The mum of a 13-year-old Ramsgate schoolboy who died amid a lack of support from health and social services organisations says he has been failed again by responses to the Coroner’s Prevention of Future Deaths (PFDs) report issued following the inquest into his death.
Sammy Alban-Stanley fell from cliffs at Ramsgate in April 2020 after climbing over the railings. Emergency services were called and he was flown to King’s College Hospital but he died of his injuries four days later.
Sammy was autistic and lived with Prader Willi Syndrome (PWS), a rare genetic condition that causes physical symptoms, learning difficulties and behavioural problems. For Sammy this included high risk behaviour that would result in self-harm and life risk incidents.
Laleham Gap student Sammy was a kind, gentle and creative boy who enjoyed several hobbies, including piano, carpentry, upholstery and horse-riding but he had episodes where his behaviour was extremely high risk with no sense of danger.
Crisis point
Sammy’s mum Patricia said neither Kent County Council (KCC) nor the mental health service, North East London Foundation Trust (NELFT), were willing to offer any effective ongoing support, despite recognising that Sammy was in desperate need of this and his family were at crisis point.
The only option left to Patricia for help with Sammy’s behavioural episodes was to call the police. There were over 29 police contacts and at least 13 referrals made by the police to KCC. On two occasions Sammy was twice detained under Section 136 of the Mental Health Act due to the high risk he posed to himself.
And yet Patricia could not gain practical support at home to manage the episodes.
Failures
At Sammy’s inquest assistant coroner Catherine Wood said there was a clear failure in what was provided by Kent County Council to Sammy’s family to help with his care. There was a failure by the social services team to recognise an increased risk to Sammy and “it was possible if not probable that a failure to provide extra support contributed to Sammy’s death”.
She also said if North East London Foundation Trust (NELFT), had shared information in a timely manner more support could have been offered to Sammy and his family which may ultimately have made a difference to his high-risk episodes and his death.
Despite being aware that Sammy needed wrap-around care before and after the school day only very limited support was funded and this only started at the end of January 2020. When unable to attend school in 2020, due to the Covid-19 pandemic, Sammy was without the supportive school environment at Laleham Gap yet no replacement support was provided despite the need being obvious.
The coroner report said action needed be taken to prevent future deaths and responses to the areas raised were required from the organisations involved.
“Lack of responsibility and inaction felt like my beautiful boy has died again.”
But Patricia says response letters to the Coroner, seen by The Isle of Thanet News, from the Department for Education, Department of Health and Kent and Medway Clinical Commissioning Group appear to simply blame the pandemic for the lack-of-care issues in the circumstances that surrounded Sammy’s death despite the family consistently asking for help since moving to Kent in 2018.
Patricia said: “Losing Sammy is the most excruciating, unrelenting pain, impossible to put into words.
“To think that the Coroner’s thoughtful and forensically researched Prevention of Future Deaths Report would mean other parents and children avoid going through the same agony gave me hope.
“Instead the Coroner’s suggestions have not only been ignored but refuted. Ministers and authorities blamed the pandemic, they dared to cite children’s and human rights legislation when Sammy’s rights had been so flagrantly breached.
“The CCG even misspelled Prader Willi, (spelling it Prada Willi) in a letter claiming they were training staff in the condition.
“The Minister for Children’s Social Care and Special Educational Needs erroneously congratulated Kent County Council on an outstanding Ofsted Report when the county was found to have failed disabled children twice by that organisation.
“To me this lack of responsibility and inaction felt like my beautiful boy, who had given so much joy to the world, has died again.
“Nothing has changed because the Coroner cannot force ministers to take the action she strongly advises. The money spent on Sammy’s inquest could have kept him safe and well into adulthood. Knowing Sammy’s life means nothing to them even after his death and that other children’s lives are still at risk is truly unbearable.”
‘Little comfort’
Leigh Day solicitor Anna Moore (pictured), who represents Patricia, added: “Despite the Coroner finding significant failings in Sammy’s care at the hands of both Kent County Council and the Trust, the responses to her Prevention of Future death reports will provide little comfort to Patricia and others living in Kent that things are changing for the better.
“The responses fail to consider the key issues Sammy was facing and simply point to difficulties caused by the pandemic, when the failings started long before then. Sadly instead of getting to grips with the clear issues of concern and setting out clear plans to remedy the failings, the responses read more like a list of accomplishments, many of which were simply irrelevant to the issues in this case.
“Recipients of Prevention of Future Death reports have a duty to respond to them but there is no mechanism to oversee the adequacy of responses or monitor whether change is actually happening. Urgent reform to the system is needed.”
Another tragedy: Stefan Kluibenschadl
In fact, just two years after Sammy’s death another family in Thanet were experiencing the tragic death of their autistic son who had also been failed by the same services.
Stefan Kluibenschadl, 15, was found ligatured at his home in Margate in March 2022, after his parents’ concerns were repeatedly ignored.
Aged six, Stefan was diagnosed with “high functioning autism” and after a lengthy battle with the Kent local authority, his parents eventually managed to secure a statutory Education and Health Care Plan (ECHP). He was subsequently also diagnosed with severe dyslexia.
Stefan attended Laleham Gap. Mum Emma said he was “very funny and outgoing” and enjoyed skateboarding and being outside with his friends. But he became disillusioned with school during the pandemic and the one-to-one support he was receiving was reduced to remote contact.
In 2020, Stefan started working at a butchers at the weekends and during holidays. He loved this job as he felt he could just be himself and not be judged. However, towards the end of 2021, the inquest heard that Stefan told his parents and his school that some individuals at his work started bullying him after discovering he attended a Special Educational Needs school and that he had autism.
This heavily impacted on his behaviour and mental health and Stefan felt he had no choice but to leave the job he once loved.
In February 2022, his parents had a private counselling assessment which identified that Stefan scored highly for depression and low mood. His parents turned to the GP but were warned there was no specialist child and adolescent mental health services (CAMHS) provision or counselling in the area for children with autism.
On 20 March 2022, Stefan was found ligatured in his bedroom. He died in hospital six days later.
No key worker provision
The inquest heard that Kent & Medway Integrated Care Board (formerly CCG), considered Stefan’s GP should have taken a referral for mental health support, via their Single Point of Access (SPA). However, NELFT, who provide the service commissioned by Kent & Medway ICB accepted that the website did not signpost the proper route for autistic children needing help.
Stefan’s GP and school said when they had used the SPA for autistic children in the past they had not received the interventions and support they wanted.
Stefan’s GP also gave evidence that the 2013 NICE guidelines, labelled “Autism spectrum disorder in under 19s: support and management” required a key worker support system for every single person under 19. There was no such provision for Stefan.
Coroner Catherine Wood issued a PFD report following Stefan’s inquest raising concerns that despite the NICE guidance Stefan did not have a key worker or case manager.
She said: “I am unable to say if the lack of a case manager or key worker caused or contributed more than minimally to Stefan’s death but had one been available they may have been able to assist Stefan and his family to navigate the services available which in turn may have led to intervention which may have made a difference.”
The coroner noted Kent & Medway caveats to the provision of a key worker added so many layers that a large number of young people with a learning disability and/or autism would not qualify.
She added: “If every autistic child or young person had a key worker this would enable them or their family the opportunity to liaise with their key worker rather than having to try to navigate services themselves. This, in turn, may prevent others from encountering the issues faced by Stefan’s family and ultimately prevent future deaths.”
Kent & Medway ICB were required to respond to the Coroner by April 17 but the response is yet to be issued.
‘Heartfelt sympathies’
Allison Cannon, chief nursing officer at NHS Kent and Medway, said: “On behalf of the NHS, I would like to apologise for the tragic loss of Stefan and Sammy and offer my heartfelt sympathies and condolences to their friends and families.
“Making sure our young people are cared for and offered the best start in life is fundamental to the NHS and all the partners we work with.
“We are committed to providing everyone, with neurodiverse and other needs, high-quality care and support, while following national NHS guidance. We’ve made many changes to make sure we meet a diverse range of complex needs, including enhancing community support and the key worker programme.
“By reflecting on our services, how they are run and the support they offer in partnership with service users and families, we can continue to provide safe, person-centred services for autistic children and young people.”
Kent and Medway NHS says work to improve services has included:
- undertaking transformation of the children and young people’s neurodevelopmental pathway to have a new integrated health and local authority pathway so support is available to children, young people and their families earlier.
- recruiting a primary care partnership role to promote and co-ordinate children’s social prescribing workforce within primary care.
- introducing children’s care navigators in 31 of the 42 primary care networks (PCNs) in Kent and Medway. We have plans in place to further develop the roles into the remaining PCNs.
- investing in several training initiatives to upskill workforce from within all partner agencies. These include The Autism Reality Experience, Mental Capacity Act Training, ahead of the Mental Health Bill reforms, and Bespoke Mental Health Simulation Training to train emergency department staff to be able to better communicate and support children and young people, including those with neurodiverse needs.
- actively promoting and seeking assurance from providers that they have embedded the Oliver McGowan Mandatory Training for learning disability and autism in their mandatory training requirements for all staff.
BBC investigation
Earlier this month a BBC investigation which involved examining more than 4,000 Prevention of Future Death (PFD) notices identified 51 cases where PFDs described serious failings in the care of autistic people, and health and social care bodies were urged to take action to prevent future deaths.
The majority of those who died were under 30, and nearly a third were children.
Reaction to Sammy Alban-Stanley PFD report responses
Stephen Kingdom of the Disabled Children’s Partnership
“Sammy’s death was a preventable tragedy. If the right support had been in place, Sammy would still be alive today. No mother should have to go through what Patricia has endured. Yet the, quite frankly, complacent and heartless replies to the Coroner’s letter give us little confidence that we will see the changes needed to ensure that this doesn’t happen again.”
Jackie Lodge CEO of the Prader Willi Association
“This is a truly heart-breaking case where a family in crisis did not get the support they so desperately needed and deserved. This led to the tragic death of a young boy with Prader-Willi syndrome. From the responses received from Government departments involved in Sammy’s case, it appears that lessons have still not been learned.
“Prader-Willi syndrome is a rare and very complex genetic disorder which is difficult for families to manage without appropriate support. It is absolutely essential that anyone making decisions about services for someone with PWS understands the condition and listens to what families and experts are telling them. Lessons must be learnt so that no one else has to go through what Sammy’s family have experienced.”
Selen Cavcav of INQUEST which has supported Patricia since Sammy’s death
“I still remember the first heart-breaking conversation I had with Patricia days after Sammy died and her determination even in the depths of her shock and grief to stop what happened to Sammy happening to anybody else.
“The inquest process was crucial in shining a light to what happened and what could have been done differently. Coroner’s recommendations which followed were very thorough, but the process stopped working after that.
“Responses published are nothing but a paper exercise to avoid blame and to kick the can down the road. There is an urgent need for a National Oversight Mechanism to address this scandalous lack of learning from deaths to ensure that when recommendations are made, they are not lost, ignored or left to gather dust.”
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