Pam Hickmott couldn’t believe her eyes when she first spoke to Tony, her 44-year old son. “Can I go home?” He begged. “I’d like to be home.” Home, please.’
She tried to comfort him by saying, “Soon Tone. I promise you’ll get home soon. I promise.’ Her son with autism couldn’t even be consoled by the phone.
‘Not soon. Now. He said, “I want to go now.”
Tony was incarcerated in a private hospital for over 21 years. Tony is extremely unhappy and a whistleblower told the BBC just over a year ago that Tony was the ‘loneliest man at the hospital.
Phil Devine was a support worker at the Assessment and Treatment Unit from 2015 to 2017. He told how this adult with learning disabilities, autism and epilepsy had his most basic needs met and was kept in isolation.
BBC News: He said that although he had not committed a crime, he was being held in isolated confinement. He was fed, watered, and cleaned. It would be wonderful if something happened that was not already mentioned. But if it did, it was okay.
Roy and Pam Hickmott with Tony, their autistic child. Tony was 13 years old in 1990. It had been a little over a decade since he was last held in jail.
This weekend, a newspaper reported the separate case of ‘Patient A’, a 24-year-old autistic man who has been confined in a small secure facility — the Priory Hospital Cheadle Royal, in Cheshire — since 2017.
Roy and Pam, Tony’s parents, told me the shocking revelations weren’t surprising them. Their son was hospitalized under Mental Health Act 2001. He was the same age as Patient A. They are now trying to move him to appropriate housing near Brighton.
Roy says, “We were informed he would only be there nine months so we went to take a look,”. ‘It was brand new and there were only two patients in it — a girl and another young lad.’
The man who was showing them around rang alarm bells when he asked Roy and Pam if they had seen their son from the court. He asked the couple if he had, and they replied that he didn’t. Then he said chillingly, ‘We have a man here who’s murdered a baby. If he was able to escape, he would again kill. This is where you want to raise your son.
Of course it wasn’t — but the couple were powerless to prevent it. Tony came in, and was immediately put into seclusion. Pam remembers Tony screaming for help as they left.
Roy (81), a retired cleaner and Pam (78), a former hospital manager, love their son. There are many photos of Tony in their immaculate living room. More recent ones — of him looking grubby and unkempt — are kept in albums.
They should enjoy their retirement. They instead fight relentlessly to get their son released.
Roy says that people often ask him why he doesn’t live his life to the fullest. “This is my life,” I tell them. That’s it. These are your cards. You must see him. I’m his lad. Look.’
Roy and Pam Hickmott, Brighton, East Sussex. Tony’s parents would like him to be in better housing near their home.
He showed me a picture of him holding a teenager in his arms, almost as recognizable today as the 44 year-old. Roy tells me, “The father with his lad,” and it makes you want weep.
Tony is among more than 100 people living with learning disabilities and who are currently held at specialist hospitals for over 20 years. The Mail On Sunday featured Tony’s story in their campaign to end abusive detention of persons with autism or learning difficulties. This exposed the long-term use solitary confinement as well as forced sedation.
Pam is right to believe that “it all comes down money”, whether she’s right or not. The NHS funds care in specialist hospitals — Tony’s is understood to have run to £10 million — while local authorities must fund care in the community.
The local Brighton and Hove authorities are free to keep Tony at the low security hospital as long as he is there. Although he was declared fit for discharge by psychiatrists in 2013, his local authority has not yet found him a home.
For their part, Brighton & Hove City Council state: ‘Tony has extremely complex needs. He currently lives in an out-of-town facility, which offers him the best care and high staffing to manage his complex needs.
“We understand the challenges Tony’s parents faced over the years in seeing their son and we are extremely sympathetic to their circumstances. Tony’s parents, NHS colleagues, and a new provider of housing are all currently in contact with us. Over the next months we will be actively exploring options that would meet Tony’s needs and those of his parents.
Roy and Pam had just gone to Christmas thinking they’d found a spot: 20-minutes away from where they were staying. The couple even let themselves get excited. . . Before their hopes crashed. Pam could only say that there was a problem.
They are now back to their weekly routine of leaving home at 7am and arriving at the hospital at 11am. Tony has expected them.
Pam explained that people with autism can become very distressed when their daily routines are disrupted or there’s too much noise. The hospital is plagued by noise. Tony houses four patients in secure rooms above his head. Alarms go off frequently, with sounds such as banging, screaming, and stamping.
Tony pleads with Roy and Pam to take him along when they leave. Each time they visit, their hearts are broken a bit more.
While some of those in the hospital had been convicted, others, such as Tony Hickmott (pictured), were held under the Mental Health Act.
Pam says, “Sometimes it is necessary to pull over in order for me to have a good cry.”
‘For the first nine year, we had to meet him in this room. He was brought over by the team and taken back. He had eight other people with him. He looked tattered, white, ragged, and drugged up. One time he had only a dressing gown.
“He served on the unit for nine years until his arm was broken. Brighton was contacted by me. [Council]I told them that I wanted him to get out. I would like him to be taken to a safer place.
They had a huge meeting about it, and he decided that he could not live with the eight other people because they couldn’t get along. They were violent and aggressive. They had come from the court.
Tony moved into a unit with 2 rooms in the facility. He also had his own staff, and was able to use a van for transportation on outings.
Pam states that it was “the best three years” he ever had. ‘We had no incidents. He seemed happy. He went out. His doctor was wonderful. She stated that she wanted to help him find a safe and comfortable place near his home. The lovely doctor then left. Tony had to leave when the doctor left. He was no longer able to do his routine and he could now just sit in his room, watch TV.
The screaming and banging continued until other patients arrived at the hospital.
Pam claims that Tony was a “normal” baby, who could stand up and say ‘dada’ or’mama”. He became very ill around his first birthday and spent the following eight months in hospital.
When her two-year old son was just two years old, a friend mentioned his condition to her.
She said, “The trouble with having a mentally handicapped kid is… . .’ Pam will always remember.
“It hit me in the face. “What are you trying to say?” My mother said that my son was mentally handicapped. My response was: “Noone has ever said it to me.” It’s been eight months since I arrived here, and no one has ever mentioned it to me. ‘
Roy interrupts. Pam interrupts. He liked to align things. . . He loved to play with cars and would return them back where they were.
After reading an American article on the condition, Pam became aware that her son was autistic. Tony was placed at a school for mentally disabled because there was not much information about autism back in 1979.
Pam said that it was like an asylum for mental patients. There were 30-40 of them banging their heads against the wall, screaming, and they were all very loud. There weren’t many teachers for them. Volunteers were available.
Tony was so upset when he came home from school that he would sleep-wette at night. I went upstairs to see him and then went into his classroom. His screams could be heard. This volunteer was sitting at the bottom of this box, while other children were working on drawing at tables.
While Mr Hickmott still awaits local authorities’ help to find him a good home, his parents Roy (left), and Pam (right), are fighting for him to be rehoused within the community.
“Where is Tony?” I replied. I said: ‘Where’s Tony?
He was in the box when she got up. He replied, “Oh, it was a game.” He looked wet and had wet his pants.
Roy and Pam hired a professional to evaluate Tony. According to her report, Tony was autistic with a need for life-long care.
Pam tried to send him to a new school. Her application was declined. Tony was 17 years old when he was expelled from school twice.
“I taught him how to read by teaching him at home with Jack And Jill books. But he seemed to be memorising the words. Pam also taught him how he should write his name. “Now, he cannot even write his own name. He wrote T on a postcard he sent to me.
Pam and Roy struggled with Tony’s care as he grew up. They insist that he wasn’t violent but he required 24-hour supervision. This was exhausting. They worried about what would happen when he died.
Tony was referred to adult services. He spent four days in Hastings and three days at home. Pam says it was ‘absolutely fantastic’. But then his caregiver changed, and Tony began to dislike the new carer. He was 21 when adult services suggested ‘a new autistic place’ — an assisted living flat in Lindfield, West Sussex.
Tony moved around from one place to another while they waited to find his accommodations. Pam recalls that he spent eight months in Wales for 400 miles, living in a “great big old, bleakhouse”. According to Pam, they had stained the floors and gathered around a pan of spaghetti. Tony’s room was up high at the top, and it was freezing cold.
“The front room curtains were tied with a string. The washing pile was like a pyramid. Everyone was wearing my son’s clothes. Tone had an un-cleaned pillow and an old blanket. We wanted to take him out but were told, be careful — if you take him out, they’ll section him.’
Tony gained 4st while in Wales. He then spent six months in Croydon in a secure unit. Roy said that he was heavily medicated and slept naked in the lock-ups all night, which led to seizures.
He was taken home as soon as they were able, but they feared that if he was removed from their care, it would mean that he wouldn’t have the chance to live in an assisted living apartment. Various care homes followed. Tony was heavily sedated throughout.
‘We were so naive,’ says Roy. “I believe now that they had drugged him up and ready to cut him. He complained that he could not lift his head and his arms when I brought him home. After that, I received a call from them stating they wanted to seperate him. “I don’t know what the grounds are.”
They don’t know whether there were an event that caused the order. It was decided in privacy. Tony was sent to the secure hospital — a two-hour drive away from Pam and Roy — ‘temporarily’ and remains there today.
According to a spokesperson for NHS England South-East, Mr Hickmott requires highly skilled support and has complex needs. . . “We continue to collaborate with his parents as well as partner organisations in order to provide the best care and support.”
Roy said: “We were told by a manager that he had spoken to a caregiver and that they should not worry about their parents. They are now old. It won’t be long before they’re gone, and then the state will have to deal with him.
His dirty teeth really get to me. I am so upset that they won’t clean his teeth. He pointed to the photograph in his album. ‘It’s wrong, isn’t it?’ It’s wrong. You would not want to see your son treated that way.
That’s not a question. No one wants to treat any other human being as his lad’ has been.
Mother condemns autistic son’s treatment in harsh words
BY KAYA TERRY MAILONLINE
A mother has slammed the treatment of her autistic son who was admitted to a psychiatric hospital for young people and adults four years ago – and has been detained behind a hatch in an old file room.
Nicola (50) often feels overwhelmed when visiting her son, known as patient A, 24 years old. He has ‘become totally institutionalized’ and is able to spend most of his time by himself, without having any contact with anyone.
Staff leave him alone to eat and wake up at night.
Patient A, who also has a learning disability and Tourette’s syndrome, has been detained under the Mental Health Act since September 2017.
Nicola, 50 years old, has blasted the treatment of her autistic boy who was admitted into a psychiatric facility for adults and young people four years ago. She has since been kept behind a hatch (pictured), in an older file room.
The secure 423 square foot apartment which features a garden – with a cycling track and trampoline – a snug room, lounge, bedroom and bathroom
CCTV monitors the apartment 24 hours a day. It is approximately the same size as a large living area.
After he began lashing at his mother, grandparents and brother regularly at 14 years old, he was admitted at the Countess of Chester Hospital to a unit that treats severe mental illnesses.
Nicola claims that her son was a normal child up to the age 12 and had a happy childhood. At the age of seven, he was diagnosed autistic. Later, at age 12, Nicola discovered that he had Tourette’s syndrome and a learning impairment.
By age 20, he was admitted to Mersey Lodge at Cheadle Royal Hospital and spends his time in a secure 423 square foot apartment that features a garden – with a cycling track and trampoline – a snug room, lounge, bedroom and bathroom.
CCTV monitors the apartment 24 hours a day. It is approximately the same size as a large living area.
Cheadle Royal Hospital received the CQC report in November. It was rated’required improvement’. Inspectors also gave it an ‘inadequate rating’.
Nicola stated that people wouldn’t care for an animal like she does her son, and that his treatment is ‘worse’ than being held in jail.
Nicola stated that she sometimes has to leave the place just so she can breath in an investigation by The Sunday Times.
“Being stuck in a box doesn’t work for autism.” Only thing that he can look forward to is what I give to him. A PlayStation. A mobile phone. Films. Takeaways. He is constantly being watched in each room. This is a life that a 24-year old can live.
During the visits with her son, Nicola ‘dreads’ going into the viewing room where she sits on a chair and speaks to her son through an ‘eight-inch gap underneath a Perspex screen’ because she is faced with the ‘reality’ of her son’s situation.
Liverpool resident Nicola will launch a court battle at the Court of Protection for her husband’s release from his life in a Box’.
She would like a judge review the sectioning of the Mental Health Act to give her a path to a good home.
Nicola asks Liverpool Clinical Commissioning Group (License City Council) to assist her in arranging a placement for her community.
She explained that while we are aware of the complex needs of my son, he is being treated horrendously.
He is isolated from the rest of the world and doesn’t have any contact with people. His meals must be shoved through tiny gaps in the hatch’s bottom.
“People don’t want to treat an animal this way. I believe that his care would be worse than being locked up.
“He faces challenges, but is loving, caring individual who requires stimulation and support.
“He has no money at the moment. Due to the circumstances he was kept in, it is difficult for me to hold or hug him.
Nicola asks Liverpool Clinical Commissioning Group (License City Council) to work with her towards a community placement.
Nicola shared that her son wakes early every morning, uses computer games most of the time and eats through a hole in the wooden hatch.
According to her, the best support will allow him to thrive and be able spend more time with his loved ones.
She said, “Everytime that I see him, it breaks mine heart. His life is a mere existence.
“Some of the people involved in my son’s care have told me that the system isn’t working, and that Patient A, with the proper support, could be taken care of in the community.
It’s hard to believe that he will be unable to leave the hospital for as long as he has.
It’s not about the money. He is accompanied by five caregivers.
“This level of staffing can be costly, and it is likely a waste money since he doesn’t have any contact with anybody.
“We continue to ask for support to my son, but it seems that nothing is happening. This is the only option that we have left: to act.
“All that I desire is for my son to have the best possible life.
Kirsty Stewart, an Irwin Mitchell human rights and public law expert, represented Patient A and Nicola.
Nicola’s firsthand description of what is happening to her son, “is probably the most horrible I have ever heard.”
“Understandably patient A’s family is deeply worried. These concerns are being investigated and the legal process is being used to help the family.
“We appeal to The Priory and CCG to negotiate with Patient A’s family about the care of their loved one. The family feels that the patient should remain in the community because it will give them the greatest quality of life.
The NHS Digital data shows that 2,040 persons with learning disabilities or autism were present in hospitals as of the end August.
One hundred and fifty-seven percent of them had spent more than two years in the hospital.
The average cost to the tax payer of keeping a person detained in hospital is thought to be £3,563 per week or £185,276 per year.
MailOnline was told by a Priory spokesperson that the welfare of those we care for is our top priority. The Transforming Care Agenda is our top priority. We will ensure that well-planned transfers are made to the best community settings when they are available.
Cheadle Royal Hospital, which was published by CQC in November was given the summary of its condition and was called’required improvements’. Inspectors on safety also considered it to be ‘inadequate.
“Our Adult Care division has provided placements for at least 39 people with positive outcomes. Some individuals can have very complex behaviors and are subject to the Mental Health Act. It is sometimes difficult for them to be placed, despite everyone working hard over long periods of time.
“At all times, we collaborate with family members, commissioners and the NHSE to make sure that patients receive the best, safest care possible in our hospitals. This care is provided and reviewed regularly by a multi-disciplinary team, which includes a consultant psychiatrist, an NHS autism specialist and commissioners.
Mersey Lodge’s staff provide 24-hour support. All interventions are reviewed and monitored to make sure they are best for patients.
A consultant psychiatrist always prescribes medication. Patients are subject to the MHA and must be approved by another independent CQC doctor. To ensure safety, we aim to limit the dosage of medications.
The spokesperson noted that they ‘operate on the principle that family and carers always have access to the accommodation, subject to risk assessment’ and the accommodation was ‘purpose built and fully renovated to provide the care package that has been commissioned by the Clinical Commissioning Group’.
The doctors stated that patients’ family had input on the design and supported the provision of accommodation. They also said that it was inaccurate to say that meals were slid through the bottom of wooden hatches. However, the facility has a serving hatch inside the door that allows for items in a wide space, including trays.