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(UK) "157,579 people waiting for an autism assessment in England"; 35% increase

July 6, 2023, Stoke On Trent: The battle to get an autism diagnosis as waiting lists 'overwhelm' NHS


A North Staffordshire-based charity is helping to cut waiting times for autism assessments and ease the strain on the 'overwhelmed' NHS. Caudwell Children, which is based on Keele University's Science Park, is working with trusts around the country as the number of people awaiting diagnosis soars.
According to the latest NHS figures published by the National Autistic Society earlier this month, 157,579 people were waiting for an autism assessment in England in March this year - a 35 per cent increase in the number of people waiting in just one year.
The charity warned that if waiting lists continue to grow at this rate, by March next year there would be more than 212,000 people waiting for an autism assessment.

Autism Diagnosis and Early Treatment

National guidance states that no one should wait longer than three months between being referred and first being seen, but this data shows that the vast majority of people 84 per cent - or 133,000 people - had been waiting longer than 13 weeks. StokeOnTrentLive reported last year that little Logan Prince, then aged three, had been waiting a staggering 75 weeks for his assessment.

Caudwell Children launched its autism service in 2019 to help reduce NHS waiting times, and has a dedicated clinical team delivering child-centred assessments at their purpose-built centre.

CEO Trudi Beswick said: "Caudwell Children is dedicated to ensuring all autistic children and young people have the choice, opportunity, dignity and understanding they deserve. For most this begins with a timely diagnosis and immediate post-diagnostic support, but sadly this is not the case for thousands of families stuck in an overwhelmed CAMHS system….

Mum-of-four Sally Langdon, of Fenton, and her family have benefited from the charity's assessment programme. Her 17-year-old twins Chara and Haydn have both been diagnosed with autism - Haydn at the age of 11 through Child and Adolescent Mental Health Services (CAMHS) and Chara earlier this year through Caudwell Children.

The twins also have a number of other medical conditions after being born at 32 weeks. Haydn has epilepsy and mild cerebral palsy, while Chara, who is non-binary and uses 'they/them' pronouns, is visually impaired, has Tourette's and mobility problems, among other conditions….

The 45-year-old said: "Haydn was assessed for autism at the ages of three and six, and both times they said he was not autistic. Then when he was 11 he was assessed again by CAMHS because he was suicidal and his epilepsy was bad. After speaking to him for about six minutes they said he was autistic - and then we never heard anything from them again.

"Chara's autism started presenting itself a lot more when they were 13 or 14. The mask was slipping because they had a lot going on, particularly during Covid. They were referred to CAMHS but there was an 18-month waiting list and the assessment was outsourced to Caudwell Children.

"We still waited quite a few months for the appointment, but the moment we walked into the building at Keele in January this year it was like a weight had been lifted….

Ms Beswick, CEO of Caudwell Children, said the charity was delighted to help young people like Chara to lead a 'fulfilled, productive and happy' life.

She said: "Our mission is to deliver and evidence a more efficient pathway of assessment, diagnosis and intervention to help support the NHS and help young people like Chara from all over the UK get the help they need. With the correct and timely support fantastic young people like Chara and Haydn can lead fulfilled, productive and happy lives

. "We are delighted that we could help them as a family and will continue to support them and many other families in a similar situation."

North Staffordshire Combined Healthcare NHS Trust, which runs Child and Adolescent Mental Health Services (CAMHS) in this area, said it was unable to comment on individual cases. It did not respond to questions about the current waiting time for autism assessments in North Staffordshire or the number of people on the waiting list.


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