Young autistic people dying despite warnings over careon September 7, 2023 at 12:28 am

Dozens of young autistic people have died after serious failings in their care despite repeated warnings from coroners, BBC News has found.

Our investigation found issues that were flagged a decade ago are still being warned about now.

Two bereaved mothers told us lessons had not been learned by their local health authority after the deaths of their teenage sons, two years apart.

The government says £4.2m is being invested to improve services.

Former Justice Secretary Sir Robert Buckland described the findings as “deeply disturbing”, and called for the government to investigate urgently.

In the first piece of research of its kind, the BBC combed through more than 4,000 Prevention of Future Death (PFD) notices delivered in England and Wales over the past 10 years.

Coroners are legally required to issue such warnings at inquests, if they believe there is a risk future deaths will occur unless action is taken by the authorities responsible. But there is currently no legal duty for them to act.

The BBC identified 51 cases where PFDs described serious failings in the care of autistic people, and health and social care bodies were urged to take action to prevent future deaths.

The majority of those who died were under 30, and nearly a third were children.

Life expectancy for autistic people is – on average – 16 years less than for the general population. There is no clear reason for this – people do not die of autism, it is a neurological condition that means the brain is wired differently. It affects how people interact with others, learn, and behave.

The causes of death in the inquests varied but nearly half were categorised by coroners as relating to mental health or suicide.

Our research identified five key concerns repeatedly flagged by coroners:

The charity Autistica says our research helps explain the avoidable reasons why many autistic people are dying young.

Sir Robert, who heads the all-party parliamentary group on autism, says there is clearly a “mounting concern”.

“Lessons are not being learned. Fifty-one [deaths] is a lot. It suggests a systemic problem.”

Two mothers whose autistic sons died as teenagers, say they are “tormented” by the lack of accountability.

The deaths of their autistic sons – Sammy Alban Stanley, 13, and Stefan Kluibenschadl, 15 – each resulted in a PFD being issued. The boys had gone to the same school and were failed by the same local health and care services. They died in the same hospital.

It was while Stefan was in intensive care – two years after Sammy’s death – that Emma Kluibenschadl got in touch with Patricia Alban Stanley.

To lose a child, they agree, is a life sentence. And to know there was a chance that the deaths could have been prevented is “torment”, says Ms Alban Stanley.

Sammy fell from a cliff near his home in Ramsgate, in April 2020. Witnesses reported his last words were: “I’m autistic.”

“He meant ‘Please help me’,” his mother says.

As well as being autistic, Sammy had Prader Willi Syndrome (PWS), a rare neurological condition, which left him unable to regulate his emotions.

“It would be impossible to stop him at times,” says Ms Alban Stanley. “He had no concept of danger. He would try to jump out of moving cars, or on one occasion he put needles up his nose.”

Ms Alban Stanley – who has three other children and no partner – says she “begged the council for more support” and was “struggling to cope”. Her safety net was the police, she says. She called them at least 29 times.

Their GP, senior social workers and the police also made many referrals calling for more support. “But it made no difference,” says Ms Alban Stanley.

After six years, she was finally granted two hours of after-school care in January 2020. But it wasn’t enough – Sammy died just three months later.

Without extra help, his mother couldn’t stop him from leaving the house. Blind to the danger the nearby cliff posed, he fell. He died four days later in intensive care, in his mother’s arms.

In her Prevention of Future Death notice to NHS Kent and Medway, coroner Catherine Wood said Sammy fell during an “episode of high risk behaviour” and criticised the local authority and mental health services for “inadequate support”.

She also made it clear that it was “predictable that a similar incident may arise… if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe”.

Kent and Medway responded to the coroner’s PFD saying it was investing in services for children and young people with neurodevelopmental needs – and would make sure care was “co-ordinated rapidly around the child and family”.

A few miles away, in Margate, Emma Kluibenschadl and her family were battling with the same health officials. Nearly two years later, the coroner’s stark prediction would come true.

Ms Kluibenschadl’s son Stefan was struggling with his mental health. He had been bullied for being autistic and spent many years watching his family try to get the help he desperately needed.

She believes this had a profound effect on her son, who felt nobody cared.

Stefan’s mental health problems began when he was eight, a couple of years after his autism diagnosis.

Despite their GP making referrals, the family’s pleas for help were rejected by NHS Kent and Medway.

Just over a month after their final application for autism-specific counselling was turned down, Stefan was found hanging. He died four days later in intensive care.

“Stefan didn’t get any care – never mind co-ordinated care,” says Ms Kluibenschadl. She thinks if they had received support they wouldn’t be in this position now. Our lives have been destroyed.”

Coroner Catherine Wood – who also oversaw Sammy Alban Stanley’s inquest – said Stefan had died as a consequence of his own actions but she could not be sure of his intention.

She addressed her concerns to NHS Kent and Medway again – highlighting that the trust had not been following NICE guidelines, which state that every autistic child should have access to a designated social worker.

With such a health professional overseeing his care, Ms Wood said Stefan might have received the therapy he needed.

Sammy’s and Stefan’s stories are stark examples of a national problem.

Kent and Medway is one of 11 local health and social care authorities to be sent multiple PFD notices in the past 10 years. Twenty-one national authorities also received warnings.

Reports about “potentially life-saving recommendations for change” should be treated with the utmost seriousness, says Deborah Coles from the charity Inquest.

“The current system is simply not fit for purpose, and that betrays bereaved people. But it also betrays the public interest because it puts all of us at potential risk.”

For Sir Robert Buckland, the ramifications are huge. “What is the point of PFDs if there is no accountability?” he says. “Autistic people carry on having to put up with poorer life outcomes.”

The Department of Health and Social Care says a national autism training programme is being rolled out.

The chief nursing officer at NHS Kent and Medway, Allison Cannon, apologised on behalf of the NHS for the “tragic loss” of both Sammy and Stefan.

Many changes had been made, she said, including enhancing its community support and key worker programme to improve services.

“Judging by the responses we have, our children will die all over again,” says Ms Kluibenschadl.

BBC Action Line has autism information and support and details of help available for other issues raised in this article