Locking up those with learning disabilities and autism a scandal in plain sight, families say

Huge numbers of people with learning disabilities are being locked up as there are not enough carers to help them live in the community - ITV News' Peter Smith speaks to one family desperately waiting for their son to be allowed to come home.

Words by Reshma Rumsey, ITV News Specialist Producer

“My biggest regret is ever asking for help”.

Sara Standish is adamant that had she not asked for help from her local authority her son, Josh, who has learning disabilities and autism would not be locked away.

Josh is 19 and in an inpatient unit sectioned under the Mental Health Act.

Eighteen months ago Sara asked for support as Josh’s behaviour was becoming more challenging. She was told Josh would be assessed and home within three to six months.

Eighteen months on Sara is still waiting for her son to come home.

Sara said: "I feel like I've failed him because all for 18 years we kept him safe. We kept him out of the system so that none of this would happen.

"My biggest fear was him going into a home. He went into the system he was sectioned and abused."

'He hasn't done anything wrong, he doesn't deserve to be locked away,' Josh's mother Sara told ITV News

Sadly, this is a story we’ve heard time and time again during our investigation from families of people who’ve been locked away because they have learning disabilities and autism.

Shocking new data analysed for ITV News by the charity Mencap reveals the government is set to miss its latest target of reducing the number of people with learning disabilities and autism in mental health hospitals by 50 per cent.

And on average they’re estimated to be at least four years off delivering the change needed to meet the target.

This won’t be the first time.

Following the Winterbourne View abuse scandal in 2011, the government and NHS England introduced a flagship programme to transform care and pledged to reduce the numbers of people with learning disabilities and or autism in in patient settings and support those who didn’t need to be in hospital with suitable supported care in the community.

Since then successive governments have missed target after target to reduce the numbers – in fact not a single target has been met.

Analysis by Mencap also reveals that 55% of local areas in England are not only set to miss the March 2024 target but haven’t even met the 2020 target.

And a third (33%) are going in the wrong direction with number increasing or stagnating.

Norman Lamb who was the health and care minister following the Winterbourne View Scandal, introduced the Transforming Care Programme in response with hopes of stopping anything like that ever happening again.

He told ITV News it was his biggest frustration in government and described it as an abject failure.

'We complain about human rights abuses in other countries, and yet here in our own country we have the scandal of human beings being locked up for no good reason'

“We made progress but not enough progress,” he reflected.

“It's totally frustrating and frankly, wholly unacceptable. We complain about human rights abuses in other countries, and yet here in our own country we have the scandal of human beings being locked up for no good reason.

"We have inertia from commissioners who simply don't see the moral necessity of change. We have inadequate rights for individuals and for families. I published a green paper in 2015 to give individuals and families more rights.

"It still hasn't been implemented since I left the Department of Health. There's no accountability. And fundamentally, I have always felt that people with a learning disability are treated as second class citizens. They do not get the same rights or attention as others get.

"It’s our moral imperative to end this.”

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Currently there are 2,045 people with a learning disability and or autism being detained in inpatient mental health hospitals with an average stay of more than five years.

A Safe and Wellbeing review published last month by NHS England following the death of three patients in a unit in Norfolk revealed that 41% of people with learning disabilities and autism locked away, potentially do not need to be there.

“In very many cases, people have been deemed able to live independent lives with support in the community and yet they remain locked up in our country. That is a scandal that this country should be ashamed of," the former Lib Dem MP said.

Josh is one of those cases. He was cleared for discharge weeks ago but because there is no adequate provision for him in the community he continues to be detained.

Sara said: "So because there hasn't been investment in places for Josh to live his life in the community yet, he's currently locked away.

"It's easier to lock him away than find him somewhere."

And the worry is the longer the people like Josh stay locked away there is an increased risk of suffering abuse and neglect.

Josh was taken more than 100 miles from his home in Yorkshire to a centre in Lancashire where his mum says he suffered terrible mental and physical abuse.

Josh phoned his parents and showed them bruises. Credit: ITV News

Sara recalls Josh’s experience, saying: "They would call him a retard, threw water in his face and would physically restrain him when he didn't need restraining and they marked him badly and they left him in a room all day to do nothing at all. It was absolute hell. It was awful.

"I could see marks on his face, around his neck. There was a bite mark on his arm and he made a video call where he was in hysterics because he was absolutely petrified of what they'd done to him.

"He had a cut on his leg which he had picked himself and it was infected, it was absolutely disgusting. They said it was fine, there was nothing wrong with it.

"We got a phone call between three or four in the morning and Josh said he’d been dragged into the shower. He was crying.

"They said it's because his nose was bleeding. I asked why did they need to take him into a shower if his nose was bleeding? And why was his nose bleeding?

"I couldn't protect him anymore and people were hurting them. They were abusing him. And nothing I could say or do was stopping it. He asked for help. He was begging me to bring him home."

Josh had grown up at home surrounded by a loving family. He was taken away after his mother asked for help with his care. Credit: ITV News

We contacted the centre where Josh was housed who told us: "Providing safe and high-quality care to suit the often-complex needs of our patients is our absolute priority and we investigate any concerns raised by our service users and their families thoroughly and where required with the Local Safeguarding Team and the Police to ensure all individuals under our care are being looked after and any issues addressed and improvements made where necessary."

The CQC investigated the centre last month rating it inadequate and found patients weren’t safe or adequately protected from abuse.

It’s also currently being investigated by police.

There was national outrage when the shocking pictures of the abuse suffered by patients at Winterbourne View in 2011 was revealed.

Families of those patients subjected to the most horrific trauma believed it was a watershed moment and an opportunity to end such abuses for good.

Claire Garrod‘s son Ben was at Winterbourne between 2009-2010.

'You have a baby, you promise them nothing is ever going to hurt them and then you can't keep your promise,' Claire said

Claire said: "There was just too much sadness and horror. I just couldn't believe it.

"My son was 18 years old when he went in. He’d never been away from home. He stepped from a classroom to Winterbourne and five weeks later had his jaw broken. He needed major surgery and had to wear dentures and will for the rest of his life.

"He had burn marks all over him. His hair was shaved. He was wearing somebody else's clothes. His feet were rough, you know, where they'd been dragged in. We knew. Deep down we knew.

"You promise them nothing's ever going to hurt them. And then you can't keep your promise."

Claire Garrod‘s son Ben was at Winterbourne between 2009-2010. Credit: ITV News

Claire felt the lifechanging trauma her son suffered would not be ignored or forgotten.

Claire said: "I felt thank God it's been exposed because now it's out in the open. Nothing like this will ever happen again. So if something so dreadful had to happen, at least it's going to stop."

But it didn’t stop. Ben he was moved to a residential home.

Claire said: "He was abused again. So that ended up with trials and some convictions again. But I mean, as a mother, having been to four trials and two hearings, you know, you just you can't believe sometimes you're talking about your own son because you can't believe it's gone that wrong.

"It's like grieving for someone who's alive every day of your life. Every minute of every day.

"Because everything that he's been through, nothing's changed. And if it mattered, there would have been change. So every time we campaign and nothing happens it proves that they don't matter.

Claire explains why her experience has left her feeling she would not want to bring a disabled child into the world again

She added: "I'm not surprised at all that targets have been missed and continue to be missed. That's how bad it is now. They're just targets. Promises that have been made have been broken time after time again.

"There's never any accountability. And then it's almost like they hope you'll forget by then what they promised. But there's many of us who are going to just keep fighting. We're not going to forget because there's no hope for families."

'It's like grieving for someone who's alive every day of your life,' Claire said Credit: ITV News

Ashleigh Fox is a learning disabilities nurse who was a whistleblower at Winterbourne View.

She was so traumatised by what she witnessed she has worked to change the model of care for vulnerable people.

She told ITV News that she was not surprised to see targets not being met.

"We have unintentionally built a system that isn’t meeting the emerging needs of the population and responsibility lies with us all having open and transparent communication not just with the NHS but wider systems," she said.

Ashleigh is a transforming care director for an independent company providing bespoke care for people with learning disabilities and autism.

She believes delivering good community care to improve the quality of life for people like Ben and Josh is possible.

Ashleigh said: "Creating capacity in the community will require significant investment, as well as reviewing our care workforce’s financial position, especially in social care, yet it’s the only way to address this issue in the long run."

One of the main issues for Josh and Ben and others like them is that often there just isn’t the adequate provision of community care due to lack of funding and resources.

We examined board meeting reports of locals areas and were shocked by what we found. Many were openly admitted they’re struggling to meet the target and find community placements.

Here are just some of the examples we found in areas across the country:

  • We still have too many people living in hospital, or at high risk of admission, for whom without a radical change there is little chance of living as we all do, in the community.

  • The target was forecast not to be met.

  • We are not meeting this trajectory.

Sara says it’s costing around £18,000 per week to keep Josh in hospital but believes the money could and should be used instead to provide bespoke one to one care in the community for Josh.

Sara said: "I think it's probably because it's easier to lock them away because there hasn't been investment in places for Josh to live his life in the community so he's currently locked away. It's easier than to find him somewhere."

The charity Mencap is calling for the government to urgently review its action plan and wants commitment to funding for community support.

The Department of Health and Social Care told us they remain committed to achieving the ambition set out in the NHS Long Term Plan to reduce by half the number autistic people and people with a learning disability in mental health hospitals, by March 2024.

Health Secretary Steve Barclay told us: "We're investing more into getting the right care to the right setting and investing a further £90m, recognising that for people with learning disability issues often inpatient care is not the right care for them so we're investing more in this.

"Of course, the pandemic as a whole had a huge impact across the NHS on performance.

"That's why we're working through that at pace and it's why we're investing £90m more in the community services to help with this."

Health Secretary Steve Barclay Credit: ITV News

Plans to scrap the practice of detaining people with learning disabilities and autism under the Mental Health Act are outlined in the draft Mental Health Bill.

It’s a step in the right direction but campaigners say it doesn’t go far enough and with no time frame there won’t be progress anytime soon.

Norman Lamb said: "I don’t see this reform taking autistic people and those with a learning disability out of the Mental Health Act as a solution.

"The real risk is that there will be unintended consequences that people will still be capable of being detained under the Mental Capacity Act or there will be an increase in the diagnosis of mental health conditions which will enable them to come under the Mental Health Act and I fear detentions will continue.

"We need determined national action matched by local actions. There is a massive vested interest in the status quo.

"A lot of private sector organsiations make a lot of money out of keeping people in beds and organisations were continuing to build new institutions delivering the wrong model of care."

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Claire feels Ben, now 32, will never recover from his experience. He has been diagnosed with complex PTSD.

For many years, Ben spent his days on high alert worrying someone might harm him again.

He had a turnover of around 400 staff as he struggled to trust those supporting him and he remained at risk of returning to an inpatient setting.

For the last seven years Ben has been living in a supported community placement and his mum says he’s finally thriving.

Claire said: "Ben is in his own home. He's a therapy dog. He's gets out every single day of his life. I can hear him laughing. There is an open door policy as it should be. It's great. It's lovely. But he's a very damaged person."

Sara has a 10 year old son who also has learning disabilities and autisim. She says she is petrified he will follow in Josh’s footsteps.

Josh is allowed fortnightly visits home Credit: ITV News

Sara said: "I fear. I fear so much that I can't protect him like I couldn't Josh. It keeps me up at night."

Josh is allowed fortnightly visits home – a few hours before he’s taken back.

Until a suitable placement can be found that’s the closest he is to getting back his freedom.

Sara said: "Josh is always asking when he can come home. He’s desperate to. They need to stop locking Josh and others like him away because they're not criminals.

"They haven't done anything wrong. They deserve as normal a life as possible.

"And to they need to find the places where they can live in the community, close to their parents, close to their family."

Josh wants to work in a bike shop. He's got the things that he wants to do, aspirations, but he can’t do any of it while he’s locked away.

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