'Barbaric': Hundreds with learning disabilities kept locked up for years

Watch ITV News reporter Peter Smith's full investigation: 'Locked up'

Words by Specialist Producer Reshma Rumsey

Adam Downs is being detained indefinitely at Rampton in Nottinghamshire, a high security unit with paedophiles, murders and rapists.

He’s not there because he has committed a crime, he’s there because he has learning disabilities and autism.

He’s now 31, but has spent more than half of his life locked up in various secure units.

His mother Alison Rogers, from Worksop, is desperately trying to get him out. She says he’s distressed and scared.

Mrs Rogers said: “He’s not a criminal, he hasn’t done anything wrong, he has learning disabilities and autism.”

Mrs Rogers told ITV News that Adam has been detained in Rampton for the last two years under the Mental Health Act even though he isn’t suffering from a mental health illness.

After he went missing when he was 15, police found him and he was taken into the system. His mother was told he’d be home after six months following assessments.

15 years later, after being moved from secure unit to secure unit, Mrs Rogers is still waiting for him to come home.

“If Adam gets upset because of what’s going on around him they’ll restrain him or seclude him,” said Mrs Rogers. It’s not something she finds easy to talk about.

In one unit, Adam was kept in seclusion for five weeks and another for five months. He was alone just staring at bare walls and a locked door.

'They shut the toilets off and made him go to the toilet in front of cameras'

“He’s got a mattress on the floor, they shut the toilets off, and they made him go to the toilet in front of the cameras,” Mrs Rogers tells us.

Adam is like hundreds of others with learning disabilities and/or autism who are currently incarcerated because there just isn’t the adequate care in the community to support their needs.

According to NHS figures, in England almost 2,000 people are currently being held in mental health inpatient units for an average of around 5.5 years, and 350 have been detained for a decade or longer.

Mrs Rogers is desperate for Adam to be released.

She told ITV news: “He can’t be cured of his learning disabilities and autism, he has special requirements and needs proper care and support - he won’t get that where he is.

"He’s left alone for long periods of time, the environment is a trigger for him so then they end up restraining him or secluding him and that makes him worse. It’s a vicious cycle.”

Mrs Rogers claims Adam is deteriorating mentally and physically and says he’s been given medication for a mental illness that he doesn’t have.

“He’s a shadow of himself. He can’t do anything now. He can’t function properly because he’s on high doses of medication.”

Adam’s experience is symptomatic of a broken system according to one senior nurse we spoke to who works inside secure units.

Talking anonymously, the nurse with more than two decades of experience came forward to ITV News to raise her concerns about patient safety.

She told us that she believes people with learning disabilities and autism should not be in mental health units.

'The system abuses them... few will have any training': A nurse anonymously reveals her experience in the units

“Staff just aren’t trained to support them and often there just isn’t the staff," she said.

"Mental health wards are completely the wrong environment and are triggers for patients with autism and learning disabilities who then end up being restrained or secluded for long periods of time when they don’t need to be.”

NHS figures reveal that, in the first six months of this year, there were nearly 26,000 reported uses of restrictive practices, such as people being kept in isolation or being restrained - either physically or with medication.

And in some instances mechanical restraint are used - using things like handcuffs, belts or harnesses to restrict movement.

"Seclusion has its place if it’s used to make an area safe for an hour or two but for days, weeks, months and years it’s unacceptable.

"I’ve tried to raise concerns but I’m just seen as a trouble maker.”

The healthcare professional told us she’s regularly witnessed the misuse of medication.

Why has Adam been detained for so long?

“Patients are being given medication they don’t need. It’s being used as a chemical cosh because staff just don’t know what else to do. They’re not trained so medication and seclusion become the only alternative for them.

"The system abuses them, we have staff shortages and few are trained in disabilities or autism.”

Jeremy Harris managed to save his daughter Bethany from following a similar path to Adam Downs.

Bethany has mild learning disabilities and autism and was held in secure units for several years since she was teenager.

So desperate to get her out, her father secretly filmed one of his visits while Bethany was kept in isolation for three years. They could only communicate through a hatch in the door.

“That was my contact with Beth for three years. She hated it, she just wanted a hug more than anything in the world and I couldn’t do that,” Mr Harris told ITV News.

So shocking was the footage that it triggered a review of her care.

'Beth wanted a hug more than anything in the world - and I couldn't do that'

Mr Harris said: “Three years she was kept in isolation. Just a mattress on the floor. She was so broken that she would try and end her own life using her clothing, using her underwear.

"Groups of men would storm into the room and pin her to the floor to remove her clothing and restrain her. You don’t treat animals like that, you shouldn’t be doing that to human beings."

Following a review, Bethany was finally given a support package to help her live independently, which her father says has transformed her life. Her father says she’s happy and thriving.

“Where Beth is now she goes out every day. She talks to friends, she goes shopping. She does what I do. There’s no reason why she shouldn’t have had that instead of being placed in a hospital.”

Mr Harris says people like his daughter are being failed by the system.

“It’s a case of out of sight out of mind,” he told us.

“It’s easier, it saves the local authority money and let’s face it they’re all cash strapped at the moment. It saves them having to provide the care because the moment that a person is place in hospital it’s the NHS who picks up the bill.”

Mr Harris now dedicates his time to help prevent other families facing a similar situation. He is on a panel advising organisations about the support people like his daughter need.

The charity Mencap is also campaigning to end the practise of detaining people with learning disabilities and autism under the mental health act in secure units.

Dan Scorer, the charity’s head of policy told us: “It just shows that people with learning disabilities and autism just do not matter as much in the eye of the government. To keep them locked up is Dickensian and barbaric.”

More than ten years ago, David Cameron’s government promised to end this practise and provide credible and adequate care to support people with learning disabilities and autism to live in the community.

Since then, after endless reviews, inquiries and broken promises, target after target has been missed by successive governments.

We put this to the current health secretary Therese Coffey who told us: “Well it’s a matter I haven’t yet spent time on in my role. I’ve been focused on the immediate operational priorities of ABCD and recognising that is what the vast majority of the population relies on.”

We also contacted Nottinghamshire Foundation NHS Trusts, which runs Rampton Hospital.

In a statement, Dr Susan Elcock, executive medical director of forensic service at Rampton, told us she couldn’t comment on individual patients and went onto say: “The specialist support we provide is responsive to the needs of individuals and our aim is always to move people to environments with the least restrictions as possible.”

Those words mean very little to Adam’s mother, Mrs Rogers. She says the best option for her son is to live supported near her. She vows to continue fighting for the release of her son.

“He deserves the chance. I know he could thrive and live a fulfilled life if he was just given the right support.”

Hundreds of people like Adam are being denied their freedom and their future. It’s a national scandal, a scandal that no one defends anymore but a scandal continuing in plain sight.

The Care Quality Commission - the care regulator - is due to publish a report tomorrow looking into the access of care for people with learning disabilities and autism as well as the standard of care they receive.

Although it does acknowledge some areas of good practice, ITV News is expecting it to be very critical and to highlight many of the problems raised in our report, such as staff not being adequately trained, poor facilities, the misuse of seclusion and medication and the lack of dignity many people with learning disabilities and autism are forced to face.

If you have been affected by issues raised in this story and you would like to share your experiences, please email careinvestigation@itv.com