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Learning disability end-of-life researcher joins Faculty of Health, Social Care and Education

Irene Tuffrey WijneAn expert in the palliative care of people with learning disabilities has taken up a new role at the Faculty of Health, Social Care and Education.

Dr Irene Tuffrey-Wijne has been appointed a senior research fellow at the Faculty, run jointly by Kingston Univeristy and St George’s, University of London.

Dr Tuffrey-Wijne’s research surrounds improving the end-of-life care of people with learning disabilities. In her new role she will continue work started in her previous position as a research fellow at
St George’s. She is currently finishing a two-year National Institute for Health Research-funded study into the factors affecting the safety of patients with learning disabilities in NHS hospitals.

Dr Tuffrey-Wijne, who was a nurse before beginning her research career at St George’s in 2005, intends to undertake subsequent research leading from the results of the current study. She expects future research to be informed by recommendations made by the Francis report into the failings of care at Mid Staffordshire NHS Foundation Trust and by the findings of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, both of which were published in March 2013.

“I’m delighted to be here,” said Dr Tuffery-Wijne. “It’s nice to be based within a faculty that teaches nursing.

“It’s important to me that all my research is clinically grounded and maintains patient involvement, and the faculty is the perfect place to do that. Whenever I begin planning a new piece of research, I ask myself: ‘What’s the point? How will this benefit people with learning disabilities and carers?’ It is crucial to me that our research outcomes are communicated and accessible to the people who are affected by it. For this reason, we always involve co-researchers with learning disabilities in all stages of the research process.”

In addition to her research, Dr Tuffrey-Wijne runs the Palliative Care for People with Learning Disabilities Network, which raises awareness of the palliative care needs of people with learning disabilities, provides a platform to share best practice, and enhances collaboration between service providers, carers and people with a learning disability.

Irene has written several books, including new guidelines on how to break bad news to people with learning disabilities. She is also a co-author of Books Beyond Words, a series of picture books designed to help people with learning disabilities navigate potentially challenging life situations. She collaborated on several Books Beyond Words titles with Professor Sheila the Baroness Hollins, professor of the psychiatry of learning disability at St George’s.

Dr Irene Tuffrey-Wjine has also recently written an editorial about meeting the needs of patients with learning disabilities published in the prestigious British medical Journal.