Children with a learning disability make up nearly a third of all child deaths reviewed by CDOP

Children with a learning disability made up nearly a third of all child deaths reviewed by the Child Death Overview Panel (CDOP) between 2019 and 2022, according to a new report.

The authors of the National Child Mortality Database (NCMD) report are now calling on healthcare professionals, commissioners and government departments to implement more robust healthcare policies to prevent future deaths from happening.

Children with a learning disability aged 4–9 made up 40% of the total child deaths

The report analysed the deaths of children aged 4 to 17 years old with a diagnosed learning disability and/or autism between April 2019 and March 2022.

Of the 2,423 children whose deaths were reviewed by CDOP, 818 children had either or both diagnoses, and 741 were diagnosed solely with a learning disability. This represents nearly a third (31%) of the total number of deaths of children aged 4 –17 years. Younger children with a learning disability aged 4–9 years made up 40% of the total number of child deaths reviewed by the CDOP.

Most children with a learning disability had multiple comorbidities, with 92% having five or more chronic conditions. Eight in 10 deaths were caused by either chromosomal, genetic and congenital anomalies (35%), a chronic medical condition (26%) or an acute medical or surgical condition (18%). In addition, 39% of the deaths were infection related, this compares to just 11% of children without a learning disability.

Various contributory and modifiable factors in the deaths of children with a learning disability were reported. This included challenges for families in attending multiple appointments, issues with identification of illness or initiation of treatment, diagnostic overshadowing and a lack of reasonable adjustments.

The report identified the importance of children being on the GP Learning Disability Register and receiving annual learning disability health checks, early and comprehensive advanced care planning, having a lead healthcare professional for each child, and having a robust transition plan for those moving from paediatric to adult healthcare services.

35% of autistic children included in the report died by suicide or self-inflicted harm

Autistic children made up a much smaller proportion of the total number of child deaths at 3%, but the report identified a higher number of modifiable factors for autistic children compared to non-autistic children.

The most common cause of death among autistic children was dying by suicide or deliberate self-inflicted harm (35%), and the report makes note of various contributory factors which may be modifiable, including behaviours of distress, social isolation, and problems with service provision.

The authors also note problems including long waiting lists for referral and assessment of children with suspected autism, poor coordination and communication between services, difficulties transitioning between child and adult’s services, and a lack of suicide prevention education.

In light of this data, the National Autistic Society are urging the government to take forward the recommendations laid out in the report, including the implementation of reasonable adjustments and better access to mental health services.

Joey Nettleton Burrows, Policy and Public Affairs Manager at the National Autistic Society, said: “The report shows there is a lack of reasonable adjustments, tailored support services and understanding of the needs of autistic children and young people and this can have profound and dangerous consequences, specifically an increased risk of suicide. Without support, too many autistic children and young people can end up developing mental health problems and end up in desperate and tragic situations.

“The new Government, with NHS England, must take forward these recommendations. We need a focus on improving care for autistic children and young people to achieve the new Government’s mission to reduce the lives lost to suicide, and to create true health equality for autistic people.”

More research needed to better understand barriers to accessing services

In total, The NCMD made nine recommendations for healthcare professionals, commissioners and government departments. This includes:

1. Ensuring reasonable adjustments are discussed with and provided for all children with a learning disability and autistic children, as well as their families and carers.
2. Recognising that children and young autistic people and people with a learning disability with underlying health conditions may be at higher risk of death and improving guidance and training for healthcare professionals.
3. Ensuring a designated Named Lead Healthcare professional is identified to support autistic children and children with a learning disability.
4. Ensuring commissioners take consideration and account of the needs of children with a learning disability and autistic children and including this in future revisions of national clinical standards.
5. Ensuring that children and young people are not waiting inappropriately long times for autism assessment and for access to mental health services.

Going forward, the NCMD says it will introduce a new question on the reporting of child deaths form to ask about neurodevelopmental conditions in the child, as there is currently no appropriate place to add this information. They will also develop a set of supplementary reporting forms to be completed for all disabled children, or those with multiple co-morbidities, who die.

The NCMD says further research now needs to be conducted to better understand the barriers to accessing services for children with a learning disability and autistic children, particularly those living in deprived areas or from different ethnic backgrounds, so inequalities in mortality can be reduced.

Lauren Nicolle

Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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