WIREDGOV

An estimated 400,000 children – around 3% of all children in England – are seeking support from health services for a suspected neurodevelopmental condition. 

Thousands are waiting more than two years for their first appointment, while others had to wait over four years for diagnosis and professional support – highlighting stark inequalities in healthcare for some groups of children. 

Children with suspected conditions like Attention Deficit Hyperactivity Disorder (ADHD), autism, cerebral palsy and a range of mobility and speech, language and communication difficulties are being left without appropriate support for years of their childhoods, a new report from the Children’s Commissioner has revealed.  

These delays – both in receiving the first appointment with a professional and in receiving a final diagnosis – result in them missing crucial developmental milestones, widening the gap in opportunity and attainment between children with neurodevelopmental conditions and their peers. Often this results in these children reaching crisis point. 

Children’s Commissioner for England Dame Rachel de Souza yesterday 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 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.” 

Research by the Children’s Commissioner published yesterday shows around 400,000 children in England 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. This is equivalent to around 3% of England’s total child population. 

Unlike adults, children with neurodevelopmental conditions are assessed in both Community Health and Mental Health Services – meaning using existing national data, it is impossible to answer how long children are waiting for diagnosis with neurodevelopmental conditions like ADHD and autism in England.  

Yesterday’s report uses the Children’s Commissioner’s legislative powers to draw on unpublished data on neurodevelopmental condition diagnoses from NHS England to provide a novel and more joined up national picture of children’s waiting times across both mental health and Community Health Services. Data is taken from the financial years 2022-23 and 2023-24. 

For some suspected conditions, the waits are particularly long to receive either a first appointment or ‘contact’, or eventual diagnosis:  

• Between referral and a first appointment through Community Health Services, children referred for Down’s Syndrome waited the longest – an average of 929 days, equivalent to two years and seven months. 
• Children with cerebral palsy faced the highest average wait of 1,222 days to receiving a diagnosis through Community Health Services – equivalent to three years and four months. 
• Almost a quarter (23%) of children diagnosed with ADHD waited more than four years after their referral for a diagnosis, while almost one sixth (15%) waited over four years for their diagnosis of autism in Community Health Services. 
• Children with intellectual disorders – conditions that impede their learning, judgment, reasoning or problem-solving abilities – waited more than 1,000 days for a diagnosis in Community Health Services. 
• Children with tic disorders, including Tourette’s Syndrome, experienced waits of more than 800 days to receive a diagnosis. 

The waits for the first ‘contact’ with services are lengthy through both referral routes but seem to be higher in Community Health Services. The average wait for a diagnosis for any neurodevelopmental condition was two years and three months. 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.  

The research follows the Children’s Commissioner for England Dame Rachel de Souza’s Annual Report on Children’s Mental Health Services and finds even longer waits and longer waiting lists with children waiting years for assessment, diagnosis and therapeutic support. It also builds on her report published last month on the number of children missing from education, often as a result of unmet needs in relation to SEND support.  

Dame Rachel de Souza 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.” 

Children from particular groups faced particular disparities, including girls, children from ethnic minorities and children from disadvantaged backgrounds. These groups were often less likely to have their needs identified, exacerbating disparities in access to support.  

The data revealed differences in waiting times between regions and even neighbouring areas:  

• In Community Health Services, boys make up 70% of children diagnosed with a neurodevelopmental condition. Within specific conditions including ADHD and autism, the gender gap is greater, with girls constituting just 25% and 29% of diagnoses.   
• Interviews with children and parents highlighted that where families who can afford to and choose to pay privately for assessment and support, they can access help much quicker than families who cannot afford to.  
• In Community Health Services, Asian and black children made up just 1% and 4% of ADHD diagnoses – despite making up 12% and 6% of the child population, respectively.  

In yesterday’s report, the Children’s Commissioner wants solutions that helps move towards a child-focused system led by their individual needs, instead of the current system that relies too heavily on getting a diagnosis before support becomes available, thereby supporting families earlier on and preventing crisis by:  

• 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.  

Read the report here.