Service User Research Enterprise (SURE) projects
Service user representatives and employees from SURE, CLAHRC South London and other CLAHRCs at an Active Involvement in Research Day. Material depicted provided by NSUN, Alison Faulkner and Engage Visually.
4 Steps to Safety
EURIKHA (Explorations of User Research: Impact, Knowledge and Historical Approaches): Mapping the history of research, advocacy and activism by people with psychosocial disabilities, mental health service users and survivors.
This project aims to map the history, current work and impact of user-led research and knowledge produced by people with psychosocial disabilities, mental health service users and survivors.
What we understand as ‘madness’ or ‘mental ill-health’ is usually defined by authority figures such as doctors, psychiatrists/psychologists, priests, lawyers and governments. Since the 1970s, however, people who have been deemed ‘mad’ or ‘mentally ill’ by society and psychiatry – variedly known around the world as users, survivors, consumers, clients, patients, people with psychosocial disabilities, etc. – have been involved in challenging these understandings and creating new knowledge from their perspectives. Some countries have a long history of user/survivor movements while these are still developing in other countries. Similarly, the existence and development of both user involvement in research and user/survivor-led research is varied across the world.
Our project, in mapping this work, will ask the following questions:
- What is the nature, history and current status of user-led research and survivor knowledge creation globally?
- How are collectivities and organisations of people with psychosocial disabilities creating new knowledges about madness/mental ill-health?
- What has been the impact of these new knowledges?
We hope to collect this information using an online survey and by conducting one-to-one interviews with key people in user-led research and activism in different regions/countries around the world.
The project is led by Professor Diana Rose and is based at the Service User Research Enterprise (SURE) at the Institute of Psychiatry, Psychology and Neuroscience, King’s College, London.
Professor Diana Rose - Principle Investigator
Dr Liz Brosnan - Global North: user/survivor researchers
Dr Jayasree Kalathil - Global South: Current and historical knowledge producers
Ruth Silverleaf - History of user-led research in Global North contexts
CLAHRC South London: Patient and Public Involvement Theme
Medication Side Effects
Dr Dina Poursanidou, a King's Improvement Science (KIS) Fellow, is evaluating the implementation of a quality improvement programme that aims to reduce violence in inpatient psychiatric wards in South London and Maudsley NHS Foundation Trust (SLaM) and Devon Partnership NHS Trust by 50 per cent by 2017. The implementation of ‘4 Steps to Safety’ within the two Trusts is funded by the Health Foundation.
4 Steps to Safety centres on a ‘toolkit’ that uses the quality improvement methodology PDSA (plan, do, study, act) to introduce predictive risk management methods and a number of interventions designed to change professional nursing practice and ward culture – ‘intentional rounding’, for example, where nurses check with patients at set intervals and ask how they are and whether they need anything. Quality improvement facilitators trained staff on each of the wards as the programme was rolled out across both Trusts.
Dina has studied the process of implementation of the 4 Steps programme on two wards in SLaM and two wards in Devon Partnership NHS Trust. It is an ethnographic study and she observed life on each of the fieldwork wards for approximately 2 months. She has also interviewed ward staff and service users, as well as examined documents used in the implementation process
Contact: Professor Diana Rose.
Online Research Learning for Service Users and Service User Groups
This project originated when a group of people with a diagnosis of psychosis stated that the most important outcome for them of any intervention was reduction in neurlolepetic side effects. As current measures are dated, it was decided to compile a new one. We used the SURE method for developing Patient-Generated Patient Reported Outcome Measures (PG- PROMs) which involves focus groups and expert panels of people who have experienced what is being assessed and where the researchers also had that experience. This is to enable a levelling of the power relationships in research. Currently, we have a measure that is being psychometrically tested. Ultimately we will have an up to date measure of neuroleptic side effects that matter to service users.
Contact: Professor Til Wykes
SURE have created an online resource so that service users and their organisations can learn research skills and be enabled to do their own research. It draws on teaching resources that SURE members of staff have used in the past and was created in conjunction with Maudsley Learning and the Ortus Centre. There is a parallel course in research skills for front-line staff at the Maudsley NHS Foundation Trust.
For more information, please contact Professor Diana Rose.
PERCEIVE is a research project designed to evaluate innovative hospital-based mental health care interventions. Throughout the programme there will be an emphasis on service user views and experiences. The aims are twofold: to develop new methods of research and new measures that capture the acceptability and experience of inpatient care from the perspective of service users and in-patient staff, and to evaluate two health and social care interventions to determine if they are effective, cost-effective and acceptable to service users and in-patient staff.
Problems in inpatient care have been identified not only in surveys and policy documents but also in reports from service users. Solutions that have been suggested include increasing therapeutic activities, supporting staff skill development and increasing access to psychological support on wards. This research seeks to improve the experiences of service users and staff through the introduction and evalutation of the above interventions.
PERCEIVE has four major components:
- Work Package 1 is the development of a measure of service user and staff perceptions of in-patient wards.
- Work Package 2 is the development of an economic measure of inpatient services.
- Work Package 3 will evaluate, through a randomised control trial, the effects of increasing therapeutic activities on wards.
- Work Package 4 will evaluate two triage models of care.
Service User and Staff Measures
SURE's primary involvement was to create measures of the experience of living and working in acute wards - one for service users and one for nurses. We held focus groups with service users who had been in hospital in the previous two years and nurses currently working in acute wards. The service user groups were facilitated by service user researchers and the nurse focus group by nurse researchers. From these we devised two measures: VOICE for service users and VOTE for nurses. These measures were then used as the primary outcomes for the interventions. VOICE was included in the NICE evidence update as an exemplar of a user-generated assessment of the patient experience. The research is based across the London boroughs of Southwark, Lambeth, Lewisham and Croydon. The research will be completed in 2012.
The chief investigator for PERCEIVE is Professor Til Wykes and the lead investigator for SURE’s work package 1 is Dr Diana Rose. The researchers for SURE's work package 1 are Jo Evans (service user researcher) and Caroline Laker (nurse researcher).
The project is funded by the National Institute for Health Research (NIHR).
The overall aim of this project is to examine how managers have responded to user involvement activities in mental health and to identify how they facilitate or impede effective patient and public involvement. This is a novel perspective as there is great paucity of literature on what the impacts of user involvement activities have been, especially in terms of the responses of key decision makers. The study also looked at the changing practices of user involvement in mental health where more “conventional” models may be giving way to an increased focus on individual involvement, for example, in the area of personalisation.
The overall research objective is linked with a number of research enquiries, such as, gaining an understanding of the impacts of service user involvement in mental health in terms of service development, commissioning and personal benefit to users. The study aims to examine how managers and other key decision makers respond when mental health service users ask for changes in services or policies. The research also looks at the underlying assumptions, beliefs and values held by senior managers about the benefits and drawbacks of user involvement in mental health and how they individually and collectively respond to, facilitate or impede user /patient involvement.
The research design is a mixed methods one. First, we conducted a largely quantitative survey with service users and frontline staff, including social workers and community psychiatric nurses. Semi Structured interviews were also be carried out with key informants including commissioners, clinical senior managers, social care senior managers and chief executives. We conducted an ethnography of six User Led Organisations (ULOs) as they pursued goals with key decision makers trying to bring about service changes desired by them. We also studied user governors in NHS Foundation Trusts. Lastly, we conducted focus groups with service users in receipt of individual budgets. From the survey, we found that the perceived impact of user involvement was greater than had previously been thought. However, the ethnographies showed a more complex picture with many barriers to the achievement of goals by ULOs. This was true when we considered the role of user governors as well. As far as personal budgets in mental health is concerned, the project struggled to find service users in receipt of these at all.
The overarching aim of the study was to contribute to the improvement of mental health service delivery by maximising the potential for user input to service user design, planning and evaluation. Improvements in service delivery should enhance user experience and outcomes. The three key audiences for the results of from this work are thus mental health service managers, front line workers and service users who are active or would like to be active in user involvement processes.
Who is involved?
The project is being carried out by the Health Service and Population Research Department (SURE) The principal investigator is Professor Diana Rose, with the assistance of researcher Edward Omeni. The report on the study can be found at the National Institute for Health Research's website.