1. INVOLVE Conference Nottingham 10-11 November 2004 Service User Involvement in Forensic Research Sue Spiers, Kathryn Harney and Clair Chilvers The UK National Forensic Mental Health Research and Development Programme

2. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Mental Health R&D Programme Department of Health funded research commissioner Funds research which supports the provision of mental health services for people with mental disorders who are offenders or at risk of offending Services are provided in secure and community NHS and criminal justice settings

3. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Mental Health R&D Programme Established in 1999 Time-limited programme until 2009 Supported over 90 projects –Project grants –Post-doctoral fellowships –PhD fellowships / bursaries –MSc bursaries –Systematic and scoping reviews

4. INVOLVE Conference Nottingham 10-11 November 2004 Service User Involvement Research Governance Framework for Health and Social Care - DH March 2001 Research is pursued with the active involvement of service users and carers including, where appropriate, those from hard to reach groups such as the homeless Call for active involvement of service users and carers at every stage of all research

5. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement We can no longer treat prisoners as passive recipients of healthcare. If the healthcare service is to provide an effective service then prisoners need to play an active role Birmingham 1997 British Medical Journal 315(7099):65-6 Further research into all aspects of prison healthcare delivery would benefit from a user perspective. Shaw 2002 FMH Expert Paper – Prison Healthcare

6. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement (Ex)/prisoners who have experienced mental health problems need to be recruited, trained in research skills and provided with appropriate support to enable them to contribute Brooker et al 2003 DH – Mental Health Services and Prisoners: A Review User Involvement in Forensic Mental Health Research and Development Faulkner and Morris 2003 – FMH Expert Paper

7. INVOLVE Conference Nottingham 10-11 November 2004 Why A User Perspective? Ensures that the aims of the research are meaningful to service users Maximises relevance of research More likely that the right questions are asked Ensures that outcome measures are meaningful Identification of appropriate and ethical research methods Improves the quality and validity of evidence Provides a valuable perspective shaped by peoples experiences

8. INVOLVE Conference Nottingham 10-11 November 2004 Service User Involvement FMH R&D Programme Membership of Programmes Advisory Committee Panel of service users who act as peer reviewers Developed a user involvement induction pack, a user- friendly research glossary and dedicated service user peer review forms Commissioned an expert paper looking at forensic user involvement Commissioned projects focussing on user involvement Ensure user involvement in our commissioned research

9. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Rampton Hospital Established in 1912 Average patient pop n - 400 Average stay - 7½ yrs 5 directorates –mental health services –learning disabilities –women –personality disorder –dangerous and severe personality disorder Ashworth Broadmoor Rampton

10. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Rampton Hospital Patients Council Established 1997 Agreed constitution with the hospital 12 members elected from Patients Assembly Reserved seats for women, learning disabilities and ethnic minorities Elected Chair and Vice Chair Facilitated by advocacy and representation from management

11. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Rampton Hospital Patients Council Contact advocacy services Initial talk with Council Provided information Short introduction to research methodology Linked in with researchers in Rampton Kept management and security team informed of our work

12. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Rampton Hospital Patients Council What are we asking the Council to do? We provide a short lay summary of the research proposal Review form asks for: –evidence of service user involvement –does the research address the needs of service users –will the research benefit service users Facilitated session Council gives consensus opinion and ranks proposals Payment

13. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Process First reviewing session took place on 22 June 2004 Council reviewed 4 proposals concerning research in high or medium secure services Extra assistance was provided both before and during the meeting for Council members with learning difficulties Meeting was properly chaired and also facilitated by myself, a forensic researcher and members of the advocacy team to ensure that the voices of all council members were heard

14. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Outcome Very lively meeting Council members were very interested not only in the user involvement aspects of the research but the research itself Able to arrive at a consensus opinion on the proposals Despite being articulated differently the overall concerns of academic and forensic service users were similar Feedback from the Council has been positive and they have expressed their wishes to repeat the process

15. INVOLVE Conference Nottingham 10-11 November 2004 Forensic Service User Involvement Issues Level and detail of information provided What is service user involvement? Adaptation of the process to patients in medium secure units and prisons

16. INVOLVE Conference Nottingham 10-11 November 2004 Acknowledgements Mary Vickers and her staff – MACA Rampton Hospital Dr Chris Evans - Consultant Psychiatrist, Rampton Hospital Janette Oakley – Research Assistant, Rampton Hospital Dr Mike Harris – Director of Forensic Services, Rampton Hospital The Management team at Rampton Hospital The Patients Council, Rampton Hospital