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

INVOLVE ConferenceNottingham 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


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


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


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


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


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


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 people’s

experiences


Service User Involvement FMH R&D Programme

Membership of Programme’s 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


Forensic Service User InvolvementRampton Hospital

Established in 1912 Average patient popn - 400 Average stay - 7½ yrs 5 directorates

– mental health services

– learning disabilities

– women

– personality disorder

– dangerous and severe personality disorder

Ashworth

Broadmoor

Rampton


Forensic Service User InvolvementRampton 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



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



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


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


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


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


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

Documents

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