Title: Making positive moves: What support do people with Learning Disabilities need to remain living in the community after moving under the Transforming Care Programme. A qualitative longitudinal study.
Funder: Department of Health and Social Care

Abstract: Background Approximately 2,500 people with learning disabilities are in inpatient settings in England (National Audit Office (NAO), 2017) which may restrict their ability to live a normal life (Head et al, 2018) and increase the risk of being exposed to abuse and mistreatment (BBC, 2011). The yearly cost of inpatient care for people with learning disabilities is estimated to be approximately &pound;115,000 per person more expensive than community living (NAO, 2017). Significant funding has been provided to Transforming Care (TC) since 2012 to move people with learning disabilities out of inpatient settings. However, there is limited evaluation of TC, with a lack of research focused on the perspective of service-users and what helps people to sustain community placements. Aims The aim of this study is to understand the perspective of an often marginalised and discriminated group by conducting longitudinal semi-structured interviews with people with learning disabilities who have moved out of hospital through TC. The study will examine the impact on well-being of living in the community and identify the key factors that support and undermine the ability to sustain community living over time. Methods The methodology will be based on Grounded Theory. 27 people who have moved under the TC programme will be recruited from 3 NHS services. After consent is established, two interviews will be conducted with each participant, and analysed beginning with line by line coding and progressing to focused coding. One year later, participants will be re-contacted, consent reassessed and participants asked to take part in two further interviews to explore changes over the preceding year. Data analysis will continue to a more conceptual level and a theoretical model developed to vividly describe experiences of community living, explore well-being and understand the complex interaction of factors over time that support the ability to sustain community living. Timelines for delivery The study will take place over 3 years. Results from initial data analysis will be available on our website Making Positive Moves after 12 months, and the final theoretical model available from 30 months. Best practice guidelines, training materials and publication in peer reviewed journals will be produced in the final year, culminating in a national conference in month 36. Impact and Dissemination Our website and conference will be key national resources to engage service-users, families, carers and professionals and will be widely advertised through social media, charities and NHS England. In the short to medium term, we anticipate the study findings to have influence in shaping national policy and guidelines on the delivery of TC and provision of community placements for those with learning disabilities. In the medium to long term we aim for our best practice guidelines and training packages to be embedded in the practice of Learning Disability teams and community placement providers. We anticipate this will improve the experience of moving out of hospital and living in the community for people with learning disabilities, as well as reducing the risk of long term readmission with significant cost-saving implications for the NHS.

Lay abstract: Aim and Background The 2012 Transforming Care Programme was set up to make sure people with learning disabilities who were living in hospital were supported to move into their own homes. The programme stated that people with learning disabilities should have the same rights and opportunities as anyone else. These include the rights to have a home within their community and live satisfying and valued lives. In 2016 we interviewed 11 people with learning disabilities about their experiences of moving out of hospital. We developed a moving process model which showed that people had more restricted and often negative stories about themselves while in hospital. Moving out helped people to feel they were being given a chance for new opportunities and their stories about themselves became more positive. Our aim now is to research what helps people with learning disabilities to stay living in the community long-term after leaving hospital. Design and Method We will interview 20 people with learning disabilities that have moved from hospital to the community at two time points, one year apart. We will invite people to identify a key support person (KSP) to be interviewed with them. We will record the interviews and transcribe and analyse them. We will try to understand what helps and hinders people with learning disabilities to live well and to stay living in the community. Patient and public involvement One of our co-applicants is an expert by experience advisor, working in the Hertfordshire Transforming Care Team, supporting people to move out of hospital. He and one of the 2016 participants have reviewed this application. Dissemination We will: Set up a website when the research begins for people with learning disabilities, their families, carers and professionals to share the findings, provide guidance documents, training packages and reports. Organise a national conference and invite participants to present the findings from the research with stakeholder groups. Disseminate the findings through academic journals and conferences. Develop a set of quality standards to support the CQC when assessing community living for people with learning disabilities. Provide accessible reports to the national Transforming Care Delivery Board, to inform their guidance for services. This will help improve policy and practice about supporting people in the community after moving out of hospital. Share reports with charities and groups supporting people with learning disabilities. For example The British Institute of Learning Disabilities (BILD) and Hertfordshire Social Care and Health Teams. Benefit Finding out what helps people to successfully live in community placements will mean we can produce guidance and clinical tools that improve healthcare delivery for people with learning disabilities, their families and care staff, reduce admissions and readmissions to hospital, and improve quality of life in the community.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH