People with learning disabilities are dying without proper palliative care, often because no one identifies their needs until it is too late. National mortality reviews show that deaths among people with learning disabilities are frequently unplanned and poorly managed, yet no studies have examined what service models actually work for this group. This project addresses that gap by mapping how palliative care is—or is not—delivered to people with learning disabilities across England. The research team will analyse health records to compare care trajectories between people with and without learning disabilities, conduct case studies of up to 20 individuals approaching end of life, and review files of up to 40 people who have died. They will interview commissioners, managers, families, and staff across four localities to identify barriers and replicable good practice. If successful, the project will produce actionable recommendations, practice exemplars, and easy-read resources for health and social care services. Commissioners and providers will gain concrete guidance on how to identify palliative needs earlier, coordinate care more effectively, and ensure people with learning disabilities receive the same quality of end-of-life support as anyone else.
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RESEARCH QUESTIONS 1. What are the service delivery models and interventions within health and social care services that (a) enable timely identification of the palliative and end of life care (PEOLC) needs of people with a learning disability (LD) and (b) are effective in meeting those needs? 2. Within a range of service exemplars, what are the barriers and enablers to providing accessible, high quality PEOLC to people with LD; and what are the replicable elements of good practice? BACKGROUND National mortality reviews show that the deaths of people with LD are often unplanned for and poorly managed. Several policy makers have recognised unacceptable inequities PEOLC provision for people with LD. There have been no studies into the availability, nature or effectiveness of service models or interventions. AIMS To improve accessibility and quality of PEOLC for people with LD by producing robust guidance for health and social care services, with recommendations and accessible resources. OBJECTIVES 1. Map PEOLC trajectories of people with LD, using health record data bases 2. Develop an understanding of existing evidence 3. Explore, compare, and contrast PEOLC services for people with LD, with regards to (a) current models of care, commissioning practices and service coordination; (b) timely identification of PEOLC need; (c) individualised PEOPLC provision/interventions 4. Co-produce actionable recommendations, tools and resources for service providers and commissioners 5. Build capacity and produce guidance for future inclusive research with people with LD METHODS This co-produced study involves a diverse team (including co-researchers with LD) in academic and service provision settings. There are 4 Work Packages (WP): WP1: Retrospective cohort analysis of the Clinical Practice Research Datalink, comparing people with and without LD in order to detect inequalities: registration of PEOLC need; survival time after PEOLC registration; healthcare utilisation; palliative care referrals. WP2: A rapid scoping review to inventorise what is known with regards to (a) identifying need, (b) assessing and meeting need, (c) coordination and delivery of local services and interventions (e.g. staff training). WP3: Within 4 localities (Study Sites) in England: (A) Interviews with commissioners and senior managers in services, stakeholder conversations and local stakeholder engagement events; (B) Ethnographic case studies of people with LD currently approaching end of life (n=up to 20); and retrospective case reviews of people with LD who have died (n= up to 40), using family/carer/staff interviews and case file analysis; (C) Development and testing of workable approaches for enabling systematic identification of PEOLC need, using Experience-Based Co-Design. WP4: PPI activities, engagement and outputs, including blogs and webinars; work with self-advocates with LD to co-produce outputs. ANTICIPATED IMPACT AND DISSEMINATION The beneficiaries are people with LD, families and carers; the health/social care workforce; commissioners, policy makers and national/local authorities; research communities; and the wider public. Outputs include written actionable recommendations and policy guidance; a series of 12 practice exemplars; a logic model; materials for varied audiences (including easy-read); social media activities, website, blogs and webinars; conference presentations; OpenLearn resources for health/social care professionals and carers.
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