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.
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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 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.
Nicola, who lectures at Darlington College, says: "It's so frustrating because they can't get all the support that comes with diagnosis. It affects every part of their life. They don't understand who they are or why they are as they are."
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.
"And yet the Government's own National Autism Strategy sets out the harms caused by delays in assessment, including falling into crisis and escalation of needs. We have to ask ourselves what exactly is happening here."
The North East and North Cumbria Integrated Care Board (NENC ICB) is the NHS body that funds trusts and organisations in the region to carry out assessments for autism and other neurodevelopmental differences.
A spokesperson said: "We know that too many children and adults in our region are waiting too long for an assessment, and this can be very difficult for the person and for those that care for them.
"We have seen steady increase in the number of people being referred for autism assessment in our region, and the NENC ICB is working hard with partners and service providers to reduce these waiting times."
Helen Cooper, a GP who lives in Newcastle and works in Blyth, paid £3,000 for a private diagnosis for her five-year-old son Sebastian after being told it would take up to three years on the NHS.
She said: "Not everyone can afford to do that. I've got patients who have been off sick from work for a long time because it's impacting on their mental health and they're struggling. They feel completely at sea – that long wait has a huge and detrimental effect on everything."
Families are increasingly turning to private companies for a diagnosis, but there is no guarantee that the verdict will be accepted by their local authority or the NHS. An autism diagnosis is important because it helps secure targeted support for children in schools. For adults, it can help secure disability benefits, reasonable adjustments at work and other forms of support.
Emma Huddleston's son Caden lasted half a term at his new secondary school before he became so overwhelmed he could no longer attend. He got a referral to the Children and Young People's Service (CYPS) for suspected autism but the family were told it would take the best part of two years for an assessment.
Emma, from Winlaton, in Gateshead, said: "We were in crisis mode – there was no way we could have waited two years."
Emma works at a GP’s surgery and a colleague told her about the Right to Choose option on the NHS. That gives families the right to choose which provider the GP refers them to, including private services that work with the NHS.
So Emma opted for her son to be seen by a private company in Harrogate. The whole process took less than three months and he was diagnosed as autistic in April.
She added: "We chose the company because it's not far away. But we would have driven anywhere if it would have made it quicker.
"If I hadn't worked in a surgery, I would never have known about Right to Choose. We would still be in limbo."
The North East Autism Society provides specialist care, education and services to autistic and neurodivergent children, young people and adults at 52 sites across the region. It is holding a live Q&A about autism assessments and waiting lists on Friday June 30 at 10am.
The advice session will be hosted on the Facebook page of the charity's support group North East Autism Society – Family Networking, and is open to all members of the group. To join the group follow this link or search for Family Networking.
