Case study:

23 November 2011

Improving end of life care for adults with learning disabilities

Key points

Nottinghamshire Healthcare Trust and Sherwood Forest Trust have created an end of life care pathway for people with learning disabilities which is helping to raise awareness of their needs as well as giving mainstream professionals greater support.

The aim of the pathway, which covers all six NHS trusts within Nottinghamshire as well as private and voluntary services, is, among other things, to ensure that an individual with a learning disability receives improved care at the end of life, to improve joint working and to decrease emergency admissions.

The pathway uses the Nottinghamshire pathway for all diagnosis. It is available in both an electronic and paper format with links to the mainstream pathway, and all identified tools, service directories and documents relating to learning disabilities. The aim is to support professionals and carers who may need information and advice about the person’s learning disability and the care required.

A Learning Disability Resource pack has been developed to sit alongside the pathway and is included within the end of life folder provided to GP surgeries and care homes.

The project team, which is part-funded by the NEoLCP, has also produced an accessible version of an information prescription for individuals with a learning disability, which also contains an easier read resource list. This will be available both on hard copy and electronically via the county’s information prescription website. An easier read leaflet has also been developed explaining what an information prescription is.

The team also produced a DVD about receiving bad news in conjunction with local learning disability drama group, ‘Make it Happen’ from Willow Woods and Redoaks Day Centres. The aim of the DVD is to raise awareness of how to support someone with a learning disability and what resources are available.

An end of life section has been developed which will be contained within the individual’s Personal Health File/Health Action Plan, which is currently offered to all individuals with a learning disability in Nottinghamshire. This will be provided when the Gold Standard Framework is initiated.

An awareness campaign across primary and secondary care has been launched which aims to help people recognise when someone with a learning disability may be approaching the end of their life. Other resources have been developed to support the pathway such as an easier read preferred priorities of care and pain profile.

It is hoped the new pathway will lead to decreased emergency admissions and improved support for mainstream professionals involved with an individual with a learning disability during end of life care. In addition support staff in residential units should feel more confident in providing end of life care and so reduce inappropriate use of health services.

All this will be tested in follow-up evaluation, which is already showing an increase in confidence in support staff. The project team is also planning to run a rolling programme of training as well as developing its health professional awareness campaign and information prescriptions.