Samuel Alban-Stanley
12 Mar 2022 · Coroner Catherine Wood · North East Kent
The coroner's concerns
1. lack of support for families of children with rare diseases such as Prader Willi syndrome
“Evidence given at the inquest by Professor from Great Ormond Street made it clear that the episodes of behavioural difficulties experienced by Sammy were inherently a part of his Prader Willi syndrome. He also indicated that it was not uncommon for the parents of children with behavioural difficulties associated with their underlying disease to inform him that they did not have adequate support. He opined that whilst the risk cannot be eliminated it could be managed through a combination of psychosocial”
2. inadequate assessment and provision of support by Children with Disabilities team
“social workers from Kent County Council were fully aware of Sammy's high-risk behaviour and had on several occasions referred him to their Children with Disabilities team who refused to assess him. Sammy's behaviour was also having an adverse impact on his three younger siblings. His mother had repeatedly reported that she could not keep Sammy safe without support and had sought assistance from state agencies, Charites and done as much as she possibly could herself. Social workers took steps to try”
3. inadequate inter‑agency communication
“at the inquest also revealed that communication between agencies involved in his short life was inadequate. It is possible that had information been shared in a timely manner and actions taken as a result then more support could have been provided to Sammy and his family. Had”
Responses
2022-0082-Response-from-Department-for-Education.pdf ↗· Department of Health and Social Care
Stated action · later this year
“We have also announced ambitious reforms through publication of the Special Educational Needs and DisabWties and Alternative Provision Green Paper and in response to the Independent Review of Children's Social Care we have set out actions we are undertaking now to improve support for families and children's social care and have committed to publishing an ambitious implementation strategy later this year.”
2022-0082-Response-from-Department-of-Health-and-Social-Care.pdf ↗· Department of Health and Social Care
2022-0082-Response-from-Kent-and-Medway-Clinical-Commissioning-Group.pdf ↗· NHS Kent and Medway Clinical Commissioning Group
Stated action · February 2021
“The Kent and Medway health and care system (the system) has taken steps to learn and embed changes from this case to improve the experience of patients in the future. Training has been provided to staff within the Children's and Young Person's Mental Health Services (CYPMHS) at NELFT, specifically on Prader-Willi syndrome. NELFT has reported that training was received by 400 staff from February 2021.”