Elderly couple say autistic son has been 'trapped' in hospital for 20 years
They're still fighting to bring him close to home
Last updated 25th Nov 2021
The parents of a Brighton man with autism and a learning disability claim he's been 'trapped' in hospital for more than twenty years.
In 1997 when he was just 21-years-old, Tony Hickmott first went into institutional care.
In 2001, he was sent to a secure inpatient hospital which was only supposed to be for nine months.
Eight years later, the hospital placed him in segregation - a form of isolation.
In 2013, 12 years after he was first admitted, he was considered fit for discharge.
A further seven years later, Court of Protection proceedings began to look for care in the community for Tony to find accommodation for him, but still no resolution has been found.
More Birthdays and Christmasses have come and gone with no progress. His parents, Pam and Roy, say Tony's condition has continued to deteriorate.
Now, at 44-years-old, he is thought to be one of the longest-held patients in a secure unit in the UK.
Sky News said it had successfully overturned a gagging order to enable his parents Pam and Roy to speak about their frustrations.
"It's ruined our lives, Tony's life"
Pam, 78, and Roy, 81, fought back tears as they spoke of their exhaustion at the continued fight to find accommodation for Tony in the community with carers of his own - eight years after they were first told he could leave the hospital.
The couple can't bear to think of their son in the hospital when he could be somewhere more suitable.
Pam said: "It's ruined our lives. Absolutely ruined our lives, Tony's life. He's spent half of his life in an institution.
"Tony deserves to come home because that's all he lives for."
Tony has spoken of his wish to leave the hospital, telling his parents: 'I'll come home soon mum. I'm good enough now. I can come home.'"
Gesturing towards the dining table in their lounge, tears in his eyes, Roy said:
"And do you know what upsets me more than anything?
"When I'm sitting at that table eating a big dinner, a nice dinner cooked well and Tony's down there.
"I'd like to take my dinner down to him and give him it."
Distance has taken a huge toll on the couple
Pam and Roy have no choice but to continue with their routine of driving more than a hundred miles to the weekly visit they're allowed where Tony is in hospital.
And that is taking a huge toll.
Talking about the journey to see the son he affectionately calls "Tone", Roy said:
"Driving half way home I pull in and I'm sitting there crying.
"I mean I hate to say it - I sit there crying. For all the misery it's caused. I just think of Tone sitting there on his own."
"I just can't do another winter. I'm not coping. I've had it. I'm at the end."
As parents they have grown old whilst this fight has dragged on to get Tony out.
Delays in discharge described as "egregious" by judge
In 2018 the local authority told Sky News they were working to get the care sorted for Tony "as soon as possible."
But since then Tony's care has been subject to a court of protection case and reporting restrictions were imposed which prevented the identification of Tony and his parents and prevented them from discussing the continued failure to find him somewhere else to live.
They have now been lifted following an application by Sky News and the BBC.
At a recent court of protection hearing a timetable was established to push all the agencies involved in Tony's care to make the progress necessary to get him out, but that could be months away.
The Court of Protection judge hearing the applications to lift the transparency order in place said that it was in the public interest to tell the story of a man that has been detained for many years beyond the point he was fit for discharge.
At an earlier hearing, the judge described the delays in his discharge into the community as "egregious".
"This is home, this is comfort"
All agencies involved in his care agree the current facility is not appropriate for his needs and he should be placed in a community setting.
Pam and Roy say Tony still talks about his home town of Brighton and they hope somewhere will be found for him to live close to them.
Pam said: "It's all he knows. It's home, isn't it? This is home. This is comfort. He loves the pier. We used to go on there and have fish and chips and candy floss. In the lovely summer evenings, we used to do a walk along the seafront."
A spokesperson for NHS England in the South East said: "The NHS in the South East is continuing to work closely with Mr Hickmott, his family and the local commissioner involved in his care.
"Mr Hickmott has complex care needs with highly specialised support required to meet his needs and we continue to work with his parents and partner organisations to ensure the appropriate care and support is in place."
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