Over 1,500 more patients waiting for autism diagnosis in Cumbria

NHS England figures show there were 204,876 patients with an open referral for suspected autism across the country in September, a 27 per cent rise from 161,827 the year before.

In the NHS North East and North Cumbria Integrated Care Board area, 21,030 patients were waiting for an autism assessment, up from 19,245 last year.

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Of these, 93 per cent (19,475) had a referral that had been open for at least 13 weeks.

The NHS target is for every patient with a referral to receive a first appointment within 13 weeks.

Just 11 per cent of the patients with an open referral for more than 13 weeks entering September in the North East and north Cumbria received a first appointment that month.

The median waiting time for a first appointment across England is 43 weeks.

Levi Buckley, chief delivery officer at NHS North East and North Cumbria Integrated Care Board (ICB), said: "We are aware that adults and children in our region are waiting too long for an autism assessment, and we know how difficult this can be for patients and families.

"Referrals for autism assessment have increased dramatically over the past few years.

“It is really positive that people are more aware of autism and autistic traits - which means more adults and children come forward for assessment - but it does mean that services have found it hard to keep up with demand.

“This is a challenge right across the country.

"We have recently increased annual funding for autism and neurodiversity services in the region by more than £3million per year, and this will help to support autism assessment as well as pre and post-diagnostic support.

“We are working closely with our service providers to improve the support that is available.

“These services depend on a highly trained, specialist workforce, and it will take time to increase this in order to meet demand."

Susan Prior, interim CEO of Cumbrian autism charity Triple-A, said the issue does affect them but questioned the necessity of a diagnosis in the first instance.

“Most of the NHS budget goes on providing a diagnosis, but very little on providing any meaningful support to the individual in question. 

“What would happen if we changed that focus, and put more emphasis on offering people supporting, neuro-affirmative insight into what being autistic actually means?

“Both in general and to them as individuals?

In the north Cumbria NHS area, Triple-A is fortunate to be able to do this.”

Since Spring 2022, the charity has been providing NHS-funded post-diagnostic support groups for newly diagnosed autistic adults.

“Crucially, the content of these sessions has been developed by and is facilitated by actually autistic people - people with first-hand experience of going through the process of learning themselves. 

“We are funded to deliver a set of six two-hour group sessions.

“Because of Cumbria’s geography, we offer a choice of in person sessions, or online sessions via Zoom,” she explained.

On particular barriers within the current system that disproportionately affect adults seeking autism assessments, a key focus for Triple-A, Ms Prior said: “It simply isn’t enough of a priority, either for NHS or for local authority teams. 

“A real challenge is that a very outdated perception of autism lingers on in the minds of the general public, and in the minds of many NHS decision-makers, but I am glad to say there are some notable exceptions who do ‘get it’. 

“We need to move away from the perception that it is just children or just male (people who are autistic), and the framing of dis, deficit and shortcoming. 

“Some autistic people have very high support needs, others will have variable needs. 

“It still surprises people when they meet autistic people working in leadership roles, for example - and it shouldn’t.”

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Paul Wilson, clinical manager at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW), previously said on the benefits of a formal diagnosis: “There are numerous benefits to having a formal NHS diagnosis.

"It can help in providing the correct approach and support to manage symptoms and can be beneficial for family, friends, and colleagues to understand a person’s difficulties and develop coping strategies.

“Having a formal diagnosis means a person is entitled to reasonable adjustments in work and education under the Disability Equality Act.

"It also helps them access services and benefits such as placement support and housing.

“It can provide validation for many people.

"They are able to make sense of their life experiences and identify with others.”

Tim Nicholls, assistant director of policy, research and strategy at the National Autistic Society, said the figures should be ‘a huge wake-up call to the Government to urgently fix this broken system which lets down autistic people and their families’.

"An autism assessment can be the first step to really understanding people’s needs and too often people can’t get support without a diagnosis, even though this shouldn’t be the case," he added.

"Waiting for months or years for an assessment leaves people struggling without the right support, increasingly stressed and anxious. It pushes some people to a mental health crisis."

He added without public investment the crisis would persist, ‘leaving autistic people, families and NHS services under the strain’.

An NHS England spokesperson said: "While there remains a high demand for autism assessments, we are seeing an improvement in the number of assessments completed.

"But we know there is more to do, which is why we have published new national guidance to help local partners to deliver high-quality autism assessment services and to manage the 161 per cent increase in referrals over the last four years, while providing enhanced autism training for psychiatrists."