Health

Locked up for Autism: Thousands detained under mental health law

Published

3 weeks ago

June 19, 2025

“He didn’t break the law. He just needed help. Now he’s locked in a hospital hundreds of miles away.” — Alun, father of a detained 19-year-old

IN SECURE hospitals across England and Wales, more than 2,000 people with autism or learning disabilities remain locked away under mental health laws — despite never committing a crime.

Many are detained under the Mental Health Act 1983, often after being taken by police during a mental health crisis. The vast majority have no mental illness diagnosis. Some are teenagers. A few have been there for decades.

“It’s a human rights scandal,” said Dan Scorer of Mencap. “They’re being institutionalised because society hasn’t built the support they need.”

Autism is not a mental illness. It is widely recognised that for most autistic people, care in an inpatient unit is rarely helpful – in fact, it can be deeply damaging.

The average length of stay is around 4.6 years.

The overwhelming majority (92%) of autistic people and people with a learning disability who are detained in hospitals are put there using the Mental Health Act of 1983.

A NEED FOR URGENT REFORM

For years, the National Autistic Society and tens of thousands of campaigners have called for changes to mental health law.

Reform has been promised, and a bill is making its way through Parliament. However, the government will not commit to funding the reforms the legislation will enact. Even then, campaigners say the law change will not end the scandal of detention.

In April, Denise Cavanagh from Hook, a founder of the Stolen Lives campaign, told BBC Wales that she believed people would still be detained via other laws, including the Mental Capacity Act.

She added: “People with learning disabilities often end up in hospitals because there’s a breakdown in housing and community care, and it’s the only place they can go.

“So, if that community care isn’t there, there is nowhere for them to go and they’ll still be detained.”

And even though health is devolved to Wales, the Welsh Government is relying on a Westminster bill to improve how people with learning disabilities and autism are supported during a crisis.

“THEY CAME WITH HANDCUFFS”

Michelle, from Wiltshire, recounts the day her autistic daughter was detained after a meltdown in a supermarket.

“She was 23. She was overwhelmed. She panicked. That’s all. But the police came and took her away. That was three years ago. She hasn’t been home since.”

Michelle’s story is one of many. Some families describe wards where patients are sedated, isolated, and cut off from loved ones.

Bethany – whose surname cannot be published – was locked in a hospital room in Northampton as a teenager. Her only access to the outside world was through a tiny hatch in the door.

Her father, Jeremy, said he could only see his daughter through a plastic screen or through the six-inch hatch.

“It was cruel. It was torture for my daughter,” he said.

“It broke her human rights, her right to family life, her right to freedom from degrading treatment.”

Even now, several years on from Jeremy’s interview on Radio Four regarding Bethany’s treatment, little has changed. In fact, the data shows a worrying trend towards increased detention of those with mental illness or specific learning difficulties.

NO WAY OUT

Official NHS data reveals the extent of the crisis:

Over 52,000 people were detained under the Mental Health Act in April 2024 — the highest figure in five years.

Over 2,000 of those are autistic or have a learning disability.

As of May 2025, 2,025 autistic people and people with a learning disability are in mental health hospitals in England. Of these, 1,455 (72%) are autistic.
There are 240 under-18s in inpatient units who are autistic or have a learning disability. Of these, 230 (96%) are autistic.
The number of autistic people without a learning disability detained in mental health hospitals has increased by 141% since 2015.
This is the most up-to-date record of how many autistic people and people with a learning disability are currently in mental health hospitals in England.
Despite some progress moving people with a learning disability out of hospitals and into the community, the number of autistic people detained has increased. In 2015, autistic people made up 38% of the total number in hospitals, now it is 72%.

Around 60% of learning disability or autism inpatients have no mental illness diagnosis.

Detained patients are often placed in “out-of-area” units, sometimes hundreds of miles from home.

Toni Dymond, an autistic woman, was detained for over 20 years in psychiatric care without a criminal charge.

“She was isolated, broken,” said her brother in a statement. “It wasn’t treatment. It was abandonment.”

34,685 people were detained by police under Section 136 of the Mental Health Act in 2022–23.

Over 60% were transported in police vehicles, not ambulances.

Autistic woman and author of the memoir Unbroken, Alexis Quinn, spent three years “locked inside” various mental health hospitals, including Assessment and Treatment Units (ATU).

She says: “I was detained under the Mental Health Act and remained so for most of my stay. The Mental Health Act is a piece of legislation which provides a legal framework to detain people when they are mentally ill and require treatment to get better. The interesting thing about a treatment order for an autistic person is that autism is not a mental health condition.

“Whilst mental illnesses, such as depression and anxiety, can be treated, for autistic people, this has to be done in a way that reflects their needs and understands autism.

“When I was detained under the Mental Health Act, I felt like this was because of behaviour relating to my autism, not because I was mentally ill; the whole process lacked any understanding of the difference between autism and mental illness.”

CHANGE PROMISED, BUT NO MONEY ON THE TABLE

The Mental Health Bill, which is currently going through Parliament, will stop people with a learning disability and autistic people from being detained for treatment. However, the government have said that this change to the law will not be enforced until there is sufficient community support. That means the law will not come into effect until there are enough resources to support its operation. There is no commitment to provide that funding.

The Challenging Behaviour Foundation, a national charity, wants a clear plan, co-produced with people with lived experience, families, and those working within the different parts of the system, setting out what steps will be taken to develop this support and accompanied by the resources to make it happen.

The National Autistic Society says: “We are calling on the government to urgently publish a comprehensive and fully-costed plan for how it intends to build this support.”

So far, that call has been met with silence.

Health

Welsh Lib Dems launch major survey on health and social care

Published

14 hours ago

July 10, 2025

Tom Sinclair

Party seeks 100,000 responses to shape future NHS reform in Wales

THE WELSH LIBERAL DEMOCRATS have launched a nationwide survey to gather public views on the state of the NHS and social care system in Wales.

Aiming for 100,000 responses, the NHS and Social Care Survey is designed to uncover what is working — and what is not — within Welsh healthcare. The results will help the party develop what it describes as a bold, evidence-based plan to reform services ahead of the 2026 Senedd elections.

Launching the initiative, Welsh Lib Dem leader Jane Dodds MS said: “Despite the incredible dedication of our doctors, nurses and care workers, after 25 years of Labour rule the NHS and social care system here in Wales simply isn’t working for too many people.

“Whether it’s unacceptable waits for surgery or the growing crisis in NHS dentistry, people are being let down — and it’s time for change.

“That’s why we’re asking people across Wales to share their experiences and ideas. Your voice will help shape a bold, evidence-led plan to fix our health and social care services and ensure they’re fit for the future.”

The survey is available online and in print, with party volunteers distributing copies in communities across Wales. The party is encouraging anyone living in Wales to take part.

Health and social care reform is expected to be a key pillar of the Welsh Liberal Democrats’ manifesto for 2026.

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Entertainment

Flu-like outbreak forces Eisteddfod cancellation amid public health scare

Published

1 day ago

July 9, 2025

Tom Sinclair

Emergency declared as festival-goers fall ill — site cleared to reopen Thursday

THE LLANGOLLEN International Musical Eisteddfod was forced to cancel its headline event on Wednesday evening (July 9) after a sudden outbreak of illness prompted the Welsh Ambulance Service to declare an extraordinary incident.

Multiple attendees fell ill with flu-like symptoms, leading to the cancellation of the evening concert — which was set to feature Sir Karl Jenkins conducting One World, his symphonic celebration of peace.

Festival organisers said the nature and scale of the incident meant it was the first time in the Eisteddfod’s history an event had been cancelled in this way.

A spokesperson confirmed: “Following Public Health Wales advice, the incident related to a flu-like outbreak and affected multiple people at one time. We take the safety of our audience, performers and volunteers extremely seriously.”

Medical teams on site were supported by the Welsh Ambulance Service, who confirmed the declaration of a public health incident due to the number of people affected simultaneously.

The festival had been running as normal throughout the day, with over 4,000 performers from 35 countries taking part in cultural performances, parades, and competitions.

Just hours before the cancellation, organisers had sent out a schedule for what was expected to be the busiest day of the event so far, celebrating the 80th anniversary of the United Nations.

Despite the disruption, organisers have now confirmed that the site has been declared safe to reopen on Thursday (10 July) from 9:00am.

“We are pleased to report our site has been cleared to reopen,” the Eisteddfod said in a further statement issued late Wednesday evening.

No further details have been released about the cause of the illness, but Public Health Wales is continuing to monitor the situation.

The Herald understands that stewards, medical staff and volunteers acted quickly and professionally to contain the incident and support those who were unwell.

Health

Hundreds speak out as NHS waiting list scandal deepens in west Wales

Published

3 days ago

July 8, 2025

Tom Sinclair

Patients say they were removed without warning, left in pain, or forgotten entirely – now they want answers

A WAVE of testimony from Pembrokeshire patients has revealed the true scale of the NHS waiting list crisis, with more than 100 people coming forward in just a few days to share stories of lost letters, cancelled appointments, and being removed from hospital care without ever being told.

Following a public appeal by The Pembrokeshire Herald, readers responded in force — describing what they call a “shambolic” system, in which patients are being quietly dropped from waiting lists, given incorrect or late information, and forced to chase departments that never answer the phone.

Letters never arrived — then the appointment was gone

One mother told the Herald she only discovered her young son had been removed from a waiting list for surgery after chasing a non-existent appointment.

“We never received the original letter. Then we turned up for a new date, only to be told it had been cancelled — but no one told us,” she said. “Later, they told me he’d been removed from the list for missing appointments we never knew about.”

In another case, a mother of a child with a rare genetic condition said her daughter was due annual dermatology reviews — but after a cancellation in 2023, she heard nothing for months. In February this year, she received a letter stating her daughter had missed an appointment and was being removed. She said: “We never got the original appointment, and when we finally got one for April, it was cancelled too. We’ve heard nothing since.”

Voicemail chaos and ‘no way to contact anyone’

A recurring theme in the responses was departments not answering their phones, and voicemail systems that lead nowhere.

One woman, removed from a physio course after a single missed session, said: “I rang three times that day, left a full message explaining I was unwell, but no one ever rang me back. Then a letter came saying I’d been removed from the course. I tried ringing again — just voicemail. After the second time, I gave up.”

In another case, a patient who had been waiting for diabetic retinopathy screening since before Covid told us: “I’ve phoned multiple times over three years. Every time they say they’ll send an appointment. I’ve given up.”

One former patient said he was moved to the back of the list after a missed telephone consultation — even though the doctor rang an hour early, and never called again.

GP failures and missed referrals

Many readers raised concerns about general practice as well as hospitals, claiming referrals were never sent or followed up.

One woman wrote: “If my old GP had referred me straight away, I wouldn’t be in the state I am now. As soon as I changed surgeries, I was seen — but by then the damage was done. My life’s been ruined.”

Another reader commented that her father never got the treatment he needed, and believes that delays in referrals contributed to his death.

Transport cancellations and “cheating the system”

Several readers also raised concerns about non-emergency ambulance transport being cancelled at short notice, leaving vulnerable patients unable to attend appointments.

One woman said: “My dad has had his transport cancelled the night before appointments. We had no backup, and he missed it.”

Another reader wrote: “It’s all about stats. They remove people from the list, say they’ve missed appointments, and it makes the waiting time numbers look better. It’s cheating, plain and simple.”

Health board responds — but no figures yet

Hywel Dda University Health Board has responded to the Herald’s request for comment, stating it follows strict national protocols and that any patient removed in error will be reinstated at their original place on the list.

In a statement, Director of Operational Planning and Performance Keith Jones said: “We make every effort to send appointment letters in a timely manner and it is part of our procedure to phone a patient should we need to see them at short notice or to cancel appointments.

We have received feedback from some patients of incidences where appointment letters have not been received in a timely manner. We are reviewing the factors which may lead to late receipt of appointment letters and will implement any necessary improvements.”

The health board also promotes a digital system, Hywel Dda Post, for accessing appointment details online. However, patients have reported issues with this too — particularly those without smartphones or digital literacy.

The board was unable to provide any figures on how many patients have been removed from waiting lists over the last five years and advised the Herald to submit a Freedom of Information request, which has now been done.

Public anger growing

With more than 100 people coming forward in less than 48 hours, public anger is mounting. Many say they are being pushed toward private treatment, or simply left to suffer for years.

“I’ve been in chronic pain for over a decade waiting for three surgeries,” one woman wrote. “I’ve lost 11 years of my life.”

Another added: “It’s not just the health board. Welsh Labour has failed us for years. They have money for road signs and tree projects abroad — but not for our surgeries.”

What’s next?

The Herald will continue to investigate this issue and publish further updates once the FOI response is received.

We are compiling a formal submission to both the Health Board and the Welsh Government, including anonymised patient testimonies, to call for a public explanation of how waiting lists are managed — and how many patients have been quietly removed.

If you or a family member has experienced anything similar — missed letters, unexplained removals, transport cancellations, or GP referral failures — you can contact us in confidence at:

📧 [email protected]