Care providers are frequently failing to provide quality end-of-life care to people with learning disabilities, an expert in the field has warned.
Irene Tuffrey-Wijne (pictured), a professor of Intellectual Disability and Palliative Care, said during a talk at the House of Lords that providers often don’t recognise when a person with learning disabilities is coming towards the end of their life.
She told policy-makers and influencers who attended the ‘death, dying and learning disability’ lecture organised by charity Marie Curie that while statistics show around 2% of people living in hospices should have some form of learning disability, the actual figure of residents having one is far less, The Nursing Times reported.
“That’s why some of my research has focused on identifying the signs, how to communicate with people who have complex learning disabilities and how to break bad news to them,” she said.
Professor Tuffrey-Wijne’s comments follow a study by the University of Bristol, which reviewed the deaths of people with learning disabilities England.
Of 588 deaths reviewed in 2018, less than half of the people had an end-of-life care plan in place when they died.
The professor also warned that there was a tendency to try and shield people with learning disabilities from the subject of death.
She suggested that by trying to protect people with learning disabilites from conversations about death, they were unable to become fully “involved with decisions about their own life”.
“Carers and health and social workers need to address this and not shield people from the truth,” she said.