Service User Research Enterprise (SURE)
The Service User Research Enterprise (SURE) undertakes research that tests the effectiveness of services and treatments from the perspective of people with mental health problems and their carers. SURE aims to involve service users in a collaborative way in the whole research process: from design to data collection, through to data analysis and dissemination of results.
SURE was launched in 2001 on the premiss that the research priorities and perspectives of service users were different from those of people who work in mental health services, and from those of people with solely an academic background. It is now one of the largest units within universities in Europe to employ people who have both research skills and first-hand experience of mental health services and treatments. This experience adds a wealth of understanding and alternative perspectives to the local, national and international research they carry out.
History and organisation of SURE
In 2000, a conference was convened by the joint IoP/South London & Maudsley Trust (SLAM) Research and Development Steering Group to establish the research priorities of service users: the top priority identified was service user involvement in all aspects of research. This conference led to the launch of SURE, and also to the development of the Consumer Research Advisory Group (CRAG) (which comprised users of SLaM mental health services, and which was supported by SURE). CRAG sent two representatives to every meeting of the influential Research and Development Steering Group and its views therefore contributed towards the shaping of the joint IoP/SLaM research agenda.
SURE has two co-directors: Dr Diana Rose, a service user researcher, and Professor Til Wykes, a clinical academic, which gives the unit a balanced management structure.
Til Wykes, a Professor of Clinical Psychology and Rehabilitation, heads the Centre for Recovery in Severe Psychosis (CRiSP) in the IoP’s Department of Psychology. CRiSP has a tradition of involving service users in its research and laid the foundations for the launch of SURE.
Dr Diana Rose is Europe’s first Senior Lecturer in User-led Research. She is a social scientist and a mental health service user. Before joining the IoP, she pioneered user-focused research for seven years at a London based charity.
’Stakeholder Participation’ in the new National Institute for Health Research (NIHR) Biomedical Research Centre for Mental Health
In April 2007, the South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, King’s College London received funding to set up a new National Institute for Health Research (NIHR) Biomedical Research Centre for Mental Health (BRC). The Biomedical Research Centre for Mental Health will find new ways of preventing, diagnosing and treating mental health problems by ensuring advances in biomedical research are used to benefit service users and carers.
One of the research themes within the BRC is stakeholder participation. This theme will ensure that the participation of two key stakeholder groups, service userse and carers, along with other groups who are frequently under-represented in research on grounds of gender, age, culture and ethnicity, are at the heart of the work of the BRC for Mental Health.
The stakeholder participation theme as a whole is co-led by Professor Til Wykes (Co-Director of SURE) and Professor Graham Thornicroft. Professor Wykes and Dr Diana Rose (the other Co-Director of SURE) lead on service user involvement within the theme. Dr Felicity Callard is the Senior Research Fellow for the Stakeholder Participation theme, and works within SURE.
The BRC for Mental Health is committed to the full engagement of people with experience of mental ill health in its research. The stakeholder participation theme within the BRC has established a Service User Advisory Group to offer advice and expertise to the BRC as a whole and to each of its research themes (which cover most mental health diagnoses in both adults and children, and include the dementias and addictions).
Research conducted by SURE
SURE’s first national study – Consumers’ Perspectives on ECT – was a Department of Health-commissioned systematic review of what patients thought about electroconvulsive therapy. The results influenced 2003 guidelines from the National Institute for Health and Clinical Excellence (NICE) about obtaining consent to ECT and giving information about the treatment. See NICE website on ECT. An analysis of research papers, reports by user organisations and first hand testimonies from patients showed that about half the people receiving the treatment felt they had not received enough information about the procedure and its common side effect of memory loss. About a third felt they had not freely consented – as they must do by law – even when they had signed a consent form. Two of the researchers involved in this project had received ECT themselves.
Since then, all SURE’s research projects have continued to centre on issues important to service users: it undertakes studies relevant to the priorities of services users and carers, and studies which have a substantial amount of consumer involvement. SURE continues to employ people with experience of using mental health services to build both the capacity of the unit and increase the number of service user researchers at the IoP. It publishes the results of its research not just in academic journals, but also in formats and journals accessible to service users.