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 twelve 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 from 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.
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 twelve 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 from 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.
| Original language | English |
|---|---|
| Journal | British Journal of Learning Disabilities |
| Publication status | Accepted/In press - 12 Dec 2025 |