29 November 2021

This media release is by Leigh Day, reposted for reference

The inquest into the death of Sammy Alban-Stanley, who died aged 13 during the first 2020 pandemic lockdown, has concluded that he died as a consequence of injuries sustained during an episode of high-risk behaviour related to Prader Willi Syndrome (PWS) on a background of inadequate support from the local authority and mental health services.

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. They failed to provide help out of school. 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 noted that the Children with Disabilities (CWD) team at KCC had chosen not even to assess Sammy as it considered on paper that he did not meet the criteria for their support. As a consequence Sammy was seen by social workers unfamiliar with the services that could have been provided.

The coroner was also critical of the mental health service at North East London Foundation Trust (NELFT), saying that had information been shared in timely manner it is possible that 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.
Sammy was a beloved child. His mother Patricia Alban told the inquest he was kind, gentle and creative boy who enjoyed several hobbies, including piano, carpentry, upholstery and horse-riding. He was well known and popular in the Ramsgate community.

Sammy was autistic and had Prader Willi Syndrome (PWS) and his family had done their utmost to support him to have a happy, fulfilled and healthy life. Despite all their efforts he died on 26 April, 2020.

On 22 April 2021 a fatal incident involving Sammy occurred in Ramsgate during a time when, despite being one of the vulnerable children who could have continued to attend school during lockdown, he had been required to stay at home to shield from COVID-19 because of the health risks caused by his PWS.

Sammy’s mother, Patricia Alban, said the break in routine caused by the halt to school attendance, and the absence of any additional support, had been increasingly destabilising for her son.

As Sammy became older, the behavioural episodes associated with PWS became increasingly difficult to manage and Patricia had struggled over several months and years to secure out-of-school support for her son. Neither the local authority, Kent County Council (KCC), nor the mental health service, North East London Foundation Trust (NELFT), was 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, as detailed in Sammy’s Crisis Care Plan, was to call the police. They would attend to help contain and calm Sammy which on occasion required him to be handcuffed or taken to a place of safety until he had recovered. 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.

His school, Laleham Gap, was a place where Sammy felt secure and well supported. The inquest heard evidence from the school’s Head of Wellbeing, that they were well-placed to support Sammy, in part due to the large numbers of staff available to provide him with one-to-one care if needed or to help keep him safe during an episode. Despite their expertise, there were still a number of incidents at school, such as Sammy swallowing needles, which required him to be referred to hospital for emergency treatment. The inquest heard how school staff were very concerned about the impossibility of Patricia being able to keep Sammy safe on her own.

The school told social services several times that they had concerns for Sammy’s care and felt there was not enough practical support at home to manage the episodes. Even though Patricia was doing all she could, she could not manage without more support. Both the local authority and mental health services were aware that Sammy’s behaviour (during the episodes he could not control) was incredibly risky and presented a threat to his life. One witness described Sammy’s episodes as “predictably unpredictable”.

However, over a number of years Patricia had met a wall of resistance in her efforts to secure help in caring for Sammy at home.

The family had relocated to Kent in February 2018. There the Children With Disabilities (CWD) team had refused to become involved with Sammy’s case, saying he did not meet their criteria, the Children and Adolescent Mental Health Team (CAMHS) only offered medication and in August 2018 assessed him as having a “low risk of any self-harm or suicide” as the family acted as a protective factor.

KCC refused to give Sammy an Education and Health Care Plan (EHCP), saying that he should go to a mainstream school, and one was only secured after Patricia took the matter to tribunal, after which Sammy was eventually given his place at Laleham Gap having being out of school for over a year.

In March 2019 the CWD team again rejected a request for support. In June 2019 the KCC panel refused a social worker’s request for direct payments for just three hours help a day before and after school. She said Sammy was high risk and that the family’s situation was incredibly dangerous.

Patricia recalled being told that a panel member had said: “Will this ever end?” referring to her repeated requests for help. In July 2019 Patricia’s GP wrote to social services to ask for support as Patricia was “at breaking point”.

In July 2019, the family was finally awarded funding for a carer to work 10 hours a week, although it was recognised that this still was not sufficient to meet Sammy’s needs. In any event these payments were not actioned by KCC until January 2020. These carer payments were only granted on a short term basis, providing no long term security for Sammy and his family.

On 31 January Sammy was seen by a professor who wrote to social services stating that Sammy’s condition was life-threatening.

On 21 February 2020 at a CAMHS meeting, for the first time it was suggested that Care, Education and Treatment Review (CETR) could be actioned. Patricia said she was surprised it had not been mentioned before. This process was not actioned before Sammy died.

Just before lockdown, in March 2020, Patricia was made aware that Sammy’s case had been referred to an expert in rare diseases, whose expertise was always known to the CWD team. She questioned why the referral had not been made before the family’s situation reached crisis point. Patricia said she believed an earlier referral could have saved Sammy’s life.

Patricia Alban said:

“Sammy was exceptional, a dearly loved son and brother. With his wonderful sense of humour and happy disposition, we enjoyed a joyful family life. We had projects, adventures and a future planned. He had so much yet to give. Sammy bravely faced what society threw at him, persevering to try to overcome challenges arising from his disability. We had a very close connection and bond. I learnt so much from him, and I am so proud of him.

“Although I did all I could to cope with Sammy’s episodes, we were in crisis and the very limited support that we were finally awarded simply was not sufficient. We were operating at crisis point continually and things continued to escalate after Sammy was unable to attend school during the national lockdown. Every incident that Sammy had was life threatening and it was only my attempts to try to keep him safe, using all my energy and reserves, that nothing more serious happened before the 22 April. The authorities were aware of the risks but, in my view, did not take this seriously.

“I truly believe that a failure to provide us with adequate support led to Sammy’s death. The Coroner has heard evidence of all I did to fight to get the bare minimum in place to keep Sammy safe and yet this was always rejected. I was always told the support I desperately needed for Sammy wasn’t available and I should ask elsewhere. Nobody was willing to help us.

“Not only do I have to endure his loss but also the loss of his future too. 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. 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.”

Leigh Day solicitor Anna Moore represents Patricia. She said:

“All the witnesses who gave evidence at the inquest rightly recognised just how devoted Patricia was to Sammy and yet her unfailing dedication to him and requests for support were repeatedly refused, mismanaged or delayed. She was met with a brick wall wherever she turned and the state bodies responsible for safeguarding and supporting Sammy failed to grasp the impact that Sammy’s disability had on his safety and just how hard it was for his family to manage alone. Patricia explored every avenue she could for help but was always told to go elsewhere. No one was willing to step up to provide proper support to this family in crisis. It was always somebody else’s problem. 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 today and ensure that no family in its care has to go through the same trauma.”

Selen Cavcav, senior caseworker at INQUEST said:

"The findings of this inquest should shake the mental health and social care agencies to the core. Time for platitude about lessons learnt is over. A thirteen year old child died a preventable death. He could have been saved if the agencies talked to each other and listened to the family, or to Sammy who pleaded with them for help. There needs to be a complete culture shift and re-injection of the word "care" in our care systems, which time and time again avoids responsibility by hiding behind strict criteria’s and definitions. "

Susan Passmore, CEO of the Prader Willi Syndrome Association said:

"Prader-Willi syndrome (PWS) is a rare and very complex genetic disorder and is a difficult condition for families to manage. This is a heart breaking case where the inaction and mismanagement by Kent County Council meant that a family in crisis did not get the support they desperately needed, and very sadly the outcome is that a vulnerable young boy with Prader-Willi syndrome is tragically dead. It is absolutely essential that anyone making decisions about the support someone with Prader-Willi syndrome can receive understands the condition properly and listens to what the families and the experts are telling them. How many more people with Prader-Willi syndrome need to be failed before they are given the support they need, and deserve?"