Death toll of autism and learning disability patients revealed

Source: Public Health Scotland

The PHS report does not detail the causes of death, but does show that seven of the deaths occurred in patients who had been resident at an inpatient psychiatric facility for between 91 and 365 days, with six (43 per cent) in patients whose stay had exceeded at least one year. 

Six of the 14 patients were aged 65 or older, three were aged 55-64, four were aged 45-54, and one was under 45. 

Rob Holland, acting director of the National Autistic Society Scotland, said the data was a “step forward in understanding the experience of autistic people and people with a learning disability within inpatient psychiatric facilities”.

He added: “While it does not shine a light on the reasons for the deaths it does highlight how almost all of those that died had been within institutional care for more than 30 days with 6 people having been there for more than a year.

“Hospitals are not homes and it adds further impetus to the Scottish Government’s ‘Coming Home’ strategy to reduce delayed discharge and support people to live in homes of their own choosing.”

Previous research by the Mental Welfare Commission in Scotland highlighted tragedies including that of a 40-year-old man with a learning disability and swallowing difficulties, who had choked to death while out for lunch with staff and other patients in 2012/13.

An investigation found no lapse in care and the food he was eating should have been safe.

A second case in the same year involved a 55-year-old patient with a learning disability and “multiple complex physical problems” who died in an ambulance on their way to hospital while subject to a short-term detention certificate. Concerns were raised about their care in the run up to their death.

In February, the Scottish Government vowed in its ‘Coming Home Implementation’ report to “greatly reduce” long hospital stays and out-of-area residential placements for people with learning difficulties or complex needs by March 2024.

It came after reports of some autistic people spending five or more years in psychiatric units despite being deemed fit for discharge.

Sylvia McMahon said her son Jamie, now 24, had been “left to rot” in locked hospital units since January 2017 due to a lack of community care.

Another mother, who did not want to be named, said her son had been in a secure hospital for more than a decade and she had not seen him for over a year.

Patients with severe autism and learning disabilities can be detained in secure psychiatric units for their own safety under compulsory treatment orders, with parents sometimes facing legal threats from local authorities for breach of patient confidentiality if they try to publicise their child’s case.

Mr Burnett, co-founder of Holyrood’s cross-party group on autism, has campaigned to free 34-year-old Aberdeenshire man, Kyle Gibbon, who has spent most of his adult life in the maximum-security State Hospital in Carstairs after being detained for behavioural reasons related to Attention-Deficit Hyperactivity Disorder (ADHD) in 2010. He had no criminal record at the time.

A second patient, Gordon Hughes, 24, has been in Carstairs for over four years after being moved there against medical advice due to a lack of treatment beds. Mr Hughes has autism, ADHD, and a learning disability.

Mr Burnett said: “I have been working for several years to highlight how young people with autism, ADHD, and learning disabilities can fall between the cracks.

“The use of secure care for otherwise healthy individuals is a national scandal. And these figures needed to be made public.

“Quite rightly, PHS suggests support in the community should be the norm. But there are still too many young people in secure units who will be traumatised by the experience.

“Each of these tragic deaths represents a person, a family and a question left behind.”

A Scottish Government spokesman said: “Any death is distressing for family, friends and those close to the individual. However it is not possible to draw conclusions about cause of death from this data.

“Patient safety remains a priority for the Scottish Government, and the Scottish Patient Safety Programme continues to be implemented in all NHS boards to improve the safety of care and ensure better outcomes for some of our most vulnerable people.”