NHS bodies are forcing people with suspected attention deficit hyperactivity disorder and autism to wait at least two years before they can be assessed as they struggle to meet surging demand for diagnoses of neurodiversity.
Four NHS integrated care boards (ICBs) covering large regions of England have adopted the approach because they cannot afford the cost of the number of assessments that people are seeking.
Patient groups are warning that the “scandalous” delays such policies involve may damage children’s chances of succeeding at school, deny people the help they need to manage their lives, and increase the risk of suicide. The charity ADHD UK denounced minimum waits as “heartless and dangerous”.
In all, ۱۵ ICBs, which between them cover ۱۹ million people, have brought in various ways of rationing assessments for ADHD and autism to try to balance their books. These include limiting the number of assessments the ICBs will pay for in any given year and using “clinical prioritisation” criteria to restrict assessment to those with the most serious signs of neurodiversity.
Disclosure of the NHS’s widespread efforts to delay and deny access to assessments comes before the publication of a major government-commissioned review of the colossal increases in diagnoses of mental illness, as well as ADHD and autism, in recent years. It was ordered last year by Wes Streeting, the then health secretary, amid concern that the weight of requests for assessment, diagnosis and care was overwhelming the health service’s ability to meet demand.
The ۷۰۰-page report of the review, led by Prof Peter Fonagy, was due to be published on Thursday but was unexpectedly postponed until early next month.
Sources familiar with the document told the Guardian that it painted a detailed picture of how the fast-rising demand for help with mental illness conditions, ADHD and autism has left those affected struggling to get rapid access to NHS care and increasingly reliant on private providers.
Fonagy’s report raises serious concerns about the sector, especially about the consistency and quality of the assessments it provides and the fact that there are “financial incentives associated with assessment activity”.
It also lays bare the scale of the challenge that the increasing number of diagnoses of mental illness, ADHD and autism pose for the NHS, as well as schools, employers and families, by highlighting up to ۲۴-fold rises in the prevalence of neurodiversity in boys since ۲۰۰۰.
It reveals that the percentage of seven- to ۱۸-year-old boys with autism rose from ۰.۲% in ۲۰۰۰ to ۴.۷% in ۲۰۲۵. Prevalence among boys aged six to ۱۱ rose from ۰.۴% to ۶.۳% over the same period – a ۱۶-fold jump.
Similarly, the percentage of seven to ۱۸-year-old boys diagnosed with ADHD rose from ۰.۴% to ۵.۱% between ۲۰۰۰ and ۲۰۲۵ – an almost ۱۳-fold leap – and from ۰.۷% to ۳.۸% – up five-fold – among boys aged six to ۱۱, according to figures provided by the Clinical Practice Research Datalink.
“Minimum waits” after referral by a GP mean people in the areas affected cannot seek an assessment by a private sector provider. That is even though private clinics now undertake half of NHS-funded assessments of ADHD and a third of those for autism, because many patients exercise their legal right to choose non-NHS care, given the NHS’s own limited capacity to do the assessments.
Such curbs by the NHS are likely to force those who can afford it to pay a private provider for an assessment for themselves or their child, which can cost several thousand pounds. They are being implemented at a time when there are ۹۶۰,۰۰۰ people in England waiting for an ADHD assessment and another ۲۹۵,۰۰۰ awaiting one for autism.
West Yorkshire NHS integrated care board has introduced a minimum waiting time of two years from referral for anyone seeking an ADHD or autism assessment with an independent provider. That was in response to its bill for such assessments soaring from £۷m in ۲۰۲۳-۲۴ to £۲۱m last year, it said.
The West Yorkshire ICB’s decision applies to the ۲.۴ million people for whom it commissions and pays for care in Leeds, Bradford, Kirklees, Calderdale and Wakefield. Its area includes the constituency of Pontefract, Castleford and Knottingley – the parliamentary seat of the health secretary Yvette Cooper.
Private providers that the North East and North Cumbria ICB funds to assess people “are working to an approximately ۷۸-week minimum waiting time for an initial assessment”, it says.
Somerset ICB is operating a minimum wait of ۵۲ weeks, while the equivalent in Devon is a lot lower, at ۱۴ weeks. Kent and Medway ICB has also decided to impose a minimum wait.
This month, in Hampshire and the Isle of Wight, assessment for ADHD and autism has been restricted to those patients who meet the ICB’s priority criteria.
“It’s scandalous that any NHS body should impose a two-year minimum wait for ADHD and autism assessments,” said Henry Shelford, the chief executive of ADHD UK.
“This is the health service denying people care they need, and care that is available, and slamming the door shut on people who need an assessment of their symptoms to give them a diagnosis and unlock essential care that helps people hold down jobs, stay in education and stay out of crisis services.
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“A minimum wait is heartless and dangerous. It is institutionalised cruelty.’
A spokesperson for Finally Seen, which tracks NHS restrictions on the right to choose, said: “A two-year minimum wait is not a waiting list. It is a locked door with a date on it.
“The right to choose still exists on paper. In practice it is being rationed by the calendar, which is a blunt and bleak way to treat a legal right.”
The British Medical Journal recently revealed that ۱۷ of the ۳۶ ICBs had introduced minimum waits of ۱۲ to ۱۶ weeks before patients could have a new hip or knee fitted or cataract removed, even though the NHS is meant to give ۹۲% of patients planned hospital care within ۱۸ weeks.
Mel Merritt, the head of policy and influencing at the National Autistic Society, said: “Restricting access to autism assessments denies people support because, while it shouldn’t be the case, a diagnosis is needed to get help. For children, this can mean years of wasted school while they wait for an assessment and further waits to get a plan for support and adjustments to be put into place.
“A diagnosis doesn’t only confirm if people are autistic or not, but also their needs and what adjustments could make a massive difference to being able to participate and enjoy life. Longer waiting times and restricting access to assessments will only worsen challenges for autistic people, pushing them into crisis and increasing the number of people with urgent needs.”
The Independent Healthcare Providers Network, which represents many independent assessment services, urged the NHS to let private clinics offer as many appointments as were available.
Sean Phillips, its head of policy, said: “For someone struggling with suspected ADHD or autism, those extra months or years without diagnosis and support can have a profound impact on their mental health, education, work and family life.
“With more than a million people already waiting, we should be using all available capacity to get people the support and treatment they need as well as ensuring that their legal right to choose the best provider for them is being upheld.”
Rebecca Gray, the director of the NHS Alliance’s mental health network, said local NHS leaders were “keenly aware of the deep frustration caused by long delays and are doing all they can to address them.
“But the need to balance budgets and the pressures of soaring demand have – in some places – led to ‘minimum waits’ or even the closure of some waiting lists.
“The current situation is unsustainable and delivers a bad deal for patients and taxpayers.”
