The ADHD Queue Survives a Needs-Led NHS Promise

More than 560,000 people in England were waiting for an ADHD assessment at the end of 2025, a government-commissioned review has found. Another 254,000 were waiting for an autism assessment. Almost all, 90%, had already waited at least three months.

The 607-page review, led by Prof Peter Fonagy at University College London and published on 9 October 2026, says NHS help should follow need rather than a label. That shift will stall if schools and benefits still demand the label the health service cannot issue on time.

Diagnosis Is Still the Only Door

Wes Streeting, then health secretary, appointed Fonagy on 4 December 2025, with Prof Sir Simon Wessely and Prof Gillian Baird as vice-chairs. The brief was to explain why demand for mental health, ADHD and autism care had climbed, and how to support people inside and beyond the NHS. More than 120 colleagues fed the work, which now sits on the review’s official document collection.

Fonagy, who heads UCL’s Division of Psychology and Language Sciences, said the system is under immense strain because diagnosis has become a very narrow pathway to help. He kept the clinical value of a careful assessment. He also named the design flaw that built the queue.

We made a mistake in placing support behind the door of a diagnosis.

Prof Peter Fonagy, chair of the independent review

Dr Ronny Cheung, officer for health services at the Royal College of Paediatrics and Child Health, put the same problem in clinic language. Too often, he said, a diagnosis is the only route to meaningful help, so children and families struggle alone while they wait. Co-occurrence is the rule rather than the exception: among 16- to 24-year-olds with a common mental health condition, 61% also had autistic traits and 57% had ADHD symptoms. A split between mental health teams and neurodevelopmental clinics leaves those people telling their story twice.

More Than 800,000 People Are Waiting

The review is blunt about distress. Common mental disorders in 16- to 64-year-olds rose from 15.5% in 1993 to 22.6% in 2024. In 16- to 24-year-olds the share moved from about one in six to one in four. Wessely, a psychiatrist at King’s College London, called it “absolute nonsense” to treat that rise as people making it up. Fonagy wrote that the increase is real, hits everyday function, and cannot be explained by awareness alone. He pointed to money worries, insecure work, housing costs, and a first postwar dip in young people’s hope that their lives will be better than their parents’.

Recorded autism and ADHD diagnoses have moved faster than those background rates, above all in school-age groups.

HOW RECORDED DIAGNOSES HAVE MOVED

Those child ADHD shares still sit below the 5% of children that NHS England’s ADHD Taskforce, in a December 2025 summary, said research would lead you to expect. Adult research estimates sit at 2-3%. Autism in some younger groups has run past older prevalence figures, which is why Wessely warned of a tipping point where misdiagnosis and overdiagnosis start to matter for policy. The authors said they cannot conclude that overdiagnosis is happening at scale. They said the balance of risk is changing.

If present trends hold, 4 million children with high psychological distress could become 4.5 million by 2030, and self-harm among under-18s could rise from 1.9 million to 2.5 million. As many as a fifth of secondary pupils already describe themselves as neurodivergent. The review said that blur between social identity and medical classification is part of the pressure on clinics.

Private Clinics Now Do Half the ADHD Tests

NHS lists created a market. Independent providers now carry out more than half of NHS-funded ADHD assessments and more than a third of autism assessments. Families use the legal right to choose a non-NHS provider after a GP referral, and the local integrated care board pays. Clinics that only assess, and do not treat, have not had to register with the Care Quality Commission. The review recorded strong concerns about consistency, quality, and the money attached to each completed assessment.

THE PRIVATE ASSESSMENT MARKET

• The spend: NHS spending on independent-sector ADHD services rose by 252% over three years.
• The gap: Assessment-only clinics have sat outside routine CQC registration, which is built around treatment.
• The rationing: 15 integrated care boards, covering 19 million people, have put extra brakes on assessments, and four have imposed two-year minimum waits.
• One bill: West Yorkshire’s independent-assessment spend rose from £7 million in 2023-24 to £21 million a year later.
• Another bill: Cheshire and Merseyside’s adult ADHD spend rose from £11 million in 2023-24 to a projected £51 million for 2026.

Henry Shelford, chief executive of ADHD UK, has said people are not going private because they want to, they do it because the NHS is failing them. Thea Stein, chief executive of the Nuffield Trust, described the same gap from the other side.

People who need support are facing a wild west of private companies trying to fill the gaps, and it’s very difficult to determine which ones are offering good care.

Thea Stein, chief executive, Nuffield Trust

Fonagy asked ministers to ban direct-to-public advertising of these services and to put every clinic under the CQC. He also asked for a clinically led sweep of current waiting lists so that people with self-harm, several conditions, or a real risk of school exclusion or job loss move first, rather than whoever joined the list earliest.

Cooper Pledges CQC Rules Without an Ad Ban

Yvette Cooper, the health secretary, said she will draw on the review for a mental health strategy due by the end of 2026. She has asked NHS England how to give faster advice, assessments and treatment, and she accepted the CQC recommendation. She did not accept the advertising ban. The Advertising Standards Authority will be asked to look at the ads instead, so people are not pushed toward tests they may not need.

WHAT MINISTERS HAVE PROMISED

• Needs-led care: DHSC says it will overhaul services so children, young people and adults get earlier help without long waits for a clinical diagnosis.
• CQC coverage: Cooper said all diagnostic assessments for ADHD and autism will be CQC-regulated, including those done by independent providers.
• The strategy: A mental health strategy, due by the end of 2026, will set out the new model, with a focus on keeping young people in education or work.

WHAT IS UNCONFIRMED

• The ad ban: Fonagy wanted a ban on direct-to-public advertising of NHS-funded assessments; Cooper has only asked the ASA to review the market.
• The money: Stein warned that the findings risk gathering dust without funding for the new service models.
• The other gates: There is no matching pledge from schools or the Department for Work and Pensions to stop treating a diagnosis as the pass to help.

Cooper said mental health services need to change so they focus more on the early support young people need to stay in education or work or keep their lives on track. That sentence is about the NHS. It does not rewrite an EHCP form or a PIP descriptor.

What a Needs-Led NHS Would Change

On paper, English education law already looks needs-led. The Children and Families Act 2014 and the SEND code of practice for ages 0 to 25 say a child has special educational needs if they require extra provision, not if they hold a named diagnosis. Schools must use their best endeavours to meet those needs. In a lot of staff rooms the working rule is still the opposite: no report, no extra help. The review traced part of that habit to changes around 2014 that, in practice, made a diagnosis the document parents needed for extra support.

NHS England’s own ADHD Taskforce had already told the system to do not wait for a diagnosis before helping a struggling child. It said about 5% of children have ADHD, that far fewer have a diagnosis and are getting help, and that only 25% of children and 15% of adults with ADHD receive medication, against research suggesting 70-90% benefit. Untreated ADHD, it estimated, costs the UK about £17 billion a year in school failure, long-term unemployment, mental illness, substance use and crime. Fonagy’s review now asks the NHS to join mental health and neurodevelopmental services and to offer sleep help, anxiety support and school or workplace adjustments at the point of need.

A needs-led clinic that still cannot write the letter a school or an employer will accept simply moves the bottleneck. Parents will keep paying for a private assessment because the letter, not the coping plan, unlocks the classroom and the HR file. The review’s warning about identity sits here too: an inaccurate label can stick to a child as their difficulties rather than their strengths, which is a harm even when the wait is short.

PIP for Young Adults Has More Than Tripled

The same ticket operates in the benefits system. The review found that by 2024, 40% of adults receiving out-of-work and disability benefits screened positive for ADHD traits, and it argued that a diagnosis should not be treated as proof that someone cannot work. Children diagnosed with autism or ADHD before 17 are around four times more likely to be not in education, employment or training between 16 and 24. Around a third of 16- to 24-year-olds in that NEET group report mental health or autism as a factor. Almost 1 million young people are NEET. A record 2.8 million people are too sick to work.

PIP FOR ADHD AND AUTISM

• Young adults: By April 2026, 205,400 people aged 16 to 24 were receiving Personal Independence Payment for ADHD or autism, more than three times the 2019 figure, at an estimated £1.36 billion in 2025/26.
• The least deprived: Among 16- and 17-year-olds, rates in the least deprived fifth of neighbourhoods rose from 0.8% to 2.5% between 2019 and 2025.
• The most deprived: In the most deprived fifth, rates rose from 2.1% to 5.1% over the same years, still higher, but the gap narrowed.
• The bill in affluent areas: About £87 million of an estimated £296 million spent on those 16- and 17-year-old payments in 2025 went to the 40% least deprived neighbourhoods, up from £22 million in 2019.

Nuffield Trust analysis of PIP rates for ADHD and autism found the old link with deprivation is weakening, with the fastest growth in some of the least deprived areas. Stein said that raises hard questions about how people’s circumstances and expectations shape who is recognised as disabled. A needs-led NHS that never touches those PIP rules will still send families through a diagnostic door, because the weekly payment sits behind it.

Fonagy’s Fix Stops at the Clinic Door

The review did the thing ministers asked: it said young people’s distress is real, the NHS cannot run a diagnosis-first service at this volume, and private assessment needs a regulator. Cooper has taken the CQC piece and the language of early help. She has left the advertising ban, the school letter, and the benefits form for later documents.

Until those other doors open without a clinic stamp, the 560,000 people already waiting for an ADHD assessment, and the 254,000 waiting for autism, will keep joining a list that exists to mint the one piece of paper everyone else still requires.

Disclaimer: This article is news reporting on a government-commissioned review of mental health, ADHD and autism services in England, and it is for information only. It is not medical, diagnostic or benefits advice, and it does not say whether any reader has ADHD or autism, whether they should seek an assessment, or how a claim for disability support should be made. Anyone worried about their own health, or a child’s, should speak to a GP, another qualified clinician, or a school special educational needs coordinator before acting. Figures and policy pledges are those set out in the review and in ministerial statements published with it, and they may change as NHS England and departments issue the mental health strategy.