Exploring England's Palliative and End‐of‐Life Care Systems for People With Learning Disabilities: The Perspectives of Senior Health and Social Care Professionals and Commissioners

ABSTRACT Background There are many challenges to delivering effective palliative and end‐of‐life care for people with learning disabilities in England, with governmental and policy‐driven directives aiming to address this. This study aimed to explore how these directives are impacting care systems by investigating commissioning priorities, models of care being implemented by services, and barriers and enablers to effective care. Methods This was a qualitative study involving interviews with 12 senior health and social care professionals and commissioners of learning disability and palliative services across four areas in England. Findings The study found that people with learning disabilities may be a hidden population in many palliative care settings, with little known about their engagement with such services. A dichotomised care system was described in which health and palliative care organisations lacked learning disability skills and learning disability organisations lacked healthcare skills, often relying on a small number of individuals within a region to help bridge the dichotomy and organise end‐of‐life care across these organisations and systems. Conclusions This paper suggests that a national, policy‐driven strategy to transform palliative and end‐of‐life care is slowly impacting service delivery for adults with learning disabilities and highlights the challenges that remain for this population when nearing end‐of‐life.