Talk to people with learning disabilities about death, professor urges

World-leading learning disability and palliative care expert Professor Irene Tuffrey-Wijne made the caution during a talk at the House of Lords as part of a series of lectures organised by charity Marie Curie focussing on access to care and support for people living with a terminal illness.

“Carers and health and social workers need to address this and not shield people from the truth”

Irene Tuffrey-Wijne

Professor Tuffrey-Wijne, from Kingston University and St George’s, University of London, told policy-makers and influencers who attended the ‘death, dying and learning disability’ lecture 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”.

The professor advocated a greater level of education on the subject, suggesting there should be honesty around death: “Carers and health and social workers need to address this and not shield people from the truth.”

She also highlighted the frequent failure of care providers to recognise when a person with learning disabilities was coming towards the end of their life.

“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,” she noted.

“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.”

Professor Tuffrey-Wijne’s comments come at a time of crisis in learning disability nursing due to severe staffing shortages.

The Royal College of Nursing found in June this year that the number of learning disability nurses has dropped by almost 60% in a decade, stating that the field required an “urgent” increase in funding. Health Education England has since pledged to inject £2m to try and strengthen the learning disability workforce.

Meanwhile, the learning disability nursing community was left in shock earlier this year when another scandal involving abuse and mistreatment of patients at a specialist healthcare facility was exposed. 

In a BBC Panorama episode aired in May, an undercover reporter filmed patients with autism and learning disabilities being deliberately provoked and intimidated by staff at Whorlton Hall, a privately-run NHS-funded unit in County Durham.

The matter came to light eight years after similar atrocities were uncovered at Winterbourne View, a private hospital in South Gloucestershire.

The Care Quality Commission has since pledged to review the way it regulates these facilities to try and better protect people with learning disabilities from abuse.

Evidence has long shown that people with learning disabilities die much earlier than the wider population, and often face barriers receiving good quality healthcare.

“I really want to understand the barriers people face during their last year”

Irene Tuffrey-Wijne

Since 2017, the University of Bristol has been NHS England to review the deaths of people with learning disabilities in the country in a world-first study of its kind.

The latest annual report showed men with learning disabilities in England die on average 23 years earlier than general population men, while women die 27 years earlier.

Of 588 deaths reviewed in 2018, less than half (46%) of the people had an end-of-life care plan in place when they died.

Although the government has announced plans to make learning disability training mandatory for all healthcare workers, Professor Tuffrey-Wijne believes there is still more to be done.

She said: “After a decade of recommendations and enquiries into premature deaths, and a lack of access to healthcare, there are still so many people having such a poor experience and this needs to be addressed as a matter of urgency.”

The former nurse plans to continue her research into end-of-life care as she hopes to gain a greater understanding of the final year of a patient’s life.

She said: “I really want to understand the barriers people face during their last year, what needs they have and if our health and social care services are ready to give them as good an end of life experience as possible.”