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Call for action to keep children like Sammy Alban-Stanley safe

The coroner who conducted the inquest into the death of 13-year-old Sammy Alban Stanley has called for action at a national and regional level to prevent similar tragedies occurring.

Posted on 22 March 2022

Coroner Catherine Wood has written to Health Secretary Sajid Javid and Kent and Medway Clinical Commissioning Group with her Prevention of Future Deaths Report, to which they must reply by 11 April 2022.

Sammy, who had Prader Willi Syndrome and Autistic Spectrum Disorder (ASD) died during the first national lockdown in the covid-19 pandemic when he was not able to attend his special school and when, despite their many pleas to social services, his family lacked the necessary support to give him the full care he needed at home.

In her Prevention of Future Deaths Report, the coroner said if Sammy and his family had been given more practical support, it may have made a difference to his high-risk behaviour and his death.

Sammy’s mother Patricia Alban-Stanley has welcomed the coroner’s report and the Disabled Children’s Partnership, who are working with Patricia to make Sammy’s story known, say it is of major significance in their campaign for much more funding for support for families who care for children with disabilities like Sammy’s.

The Disabled Children's Partnership is an umbrella organisation of 100 children's and disability charities including Mencap, Scope, Sense and Contact.

Ms Wood also raised the following concerns:

  • Much more support should be available to families with rare diseases such as Prader Willi Syndrome
  • Only very limited support was provided to Sammy’s mother for wrap-around care before and after school for a month before lockdown, and despite the need being obvious, no replacement support was provided when Sammy had to stay away from school during lockdown
  • Psycho-social interventions were not offered and a Care and Education Treatment Review did not take place despite Sammy’s high-risk behaviours being known to the mental health team at North East London Foundation Trust who were only commissioned for diagnoses, not treatment.
  • Although Kent County Council has made changes to its services since Sammy’s death, another similar incident is predictable in other areas if children with complex neurodevelopmental needs are excluded from access to the care and treatment they need to keep them safe.
  • Communication between agencies involved in his short life was inadequate 
Patricia Alban-Stanley said:

“I’m grateful to the coroner for her careful consideration of the issues surrounding Sammy’s death and her recommendations to address this at 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." 

Stephen Kingdom of the Disabled Children’s Partnership said:

“The coroner’s damning report makes clear that a failure to provide clearly needed support contributed to Sammy’s death and that without action further such tragedies could happen. The report highlights issues that will be all too familiar to families of disabled children - a lack of services; difficulties in accessing support; and services failing to work together.  It is unacceptable that children and young people like Sammy and their families do not get the support they need, and it is vital that central government, local councils and the NHS take action to ensure that this does not happen again.”

Susan Passmore, CEO of the Prader Willi Syndrome Association said:
“These failures highlight how vital it is that Local Authorities and NHS trusts ensure that those with Prader-Willi syndrome and their families are given the specialist support that they so desperately need. It is essential that anyone making decisions about their care and support must understand Prader-Willi syndrome, so that others are not excluded from services and risk this tragedy from happening again.”

Leigh Day solicitor Anna Moore, who represents Patricia Alban-Stanley, said:

“In her report the Coroner has recognised the failures in Sammy’s case and she is now taking steps to try to ensure that another family does not have to endure the tragedy that Sammy’s family have gone through. 

“It is important that the gaps in support for disabled children are addressed at a national level and I hope that the Secretary of State gives careful consideration to what needs to be done to mean that families get the support they need. 

“In Kent the criteria in place at the time of Sammy’s death excluded him from securing specialist support. Whilst Kent County Council has taken steps to amend its policy, it remains a concern that authorities around the country may still be operating with unlawful criteria in place that exclude children from their services and it is this in particular that must be urgently addressed.”
Anna Moore
Court of Protection Human rights Inquests Judicial review

Anna Moore

Anna Moore is a partner in the human rights department.

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