Parents of autistic man share turmoil of fighting for his freedom

Parents of autistic man, 45, who spent 21 YEARS in a secure hospital claim he was ‘neglected’, dressed in shoes which were two sizes too small, and didn’t even have control of his TV remote

  • Tony Hickmott’s mother Pam, 78, opened up about struggles faced by her son 
  • She slammed the care Tony, 45, who is autistic, was receiving at secure hospital
  • Her and her husband Roy, 82, told This Morning Tony was ‘neglected’
  • After 21 years, Tony will finally be released on October 31, much to their delight

The parents of an autistic man, who has spent 21 years in a secure hospital, have spoken about the traumatising ordeal of fighting for their son’s freedom.

Tony Hickmott’s mother Pam, 78, and father Roy, 82, from Brighton, described the ‘neglected’ conditions he was put through while in care, including being dressed up in other people’s clothes and having a ‘hatched door’.

The pair – who will see Tony, 45, freed on October 31 – also opened up about feeling ‘alone’ as they dealt with the ‘nightmare’ of the Assessment and Treatment Unit in an emotional interview.

Speaking on This Morning, they stressed their belief that ‘no autistic person should be under the Mental Health Act’.

Tony Hickmott’s mother Pam, 78, and father Roy, 82, (both pictured) described the ‘neglected’ conditions their son was put through while in care

Roy and Pam with their autistic son Tony aged 13 in 1990, a little more than a decade before he was incarcerated in a secure Assessment and Treatment Unit

Pam revealed that while Tony was ‘educationally failed’ and had been excluded from school, he initially got a placement with the Autistic Society. As he moved into adulthood, Pam and Roy began to struggle with his care.

Although they insist he was never violent, Tony 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, Pam had in earlier interviews said, ‘absolutely fabulous’ until his carer changed and Tony took a dislike to the replacement.

Tony (pictured), now 45, was sectioned under the Mental Health Act as a young man in 2001 and moved from his parents’ home in Brighton, East Sussex 

Pam (pictured) revealed that while Tony was ‘educationally failed’ and had been excluded from school, he initially got a placement with the Autistic Society

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 – before eventually finding himself at a 40-bed unit near Canterbury, Kent.

‘He was sent for nine months and that’s what it should’ve been,’ Pam explained. ‘But we found, once you go in those doors – very hard to get out.’

The parents told Alison Hammond and Dermot O’Leary about the conditions their son faced, saying he was in ‘isolation’ and didn’t even have control of his own television remote.

Pam opened up about feeling ‘so alone’ as her and Roy (pictured) initially didn’t know a lot of parents in same situation

She voiced the frustration of not having proper legal aid to help her son, despite him having an official solicitor and being ‘fit for discharge’ since 2013

They were able to go in and sit with him for two hours after a while – Roy said he used the precious time to shower Tony and do his nails, saying the facility never took care of him.

The parents described seeing their son ‘dressed up in other people’s clothes’ and ‘in shoes that are two sizes small’. 

‘We begged for him to be moved,’ Pam said. 

How patients are being sectioned and sent to ‘short-term’ ATU placements for years

Assessment and Treatment Units are designed to be short-term secure placements for people with learning disabilities to receive treatment before moving back into the community.

However, all too often, patients are being sectioned under mental health laws and sent to ATUs where they languish for years.  

People with autism placed in ATUs are particularly vulnerable: they can respond badly, even aggressively, to anxiety, stress or unexpected events.

Many sectioning orders are for a maximum of 12 weeks, but patients can then be shifted into a different category of indefinite length – although there are meant to be discharge plans made from the start.

According to data released last year, the average stay for these patients at ATUs is five and a half years.

Without proper help from trained staff, stress levels for people with autism and learning disabilities can spiral as they react by fighting, fleeing or freezing. They can then get stuck in seclusion, sedated with drugs as their issues intensify.

Tony’s mother also described the isolation she felt as the pair navigated the process of sorting out care for their autistic child in the early 2000s. 

‘We didn’t realise we weren’t having the proper mental health tribunals or things to get him out,’ she said. ‘He was getting worse…and worse…he did have a broken arm in a couple of places….it wasn’t followed up for months…’

Pam opened up about feeling ‘so alone’ as her and Roy initially didn’t know a lot of parents in same situation. It was her daughter who encouraged the mother to get online for support and more info on the topic.

She voiced the frustration of not having proper legal aid to help her son, despite him having an official solicitor and being ‘fit for discharge’ since 2013.

‘Why haven’t they in 21 years got my son out,’ she told the morning talk show. 

She added: ‘No autistic person should be under the Mental Health Act…’cause you can’t “cure” autism, it’s not a mental illness…’

Pam also said that while the struggles of autistic people’s care has become more publicised, the scale of the issues remains immense. 

‘My son’s been so ill-treated…people don’t believe this is happening now,’ she said. ‘When I go out I want to take them all out with me…you all deserve a life…’

The pair also felt disappointed by statements ITV had read out on behalf of Robert Persey – Brighton & Hove Council’s executive director for health – and the NHS.

Pam said: ‘They spend millions, millions and millions on my son…he could’ve lived at the grand hotel for what they’ve spent.’

Mr Persey’s statement said: ‘We hope very much that the arrangements putting in place for Tony’s care work for him and his family. We’re really sorry this has taken so long. It’s very complicated trying to get all the elements like housing and care…ready at the right time. 

‘…We have a responsibility to look after people such as Tony to the best we can and we remain committed to doing so…’

Meanwhile an NHS statement said: ‘We have worked closely with this patient and his family and the local commissioners to ensure his complex care needs are met and we continue to work with his family and our partner organisations to support this ongoing care…

‘The NHS is committed to reducing the number of people with a learning disability and autism in a mental health impatient setting so they can get the care they need at home or in the community wherever possible and since March 2015 this has already reduced by almost a third.’

The parents – who will now live five miles away from Tony – said they’re most looking forward to ‘cooking a meal’ for him and sitting at the table as a family.  

Tony was sectioned under the Mental Health Act as a young man in 2001 and moved from his parents’ home in Brighton, East Sussex to a secure hospital more than two hours away. 

The parents – who will now live five miles away from Tony (pictured) – said they’re most looking forward to ‘cooking a meal’ for him and sitting at the table as a family

Carers at the secure unit said he was left marooned in a locked room almost 24 hours a day in the hospital facility, enjoyed little freedom and spent all of his time ‘in solitary confinement’. 

Tony has been at the centre of a furious battle between his parents, MPs and campaigners and the local authorities to find him a safe and suitable home in Brighton since he was declared ‘fit for discharge’ in 2013.

Pam and Roy have bravely fronted the fight to get their son rehomed in the community, and he is now expected to return to his hometown for the first time in 20 years. 

Pam earlier this month shared her delight at the news that her son would finally be coming home after more than two decades, speaking to the BBC.

‘He’s coming home, I can’t believe it. It will be a real home. We’ll get him and every day will be a bonus. 

‘I’m overjoyed. It has been a long, long road and we have had to overcome huge hurdles to get the authorities to see sense but we are delighted we will finally have our boy back.’

ATUs are designed to be a short-term safe space used for people living with learning disabilities in crisis. 

Tony’s parents were initially told he would spend nine months in the secure unit until a suitable home was found for him in the Brighton area. 

But he has since become one of 100 people who have spent more than 20 years in secure medical wards – locked up alongside criminals and others prone to violent outbursts.

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