Soaring number of patients facing long waits for autism diagnosis in Coventry and Rugby

Many more patients were waiting longer than 13 weeks for their suspected autism to be diagnosed in Coventry and Rugby than before the pandemic, new figures show.

File photo dated 08/02/12 of a primary school child at work in a classroom. New exercise guidelines for disabled children and young people have been published by the UK chief medical officers. Issue date: Wednesday February 16, 2022.
File photo dated 08/02/12 of a primary school child at work in a classroom. New exercise guidelines for disabled children and young people have been published by the UK chief medical officers. Issue date: Wednesday February 16, 2022.

Many more patients were waiting longer than 13 weeks for their suspected autism to be diagnosed in Coventry and Rugby than before the pandemic, new figures show.

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

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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.

As of the end of March, around 4,160 of the 4,555 adults and children waiting for an autism assessment in NHS Coventry and Warwickshire CCG 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 a 59% increase from the 2,610 patients waiting longer than 13 weeks at the beginning of March 2020, before the coronavirus pandemic.

Around 69% of those waiting for a diagnosis in NHS Coventry and Warwickshire CCG were under 18.

Mr 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.

“Without proper long-term funding for diagnosis services across the country, we fear that 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 at Coventry and Rugby has actually dropped at the trust, from around 885 in the first three months of 2020 to 420 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.

A spokesperson 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 spokesperson said: “We are investing £5m 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 £13 million 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.”