Why are we locking up people with learning disabilities and autism?

I had been contacted by a father whose severely autistic adult son had spent a decade detained in a psychiatric facility in England, 300 miles from his family in Scotland, due to a lack of suitable specialist accommodation north of the border.

He was at the end of his tether trying to find a placement closer to home, with his worries exacerbated by concern that his son was at risk of serious harm due to a series of alleged lapses in his care.

It appeared to be a straightforward story highlighting the impact shortages of community and residential care can have on people with debilitating learning disabilities.

Within hours of publishing an article, however, we received notice that the man’s son was subject to a Court of Protection order which barred any reporting about the case.

It had been sought by the local authority responsible for his care in England on the grounds of patient confidentiality (and the fact that he did not have the mental capacity to consent to that being breached), but the effect was also to gag his father - and the press - from voicing any criticism publicly.

READ MORE: 14 people with autism and learning disabilities die in psychiatric facilities

The story was removed from online (the print newspaper, published and distributed in Scotland only, was not bound by the English court’s ruling).

Some months later, when the young man finally returned to a facility in Scotland, an attempt to run a positive piece on his father’s relief at finally bringing his son closer to home was also kiboshed when the local authority taking over responsibility for his care here was granted an Interim Welfare Guardianship Order, which similarly forbade any reporting about the “patient” without permission from the council’s chief social worker.

My lasting (cynical?) impression of the saga was that local authorities across the UK were going to an awful lot of effort to hush up cases of extremely vulnerable people locked up for years on end, sometimes far from home, under the guise of protecting their right to privacy.

Crucially, the case was far from unique.

In 2018, for example, the father of a 17-year-old girl with autism and severe anxiety took Walsall Council to the High Court after it attempted to obtain an injunction banning him from speaking out about her plight.

She had been locked in a seclusion room at a psychiatric unit in Northampton - 55 miles away from her parents - for almost two years.

The council dropped its bid, but hundreds of other families across the UK do not have the funds or the wherewithal to mount such a challenge.

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Right now, hundreds of families - rightly or wrongly - are silenced by such orders, while others claim they have been prevented from visiting their loved ones in secure units as a punishment for speaking publicly.

The tragic situation was brought to mind this week when Public Health Scotland published figures for the first time showing that 14 people with autism or learning disabilities died in Scotland between April 2015 and the end of March this year while being held in inpatient psychiatric facilities.

Of these, six had a length of stay exceeding at least one year but in many cases it is probably much longer: nine of the 14 deaths occurred in patients aged 55 and older.

Source: Public Health Scotland

The data is not routinely published, and was only released following a parliamentary question lodged by Aberdeenshire MSP Alexander Burnett.

Similarly, figures obtained by Sky News under freedom of information in December 2021 revealed that 75 people with a learning disability or autism had died while being held in inpatient units in England since 2015, including 47-year-old Clive Treacey whose death was considered “potentially avoidable”. A review found that Mr Treacey, who had complex epilepsy and a learning difficulty, had “an unacceptably poor quality of life” and was not “kept safe from harm”.

The PHS report did not disclose the causes of death in the 14 Scottish cases, so it is impossible to say whether any were avoidable, but that does not detract from the fundamental point repeatedly raised by campaigners for years now that “hospitals are not homes”.

People with severe autism and learning disabilities are not mentally ill; they simply require support in order to live well in the community, whether that is in a residential care home or with family.

Yet UK-wide, thousands are incarcerated in psychiatric secure units - many for years and even decades - and kept there long after doctors have deemed them well enough for discharge.

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There is ‘Patient A’, a 24-year-old autistic man with behavioural problems who has been confined since 2017 to a small secure apartment at Cheadle Royal, a psychiatric hospital in Manchester, where he is watched over by CCTV and served food through a hatch.

He is detained under the mental health act, but his mother, speaking about the case anonymously in January this year, said he had deteriorated as antidepressants, antipsychotics, tranquilisers, and anxiety drugs were increasingly prescribed.

“The more meds they gave him, the worse he was getting,” she said.

file photo

In February, Mhairi - not her real name - told BBC Scotland that she had lost the right to visit her autistic son after raising concerns on social media about the locked hospital unit where he has been held for the past six years.

In some cases vulnerable individuals with learning disabilities or behavioural problems linked to attention deficit hyperactivity disorder (ADHD) have ended up detained for years alongside criminals at the State Hospital in Carstairs, simply because there is no other treatment bed available.

US president Harry Truman once said that “a society will be judged by how it treats its weakest members”.

It is hard to think of a greater failure than our abysmal neglect of people with learning disabilities and autism.