England is moving toward a proposition that reads as reasonable in a policy document and as something else entirely in a GP’s consulting room: that a diagnosis is not the only form of care, and that a system with 800,000 people in its queue might help more of them by triaging need rather than processing everyone for assessment.
A government-commissioned review due next week is expected to recommend exactly that for ADHD. Led by Prof Peter Fonagy, a clinical psychologist and psychoanalyst at University College London, the review would establish a “needs-based” system in which patients presenting with ADHD symptoms are not automatically formally diagnosed. Instead they would be triaged on how badly their difficulties affect school, college, work and daily coping, and offered targeted support regardless of whether a diagnosis follows. Only those who would benefit from a formal diagnosis — the example given is people who need medication — would be referred on to ADHD clinics.
What “support without diagnosis” would mean
The promised help is concrete: one-to-one assistance for children in lessons, quiet rooms in schools, classes to help parents support children with ADHD symptoms, and pressure on employers to offer flexible hours. Services would concentrate on those most acutely affected, such as people at risk of self-harm or unable to work. Fonagy’s final report is expected to propose a similar holistic approach for autism, and for mental health more widely.
The interim version of the review concluded that the current system forces children and adults to obtain a formal diagnosis in order to get any support at all. That is the reform’s strongest argument, and it is about the shape of the queue rather than the size of it: official figures show patients waiting years for assessment, 800,000 on NHS waiting lists as of May, and complaints about autism and ADHD services in England more than tripling in five years. Growing numbers of adults and young people with ADHD are neither in education, training nor work; about 100,000 are on health-related benefits because of the condition. The ADHD taskforce put the cost of undiagnosed, untreated ADHD at £17bn.
The context matters, because the review was not commissioned as a patients’ rights exercise. Wes Streeting, then health secretary, ordered it in December amid concern about the sharp rise in sickness-benefit claims attributed to mental health, autism and ADHD diagnoses. The same document is therefore an access reform and a spending control, and its critics read it primarily as the second thing.
“There is no mild ADHD”
Henry Shelford, chief executive of ADHD UK, called the direction “rationing.” His argument is that the triage line already exists and is clinical: “There is no ‘mild’ ADHD. Diagnosis requires evidence of a debilitating impact on your life. We already have a clinically drawn line of need.”
The consequence he predicts is not that people quietly go without, but that they self-diagnose instead. “Without a formal diagnosis, it appears we will be left to self-diagnose via social media. Schools and businesses shouldn’t be forced to rely on TikTok to know when to put in adjustments and support.”
He also made the investment case in the government’s own language, noting that the NHS spent £574m on a single weight-loss drug last year on the grounds that treating people returns them to work: “The same is true of ADHD, with cheaper medication and better evidence.” He said a woman with ADHD dies on average nine years younger than her peers and a man seven years younger — figures he presented as a health emergency that is instead being treated as an inconvenience.
Mel Merritt, head of policy and influencing at the National Autistic Society, put the equity objection plainly: “Denying people a diagnosis will only worsen inequalities experienced.”
The counterargument the reform does not answer
Experts quoted by the Guardian made the point that schools and workplaces are already able to offer early support without a formal diagnosis — which is not a refutation of the proposal so much as a warning about what it delivers. If the adjustments were available without the label, the review’s offer is genuine. If they were only ever available because someone had a piece of paper, then “support without diagnosis” describes a promise rather than a mechanism.
For now the report has not been published, and a government spokesperson declined to comment on its contents, saying only that Fonagy’s final report “will be published shortly and will inform our new national approach in this area.” What is settled is the direction of travel: fewer formal diagnoses, more triage, and a system asked to sort people by how much they are struggling rather than by what they can be called.
Read the full story at The Guardian.