Learning disabilities: End-of-life care guide published

    A guide to help social care professionals provide end-of-life care for people with a learning disability has been published by Mencap and Keele University

    Living and Dying with Dignity  is accompanied by a reference card with 12 key points for professionals to remember when caring for patients. An easy-read version is also available.

    The free guide is the result of a two-year palliative care project set up in North Staffordshire in 2006, which developed and tested best practice in end-of-life care.

    Project co-ordinator Heather Morris said Mencap’s 2007 Death by Indifference report found that people with a learning disability were not given equal access to healthcare.

    ‘Confusing and frightening’

    “Dealing with death is a confusing and frightening time for anyone, and people with a learning disability have just as much right to die with dignity as anyone else,” Morris said.

    “This guide will ensure people with a learning disability and their family and friends have the information to ensure they receive high-quality care at the end of their lives.”

    Dr Sue Read, of Keele University’s School of Nursing and Midwifery, said many end-of-life care services failed to meet the needs of people with a learning disability.

    “A lot of people with a learning disability die without knowing they are dying because it hasn’t been explained to them clearly,” she said. “It can sometimes be difficult for them to recognise that they are ill, so serious ill-health can be overlooked.”

    More information

    The guide

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