care Brynmor Lloyd-Evans, UCL Jonathan Piotrowski, Avon and Wiltshire NHS Partnership Trust

2. 1. DEVELOPMENT OF THE TRIAL INTERVENTION

3. Thanks to.. All the CORE team and participants, and in particular The CORE service user and carer advisory groups The PSWs in the pilot stages: Jacqui Lynskey, Pauline Edwards, David Hindle, Mary Plant, Peter Caul, Katherine Barrett CORE Prinicpal Research Clinician: Alyssa Milton Islington Crisis Resolution Team

4. Complex Interventions Framework Medical Research Council framework of complex interventions (Campbel, 2000).

5. CORE Peer facilitated Self Management Programme

6. Theory: Why peer support after crisis care? CRT care experience often ending abruptly (Hopkins & Niemiec, 2007) Insufficient attention to strategies for maintaining well being and avoiding future crises (Hopkins & Niemiec, 2007). Revolving door > within a year of a period of CRT care ending (Local audit data, London CRT). Employment of peer support workers is promoted within NHS services > e.g. NHS Confederation Implementing Recovery through Organisational Change project Only 25.9% CRTs employ service users (survey data)

7. 2 systematic reviews Peer support for SMI (Lloyd-Evans et al. 2014) No compelling evidence for the effectiveness of peer support Peer support may help with recovery outcomes such as hope, empowerment Little evidence about the most effective types of peer support Self-management for SMI (Milton et al. submitted) Some short and long-term benefits from self-management (symptoms, QoL, hope) Some successful programmes were peer-facilitated  A peer-delivered self-management programme is a reasonable way to try to support people following a mental health crisis

8. CORE Peer facilitated Self Management Programme

9. Stage 2a) Acceptability: Initial Consultation Qualitative interviews with service users (n =41) Explored: –Acceptability of peer support after for crisis service discharge –Design (content; timing; delivery etc.) Thematic analysis (Nvivo9)

10. Findings Stage 2a) Acceptability: Initial Consultation

11. Findings High acceptability: Positive views towards such a programme (only 6 of 41 indicated not wanting) Content: Mutual Support, practical support & mental health related self management support. Modes of delivery: All acceptable but 1:1 preferred with flexibility of where, when etc. When: After Crisis Discharge Peer Qualities: lived experience very important (empathy, complement professional support)

12. Stage 2b) Acceptability: Wider Consultation Selection of a planned programme Based on Perkins and Repper – Recovery Plan ©SWLSG Presentation to stakeholders Qualitative focus group feedback on this design by: –Service users (5 groups; n=20) –Carers (2 groups; n=12) –CRT clinicians (5 groups; n=41). Thematic analysis (Nvivo9)

13. Stage 2b) Acceptability:Wider Consultation Additional findings Acceptable to all groups Some differing focus for each stakeholder groups: –Service Users PSW qualities (e.g. lived experience/empathy); Peer training; content (self management & befriending) –Carers Continuity of care; Getting the right PSW; content (practical support) –CRT Risk management/supervision; content (befriending)

14. CORE Peer facilitated Self Management Programme

15. 3) Feasibility: piloting a peer facilitated self management intervention WHO RECEIVED: CRT Service users WHERE: Own homes or public spaces or NHS premises WHEN: Started ASAP once CRT support ends WHO DELIVERED: PSWs (with training and weekly group supervision) LENGTH: 10 weekly meetings (approx. 1hr) WHAT: Structured activities workbook (Julie Repper & Rachel Perkins) – flexibility in delivery Moving on after a crisis Keeping Well Managing ups and downs Goals and Dreams Managing your Personal Recovery Information

16. Piloting: 2 stages a)Pre-pilot (Autumn 2012) 11 participants 4 PSWs Run from UCL Qualitative evaluation only b) Formal pilot trial (May – December 2013) 40 participants (20 receive peer support) 5 PSWs Run by Islington CRT Testing formal trial procedures

17. Stage 3: Participant Findings 27 qualitative interviews (Nvivo9) (9 pre-pilot; 18 pilot) Overall positive experiences Self management book acceptable/useful but under utilised “ Well, I think the fact that you ’ ve obviously trained your people very carefully in order to do this work. And I think the workbook is a very good idea, because even though I don ’ t look at it every single day I know…….”

18. Stage 3)Participant findings (cont) Relationship with PSW most valued. “ It was more being with a human, not with someone who learned things from the book. Because I am an intelligent person ; I read lots of books and all that, but sometimes it ' s actually better to learn from a person who learnt from life, who went through things in life and experienced them organically, not just memorised them or something ”

19. Stage 3) PSWs’ feedback – 2 focus groups Providing peer support is a powerful experience Reliable, group supervision is crucial Skills required to use a standard workbook individually (e.g. start where most relevant, use more visual media) High levels of need and symptoms among people discharged from the CRT Ending support requires thought and planning

20. So What? Peer Support > high acceptability but RCT will help determine effectiveness in this setting (Primary Outcomes Admissions Secondary Outcomes Service Use; SU Satisfaction; Continuity of care; Recovery; Health-related quality of life; Psychiatric Symptoms) Self management > good platform but needs flexibility Using qualitative stakeholder views plus lit. reviews to inform design > good practice Complex Interventions > dynamic development process Medical Research Council framework of complex interventions. (Craig 2008)

21. 2. A PEER SUPPORTED, SELF MANAGEMENT PROGRAMME: TRIAL PROTOCOL

22. Research question: For people leaving crisis resolution teams, how effective is a peer- provided self-management intervention when compared to self- management intervention alone, in improving;  readmission to acute care  satisfaction with services  inpatient bed use  time to readmission to acute care  self rated recovery  psychiatric symptoms  Cost effectiveness  Loneliness  Social Networks  Neighborhood social capital

23. Setting Crisis resolution teams in 5 NHS Trusts Camden and Islington South London and Maudsley North East London Avon and Wiltshire West London &/or Surrey and Borders Covering inner city and more mixed urban and rural areas

24. Participants 440 in total (88 from each site) Participants must a. Have been on a CRT caseload for at least a week b. Have the capacity to provide written informed consent c. Understand the intervention delivered in English d. Enter the study no more than 1 month after discharge

25. Participants 440 in total (88 from each site) Participants must NOT a. Present high risk to others b. Be discharged outside of the CRT catchment area

26. Participants In order to achieve a sample of participants who are broadly representative of the general population, 50% of people who participate in the trial will have Schizophrenia or other psychoses Bipolar disorder

27. Intervention Up to ten sessions with a peer support worker Concluding within 3 months of leaving CRT care Meetings may take place at a participants home, NHS premises or other suitable locations. A self-management workbook, aimed to help Setting personal recover goals Plans to re-establish community functioning and support networks Identify early warning signs and an action plan Planning strategies and coping resources to maintain wellbeing after crisis.

28. Process The study design is a single blind randomised controlled trial. The 88 participants from each of the study sites will be randomly allocated to receive either A peer-provided self-management intervention (n=44) Or The self-management intervention alone (n=44)

29. Process Recruitment and Consent Potential participants will be identified by clinical staff from the CRTs. Any limitations due to risk will be discussed with the clinical team Information will be provided to participants -Over the phone by a researcher -Through a posted Patient Information Sheet -A face to face meeting At this meeting if the potential participant would like to take part written informed consent will be taken.

30. Process Baseline interview Once written informed consent has been obtained a study researcher will complete all baseline measures as a structured interview. The interview will take about 1 hour to complete. The participant will be offered a £20 gift to acknowledge their help with the study

31. Process Randomisation and blinding Once the baseline interview has been completed participants will be allocated at random to receive either -peer-provided self-management intervention -or the self-management intervention alone. Study researchers will not be told which group the participants are allocated to. The participants in the study will know if they are receiving peer support…

32. Process Delivering the intervention -Up to 10 sessions -Within 3 months The peer support workers will receive -Training covering the self management workbook, safety confidentiality, self disclosure, boundaries, engagement and listening skills & cultural sensitivity. -Regular group supervision from within the CRTs -Additional optional supervision with the study team -Local CRT induction – Lone working, confidentiality, safety

33. Process Follow up interview At least 4 months after entry into the study, and as close to this point as possible. Information provided around the study again Written informed consent taken £20 gift Data from patient records Data not collected as part of the structured interviews will be collected from the informatics teams within participating trusts. These data will be anonymised.

34. Outcomes  readmission to acute care  satisfaction with services  inpatient bed use  time to readmission to acute care  self rated recovery  psychiatric symptoms  Cost effectiveness  Loneliness  Social Networks  Neighborhood social capital

35. Looking more closely at peer support How closely do the peer support workers match the people they support? a) Diagnosis b) Experience of hospital admission c) Gender d) Ethnicity e) Age Participant-rated Therapeutic Alliance Participant-rated PSW Recovery-orientation Will these factors impact upon outcomes?

36. Use of the recovery plan Will there be any difference between those who receive peer support and those who do not in how much the recovery plan is discussed or read? Making a written plan How often was the recovery plan used or written in peer support sessions? Will use of the recovery plan affect participants’ outcomes

37. Acknowledgement: This presentation presents independent research 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.