Our son’s been locked up like an animal for 21 years. His only ‘crime’? To be autistic
That’s the shattering testimony of these loving parents battling a monstrous hidden injustice in our care system
Pam Hickmott was beside herself when she last spoke to her 44-yearold son tony. ‘can i come home?’ he begged. ‘i want to come home now. Home, please.’ She tried to reassure him: ‘Soon, tone. You’ll be home soon. i promise.’ But her son, who has autism, couldn’t be consoled over the telephone.
‘Not soon. Now. i want to leave here now,’ he told her.
‘Here’ is the private hospital where tony has been incarcerated for 21 years. He is desperately unhappy, and just over a month ago a whistleblower revealed to the BBc that tony was ‘the loneliest man in the hospital’.
Support worker Phil Devine, who was at the secure assessment and treatment Unit there from 2015 to 2017, told of how this vulnerable adult, who has learning difficulties, autism and epilepsy, had only his basic needs met ‘like an animal’ and spent all his time in segregation.
‘He had never committed a crime, but here he was living in solitary confinement,’ he told BBc News. ‘He was fed, watered and cleaned. if anything happened beyond that, wonderful; but if it didn’t, then it was still ok.’
this weekend, a newspaper reported the separate case of ‘Patient a’, a 24-year-old autistic
‘People ask why I don’t get on with my life. But I can’t... he’s my lad’
man who has been confined in a small secure facility — the Priory Hospital cheadle Royal, in cheshire — since 2017 (see panel below).
tony’s parents, Roy and Pam, tell me that the revelations were no surprise to them. they have been fighting to get their son out of hospital and into appropriate accommodation near their home in Brighton, East Sussex, since he was sectioned under the mental Health act in 2001, when he was a similar age to Patient a.
‘We were told he’d only be there for nine months, so we went to have a look around,’ says Roy. ‘it was brand new and there were only two patients in it — a girl and another young lad.’
alarm bells sounded when the man showing them round asked Roy and Pam if their son had come from court. When they said he hadn’t, the man said, chillingly: ‘We’ve got a guy here who’s killed a baby. if he got out he’d kill again. is this where you want your son?’
of course it wasn’t — but the couple were powerless to prevent it. tony moved in and was put straight into seclusion. Pam still remembers him screaming to be let out as they left.
Roy, 81, a retired cleaner, and Pam, 78, a former hospital supervisor, are salt-of-the-earth people who clearly love their son. their immaculate sitting room is full of photos of tony. more recent ones — of him looking grubby and unkempt — are kept in albums.
they should be enjoying their retirement. instead, they fight tirelessly for their son’s release.
‘People ask why i don’t get on with my life,’ says Roy. ‘i tell them, this is my life. this is it. these are the cards you’re dealt. We have to see him. He’s my lad. Look.’
He shows me a photograph of himself with his arm around a smartly dressed teenager, barely recognisable as the 44-year-old of today. ‘the dad with his lad,’ says Roy, with a pride that makes you want to weep.
tony is one of more than 100 people with learning disabilities who have been held in specialist hospitals for 20 years or more. His case was highlighted in our sister paper the mail on Sunday’s campaign against abusive detention of people with autism and learning difficulties, which exposed long-term use of solitary confinement, forced sedation and feeding through hatches.
Pam, rightly or wrongly, believes ‘it all comes down to money’. the NHS funds care in specialist hospitals — tony’s is understood to have run to £10million — while local authorities must fund care in the community.
in short, as long as tony remains at the low-security hospital, the local Brighton and Hove authorities don’t have to pay for him.
Even though he was declared ‘fit for discharge’ by psychiatrists in 2013, the local authority still hasn’t found him a suitable home.
For their part, Brighton & Hove city council state: ‘tony has extremely complex needs. His current out-of-town accommodation is the nearest that offers the specialist care and very high staffing ratios required to care for him and manage his needs.
‘We are aware of the difficulties tony’s parents have faced in seeing their son over the years and are very sympathetic to their situation. We are now working with tony’s parents, NHS colleagues and a new housing provider and are actively considering options over the coming months which will meet the needs of tony and the wishes of his parents.’
Just before christmas, Roy and Pam thought a place had been found: a bungalow 20 minutes away. they even allowed themselves to get excited . . . before their hopes came crashing down. ‘there’s some sort of problem,’ is all Pam can say, sadly.
So they are back in the weekly routine that they have followed for two decades: leaving their house at 7am to ensure they are at the hospital for 11am, when tony expects them.
as Pam explains, people with autism become deeply distressed if their routine is interrupted or if there is too much noise. Yet noise is a continual problem at the hospital. tony has four patients living in secure rooms on the floor above him. there are often sounds of stamping, banging, shouting and alarms going off.
Whenever Roy and Pam leave, tony begs them to let him go with them. Each visit breaks their hearts a little bit more.
‘Sometimes we have to pull over so i can have a cry,’ says Pam.
‘For the first nine years we had to see him in this meeting room. they brought him over and took him back. He was on a unit with eight others. He used to look distressed, white, drugged up, scruffy. once he only had a dressing gown on.
‘He was on that unit for about nine years, until he had his arm broken. i phoned up Brighton
[Council] and told them: “I want him out of there. I want him moved to a safe place.”
‘They had a big meeting over it and decided he couldn’t live with eight others because he couldn’t mix. They were violent, aggressive. They’d come from court.’
Tony was moved to a bespoke unit with two rooms at the care facility and had his own staff and a van to take him on days out.
‘It was the best three years he had there,’ says Pam. ‘We had no incidents. He was happy. He was going out. He had a lovely doctor. She said she was trying to find a nice, safe place for him near us.’ But then the lovely doctor left. And when she did, Tony’s door was shut. His routine was taken away and life became sitting in his bedroom, watching TV.
Then other patients were brought to the unit and the banging and screaming resumed.
Tony was, Pam says, a ‘normal baby’ who was standing up and saying ‘dada’ and ‘mama’. Then, around the time of his first birthday, he became desperately ill, spending much of the next eight months in and out of hospital.
The first she knew of her son’s condition was when a doctor casually mentioned it during a meeting when he was two.
‘She said: “The trouble is, when you have a mentally handicapped child . . .’’ Pam remembers.
‘It went smack in my face. I said: “What do you mean?” She said: “Your son is mentally handicapped.” I said: “No one has ever told me. I’ve been coming here for about eight months and you’ve never mentioned it.” ’
Roy interrupts. ‘He never played much, did he, Pam? He used to line things up . . . he’d play with cars, and if he went out and you moved one, he’d return it straight to where it had been.’
Pam was the first to suspect that her son had autism, after she read an American article about the condition. Little was known about autism 39 years ago, so Tony was placed in a local school for the mentally handicapped.
‘It was like a mental asylum,’ Pam says. ‘There were about 30 or 40 of them in there banging their heads on the wall and screaming. They didn’t have many teachers. They had volunteers.
‘Tony was coming home from school so distressed, at night he was bed-wetting. I went up to the school and went to his classroom. I could hear him screaming. The volunteer was sitting on this box and the other kids were doing some drawing at a table.
I said: “Where’s Tony? Where’s my son?”
She got up and he was inside the box. She said: “Oh, we were playing a game.” He was wet-faced and he’d wet his trousers.’
Pam and Roy paid for a specialist to assess Tony. ‘She made a report that said he was very autistic and would need a lifetime of care.’
Pam applied for him to be sent to a different school but her application was rejected. By the time he was 17, Tony had been suspended twice and then expelled.
‘I started to teach him to read at home, with Jack And Jill books, but I think he was memorising it. I also taught him to write his name,’ says Pam. ‘Now he can’t even write his name where he is now. He sent me a card and wrote “T”.’
As Tony moved into adulthood, Pam and Roy began to struggle with his care. Although they insist he was never violent, he needed 24-hour supervision, which was exhausting. Naturally, they worried what would happen to him when they were no longer alive.
They approached adult services and, for a time, Tony spent three days at home and four days in care in Hastings. It was, says Pam, ‘absolutely fabulous’ until his carer changed and Tony took a dislike to the replacement. He was 21 when adult services suggested ‘a new autistic place’ — an assisted living flat in Lindfield, West Sussex.
As they waited for his accommodation to become ready, Tony was shuffled from one temporary place to another. He spent eight months 400 miles away in Wales, in a ‘great big old bleak house’, Pam remembers. ‘They had stained mattresses on the floor and all queued around a pot full of spaghetti. Tony’s room was right up at the top and it was so cold.
‘The curtains in the front room were on a string, the washing was piled up like a pyramid and everyone was walking about in my son’s clothes. Tone had a pillow with no pillowcase and an old blanket. We
‘We were so naive. I think now they were drugging him’
wanted to take him out but were told, be careful — if you take him out, they’ll section him.’
Tony lost 4st in Wales. Next, he spent six months in a secure unit in Croydon, where, according to Roy: ‘He was so heavily medicated he slept naked all night in a lockup and started having seizures.’
They took him home when they could but feared that if they removed him from care, he would lose his chance of an assisted living flat. Various care homes followed. Tony was, throughout this time, heavily sedated.
‘We were so naive,’ says Roy. ‘I think now they were drugging him up ready to section him. When I took him home, he complained he couldn’t lift up his head or his arms. Then I got a phone call saying they were trying to section him. I don’t know on what grounds.’
Whether there was an incident that led to the order, the couple don’t know. The decision was made in private. Tony was sent to the secure hospital — a twohour drive away from Pam and Roy — ‘temporarily’ and remains there today.
A spokesman for NHS England for the South-East says: ‘Mr Hickmott has complex care needs, with highly specialised support required . . . we continue to work with his parents and partner organisations to ensure the appropriate care and support is in place.’
Roy says: ‘We’ve been told that one manager there said to a carer, “Don’t worry about those parents. They’re old now. They’ve not got long until they die, then he’ll become a problem of the state.”
‘It’s when I see his dirty teeth it really gets to me. It makes my blood boil that they don’t get him to clean them.’ He points to a photograph in the album. ‘It’s wrong, isn’t it?’ You wouldn’t want your son treated like that, would you?’
It’s a rhetorical question. He knows no one would want any human being to be treated as his ‘lad’ has been.