Service User and Carer Development in Secure Settings

Established: May 2007; first meeting convened for July 2007.

Convenor (Chair): Dr Dominic Beer, Consultant Psychiatrist and Honorary Senior Lecturer, Oxleas NHS Foundation Trust, Dartford (e-mail: dominic.beer@oxleas.nhs.uk and douglas.macinnes@canterbury.ac.uk)

Members:
The membership of the group reflects the wide range of research expertise that is required to successfully cover service user and carer developments in secure settings including members who have expertise in BME issues in secure services (Prof. Kam Bhui), developing service user and carer research capabilities (Prof. C E Adams, Prof P Lelliott, Dr V Pinfold), women’s secure services (Dr J Parrott), high secure settings (J Noak), low secure settings (Prof. T Craig and Dr Beer), medium secure settings (Drs J Craissati and P Brown), prison mental health (Drs J Parrott and Forrester), psychiatric intensive care units (Dr S Dye), forensic psychiatric nursing (Prof. C Brooker, Prof. P Rogers, Dr MacInnes), and in learning disability care (Dr Vicky Turk). The group also encompasses a national perspective with members coming from a range of institutions in England and Wales.

Joint-convenors:
Dr Dominic Beer - Consultant Psychiatrist Oxleas NHS Foundation Trust and Honorary Senior Lecturer, Institute of Psychiatry, University of London; Dr Doug MacInnes - Reader in Mental Health, Canterbury Church University
Others:
Professor Clive Adams - Professor of Psychiatry, University of Leeds; Professor Kam Bhui - Centre for Psychiatry, Institute of Community Health Sciences, Barts & The London School of Medicine, Queen Mary University of London; Professor Charlie Brooker - Professor of Mental Health & Criminal Justice, University of Lincoln. Honorary Professor, Health Services Research Unit, Institute of Psychiatry; Dr. Philip Brown - Consultant Forensic Psychiatrist and Associate Medical Director at Hutton Centre, St Luke’s Hospital, Tees and North East Yorkshire NHS Trust, Middlesbrough; Professor Tom Craig - Professor of Social & Community Psychiatry, Health Services Research Department, Institute of Psychiatry.  Honorary Consultant Psychiatrist, South London & Maudsley NHS Trust; Dr Jackie Craisatti - Head of Forensic Clinical Psychology, Oxleas NHS Trust;
Dr Sarah Davenport – Consultant Psychiatrist, Women’s High Secure Service Ashworth Hospital; Dr Stephen Dye - Consultant Psychiatrist, Psychiatric Intensive Care (Substance Misuse) Buckinghamshire Mental Health NHS Trust; Dr Andrew Forrester - Consultant in Forensic Psychiatry at HMP Brixton, South London, Oxleas NHS Foundation Trust; Professor Paul Lelliott - Director Royal College of Psychiatrists Research Unit
James C Noak - Deputy Director of Nursing West London Mental Health Trust (Forensic Services), Hon Research Worker at the Institute of Psychiatry, London; Dr Janet Parrott - Consultant Forensic Psychiatrist & Clinical Director, Directorate of Forensic Psychiatry & Prison Mental Health, Oxleas NHS Trust, Honorary Senior Lecturer, Institute of Psychiatry, University of London; Dr Vanessa Pinfold – Head of Research and Policy, Rethink severe mental illness; Dr Vicky Turk - Joint Clinical Director & Head of Clinical Psychology Specialty (Learning Disabilities), Oxleas NHS Trust

Devolved nation members:
Professor Paul Rogers - Professor of Forensic Nursing, University of Glamorgan

Service user involvement:
There were discussions with a number of users and carers about this proposal and their comments incorporated into the proposal prior to its submission. In addition, one of the members of the group is a representative of a leading national service users and carer organization.

The research group includes four nominated representatives (two service users and two carers). Two service users (one from Oxleas Foundation NHS Trust and one from West London Mental Health Trust) with experience of high, medium and low forensic settings have already agreed to participate and negotiations are also in place for two carers, with experience of secure settings, to also join the group. In addition, service users and carers from the collaborating units will be invited to join the local unit group. The local service users will receive adequate training and support to enable them to collaborate in the projects in a meaningful way as advised in the MHRN SURGE Good Practice Guidelines.

Remit and Aims:
A major problem with research in secure settings is that the vast majority of service users and carers do not engage in the development of the research questions or in the conduct of the research. Consequently, much of the research undertaken does not examine service user/carer views and experiences. This importance has been recognised by various official documents and the National Programme on Forensic Mental Health R&D which has identified the following priority areas:

• increasing service user and carer involvement in developing services and
• developing the research and development base in forensic mental health care.

The intention of this CRG is to develop research questions surrounding two topics.

1) develop research examining and evaluating the care received by service users and carers in secure settings, including examining service user and carer satisfaction, research into their quality of life, projects examining the issues, ward atmosphere, and determining their attitudes and experiences of their care and treatment by secure services. It is envisaged that both quantitative and qualitative studies would be developed around these themes.

2) develop the research capabilities of service users and carers to undertake research in secure settings. The main focus of this topic would be to develop the skills, expertise and confidence of service users and carers to undertake research in secure settings through developing and supporting consultative, collaborative or user led projects. This would allow service users and carers to develop projects that could be seen as scientifically valid as well as develop projects that are centred on their own areas of interest.

Current Status & Future Plans:

6 month update (Sept 06):
· The first meeting clinical research group was held on the 6th July in Oxleas, with 12 members and the Terms of Reference and work plan for the group was agreed. The group discussed and brainstormed ideas for research topics and offered an opportunity to identify members’ areas of interest which could be used to establish collaborative links to develop proposals for submission for research funding.
· 10 writing groups have been proposed and the group agreed to concentrate on 2 projects initially: 1) looking at weekly service user groups and risk areas 2) exploring the boundaries of the recovery framework in forensic settings.
· A study to examine whether increased service user satisfaction within forensic-patient settings would affect clinical outcomes, behavioural disturbance and ward atmosphere was submitted for the second round of calls for proposal to the Research for Patient Benefit programme. This was short-listed but not successful.
· A study on increasing carer satisfaction in forensic settings was submitted for the third round of calls for proposals to the Research for Patient Benefit programme. The outcome of this bidding process will be published in October.
· The group plans to submit a third study titled ULeSISS A Randomised Control Trial to Increase User Levels of Satisfaction in Secure Settings for the fourth round of calls for proposals. The expression of interest was submitted on the 10th August.
· Members of the clinical research group are collaborative partners in all three studies.
· The third SUCESS meeting will be held on the 7th November in London.

Progress report March 2008