New research by the Children’s Commissioner, Rachel de Souza, shows that around 400,000 children in England at the end of 2022-23 were waiting to receive their first appointment after being referred to community health services and children’s mental health services. This is equivalent to around 3 per cent of England’s total child population.
The report, based on unpublished data on neurodevelopmental condition diagnoses from NHS England, argues that the delays mean children with suspected conditions like Attention Deficit Hyperactivity Disorder (ADHD), autism, cerebral palsy and a range of mobility and speech and language communication difficulties, are missing crucial developmental milestones, widening the gap in opportunity and attainment between children with neurodevelopmental conditions and their peers.
It shows how younger children, from birth to age three waited an average (mean) of two years and six months from referral to diagnosis, compared to an average of half a year for those age 16 or 17.
The report suggests this may be because it is more challenging to diagnose neurodevelopmental disorders in young children. However, interviews with children and parents highlighted that sometimes a ‘wait and see’ approach can delay children from getting the early interventions they need, for example to be ready to start primary school.
Early years provision
Interviews with parents highlighted that how nurseries and schools responded to children before diagnosis had an important influence on how well a child and family were able to engage with childcare and education. For many parents, non-inclusive settings meant their ‘undiagnosed’ child was routinely neglected, excluded, isolated or sent home – with their unmet needs giving rise to behaviours deemed too challenging to manage, or misunderstood as ‘naughty’ or ‘non-compliant’.
A parent of a five-year-old with autism, ADHD and epilepsy, who was excluded from three nurseries, said, ‘Nursery just didn't want to engage with him anymore. They actually neglected him in the sense that they put him in a highchair and just left him there.’
However, parents often reflected that nurseries received little additional resourcing to make suitable adjustments.
A parent of a three-year-old boy with autism, said, ‘[The nursery] they're good and they've done the best they can, but I mean, they're so stretched as well.’
Many parents interviewed said they had been forced to involve local politicians to get their child the help they need. The interviews also revealed it is common for parents to have to give up work to care for and advocate for their child.
The report also highlights potential disparities in access to support for girls, ethnic minorities and children from disadvantaged backgrounds, widening gaps in attainment and opportunity. The Children’s Commissioner is now calling for urgent change to support in mainstream school, increased appointments and less reliance on diagnosis through:
- Earlier identification of possible neurodevelopmental conditions, and more support in mainstream schools.
- A national framework for SEN support in nurseries and schools with a move to a needs-led support system in schools and health diagnosis.
- 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.
The report also calls for a greater level of funding for nurseries and schools linked to the needs of their cohort of children, which is ringfenced.
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.’
