End of life care

End of life care is best described as providing care for a person with a non-curable condition such as cancer, Multiple Sclerosis or Motor Neurone Disease. People with a learning disability have poorer health than the general population and face particular barriers if they come to need end of life care and support.

Often, neither the person with a learning disability nor their carers are aware that they need end of life care and support. When they do recognise this, people with a learning disability face being treated by professionals who have little understanding of learning disability and consequently have less confidence in working effectively with them.

The North Staffordshire Palliative Care Project (NSPCP)

In December 2006, Mencap launched The North Staffordshire Palliative Care Project (NSPCP) as a collaborative partnership with Keele University, which was funded by the Big Lottery for two years.

The project set out to identify the end of life care needs of people with a learning disability specifically in North Staffordshire in order to develop, test and evaluate the principles of best end of life care practice. The final outcome of the project is the launch of a best practice guide for the provision of end of life care for people with a learning disability, called ‘Living and dying with dignity: the best practice guide to end of life care and support for people with a learning disability.'

The best practice guide offers help and guidance to health and social care professionals, service developers and providers to ensure the best quality of end of life care for people with a learning disability.

If you would like to find out more, or feel that this project can help you in your work with people with a learning disability, please contact:

Heather Morris
Project co-ordinator
Email: heather.morris@mencap.org.uk


 

Key messages

The best practice guide includes a checklist for positive end of life care practice, to ensure that professionals can measure the effectiveness of their organisation's work and have goals to aim for and achieve.