NHS cannot meet autism or ADHD demand, report says

The Nuffield Trust said long waits for autism assessments were especially damaging for children

The extraordinary rise in demand for autism assessments and ADHD treatments in England has overtaken the NHS's capacity to meet it, a think tank says.

Since 2019, there has been a five-fold rise in people waiting to see an autism specialist and a 51% increase in prescriptions for ADHD medication, according to the Nuffield Trust.

Growing backlogs and longer waiting times are negatively impacting people's daily lives, it warned.

It said a "radical rethink" was needed.

Nuffield Trust chief executive Thea Stein said "pumping more money" into the current system would not help, and it was "frankly impossible to imagine how the system can grow fast enough to fulfil this demand".

"We're at a really critical point as a society, where we're actually understanding neurodiversity and the fact that it's a much greater spectrum for the whole of society than we've ever had before," she told BBC News.

"It's a really complicated issue for us to all collectively understand as a society."

Waiting time

One out of every 100 people is on the autistic spectrum, it is estimated, while 2.6 million people in the UK have attention deficit hyperactivity disorder (ADHD) .

The Nuffield Trust said 24% of patients referred for ADHD in England were having to wait one to two years for an assessment.

On top of this, thousands of people with ADHD have been unable to get prescribed medication amid a major supply shortage. This was announced in September due to "manufacturing issues and an increased global demand".

Meanwhile,172,000 adults and children are on a waiting list for an autism assessment - the highest recorded figure - according to NHS data analysed by the think tank.

Between October and December 2023, the median time spent on a waiting list after an autism referral rose to over nine months, compared with four months in the same period in 2019.

And in Derbyshire, the waiting time was two and half years, according to the report.

Ellie Middleton, a creator, writer and consultant with autism and ADHD, said receiving her late diagnoses has "honestly been life-saving for me".

She was diagnosed with ADHD privately. The waiting list for an initial NHS appointment was "incredibly long" in her local area, she said, and she was "really struggling with not knowing what was going on". She received an autism diagnosis through the NHS about six months later.

She told BBC Radio 4's Today Programme: "Before I knew what was going on I always felt like any challenges that I faced and any things that were more difficult for me were a personal problem.

"Getting that answer to what is actually going on for you is just so validating."

Changing social attitudes

The way NHS Digital collects data has changed since 2019 - but Ms Stein is confident it remains robust.

The rise in demand was probably due to greater awareness of the conditions and changing social attitudes, the Nuffield Trust said.

ADHD was the second most viewed health condition on the NHS website in 2023, after Covid-19, according to NHS England.

• 'Finding out I was autistic saved my life'

• Autism referral waiting times hit 100 days

Ms Stein warned long waits would have a "serious effect" on children in particular, as many schools provided extra support only after a diagnosis.

"We've certainly got to have a different approach within educational services that says you don't need that letter in your hand," she said.

People should not have to have a diagnosis just "to get a label out of it".

And wider societal change was needed "to allow ourselves to include more people who present with more neurodiversity".

"We are going to need to think in a much more creative way than simply have a conversation that says we need more NHS resources, as that isn't the solution," Ms Stein added.

Sir Simon Wessely, Regius Professor of Psychiatry at King's College London, said the change in demand for ADHD diagnosis and treatment was "dramatic" but there was no evidence to suggest the disorder was getting more common.

He told the Today programme that GPs are seeing some patients who are looking for "validation" and "recognition" and "not always wanting treatment".

"They don't necessarily think they are ill, they think they are different".

There "probably isn't a medical answer to that", he said, adding it was a wider issue for society.

'Taking action'

The charity Child Autism said the spike since 2019 may be party due to the suspension of some services during the pandemic, causing a backlog.

Its chief executive, Suzy Yardley, agreed a new "coherent UK-wide plan" was needed.

"Autistic children have huge amounts to contribute, and we need an overhaul of the system to ensure this can happen", she said.

Dr James Cusack, chief executive of the charity Autistica, said: "It has been evident for some time that services need to adapt to the knowledge that there are more neurodivergent people than we used to think."

And there was a "need to focus on each person's strengths and needs so that they get the support they need earlier".

A Department of Health official said: "We know it's vital to have a timely diagnosis of autism or ADHD and we are taking action to reduce assessment delays.

"NHS England has published a national framework to help speed up autism assessments and is establishing a new ADHD taskforce alongside the government, to improve care for people living with the condition.

"In addition, our £13m partnership with NHS England will help improve specialist support for neurodiverse children in primary schools."