Insight
'It was like a prison': Autistic boy kept in hospital for month after mum asked for help with care
Report by ITV News Scotland Correspondent Peter Smith and words by ITV News Producer Reshma Rumsey
Hayden Remi is a 10-year-old boy who just wants to go home but that looks more and more unlikely for him.
He’s spent the last month sectioned under the Mental Health Act in a general children’s ward in hospital because he has autism and learning disabilities.
He ended up there because his mum asked for help with his care because he has autism and learning disabilities, but a lack of facilities for people with his condition means Hayden spent four weeks in a room staring at bare walls with nothing but a plastic mattress on the floor.
His mother Jaycee said: "When I'm showing family members or friends the photos, they will say it looks like a prison.
"We were met with a lot of staff saying that they weren't trained to deal with autism or learning disabilities.
"It just made us feel like he was a problem and not a human being. He wasn’t dealt with any sort of compassion
"I would argue it's the wrong environment for any child. You wouldn't keep any child in the room that he was in.
"It was horrifying and there weren't really any attempts to make it better for him, to make it more personal to him so it would be more comfortable. It was like a holding pen."
‘You wouldn’t keep any child in the room he was in, it was horrifying’
It was in this environment where Hayden was supposed to be assessed for what care he might need. But it was the environment that made him worse.
His mum said: "He was just really not himself. He didn't want to draw all of the things he would usually be interested in.
"He just didn't want to anymore. Just watching him decline basically on a daily basis and not having anything to do about it."
"Every day I asked, Please can I will take him out. And I was told no.
"It was due to the weather or he's a bit upset today so we're not gonna take him.
"It's too dangerous. We've had to do a risk assessment. He's not allowed out so many days.
"He wasn't allowed out to see fresh air for 2, 3, 4 days at a time. He was stuck in that room and medicated to stay asleep effectively
Hayden also has severe allergies to dairy and his mother said she made that clear to carers but he was given food containing dairy, which triggered a severe reaction.
Jaycee says she’s been pleading for extra support but nothing came and it was only when she reached a crisis point that Hayden was taken in.
‘He stopped talking to us… he’d just look really vacant’
Until now, Hayden had never spent a night away from home and family.
Jaycee said she agreed to have him sectioned for assessment, because she felt she had no other choice to get him help.
She said: "He's 10 years old. He’s always been here with me. I've never, he's never spent a night away from home, ever from either me or his dad ever.
"So to have to, to call for help and not have anyone, it was really tough. Really tough."
Jaycee contacted ITV News after seeing our investigation into adults with learning disabilities and autism who are locked away indefinitely.
We revealed allegations that some are being sedated and put into isolation rooms when they don’t need to be.
And Jaycee fears this will be Hayden’s future.
Jaycee said: "I don’t know what his future looks like and when I saw the report there were so many similarities. It’s terrifying."
A spokesperson for Hertfordshire County Council said: “While we can’t comment on individual cases, it can be difficult to find suitable care and support options for children with complex needs, who often need a combination of specialist support services, and we are always striving to improve what is available locally."
A spokesperson for East and North Hertfordshire NHS Trust said: "Throughout his time at Lister Hospital, our staff provided round-the-clock care and did the very best they could to look after his extensive needs with compassion."
Currently, nearly 2,000 people with learning disabilities and Autism in England are being detained in inpatient wards and secure units, according to NHS figures, and of those nearly 10% are children.
Other parents in this situation have also contacted ITV News and told us they’re being intimidated into silence by the hospitals.
One parent we spoke to asked us to protect her identity as she and her family are terrified there could be repercussions for her son’s care, and her right to visit him.
Her son has been in detained for 10 years after initially being told he would only be kept for nine months.
The anonymous parent said: "I'm really frightened because I fear firstly contact with our child would be stopped.
"I fear that the support that he gets could change and I think it's, you can't underestimate how much we mean to him because we're his only family and by taking that support away, he'll have nothing.
"He already has so little. We're petrified for how he'd manage, and I'm petrified for how I'd manage not seeing him."
His family says they have no idea if he will ever come home and his mother admits she regrets ever asking for help from the authorities
She said: "We wish we’d never asked for help Because if help comes in the form of locking somebody in a so 24 hours a day with occasional leaves with no real meaningful life.
"No, no, I wouldn't ever have asked had I known. The system has swallowed him up.
"He hasn’t spent a single birthday or Christmas at home since he was locked away at 13. And his family say the system has failed him.
"He's a different person. He's at times suicidal. He's withdrawn, he's exhausted. He, he doesn't have a quality of life.
"It's been so detrimental too, to us as a family, having a family member go through this existence with real poor quality of human rights.
"The trauma, the abuse, the institutionalisation. I, when we hear of families at the start of this journey, it's soul destroying."
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This parent believes there are factors and issues, which need to be reviewed.
She said: "I think there's a real problem, whilst obviously the care and treatment of a person is at the forefront and there are pockets of good care, I think there is a bigger picture and it's a financial implication and we can't understand why there's not an independent body who decides when a person is discharged, especially when it's a private hospital that holds the person where a person's bed would cost, you know, anywhere up to a million pounds that hospital decide if they can be discharged.
"And I find that a real conflict of interests."
Anne Longfield the former children’s commissioner has been appointed by the NHS to chair a steering group to look into transforming care for children with learning disabilities and autism.
She told ITV News: "That kind of provision where children and young people are left languishing in institutions for any amount of time. It's not needed. It's something that has no place in this country or in any country We now need to make those a priority.
"I think it is a system which is broken for these very vulnerable children. It needs absolute leadership from the top, which is where governments come in and they need to make sure that there's a system that is accountable, that there are people who have that responsibility for these young people."
Hayden has now been moved to a respite centre and is much happier and settled but it’s only for a few days while the local authority continues to search for appropriate care.
Although this is a glimmer of hope for Jaycee, she says she’s terrified about her son’s future and that he’ll become another young person trapped in the very system supposed to help him.
If you have been affected by issues raised in this story and you would like to share your experiences, please email careinvestigation@itv.com