Why you should read this article:

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To be aware of the challenges of delivering good-quality end of life care to people with learning disabilities

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

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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.