Developing effective service models for Adult Palliative and end of life care for People with a Learning disability (DAPPLE)

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, 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 a learning disability; and what are the replicable elements of good practice? BACKGROUND

National mortality reviews show that the deaths of people with a learning disability are often unplanned for and poorly managed. Several policy makers have recognised unacceptable inequities PEOLC provision for people with a learning disability. 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 a learning disability by producing robust guidance for health and social care services, with recommendations and accessible resources. OBJECTIVES 1. Map PEOLC trajectories of people with a learning disability, using health record data bases

2. Develop an understanding of existing evidence

3. Explore, compare, and contrast PEOLC services for people with a learning disability, 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 researchers with a learning disability) 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 a learning disability 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 four 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 a learning disability currently approaching end of life (n=up to 20); and retrospective case reviews of people with a learning disability who have died (n= up to 40), using family/carer/staff interviews; (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 a learning disability to co-produce outputs. ANTICIPATED IMPACT AND DISSEMINATION

The beneficiaries are people with a learning disability, 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.