Case study:

02 August 2007

Development of a resource pack for those caring for or supporting people with a learning disability at the end of life in Northumberland

Key points

Two learning disabilities experts in Northumberland, Tyne & Wear have combined to produce a resource pack to help support people with a learning disability at the end of life.

The guide contains targeted, easily accessible and practical information, including resources to:

Improve the management of specific symptoms

Identify how the use of end of life tools can reduce unnecessary hospital admissions

Ensure coordinated working between different organisations and agencies

Give confidence to carers, particularly those who are family members or working in care homes

Improve bereavement support.

The detailed pack, written by Dorothy Matthews, a Macmillan nurse for people with learning disabilities, and Lynn Gibson, manager of the Northumberland physiotherapy service for people with learning disabilities, in partnership with the University of Edinburgh, was launched in February.

It is aimed at people working in health and social care, families and carers who provide crucial support in the final stages of life for people with learning disabilities.

The decision to produce the guide came after two successful conferences in the area identified a need for learning materials to signpost available services and to address a range of issues relating to end of life care.

So far feedback has been very positive with many saying the resource fills a previously unmet need.

The pack is available as a hard copy, on CD Rom and as a download from a number of websites, including the Department of Health End of Life Care Programme website.