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Improving end of life care for people with learning disabilities

St Georges nurse consoling a woman

Pioneering research by Dr Irene Tuffrey-Wijne, into end of life and palliative care for people with learning disabilities, has helped transform services and change public policy in the United Kingdom and the Netherlands. The study, led by Dr Tuffrey-Wijne, revealed people with learning disabilities were less likely to receive pain relief and palliative care than the rest of the population, and they were often less able to communicate their physical and emotional needs.

As a result of this research, the United Kingdom Department of Health issued guidelines prioritising the needs of people with learning disabilities are better identified and addressed. The research findings have been used to drive the development of new services, as well as to develop a training package for GPs. A website has also been developed with advice and resources for health and social care professionals on how to break bad news to people with learning disabilities.