'We wish we'd never asked for help': Family's hurt as thousands with learning disabilities locked up
Everyday for an hour he's allowed to leave the hospital in Hull, where he's locked away, and ride around the nearby park with his dad, who struggles to keep up.
It's the highlight of each day for him.
Josh is 21 and has severe learning disabilities and autism.
For the past four years he's been locked away in secure units. Josh's needs became more complex when he was 17.
Desperate for help, his parents, Garry and Sara, turned to social services.
He was admitted to an inpatient unit and his parents were told it would just be for three months while he was assessed. But he never came home.
"It's the biggest regret of our lives," Garry and Sara said.
"We wish we'd never asked for help.
"He was taken from us and locked up." Josh was detained under the Mental Health Act and moved to a different hospital 100 miles from their home.
According to his parents, he suffered physical and mental abuse at the hospital which was eventually closed down. "He's gone through absolute hell," Sara said.
"I don't think anybody will ever realise unless they've actually seen it.
"For one person to go through that much trauma in his life; it's so sad."
When ITV News first met Josh nearly two years ago, he was at a hospital closer to home.
Staff declared he was ready to be discharged but there was no adequate community care in place and Josh became trapped in the system.
His parents told ITV News that Josh had deteriorated significantly since.
He had been repeatedly physically restrained and injected with drugs to sedate him."Sometimes I'd go in and he was laid in his own urine because he just couldn't be bothered to get up," his mother Sara told ITV News.
"I've had to hold him while changing his sheets because he couldn't stand up.
"He was slurring his words, it was absolutely heartbreaking.
"No mother wants to walk out, leaving her child like that but you have no choice."
His father, Garry, said doctors at the facility had told him that Josh was "over medicated" most of the time."In the first meeting that we had, we were told that it was well over the limits of roughly around 80 per cent over drugged, over medicated," he said. Josh has continued to be in long term segregation and spent almost two months isolated in a room with nothing but a toilet in the corner.
Any communication was through a small hatch in the door.
That's where he spent his 21st birthday, with his parents forced to pass presents through that hatch.
Last year, Josh's parents were told he would be moved to a forensic unit which houses people involved with the criminal justice system. "I was just ready to give up," Sara said.
"I was so close to just having a breakdown and saying, 'I don't feel like I can be a mum right now' because I was just in such a bad place but then who would fight for Josh?" Garry and Sara were told it was the only option.
But it wasn't. Melissa, an occupational therapist and specialist practitioner from HOPES, arrived.
HOPES is a NHS programme which has been running for three years to support people like Josh come out of long term segregation.
Staff are trained to work intensely with the patient and family.
The model focuses on compassion and dignity and avoids using any kind of restraint, except as a last resort for a short amount of time. Exclusive analysis by Mencap for ITV News has revealed people with learning disabilities and autism locked up in mental health units are disproportionally restrained.
They make up about 16 per cent of patients in mental health units, but receive more than a third of the total restraints used. Melissa worked intensively with Josh helping him to come off his medication. "I remember when Josh first came to the hospital and, obviously, he was on so many drugs they had to wean him off slowly and he did have some ups and downs while coming off them and it resulted in Josh needed to go in seclusion," Sara said.
"Melissa sat on the floor with him at the other side of the hatch and she was holding his hand and Josh said to her, 'why can't I come out?'" About 70 per cent of people who have been supported by HOPES have come out of long term segregation.
But funding for the HOPES programme was only ever allocated for three years.
Now, it's up to local trusts to decide if they can afford the programme and the services of practioners like Melissa . Funding for Melissa to continue working with Josh stopped a few weeks ago. Josh's parents say he's struggling without her help. "It's cruel," Sara said.
"For Josh, she was here and then gone.
"She was amazing and helped him so much; we're terrified he'll regress and never come out."
Former Care Minister Norman Lamb, who chaired the HOPES project, told ITV News priority needed to be given to people like Josh. "It is an enduring scandal to continue with the practice of long term segregation," he said.
"It's a truly inhuman treatment and it's usually because of a lack of understanding.
"The NHS has a moral obligation to maintain this programme; it's clearly working." Josh's case is not rare.
Hundreds of others like him are trapped in hospital, detained under the Mental Health Act and unable to leave because there is nowhere for them to go.
ITV News has been investigating the continuing scandal of people with learning difficulties being locked away in segregated hospital units. Currently, more than 200,000 people with learning disabilities and autism are detained in inpatient units in England.
NHS figures show 40 per cent of those people do not need to be there.
Since 2011 successive governments have pledged to reduce the numbers of people with learning disabilities and autism in hospital by 50 per cent.
That target has never been met.
Exclusive analysis by Mencap for ITV News revealed it would take eight years to achieve.
In April, the government introduced a new, much lower target – a 10 per cent in year reduction by March 2026. Garry and Sara have a very clear message for the Health Secretary Wes Streeting.
"I would ask him why they're locking away people who have got learning disabilities?"
"Would they lock a five year old child away? Because that's what Josh is mentally.
"If it was his family, if it was their child, would they be happy with him being locked up?" ITV News put that question to the Health Secretary.
Wes Streeting MP admitted the treatment for people like Josh was unwarranted and cruel.
"In our ten year plan, the emphasis shifts from hospital to community," he said.
"So those adults who are hospitalised for no reason, care could be provided within the safety and dignity of their homes.
"I want that for everyone, particularly this group in society who have poor health outcomes.
"I take the challenge from the family on the chin. If this was my mum, dad, brother would I tolerate it? No.
"I'm here as Health Secretary to be a voice and a champion for patients and care users, so when parents put those challenges to me I'll able to take those challenges on."
Mr Streeting insisted the Mental Health Act Bill would stop people with learning disabilities and autism being inappropriately detained.
But Dan Scorer, Mencap's Head of Policy, said it was not so simple. "The Government has said clearly that this change in the law will only get 'switched on' when there is sufficient community support in place," Mr Scorer said.
"However, there is no plan for making sure sufficient community support will be in place any time soon.
"This is a serious flaw. There is a serious risk that the key law change for people with a learning disability and or autistic people will never be activated." Garry and Sara said Josh was excited about a future outside of hospital."He wants a job, he wants to work with bikes, he wants to go to college to learn to read and write," Sara said.
"He wants a life that's not locked away in a hospital.
"Surely he deserves that?"
Josh asks his parents daily when he can come out but they can't give him an answer.
Until there is proper community support in place Josh continues to be locked up."It's easy to lock people like Josh away and just forget about them rather than get them out there," Sara said.
"It's an easy life to lock them away, drug them, keep that one quiet.
"It's only when they've got someone who will actually speak up for them and say, no, this isn't right.
"Obviously, we are there for Josh all the time, so we know what's going on.
"But not every patient in them hospitals has someone to look out for them. So then people that are just stuck there and being drugged and nobody's seen it.
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