Thousands of patients face long waits for autism diagnosis in Nottinghamshire

A think tank has said a “radical rethink” of autism and ADHD assessments and treatments is needed if the NHS is to keep up with demand.

The National Institute of Health and Care Excellence has set a target time of 13 weeks for those with suspected autism to be assessed.

But figures from NHS England show around 4,995 people in the area covered by the NHS Nottingham and Nottinghamshire Integrated Care Board had been waiting at least this long for an autism diagnosis at the end of 2023.

Of these, 70 per cent were under 18.

This was up from the same point a year before, when 3,555 people were waiting for 13 weeks or longer, 82 per cent of them children.

Location data is not available for a small percentage of patients across England, meaning there may have been more patients last year than this figure suggests.

Charlotte Reading, head of Learning Disabilities and Autism Transformation at NHS Nottingham and Nottinghamshire, said: “Demand for autism assessments nationally, regionally and locally has risen rapidly over the past few years, with demand exceeding capacity within services.

“This has unfortunately resulted in longer waiting times. In Nottingham and Nottinghamshire, we have seen a 188 per cent increase in referrals for adult autism assessments in 2023/24 compared with 2020/21. Referrals for children and young people have increased by 39 per cent during between 2021/22 and 2023/24.

“We are committed to improving the experience for autistic people and we are working with our partners to review the autism assessment pathway and services to reduce the waiting times and ensure there are no gaps in services.

“We have also been working with services to improve the experience of people who are waiting for an assessment by providing waiting well information including support available on receipt of referral.

“Following service user feedback, we are also improving the frequency of communications between services and those waiting for an assessment.”

Analysis from the Nuffield Trust – a think tank – shows the 172,000 open referrals in December is the highest figure ever, and a five-fold increase since 2019.

Thea Stein, chief executive of the Nuffield Trust, called the rise in demand "unprecedented", saying the NHS is struggling to meet it.

She urged: “We are only now beginning to recognise just how many people are neurodiverse. The challenge is that we have an obsolete health service model in place to deal with this avalanche of need.

“We need to urgently understand the different elements of this complex picture and find a whole system approach across education, society at large and the health service.”

Across the country 136,000 people were referred to NHS autism services in 2023, with 2,485 of them in Nottinghamshire.

In 2022 there were 112,000 new referrals.

Saffron Cordery, deputy chief executive at NHS Providers, said improving the quality of care and access to services for autistic people "must be a priority".

"That includes making sure that patients, carers and families are involved fully in decisions about their care. We need to make sure too that the full range of services on which autistic people rely are funded properly and prioritised nationwide," she added.