Service User Involvement in Prison Health Research

1. Service User Involvement in Prison Health Research Chiara Samele, Head of Research Graham Durcan, CJS Programme Lead

2. Background • Commissioned by the PHRN • Jointly funded by SCMH • Identify models of service user involvement in prison health research • Literature Review • Consultation with experts

3. Review aims • Identify the methods or models by which service users and carers can become meaningfully involved in prison health research by examining • current methods for involvement in prison health service development; • methods for service user involvement in mental health research • Identify the particular challenges and barriers of service user involvement in prison health research; and • Assess how the practical difficulties of service user and carer involvement in this area can be overcome.

4. User involvement in research • Meeting their needs • More appropriate research questions • More appropriate methodologies • Capture experiences • Better and more relevant outcomes

5. In other words… • The less distance there is between direct experience and its interpretation the more accurate, reliable and less distorted it is likely to be. (Beresford 2005)

6. The literature • Using a systematic methodology • Ongoing • Results • Very limited number of published studies • Some literature in related mental health field (forensic mental health)

7. The literature • Michael Coffey- Researching service user views in forensic mental health: A literature review (2006) • Faulkner A & Morris B - User Involvement in Forensic Mental Health (2003) • Banongo E et al - Engaging Service Users in Evaluation and Development of Forensic Mental Health (2005) • Rob Jayne - Service user engagement in prison mental health in-reach service develop (2006) • Nurse et al – Focus groups with prisoners (2003)

8. The expert consultation • Just starting these… • …Volunteers please? • Prisoner interviews (n=98) in five West Midlands prisons • Part of another review • Publication – next year • Useful insights

9. Local findings • secondary care • Whilst some changes required - a major overhaul is not • Need for development of broader consultative role • Service gaps in both services (e.g. family work, groups, working with PTSD) • Inreach– weak on social care and psychological elements of care • Service user feedback is hugely complimentary and positive about these services. • Primary care is the major gap/weakness in provision • Anything but client centred • Considerable unmet need and some need missed • Few RMNs and operating in generic role.

10. Barriers • NHS ethics and research governance • more scrutiny over past year • lack of confidence in prisons research • Vetting – CRB & CRO • security training • 10 – 12 months…perhaps unique…but • The easy bit = data collection (5 weeks) • organising interviews around prison routines – difficult • prisoners very open and willing to be interviewed

11. The prisoner experience • How involved are prisoners in their health care? • A mistrust of prisoners – the ‘default’ • Most prisoners just wanted someone to talk to someone • Family/carer work – a huge need for • Disclosing and dealing with trauma • Help at night • Meaningful activity • prisoners report being ‘ejected’ from prison • prisoners report considerable anxiety over leaving prison… many predict their return • Positive impact of inreach

12. next • …no really …….volunteers please gtndurcan@scmh.org.uk 07957 595 593