Three-quarters of north east Lincolnshire patients waiting too long for autism diagnosis

Three-quarters of people with suspected autism in north east Lincolnshire waited too long for a diagnosis in December, new figures show.
File photo dated 08/02/12 of a primary school child at work in a classroom, as almost half of children awaiting an autism assessment have been doing so for more than a year, with hundreds more waiting upwards of four years, figures show.File photo dated 08/02/12 of a primary school child at work in a classroom, as almost half of children awaiting an autism assessment have been doing so for more than a year, with hundreds more waiting upwards of four years, figures show.
File photo dated 08/02/12 of a primary school child at work in a classroom, as almost half of children awaiting an autism assessment have been doing so for more than a year, with hundreds more waiting upwards of four years, figures show.

Three-quarters of people with suspected autism in north east Lincolnshire waited too long for a diagnosis in December, new figures show.

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

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The National Autistic Society said a diagnosis is vital, and called on the Government to provide imminent funding to clear the soaring backlog of people with suspected autism across England.

Sunday is the United Nations-sanctioned World Autism Awareness Day, which this year focuses on a "neuro-inclusive world for all".

But the latest NHS Digital figures show approximately 115 people suspected of having autism were waiting for an assessment after being referred by a specialist in the former NHS North East Lincolnshire CCG area at the end of December.

NICE guidance says no patient should wait longer than 13 weeks, but 85 (74%) people in north east Lincolnshire had already breached this standard at the end of last year.

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In December 2021, around 75 people had an open referral – of which 60 had been waiting for more than 13 weeks.

The figures are rounded to the nearest five, while clinical commissioning groups were abolished and replaced with integrated care boards across England.

Meanwhile, the number of people with an open referral for an autism assessment has soared during the pandemic – in December 2019, 25 people were waiting for a diagnosis.

Nationally, more than 140,000 people were estimated to be waiting for a diagnosis at the end of last year – up from 47,000 in December 2019. Of these, more than 120,000 (87%) have waited more than 13 weeks.

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The National Autistic Society said a diagnosis is "vital to getting the right help and support" and that many struggle at school, work or home, or can develop mental health problems like anxiety or depression without one.

Tim Nicholls, head of influencing and research, said: "Without significant, long-term funding for diagnosis services across the country, many autistic people will continue to face traumatic long waits for an assessment.

"As a result, many will be left struggling without the right support at school, work and home. The Government must urgently invest in diagnosis services, as set out in the national autism strategy for England, and make sure that autistic children, young people, adults and their families get the support they need.

Of the people waiting for a referral, around 90 were aged 17 and under.

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The Department for Health Social care said it is "committed to reducing delays and improving access to support".

A spokesperson added: "We are investing £2.5 million this year to ensure patients are seen more quickly, on top of £74 million in the first year of our national autism strategy, and NHS England is producing national guidance to improve outcomes for autistic people throughout their diagnosis."