Case study:

24 July 2007

Providing palliative care for people with learning disabilities in Northumberland Tyne and Wear NHS Trust and St Oswald’s Hospice

Key points

A group of clinicians from Northumberland Tyne and Wear NHS Trust and St Oswald’s Hospice has managed to improve access to palliative and cancer care services for people with learning disabilities who have a life-threatening illness.

The service was launched in 1997 by a small group of dedicated professionals who recognised the unmet palliative care needs of people with a learning disability.

It was clear they were getting poor access to diagnostic, treatment and palliative care expertise and that professional and lay carers’ awareness, skills and knowledge of these people were poor.

The group’s main achievements over the past decade have been:

In 2000 the team was awarded NHS Beacon Status for innovative practice.

In conjunction with Macmillan Cancer Support, the trust appointed the UK’s first and, to date, only Macmillan nurse in learning disability in 2005.

Together with Fiona Randall (Consultant in Palliative Medicine) the team developed a framework for making CPR decisions in any clinical setting.

This framework is now being used in several NHS trusts in the UK.

The team produced the Disability Distress Assessment Tool (DisDAT) which has created a process for identifying and managing distress in people with severe communication difficulties. DisDAT is being used in increasing numbers of learning disability teams.

The North East Strategic Health Authority chose learning disability as the example group for its end of life programme.

The team has now produced a resource pack for families/carers entitled

What can we do?

A guide to offering care and support to people with a learning disability at the end of life.

The group has faced many difficulties because the needs of people with learningdisabilities are so poorly understood.

These include communication difficulties between services, lack of choice and a mismatch between resources and need. The complexity of the client group also poses problems.

Most clients present with a wide range of problems including challenging behaviours, severe communication difficulties and multiple physical health problems.

These can lead to late referrals, variable access to investigations and late treatment.

In addition there is a misperception by mainstream services that this client group will not or cannot comply with investigations and treatment.

Future plans include setting up an outreach palliative care team for people with progressive neurological illness and for those with learning disability or mental health problems who develop a life-threatening illness. Meanwhile the formation of a new combined trust is encouraging the team to develop an interdisciplinary outreach team for people with complex needs who have learning disability, mental health or progressive neurological disease.