Children With Down’s Syndrome and Cerebral Palsy Waiting Years for Diagnoses: Report

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Children with Down’s syndrome, cerebral palsy, and neurodevelopmental conditions like autism and ADHD are waiting years between referral and diagnosis or support, the Children’s Commissioner report has shown.

Children with Down’s syndrome referred to community health services waited the longest between referral and their first appointment, an average of 929 days or some two years and seven months.

Between referral and first contact, children with cerebral palsy waited 827 days and faced the highest average wait of 1,222 days to receive a diagnosis.

In terms of waiting for a diagnosis for neurodevelopmental conditions, some 15 percent of children with autism and almost one quarter (23 percent) of children with ADHD had waited more than four years.

The figures were presented in a report by Children’s Commissioner Dame Rachel de Souza and published on Tuesday.

De Souza’s report analysed unpublished NHS England data from the two years to the end of March 2024 to put together an overview of children’s waiting times across community health services, such as community health trusts or local authorities, and mental health services, like NHS mental health trusts.

The data showed that around 400,000 children in England were still waiting at the end of March 2023 for their assessment after being referred to either community or mental health services, around 3 percent of the country’s total child population.

‘Robbing’ Children of Childhood

The research also found that diagnosis for any neurodevelopmental condition through community services saw an average wait of two years and three months. Nearly one quarter (24 percent) waited between two and four years for a diagnosis across both mental and community health services, with a further 17 percent waiting more than four years.

And children with intellectual disorders—where their learning, reasoning, judgement, or problem-solving abilities are impeded—waited more than 1,000 days for a diagnosis, with the average for girls being 1,129 and 1,019 for boys.

In the forward to the report, de Souza said that in failing to provide timely support, “we are not only wasting public money—we are robbing children of their childhood and their potential.”

The Children’s Commissioner said that in the short term, children are missing out in the support they need, but that also “we are storing up a tidal wave of demand for adult social care services, with neurodivergent children who do not get the right support disproportionately likely to grow up experiencing problems with poor mental health, substance misuse, and offending behaviour.”

Better Support Needed

De Souza said that “existing commitments from the Government to fix the broken healthcare and Send [special education needs and disabilities] systems are warmly welcomed—but now we need urgent action.”

She recommended a series of solutions, including more appointments to tackle the long waits, better support in mainstream schools, and more support for families waiting for their child’s assessment.

A spokesperson from the NHS said the health service had published new national guidance to help local areas manage the 50 percent increase in referrals for autism and ADHD seen over the last year.

“We know patients are still waiting too long for an ADHD diagnosis and that’s why the NHS has launched an independent expert taskforce to investigate the challenges facing services, help them manage the rising numbers of referrals, and continue to transform care to ensure everyone gets the support they need,” the spokesperson said.

In August, figures from the Department for Work and Pensions showed that there was a record number of children—more than 730,000—on disability benefits for autism and ADHD.

A government spokesperson said that through the administration’s 10-Year Health Plan, they will reduce the “unacceptable” waiting times and improve support before and after a diagnosis.

“We are also committed to improving inclusivity and expertise within mainstream schools, and making sure special schools cater to those with the most complex needs to ensure the best chance life chances for every child,” the spokesperson said.

PA Media contributed to this report.