A coroner has called for action by the government to prevent further deaths after a disabled boy died following inadequate support from authorities.

Sammy Alban-Stanley, from Ramsgate, fell from a cliff during lockdown in 2020, leaving his family devastated.

The 13-year-old had previously repeatedly tried to harm himself during "dangerous and life-threatening" behavioural episodes caused by rare condition Prader-Willi Syndrome (PWS).

But despite desperate pleas from his mother Patricia Alban for extra support from Kent County Council, and children and adolescent mental health services (CAMHS), she was told he "did not meet the Children with Disabilities criteria". Instead, he was assessed as at low risk of self harm or suicide.

Yet on the morning of April 22, 2020, after a behavioural episode at home, unknown to his family he left his house and climbed over the railings on Ramsgate clifftop, tragically falling despite efforts from passers-by to help him.

Sammy, described as an absolute joy and pleasure, fell backwards, sustaining head injuries from which he died four days later.

At an inquest in November, assistant coroner Catherine Wood found that he died as a consequence of injuries sustained during an episode of high-risk behaviour related to PWS on a background of inadequate support from the local authority and mental health services

Now, she has published a Prevention of Future Deaths report, which is being sent to the Secretary of State for Health and Social Care Sajid Javid and the NHS Kent and Medway Clinical Commissioning Group.

In the document, she says in her opinion there is a risk that future deaths could occur unless action is taken by authorities.

She lists matters of concern relating to Sammy's case, including evidence of a lack of support for families of children with rare diseases such as PWS and a failure to help deal with his high risk behaviour.

Miss Wood also highlights the inadequate communication between the agencies involved in his care.

"Had he, and his family, had more practical help and support this may have made a difference to his high-risk behaviour and ultimately his death," she states.

"It was clear at the hearing that Kent County Council had taken steps to change the way their services were delivered following Sammy’s death, but it is predictable that a similar incident may arise in other areas if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe."

Mr Javid and Kent and Medway CCG have 56 days to respond with details of the action they have taken or proposed action to deal with the concerns.

Commenting on the Prevention of Future Deaths report, Mrs Alban says she is grateful to the coroner for her careful consideration of the issues surrounding Sammy's death and her recommendations to address these on a national level.

"If recognition of what happened to Sammy results in action to prevent this from happening again and changes outcomes for people with PWS and other neurological conditions, it brings me some comfort in the face of the devastating and unnecessary loss of my beautiful, special son," she said.

Copies have also been sent to KCC and North East London NHS Foundation Trust (NEFLT), which runs CAMHS.

At an inquest in November, it was heard that during PWS episodes – described by a doctor as "predictably unpredictable" – Sammy's behaviour had become unmanageable and put his life at risk.

He would lose control, self-harm and attempt to take his life.

He had previously tried to drown himself in the sea, attempted to jump from Ramsgate harbour and run into moving traffic on a motorway, while his mother and others – sometimes his siblings or bystanders – would try to restrain him.

Afterwards terrified Sammy, who loved playing the piano, horse-riding and carpentry, wouldn't remember what had happened.

There were more than 29 police contacts and at least 13 referrals made by the police to KCC. On two occasions he was detained under Section 136 of the Mental Health Act.

Mrs Alban said she had been struggling to manage the episodes, particularly as he grew bigger, and was in desperate need of support at home, outside of school hours.

But during the inquest it was heard that the Children with Disabilities (CWD) team at KCC would not even assess him or get involved, and that CAMHS would offer only medication.

In July 2019, Mrs Alban was finally given two extra hours of help at home a day by KCC, which took six months to start.

Sammy had also spent a year out of school after the family relocated from Hampshire to Kent in 2018, at which point KCC removed his Education Health and Care Plan - a legal document for children with special educational needs - insisting he should be in mainstream school.

After a lengthy battle by the family for an SEN school, he was eventually able to get a place at Laleham Gap in Ramsgate, where he was thriving.

But from October 2019 onwards, his behavioural episodes became more frequent and by March the following year Mrs Alban was having to call the police almost every day.

Mrs Alban said the family was at crisis point and they were not being given the support needed to keep her son safe.

During November's hearing, she said Sammy, who also had autism and anxiety, fell through the cracks of the system.

"He was deemed not disabled enough to be awarded a proper level of care yet he was too disabled for me and my daughters to manage at home," she said.

In an emotional statement after the inquest, she said Sammy bravely faced what society threw at him, persevering to try to overcome challenges arising from his disability.

"Whilst he had a great many struggles due to his disability fitting into this world, his soul was gentle and resonated the deepest, most resounding love I have ever known," she said.

"He brought joy and comfort to all who knew him, changed people’s lives for the better, he made my life multi-dimensional and multi-coloured. He made the world a much nicer place."