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(UK) Co. Durham: 5 yr wait for ASD assessment; almost 17K on waitlist

June 27, 2023, Chronicle Live: County Durham family living 'in a state of purgatory' as autism assessment waiting lists more than doubles up to five years

NE England

Nicola Bulmer's children are among the 16,765 people in the North East with open referrals for suspected autism

A County Durham mum says her family is living "in a state of purgatory" as her three children face lengthy waits for autism or ADHD assessments.

Nicola Bulmer's children are among the 16,765 people in the North East with open referrals for suspected autism - a figure which has more than doubled since October 2021 when there were 8,260 open referrals, according to a report published earlier this month.

Guidance from the National Institute for Health and Care Excellence (NICE) states that nobody should wait for more than 13 weeks between being referred and first being seen. Yet the vast majority of people in the North East – up to 98% in some areas – are waiting longer than that, according to figures from NHS England.

And the North East Autism Society (NEAS) reports that some people have been told it will take up to five years for them to get an assessment.

Nicola, from Newton Aycliffe, is more familiar with waiting lists than most. Her husband Phil waited two years for an autism diagnosis, and her three children are all waiting for autism or ADHD assessments.

She said: "My children can't get the support that comes with diagnosis. They don't understand who they are."

The 42-year-old added: "My daughter Megan shares a lot of traits with Phil, and was referred in February 2021. She has now turned 18 and hasn’t been seen, so they are moving her into the adult system at the same point.

"I'm worried because she goes to university in September and will need the Disabled Students Allowance and reasonable adjustments. But when we ring the health authority, they say they can't tell us where she is on the list.

"If we had £1,250 [$1,577] we could get a private diagnosis for her next week. But with three children waiting, we can't do that."

Megan's older brother Bradley, 20, was referred earlier this year and was told it would take at least a couple of years to be seen. And her younger sister Bronte, 13, is on a neurodivergent children's waiting list which is up to five years….

The NHS figures, which go up to March, revealed that County Durham was the area in our region with the most open referrals in March 2023 with 3,820. This was followed by Newcastle and Gateshead combined, with 2,710 open referrals.

Sunderland had the third highest figure with 1,460 open referrals in March 2023, followed closely by Northumberland with 1,445. While South Tyneside had 1,220 and North Tyneside had 1,080. Tees Valley had 5,030.

John Phillipson, CEO of North East Autism Society, said: "I am very concerned that the system appears to be in a state of collapse. From my conversations with colleagues in the local authorities around the region and in the health service, it's clear the resources are not available to address assessment needs of people in the North East.


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