Thousands of children with neurodevelopmental conditions left without support due to long NHS waits

New research shows that thousands of children with suspected neurodevelopmental conditions (such as ADHD, autism, cerebral palsy and learning disability) are waiting for years for an appointment following a referral, with some waiting for over four years for a diagnosis.

The research, conducted by the Children’s Commissioner, shows around 400,000 children (3% of England’s total child population) were still waiting at the end of 2022-23 to receive their first appointment after being referred to Community Health Services and Children’s Mental Health Services.

These long waiting times mean thousands of children are left without appropriate support, resulting in missed developmental milestones and a widening gap between children with neurodevelopmental conditions and their peers, which often results in these children reaching crisis point.

Children with a suspected learning disability waiting for an average of 2 years and seventh months for a diagnosis

The findings have been published in a new report by the Children’s Commissioner, Dame Rachel de Souza: Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions.

The report found that the average wait for a diagnosis for neurodevelopmental conditions was two years and three months. Indeed, almost half of children (41%, or 14,800) waited over two years for their diagnosis, of which 17% (6,150 children) waited over four years.

For children with an intellectual (learning) disability, waiting times for a diagnosis averaged at around 1,000 days (2 years and seven months) in Community Health Services, while almost one sixth (15%) of children with suspected autism waited over four years for their diagnosis.

Children with Down’s syndrome and cerebral palsy also faced long waits for both first appointments and a diagnosis, with children with Down’s syndrome waiting an average of two years and seven months (929 days) between referral and first appointment, and children with cerebral palsy waiting for three years and four months (1,222 days) for a diagnosis.

The report explores the impact these waiting times have had on families across the country. Dame Rachel de Souza notes that some children are non-verbal and wearing nappies well into the primary school years because they haven’t been able to get the help they needed sooner, while other parents have been forced to sedate their child in hospital due to a lack of community support.

She said: “I have spoken to too many families who are exhausted from the fight of trying to do the best for their children. For them, this crisis is very real. Urgent change is needed not just for them, but so we aren’t wasting taxpayers’ money on tribunals, which overwhelmingly largely rule in families’ favour. The system doesn’t need to be so adversarial but more joined up so that the most disadvantaged and most disproportionally affected groups gain the same access to support as families who pay privately.”

Failure to provide support to children with neurodevelopmental conditions ‘robs children of their childhood and their potential’

The Children’s Commissioner now wants solutions that will help us move towards a child-focused system led by individual needs, instead of the current system that relies too heavily on getting a diagnosis before support becomes available. These solutions include:

• Earlier identification of possible neurodevelopmental conditions, and more support in mainstream school including profiling tools being rolled out nationally to prevent overreliance on diagnosis as the silver bullet.
• A national framework for SEN support in nurseries and schools with a move to a needs-led support system in schools and health services, rather than diagnosis-led.
• More appointments to tackle the long waits and a joint workforce strategy that covers education, health and social care.
• A review of children’s routes to diagnosis and post-diagnosis support because too many parents feel left isolated and uninformed, even after diagnosis.
• Better support for families while they await assessment.

“Existing commitments from the government to fix the broken healthcare and SEND 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,” she said.

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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