Areas of Expertise (7)
People with Learning Disabilities
End of Life Care
Coping With Loss
Professor Irene Tuffrey-Wijne is Professor of Intellectual Disability and Palliative Care in the Centre for Health and Social Care Research at Kingston University. Her research explores end of life care for people with learning disabilities and issues such as facing death and coping with the loss of others. Current projects include future-planning to support older people with learning disabilities who live at home and an international study on the nature of palliative palliative care for those with intellectual disabilities. Irene chaired the Palliative Care for People with Learning Disabilities Network (helping practitioners to learn from each other) and chaired the judges for an annual award for excellence in end of life care provision for people with intellectual disabilities.
Irene also chaired the European Association for Palliative Care (EAPC) Taskforce on Intellectual Disabilities. The Taskforce aims to build on international collaboration to advance knowledge and practice. She has written several books including How to break bad news to people with intellectual disabilities: a guide for carers and professionals and Living with learning disabilities, dying with cancer: thirteen personal stories. She has also written a series of pictorial guides to support people with intellectual disabilities (and their families and carers) during the COVID-19 pandemic. Irene serves on the editorial boards of the Journal of Applied Research in Intellectual Disabilities and the British Journal of Learning Disabilities. In her earlier career she trained and worked as a nurse and worked in a hospice as a Macmillan cancer care nurse.
Media Mentions (3)
People with learning disabilities ‘failed’ by broken healthcare system, says palliative care expert
Professor Irene Tuffrey-Wijne (pictured), the world’s first professor of palliative care for people with learning disabilities, said these figures highlight just how vulnerable people with learning disabilities are during the pandemic, and has called for urgent action.
People with learning disabilities are more likely to die from coronavirus
The report also revealed that young adults with learning disabilities, aged 18-34, are 30 times more likely to die of Covid-19 than those without. Professor Irene Tuffrey-Wijne said these worrying figures highlighted just how vulnerable people with learning disabilities are during a pandemic.
Higher number of coronavirus deaths in people with learning disabilities highlights need for immediate action
Medical Xpress online
The report also revealed that young adults with learning disabilities, aged 18-34, are 30 times more likely to die of COVID-19 than those without. Professor Irene Tuffrey-Wijne said these worrying figures highlighted just how vulnerable people with learning disabilities are during a pandemic.
Industry Expertise (2)
Writing and Editing
Pioneering Nurse Award (professional)
2020 St Christopher’s Hospice
Postdoctoral Research Award (professional)
2017 European Association of Palliative Care
Award in First Line Management (professional)
2010 Chartered Management Institute
King's College London: Diploma of Higher Education, Nursing Studies (Palliative Care) 1996
King's College London: BSc, Nursing Studies 1999
Maastricht University: PhD, Palliative care for people with intellectual disabilities 2007
- Journal of Applied Research in Intellectual Disabilities : Editorial Board Member
- British Journal of Learning Disabilities : Editorial Board Member
Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping reviewJournal of Intellectual Disability Research
Shared decision‐making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision‐making about their care and treatment.
Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!”British Journal of Learning Disabilities
Within learning disability research, it is important to involve people with learning disabilities at all stages, but there are limited opportunities for them to learn about the research process or to gain research skills.
Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide surveyJournal of Intellectual Disabilities
This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers.
Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK‐wide survey of intellectual disability support staffJournal of Applied Research in Intellectual Disabilities
Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement.
Death and DyingPromoting the Health and Well-Being of People with Learning Disabilities
This chapter helps readers to understand what happens when someone reaches the end of life. It explains what good palliative care and end-of-life care looks like and how it can be achieved. It focuses on the following areas: involving the right services; managing pain and other symptoms; providing emotional, spiritual and social support; involving and supporting family and friends; advance care planning; shared decision-making; information and communication; death, and knowing what to expect; and bereavement support for all those left behind, including family, friends and staff.