Learning from deaths of children with a learning disability and autistic children (NCMD, 11 July 2024)

Summary

This report by the National Child Mortality Database (NCMD) looks at deaths of children with a learning disability and autistic children aged 4-17 years. Based on data from April 2019 to March 2022, this report contains nine recommendations, including calls to ensure:

• reasonable adjustments are discussed with and provided for all children with a learning disability, autistic children, and where necessary their families and carers.
• that there is a recognition that infants and children with a learning disability and autistic children with underlying health conditions may be at higher risk of death from infection
• a designated Named Lead Healthcare professional is identified to support autistic children and children with a learning disability, with multiple co-morbidities and complex health care needs.
• there are national clinical standards and guidance relating to transition from paediatric to adult healthcare services.
• reasonable adjustments are made for families and carers.
• work is done to reduce autism assessment waiting times.
• children have timely access to appropriate support with mental health services.
• improved education about self-harm and suicide prevention.

There is also a recommendation concerning payments for full-time carers of a child with a learning disability, or who is autistic, who has died.

This report also highlights changes that will be introduced by the NCMD to support a deeper understanding of the deaths of children with a learning disability and autistic children in the future.