Children in England waiting years for autism and cerebral palsy diagnoses – data

Years-long waits for diagnoses and support for autistic young people in England and others with conditions including cerebral palsy is “robbing” them of their childhoods, the Children’s Commissioner has warned.

Children with cerebral palsy faced the highest wait of all for diagnosis through community health services, at three years and four months on average, according to data obtained by Dame Rachel de Souza’s office.

The commissioner said it was currently “impossible” to use existing national data to confirm children’s waiting times for neurodevelopmental condition diagnoses, as they were assessed through both community health services, such as community health trusts or local authorities, and mental health services, such as NHS mental health trusts.

Dame Rachel (pictured) has used her legislative powers to access previously unpublished data from NHS England to show a “joined-up national picture of children’s waiting times” for the two years to March 2024.

Waiting lists are long through both routes, Dame Rachel said but added that times for the first contact with community services appeared higher.

The data revealed that almost a quarter (23%) of children diagnosed with attention deficit hyperactivity disorder (ADHD) waited more than four years after their referral for a diagnosis in community health services.

Almost one in six (15%) waited more than four years for their diagnosis of autism through this route, the commissioner’s office said.

Children referred for Down’s Syndrome waited the longest between referral and a first appointment through community health services, at an average of around two years and seven months.

There were waits of more than 1,000 days for children with intellectual disorders such as those which affect their learning, judgment, reasoning or problem-solving abilities, while those with tic disorders, including Tourette’s syndrome had waits of more than 800 days to get a diagnosis.

Overall, the research showed that 400,000 children in England were still waiting at the end of March 2023 to get a first appointment after being referred to community services or children’s mental health services, which the commissioner said was equivalent to around 3% of the nation’s total child population.

Diagnosis for any neurodevelopmental condition through community services saw an average wait of two years and three months, with four in 10 children (41%, or 14,800) waiting longer than two years for their diagnosis across both services.

Of these, almost a fifth (17% or 6,150 children) waited more than four years, the commissioner said.

There were differences depending on gender, wealth and race, the commissioner’s report found.

Boys made up seven in 10 (70%) of children diagnosed with a neurodevelopmental condition in community health services.

The gap was greater when focusing on ADHD and autism, with girls accounting for 25% and 29% of these diagnoses, respectively.

The report stated that in community health services, Asian and black children made up 1% and 4% of ADHD diagnoses – despite making up 12% and 6% of the child population, respectively.

The commissioner said the research, which included interviews with children and parents, showed that those who could afford to pay for private assessment and support could access help “much quicker”.

She has called for earlier identification of possible neurodevelopmental conditions, and more support in mainstream schools “to prevent over-reliance on diagnosis as the silver bullet”, a national framework for special educational needs (SEN) support in nurseries and schools, more appointments, and better support for families while they wait for their child’s assessment.

Dame Rachel said: “These findings are a stark reminder of the daily fight children and their families face seeking support for neurodevelopmental conditions like autism and ADHD, and how the system has failed to keep pace with rising demand.

“These children face an invisible crisis, in a system that is working against itself by forcing families to jump through multiple hoops in a complex and lengthy process of assessment, diagnosis and intervention.

“Existing commitments from the Government to fix the broken healthcare and Send (special educational needs) systems are warmly welcomed – but now we need urgent action.

“I’m calling for better support in mainstream schools, improved awareness and training for frontline professionals in education, health and care so that children are supported based on their needs, not a label.

“We need a system that moves away from a reliance on diagnosis – because failing to provide timely support is robbing children of their childhood and their potential.”

An NHS spokesperson said: “The NHS is fully committed to supporting and improving the lives of those with autism and ADHD, and has published new national guidance to help local areas manage the 50% increase in referrals 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.”

A Government spokesperson said: “For too long children and young people with autism, ADHD and other neurological conditions have been let down by a broken NHS.

“Through our 10-Year Health Plan, this government will tackle this head-on – reducing unacceptable waiting times and improving 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.”

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