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

2. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. User involvement in research Meeting their needs More appropriate research questions More appropriate methodologies Capture experiences Better and more relevant outcomes

5. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. 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. Removing Barriers. Achieving Change. next …no really …….volunteers please gtndurcan@scmh.org.uk 07957 595 593