SEND children waiting too long for support, report finds

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

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

Many are waiting more than two years for their first appointment, while others have had to wait over four years for diagnosis and professional support.

The survey suggested that 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.

The Children's Commissioner for England, 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."

She added that 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.”  

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.  

Today’s report uses the Children’s Commissioner’s legislative powers to draw on unpublished data on neurodevelopmental condition diagnoses from NHS England to provide a novel and more joined up national picture of children’s waiting times across both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. 

For some suspected conditions, the waits are particularly long to receive either a first appointment 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. 

As well as this, almost a quarter of children diagnosed with ADHD waited more than four years after their referral for a diagnosis, while almost one sixth 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. 

Young people 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.  

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.  

For example, in Community Health Services, Asian and black children made up just one per cent and four per cent of ADHD diagnoses – despite making up 12 per cent and six per cent of the child population, respectively.

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.

She suggested 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.  

The report also called for 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. 

The Commissioner said there need to be more appointments to tackle the long waits and a joint workforce strategy that covers education, health and social care as well as better support for families while they await assessment.