'You start to believe you're ill': Fight to free autistic people from hospitals - as govt misses crucial target

The government has missed a long-standing target to reduce the number of people with autism and learning disabilities detained in hospitals.

Some 2,045 people with autism or learning disabilities are currently detained in psychiatric facilities in England, many of them sectioned under the Mental Health Act.

People with a learning disability and autistic people can be sectioned even if they do not have a mental health condition.

According to learning disability charity Mencap, the average time people stay in hospital is nearly five years.

The government pledged that by the end of March 2024 they would reduce the number of people with a learning disability or autism in mental health hospitals by 50% to no more than 1,445 inpatients.

Not only has the government missed that target by 600 people – more than 40% – Mencap predicts it will not reach it until 2030, six years later than promised.

Adrian Lochhead is among the parents who have spent years fighting for their children’s freedom.

His daughter Maeve, 28, who has autism and learning disabilities, has spent much of the past decade in psychiatric facilities and desperately wants to leave hospital and live close to family and friends.

Although Adrian lives in Carlisle, his daughter is in a hospital in Derbyshire, more than three hours away by car.

He told Sky News she has been deeply affected by being hospitalised for long periods.

“She’s learned new behaviours by being in the hospital, she talks about herself as being ill like any of us would if we were stuck in a ward for long enough and doctors kept treating you as if you are, so you start to believe you are,” he said.

“She believes she’s ill but also knows she isn’t. She just wants out.”

Adrian said he wants his daughter to be able to live in her own place with support from carers, but he said local authorities had not been able to provide that, despite it likely being a cheaper option that would give his daughter some independence and freedom.

“So much money is being wasted on an inappropriate solution. I’ve spent ten years trying to get a solution for her and we are no closer today than we were at the start,” he said.

Dan Scorer, head of policy at Mencap, said: “We know of many people where the public purse has been charged over £10,000 a week for places in these in-patient hospitals.

“When people come out of them, often they do need very intensive support and large staff teams to help them resettle into the community with all the traumatic experiences that they’ve had.

“And initially that can be expensive, but over time what we’ve seen is there can be very significant savings as that support can be reduced.”

Derek Blenkinsop, 57, has a learning disability and was in and out of a psychiatric hospital for years.

But he now has his own purpose-built bungalow in Sunderland, close to family and supported by carers who rotate in and out.

“I prefer living here,” said Derek. “I’ve got confidence in the staff.”

He spends his days doing the things he loves.

“I sit and colour in, I listen to the music [his favourite band is ABBA]. I see the family when I can.”

And most importantly, perhaps, he feels like he has privacy.

His care is funded by Sunderland Council and provided by a local charity, North East Autism Society. It said this care costs less than Derek being in hospital and has had a positive impact.

“There’s definitely more individuality about Derek [now],” said Eddy Mashavirah, who works with Derek.

“You know, now he can joke, but during the time when I saw him at hospital there wasn’t any personality showing.”

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Derek and Maeve are very different individuals with different needs but both of them need tailored support to thrive.

In a statement, the North East and North Cumbria Integrated Care Board, who are responsible for Maeve’s care, said: “We cannot comment on individual cases, but we are committed to helping people to live independently, in their own home or in community settings.

“We work with individuals and their families to tailor support packages to their needs, as close to family and friends as possible.

“Our region has a strong record of providing high quality specialised services for people with learning disabilities or autism.

“This means people from other parts of the country often choose services in this area, which can make it challenging to find suitable local alternatives.

“We have a strong commitment to reducing long-term hospital care. We have brought in national experts for independent reviews and developed a new strategy to create more suitable homes.

“We also invest extra resources in our complex case teams, to ensure regular assessments of needs and support within community settings.”

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