Darlington mum says waiting four years for an autism assessment is 'heartbreaking'

The Earl family are hoping for answers on their son Vinnie's condition. Credit: Family photo

More than 10,000 children in the Tyne Tees region are currently waiting for an autism assessment.

The data from NHS England shows that in March 2023, 10,385 children in the North East and North Yorkshire had an open suspected autism referral.

84% of those children are waiting longer than the 13-week target time for their first appointment.

Guidance from NICE, the National Institute for Health and Care Excellence states that no-one should wait longer than three months between being referred and first being seen.

The data also shows there has been rise of 2,365 children waiting for an assessment since March 2022- a 29% increase.

The Earl brothers have both experienced long waiting lists for confirmation of their condition. Credit: Family photo

Vinnie Earl from Darlington is waiting for an assessment for autism and ADHD (attention deficient hyperactivity disorder) and the 10-year-old's family have been told it could take four years.

His mother Liz Earl said; “He's now ten and he's a year and a half into an approximately four year waiting list, which would take him up to about 13, which takes him into secondary school.

"He's not going to get the support needs and secondary. He needs that support now to get those sort of core academic subjects in place. It's absolutely heartbreaking."

Oscar received a diagnosis for ADHD and autism after a three-year wait. Credit: Family photo

Vinnie’s brother Oscar received a diagnosis for ADHD and autism after waiting for three years. He now receives medication. Oscar said: "I take them every morning when I get down for my breakfast and they help me to be able to focus.”

Mrs Earl said the diagnosis for Oscar has been lifechanging. She said: “We're able to read up on things. We're able to look at strategies to help him and support him. We've learned we've spoken to other families. We've got things in place. School have been supportive as well, and  we've now got a name for it so we know what we're looking for.

Long waiting times for assessments is an issue raised in Parliament by Peter Gibson, the Conservative MP for Darlington.

Mr Gibson has spoken to NHS bosses at the mental health trust that carry out assessments in the Tees Valley: “This is not about money, but the recruitment and retention of the necessary staff they need to carry out these assessments. 

"I am not being told they don’t have the money to recruit. If they told me that, I would be banging on the Treasury door to demand that extra money.”

Mr Gibson also said there are other organisations that can support families and people waiting for a diagnosis.

He told ITV Tyne Tees: “There are a range of organisations like parent and carer forums and Daisy Chain and other charities and groups who are able to provide help and support guidance.

"A really great example of help out there is the Tees Valley sleep service operated by Daisy Chain. We know for parents with neurodiverse children, sleep patterns are one of the biggest challenges they face and that support is there and is freely available.”

The MP for Darlington said condition waiting times is one of the biggest issues he is told about by constituents an Credit: ITV Tyne Tees

The North East and North Cumbria Integrated Care Board which provides funding to a number of health trusts and specialised organisations to carry out the assessments said:  "Sadly, we know that too many people in our region are waiting too long to be diagnosed with autism or other neurodevelopmental differences, meaning that early help and support is delayed, which we know is very difficult for the person and for those that care for them.”

“We have seen a major increase in demand for assessments and support services over the past three years. This is very challenging to manage as these services require a workforce with specialist skills and knowledge which will take time to develop. This is however not just an issue in the North East and North Cumbria but also nationally.”

“Children and young people's mental health is a priority to tackle in our region, and we are working collectively with partners to transform services based on lived experiences to improve assessments, support services, and outcomes.”

“We are also working with young people, families, and partners across health, social care, and education to improve local services for people with neurodevelopment needs, which can be accessed close to home and give support while waiting for a diagnosis and may mean that receiving a diagnosis becomes unnecessary."

In a statement released by the government, a Department of Health and Social Care Spokesperson said:  

“It is vital to have a timely diagnosis of autism and we are committed to reducing delays and improving access to support.

On 5th April 2023, NHS England published a national framework and operational guidance to set out the process of how children, young people and adults might receive an autism assessment.  Additionally, building on the 2021/2022 investment of £13 million, last year (2022/2023) we invested £2.5 million to improve autism diagnostic pathways.

"This year (2023/2024), £4.2 million is available to improve services for autistic children and young people.”

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