Developing an end of life care pathway for people with learning disabilities through partnership working
Intended for healthcare professionals
Evidence and practice    

Developing an end of life care pathway for people with learning disabilities through partnership working

Mary Codling Primary healthcare lead nurse, LD, Berkshire Healthcare NHS Foundation Trust, Wokingham Hospital, Reading, England
Jane Knowles Health team lead, Community Learning Disability Team, Berkshire Healthcare NHS Foundation Trust, Wokingham Hospital, Bracknell, England
Laura Myers Practice educator, Sue Ryder – Duchess of Kent Hospice, Reading, England

Why you should read this article:
  • To be aware of the challenges of delivering good-quality end of life care to people with learning disabilities

  • To recognise the need for partnership working between learning disability and palliative care services

  • To learn about one particular end of life care pathway being used for people with learning disabilities

There is ample evidence of inconsistencies in end of life care service provision for people with learning disabilities. In 2013, in response to the findings of the first report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, a multidisciplinary steering group - including learning disability nurses and palliative care staff - was established in Berkshire, in the UK, to support learning disability staff to provide good-quality end of life care to service users. Findings from a literature review and a retrospective audit informed the development of an end of life care pathway for people with learning disabilities.

The pathway aims to provide learning disability staff with a unified and structured approach that places the service user at the centre of care and enhances partnership working with palliative care services. The pathway prompts the development of a personalised care plan that respects the wishes of the person and their family. The pathway is now in use by community learning disability teams across the county. In this article the authors explain the background and rationale for the pathway and describe its development and implementation.

Learning Disability Practice. doi: 10.7748/ldp.2022.e2178

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

mary.codling@berkshire.nhs.uk

Conflict of interest

None declared

Codling M, Knowles J, Myers L (2022) Developing an end of life care pathway for people with learning disabilities through partnership working. Learning Disability Practice. doi: 10.7748/ldp.2022.e2178

Published online: 17 March 2022

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