Irene now works as Associate Professor at the Joint Faculty of Kingston University & St George’s University of London (UK), and at Maastricht University (Netherlands).
She leads a programme of research aimed at improving health care and end of life care for people with intellectual disabilities. She has published widely and presented her work across the world.
Irene was chair of the Palliative Care for People with Learning Disabilities Network (2008-2014) and chairs the EAPC Taskforce on Intellectual Disabilities. Apart from her book ‘How to break bad news to people with intellectual disabilities’ she is also author of ‘Living with learning disabilities, dying with cancer: thirteen personal stories’
Irene lives in London with her husband and three children.
How were the guidelines developed?
The guidelines were developed by Dr Irene Tuffrey-Wijne and her team at St George’s University of London. Both during her clinical practice and in her research involving people with intellectual disabilities who were terminally ill, Irene noticed that issues around breaking bad news were worrying families, carers, professionals. ‘Should we tell him? What should we tell, how, and by whom?’ Professionals found that the models for breaking bad news that they used for other patients were of limited use when the patient had intellectual disabilities. Families, carers and paid care staff were anxious to help the person in the best possible way without causing undue distress, but often did not know how to go about this.
As a consequence, Irene conducted a two year study focusing exclusively on the issue of breaking bad news to people with intellectual disabilities. This involved focus group meetings and interviews with over 100 people across the UK, including people with intellectual disabilities, family carers, intellectual disability professionals and health care professionals (mostly doctors and nurses). Many of these participants also gave feedback on Irene’s draft guidelines for breaking bad news, and expressed a desire to have these guidelines publicly available and easily accessible. This website is the result. More detailed information on how the study was conducted can be found in the academic literature