The mothers of two teenage boys who died following failures in care by local authorities and health services have called for urgent action by Education Secretary Nadim Zahawi and Health Secretary Sajid Javid to ensure the disabilities of children like them are recognised and they are given access to vital support services.

Oskar Nash of Surrey died aged 14 and Sammy Alban Stanley of Kent died aged 13 after their families’ pleas for support in helping them cope with issues stemming from the boys’ disabilities went unheeded.

Sammy was diagnosed with Prader-Willi Syndrome (PWS), Autism and associated anxiety.  He experienced episodes of high-risk self-harming behaviour, connected to his PWS, when he became distressed. He was recognised as a Child in Need by Kent County Council, but had been refused an assessment for specialist services by its Children with Disabilities team. He was under the care of CAMHS who had recommended a Care, Education and Treatment Review (CETR) was needed, but it was not actioned before his death.

Oskar was diagnosed with Asperger’s Syndrome (an Autistic Spectrum Disorder) and high anxiety. After almost two years in a special educational school he was placed in mainstream high school without further assessment or revision to his Education Health and Care Plan (EHCP). He found it difficult to cope and was referred “urgently” to CAMHS by his GP in September 2019. CAMHS passed the referral to an external counselling service without any  clinical assessment. At the time of his death, an assessment of his needs by Surrey County Council was incomplete and overdue.

Following inquests into the boys’ deaths, coroners made wide reaching conclusions and highlighted serious concerns surrounding the way services manage the complex needs of children with disabilities. Their prevention of future deaths reports demanded responses from Mr Zahawi, Mr Javid, NHS Kent and Medway Clinical Commissioning Group, Surrey and Borders Partnership NHS Foundation Trust, Surrey County Council, Surrey Heartlands Clinical Commissioning Group, and the National Child Safeguarding Review Panel. Mr Javid has still to respond to the coroner who led Sammy’s inquest.

Now the mothers of Oskar and Sammy have added their voices to the coroners’ in the hope that Mr Zahawi will listen to their experience as he undertakes the Review of Support for Children with Special Educational Needs (the SEND Review) and The Review of Children’s Social Care.

Natalia Nash and Patricia Alban Stanley, both represented by Leigh Day solicitor Anna Moore, have sent an open letter to the secretaries of state and copied it to the Chairs of the SEND Review and the Children’s Social Care Review.

They believe there are concrete lessons to be learned from the experiences of Sammy and Oskar and that fundamental change is needed without delay.

The vital changes they want Mr Zahawi and Mr Javid to make are listed under the following headings:

Supporting disabled children and their families

The coroner’s report following the inquest into Oskar’s death was clear that national guidance used by agencies when supporting children is not working for children with disabilities because it is focused on the safeguarding needs of children at risk of harm from their parents or in the home. Natalia and Patricia say any assessment of a child’s needs must take full account of any needs arising as a result of disability.  An appropriate assessment of any carer’s needs must form part of that process. Guidance must clearly recognise the important role which both disabled children and the views of parents and carers can play in assessment, risk assessment and care planning.

Understanding Autism

Mandatory training on autism and other neurological conditions must be given to staff who offer or implement services for disabled children. There are currently widespread inadequacies across all systems in knowledge, understanding the needs of neurodiverse children and how best to meet those needs.

Assessments and planning

Oskar and Sammy’s stories demonstrate a failure to assess or review the severity of a child’s developing needs despite repeated requests from their family and reports from other services. Further training and clearer guidance is essential for those making assessments and plans for disabled children.  Resources and training for the assessments must include consideration of any disability and any reasonable adjustments needed.

Education, Health and Social Care Planning

Updated national guidance is needed about powers and duties to share information and to cooperate to make sure Education, Health and Social Care Planning is full and accurate. More needs to be done at a national level to ensure EHCPs serve their intended purpose.

Mental Health and Autism

There is a particular need for guidance on timely and collaborative working by CAMHS with other agencies including on EHCP, Child in Need meetings or CETR reviews in connection with the needs of autistic children’s mental health, especially when the risk is associated with known acts of self-harming behaviour.

Natalia Nash said:

“Through Oskar’s whole life there was no understanding of his condition by any of the bodies engaged in his care: Education, Children Services, CAMHS, Police. Therefore there was no appreciation for the additional challenges Oskar faced because of his condition and how difficult daily life was for him. This is not going to change for other children in the same situation without hiring Autism specialists in each of the mentioned organisations that can guide other staff members and provide vital knowledge and training on daily basis whilst preparing care plans for children in need. This knowledge in care for children with Autism is severely lacking in all these organisations.”

Patricia Alban said:

“I welcome this collaboration with Natalia and hope the strength of our voices together can be a force for good in creating an accountable and fair system in the UK under which disabled children do not continue to suffer and die unnatural, preventable deaths.”

Leigh Day solicitor Anna Moore said:

“Oskar and Sammy’s deaths, in different parts of the country, illustrate that there are problems that need to be addressed at a national level to ensure that children with disabilities and their families are given the support they need. Sadly, it is too late for Oskar and Sammy, but their mothers have written to the Mr Javid and Mr Zahawi in the hope that highlighting their plight to get even the most basic support for their children can change things for the better for other families facing the same struggles. There are two important reviews ongoing looking at the support offered to disabled children and so this is the time for action to be taken and real change implemented. I call upon the government to act now to ensure that no other family has to go through the appalling failings that Oskar, Sammy and their families endured.”

Stephen Kingdom, campaign director of the Disabled Children’s Partnership said:

“Oskar and Sammy’s deaths show the tragic consequences of a system failing to provide children and families with the support they need.  Parents around the country tell us they have to battle to get the help from local authorities, schools and the health service; that services do not work well together; and that support falls short of what they need and are entitled to.  It is vital that action is taken at national and local level to address this, including addressing gaps in services and ensuring proper accountability.”