Young people in Peterborough Stamford and Rutland left 'desperate' for help waiting to be assessed
Children with suspected neurodevelopmental conditions in the UK are waiting years for assessment, diagnosis and support
Last updated 22nd Oct 2024
A Stamford psychotherapist says local groups are a good way to help young people when there aren't enough appointments.
Hundreds of thousands of children with suspected neurodevelopmental conditions in the UK are waiting, often years, for assessment, diagnosis and support.
They're sad, desperate, angry
An estimated 400,000 children are seeking support from health services for a suspected neurodevelopmental condition. This is around 3% of all children in England.
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.
Not being diagnosed has a big impact
Often this results in these children reaching crisis point.
Psychotherapist in Stamford, Julie Griffin, said:
"I work with them going through school with this condition that's undiagnosed. They don't know what it is; they feel they don't fit in; they isolate themselves from others; they get bullied."
"They're sad, desperate, angry."
"I've noticed the difference in these young people, and when we get to that point where they realise that's what it is, that's why I don't feel right; it's absolutely amazing, and I've not done anything other than point it out."
"Not being diagnosed has a big impact, not knowing why you feel the way you feel."
"They can't provide the appointments at the time the young person needs them, and that's the problem."
"You suddenly get this diagnosis of autism, let's say, and you're googling and trying to self-manage it. Sometimes that can be a little scary, and you can go off on the wrong track with it."
They can't provide the appointments at the time the young person needs them
The Children’s Commissioner calls for urgent change to support in mainstream school, increased appointments and less reliance on diagnosis.
Children with cerebral palsy faced the highest waits for diagnosis – on average, three years and four months.
23% of children diagnosed with ADHD waited more than four years after their referral for a diagnosis, while 15% waited over four years for their diagnosis of autism in Community Health Services.
Children with intellectual disorders 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.
Report highlights potential disparities in access to support for girls, ethnic minorities and children from disadvantaged backgrounds, widening gaps in attainment and opportunity.