EVERY week, Patricia Alban-Stanley sits on the terrace of her local Wetherspoons, next to a memorial tree for her son Sammy, and orders a lime soda.
It was their tradition, when her beloved son was alive.
Patricia, 55, said: “Sammy gave my world colour. That’s the only way to describe it.
“He was so special. People would come to the house to see him because they felt so uplifted by him.
“He was like a golden light of purity and people would say, ‘I just love that boy.’”
The loving teenager, who was born with Prader-Willi Syndrome – the same condition Katie Price’s son Harvey has – died when he was just 13.
And it’s “probable” his tragic death – which came after he was discovered at the bottom of a cliff – was down to a lack of support.
New research shows just 18 per cent of people think England’s one million disabled children are getting the right support from local authorities and the NHS.
The poll, conducted by the Disabled Children’s Partnership coalition of 90 charities, also revealed 73 per cent of respondents believe delays to care for disabled children during the pandemic are unacceptable.
Despite repeated pleas from his desperate mum Patricia, who described Sammy’s “life-threatening” episodes and “suicidal” tendencies, the family was left without adequate support.
Even the 29 emergency calls Patricia made to the police when she couldn’t physically cope with the might of a growing teenage boy, who was also autistic, did not result in any extra help.
At an inquest into his death last month, assistant coroner Catherine Wood said Kent County Council had failed to provide help for Sammy’s care.
In her damning report, she said: “It was possible if not probable that a failure to provide extra support contributed to Sammy’s death.”
On one terrifying occasion, Patricia told her three daughters to “look away” as she desperately clutched at Sammy’s coat to stop him throwing himself out of their car and onto a busy dual carriageway.
Patricia said: “Sammy’s episodes could start over something very small.
“On that day, it was because his phone charger had broken. He opened the door and he was getting out and all I could do was hold onto him.
“Everyone was screaming. There were lorries coming past and I told the girls to look away because I thought we’d lost him.”
Fortunately, some members of the public called the police, who came and cordoned off the road and took Sammy to A&E.
Patricia said: “We sat there waiting for about eight hours. It was horrendous. Nothing was done and nothing came of it.
“Sammy wasn’t normally like that, it wasn’t all the time. It was like something in his brain couldn’t cope with disappointments and he would go into a sort of seizure.”
The Sun's campaign Give it Back, supporting the DCP is urging the Government to plug a £573 million funding gap in care and support for disabled children.
A poll of 2,000 people by the DCP also showed 64 per cent of people think local councils and health services have a responsibility to provide respite and breaks from caring to families.
Amanda Batten, Chair of DCP and CEO of Contact, said: “The Sun and the Disabled Children’s Partnership have been sounding the klaxon for years that support for disabled children and their families is at dangerously low levels.
“This can have tragic consequences, such as the death of Sammy Alban-Stanley where the coroner found that a lack of help for his family probably contributed to his death.”
To find out more go to www.tinyurl.com/CountDisabledChildrenIn
Despite his needs and constant requests from Patricia, from 2018, Sammy spent 13 months out of school.
Patricia said: “There had been lots of mixed messages. I was told the local special needs school was full, then that he wouldn’t fit in with the cohort, even though I knew it had all the safety features in place for him and it was the right academic level.
“When Sammy was reassessed, they focused on the positives of what he was capable of doing and removed his Education, Health and Care Plan (EHCP) entirely.
“It meant he had to enrol in a mainstream school but they refused Sammy a place for health and safety reasons so he ended up being out of school for over a year.”
During that time, Sammy not only missed out on his rightful education, but Patricia was scared he would harm himself.
She said: “He could have had an episode. They were life threatening then and it put him in danger.
“To me it was a horrendous, dangerous, irresponsible thing to do.”
Sammy was a creative boy who was talented at carpentry and upholstery and also played the piano.
On his birthdays, he ate “jelly cake” and he wrote letters to Patricia telling her how much he loved her.
They went swimming to help his muscle tone, which can be a problem with Prader Willi, and Patricia taught Sammy to choose five items per meal to prevent overeating, which can also be a common issue with the condition.
“He was really special,” Patricia, an upholsterer from Ramsgate, Kent, said. “I just miss him so much.”
Neither Kent County Council nor the mental health service North East London Foundation Trust offered any effective ongoing support. For some unfathomable reason, Sammy was not deemed to fit with the criteria of the council’s Children with Disabilities team.
Patricia’s only option during one of Sammy’s episode – as advised by social services – was to call the police. Of the 29 calls she made, there were 13 referrals made by the police to the county council.
Twice, Sammy was detained under the Mental Health Act.
At Laleham Gap school, where Sammy finally earned a place in 2019, he once swallowed needles and had to be treated at hospital.
Staff were worried about how Patricia could cope at home, on her own, and relayed their concerns to social services.
We were at crisis point
Patricia Alban-Stanley
It was only in June 2019, when Patricia’s GP wrote to the local authority telling them Patricia was at “breaking point” that the family was given a carer for 10 hours a week, and even then, the promised help didn’t appear until January 2020 when Kent County Council actioned the payments.
Patricia said: “I was desperate. Sammy was carrying out a lot of self-harm.”
Then lockdown hit in March 2020, again removing Sammy from school because he was deemed to be at risk and needed to shield, despite being a vulnerable child who should have been entitled to continue at school.
Instead, he was at home, and Patricia had just two hours of help per day, Monday to Friday.
Removed from his usual routine, Sammy’s condition worsened. What was already a difficult situation became almost impossible.
At this time a doctor made a referral for a specialist psychiatric hospital, the Maudsley, in London. Unbeknown to Patricia, the Children with Disabilities team already knew about this facility but had done nothing about it.
Patricia said: “They have a special unit that can help people with rare disorders like Prader Willi. The CWD Team could also have done a carer’s assessment and given Sammy respite care. This was all flagged up in the inquest.
“I wasn’t asking for the world. I just wanted a few extra hours of help at home because Sammy was getting bigger and the episodes were too physically hard for me to cope with.
“We were at crisis point.”
The referral came too late to help Sammy.
On April 22nd, 2020, Sammy slipped out of the family home unnoticed and was found very soon afterwards at the bottom of a nearby cliff.
He was airlifted to King’s College Hospital, London, where Patricia lay in Sammy’s bed with her precious boy, stroking his hair and telling him she loved him for four agonising days.
Patricia said: “He was sedated but I hope he could hear me. His dad was there too, we didn’t leave his side.
“It’s the worst thing any mother can go through.”
The coroner’s verdict came as something of a relief, but of course nothing can bring Sammy back.
Patricia said: “It’s a scandal that parents of disabled children have to push and push and push for help.
“It’s more than a fight. You are stopped from getting anywhere, it’s denial after denial.
“You spend so much time battling when what you should be doing is being a mum and doing therapies with your child and spending your time loving them.
“The coroner’s verdict was very strong, she was very critical.
“I truly believe that a failure to provide us with adequate support led to Sammy’s death.”
Assistant Coroner Catherine Wood noted at the inquest that the Children with Disabilities team at Kent County Council had not assessed Sammy as they considered, on paper, that he didn’t meet the criteria for their support.
It meant Sammy was seen by social workers who were unfamiliar with the services that could have helped Sammy.
Ms Wood’s report also criticised the mental health service at the North East London Foundation Trust.
Patricia’s solicitor Anna Moore, of Leigh Day, said: “Patricia did all she could to provide Sammy with a loving home and supportive family unit.
“She could not have done any more.
“It is completely unacceptable that her requests for adequate support to keep her son safe were refused at every turn, leading to this incredibly tragic but sadly predictable outcome.
“I hope the local authority and mental health services reflect on the findings and ensure no family in its care has to go through the same trauma.”
