Responding to Winterbourne View: Developing the design, commissioning, and provision of specialist community-based services for adults with learning (intellectual) disabilities and mental health and/or behavioural needs.
Type of research:
Prospective longitudinal mixed-methods study/service mapping/health economic costing.
Background & Scientific Rationale:
The Winterbourne View scandal has raised concerns about the ability of community learning disabilities teams (CTLDs) to support people with learning disabilities (including autism spectrum disorders) and additional mental and/or behavioural needs to remain in their local communities. Through the extension of an existing prospective longitudinal, mixed-methods, study of five CTLDs in Cambridgeshire, and a service mapping study of CTLDs in the East of England, we developed the existing, and very limited, relevant evidence base. The aim was to identify and disseminate information about ‘best practice’ in the design, commissioning, and provision of robust CTLDs that would better meet the needs of a vulnerable group of service users and their carers/social care providers and minimise the use of ‘out-of-area’ hospital or social care placements that disrupt the lives of a very vulnerable and disadvantaged group of men and women and those who care about them. The broad aim was to inform the design, commissioning and provision of robust community-based services for adults with learning disabilities and additional mental health and/or behavioural needs, both in the Eastern region, and nationally. This was achieved through the extension of data collection on the Service User Journey and Stakeholders’ Experiences study in order to examine the way that members of CTLDs across Cambridgeshire work with service users referred for an ‘intervention’ (assessment, treatment, management or support) relating to their mental health and/or behavioural needs and its impact on clinical and quality of life outcomes. Data collection relating to each service user took place over 12 months, rather than the 6 months used at the time. The addition of a further time point, at 12 months, provided greater opportunities for evaluating the longer-term, as well as the short-term, impact of the interventions that were carried out and provided valuable information to inform the development of community-based services.
The broad aim was to inform the design, commissioning and provision of robust community-based services for adults with learning disabilities and additional mental health and/or behavioural needs, both in the Eastern region, and nationally.
This was a mixed-methods prospective quantitative and qualitative study
Key findings and outputs:
This project, which was not carried out anywhere else in England, addressed important aspects of the issues identified by the Department of Health in its response to the Winterbourne View scandal (¹,²). It produced evidence, supported by publications in peer-reviewed academic journals, to inform the design, commissioning, and provision of robust local, community-based services, both across the East of England, and nationally, to support people with learning disabilities and additional mental health needs and/or behavioural needs (including those whose behaviour has, or is likely to, put them at risk of contact with the Criminal Justice System), to prevent out-of-area/independent hospital placements, and promote the return of service users whose needs it should be possible for CLTDs to meet locally.
Clare ICH., Madden EM, Holland AJ, Farrington CJT, Whitson S, Broughton S, Lillywhite A., et al. (2016). ‘What vision’? Experiences of team members in a community service for adults with intellectual disabilities. Journal of Intellectual Disability Researchhttp://dx.doi.org/10.17863/CAM.787 (PDF).
Farrington C, Clare ICH, Holland AJ, Barrett M, and Oborn, E. Knowledge exchange and integrated services: experiences from an integrated community intellectual (learning) disability service for adults. Journal of Intellectual Disability Research2015; 59: 238–247. doi: 10.1111/jir.12131.
For a ‘BITE’ sized summary of the research, please see:
For further information on this project, contact Dr Isabel Clare firstname.lastname@example.org , Consultant Clinical & Forensic Psychologist, NIHR CLAHRC East of England; and Cambridge Intellectual & Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge
¹ Department of Health (2012a). Transforming care: A national response to Winterbourne View Hospital: Department of Health Review Final Report. London: Department of Health.
² Department of Health (2012b). DH Winterbourne View Review: Concordat: Programme of Action. London: Department of Health