North East waiting list for autism diagnosis hit record high

There are now more than 20,000 young people and adults on the NHS waiting list in the region, which has risen from 15,000 in 2022 and from only 4,000 in 2021.

In County Durham alone, the waiting list has tripled in the last two years, meaning 4875 people are now waiting for a diagnosis.

Local NHS trusts said they were struggling to cope with a steep rise in referrals for assessment, which they believe is due to greater autism awareness and the effects of the Covid-19 lockdown on children.

The North East Autism Society (NEAS) have warned that lengthy waits were having a damaging impact on people as well as creating trouble for the future.

NEAS chief executive John Phillipson said: “The latest figures are very disappointing. The delay in getting help and services will have long-term impacts for those people personally and for us as a society.

“There is a lot of research – including the Government’s own National Autism Strategy - showing that if you provide support early and prevent escalation of needs, you will save significant costs down the line.”

Guidance from NICE, the National Institute for Health and Care Excellence, states that nobody should wait for more than 13 weeks between being referred and first being seen.

However, the majority of people in the North East are waiting far longer than that, according to the figures from NHS England released this month.

As well as this, most people on the waiting lists, which includes 84% in County Durham and 86% in Newcastle/Gateshead, have not had any care contact at all.

Rebecca Foote, from Gateshead, has a husband and a five-year-old daughter who have been on the waiting lists for years, and say's it has put a huge strain on their family.

She said: “My daughter Emily has been waiting for 18 months and we’ve been told it could take three years. My husband Paul is into his third year on the list for an autism/ADHD diagnosis and we have no idea when that will be.”

“Emily suffers from emotional dysregulation, but because she is on the Children and Young People’s Service (CYPS) pathway for diagnosis, we can’t access help from the Child and Mental Health Services (CAMHS).

“She also has sleep issues, but you can’t get melatonin to treat it until you get the diagnosis. She’s tired, we’re all tired.

"I wish the authorities would recognise the impact this has on families, carers, and schools, not just the person at the centre of it.”

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.

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A spokesperson said: “We are aware that adults and children in our region are waiting too long for an autism assessment, and we understand how difficult this can be for the person and for those that care for them.

“Referrals for autism assessments have continued to increase significantly over the past few years. For adults, we believe this is largely because more people are talking about autism in the news, on TV, and online.

“As a result, more people understand what autism is and are able to recognise the symptoms in themselves or the people around them. More awareness and understanding of how autism affects different people is a very positive thing; however, autism diagnostic services across the UK have struggled to keep up with demand.

“It is very similar for children, and we are still dealing with the effects of Covid-19 pandemic, with a cohort of children who missed out on vital early years social skills being a contributing factor to the increased demand.

"The NENC ICB and its service providers are working hard together to address these challenges in our region. These services require a workforce with specialist skills and knowledge, which will take time to increase in order to meet demand."