Best practice for end-of-life care and support for people with a learning disability

Friday 24 April 2009

A new guide to support health and social care professionals to provide best practice end-of-life care for people with learning disability is being launched on 28 April 2009. This free guide, produced by the UK's leading learning disability charity, Mencap, and Keele University in Staffordshire, is the result of a two year project in Staffordshire funded by the Big Lottery Fund. The guide will be launched at the Upper House, Barlaston, Stoke-on-Trent, on April 28 at 11am.

The North Staffordshire Palliative Care project was set up in December 2006 to identify the end-of-life care needs of people with a learning disability, specifically in North Staffordshire. The project developed, tested and evaluated principals of best practice for end-of-life care and the outcome of the project is the guide, ‘Living and dying with dignity: the best practice guide to end-of-life care and support for people with a learning disability'.

The guide is accompanied with a reference card with twelve key points for professionals to remember when caring for patients with a learning disability. There is also an ‘easy read' version aimed at the patients themselves to make them aware of the kind of treatment they can expect.

Heather Morris from Mencap, who co-ordinated the project, comments: "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.

"Mencap's Death by indifference report highlighted that people with a learning disability do not have equal access to healthcare and the same is true with access to end-of-life care. This guide will help 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, from Keele University's School of Nursing and Midwifery, who consulted on the project, said: "Many end-of-life care services do not 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. It can sometimes be difficult for them to recognise that they are ill, so serious ill health can be overlooked. Therefore, parents, carers and health professionals need to be vigilant and look for any changes in usual behaviour and general health that might indicate the need for referral to doctors for further tests.

"Health professionals can use this guide to develop their services as it has a very practical focus. It's all about living and dying with dignity and ensuring that end-of-life care services are inclusive, accessible and supportive of people who may have different needs."

For more information and to download a copy of the guide, visit: www.mencap.org.uk/endoflifecare or call 01159 827 022.

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