Soaring number of patients facing long waits for autism diagnosis in Nottinghamshire

More than twice as many patients were waiting longer than 13 weeks for their suspected autism to be diagnosed in Nottinghamshire in spring than before the pandemic, new figures show.

By Will Grimond
Monday, 20th June 2022, 2:02 pm
Updated Monday, 20th June 2022, 2:03 pm

Autism is a lifelong condition which impacts how people communicate and interact with the world.

It is normally diagnosed at a young age, although some may receive a diagnosis as teenagers or into adulthood.

Many people referred for assessment are being forced to wait too long to access autism-specific support services, as the latest figures from NHS England show a backlog has built up across the country.

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Across England, there were more than 100,000 people waiting for an autism diagnosis as of the end of March.

As of the end of March, around 2,640 of the 2,655 adults and children waiting for an autism assessment in the NHS Nottingham and Nottinghamshire Clinical Commissioning Group area had been on the list for more than 13 weeks – the longest time someone should wait for a diagnosis following a referral, according to national guidance.

This was more than double the 1,070 patients waiting longer than 13 weeks at the beginning of March 2020, before the coronavirus pandemic.

About 89 per cent of those waiting for a diagnosis in Nottinghamshire were under 18.

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Tim Nicholls, head of influencing and research at the National Autistic Society, a charity supporting those with the condition, said a diagnosis can be ‘life-changing’ and is crucial to getting the right help and advice.

He said: “Without proper long-term funding for diagnosis services across the country, we fear the waiting list will continue to grow and people could be left waiting months or even years for a diagnosis.

“For many of them, this will mean struggling without support at school, work or home.”

At the same time, the number of new referrals for an autism assessment in Nottinghamshire has actually dropped at the trust, from about 260 in the first three months of 2020 to 10 over the same period this year.

Across England, there were more than 100,000 people waiting for an autism diagnosis as of the end of March, including 82,000 who had been waiting for at least 13 weeks.

This is a significant rise from before the pandemic – at the start of March 2020, 53,000 people were waiting to be assessed, 42,000 of them for more than 13 weeks.

An NHS spokesman for the NHS said it was seeing ‘record numbers’ of people coming forward for support, and that the health service is working to meet increased demand on autism services.

Mr Nicholls cautioned while the latest figures are ‘important’, they do not give a full picture of just how long people are having to wait after 13 weeks, for instance.

He said greater investment is needed in autism services, and that the Government must do more to reduce assessment wait times.

A Department of Health and Care spokesman said: “We are investing £5 million over the next two years to reduce diagnosis waiting times for autism for children and young people across the country.

“This is in addition to £13m extra funding we invested last year, which will help develop a national framework with NHS England to ensure children, young people and adults receive higher-quality and faster diagnoses.”