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Proposals to limit the number of patients being formally diagnosed with attention deficit hyperactivity disorder have been atacked as “rationing” healthcare and pushing children and adults to self-diagnosis via social media.
The comments come ahead of a government review due next week, which is expected to say that patients with ADHD symptoms should not automatically be formally diagnosed, but should be “triaged” and offered support without the need for a formal diagnosis.
Details of this “needs-based” system, first revealed in the Times, would mean NHS services target those most acutely affected by ADHD, such as those at risk of self-harm or unable to work.
Less severely affected people may not be referred for a formal diagnosis to NHS clinics but would be offered help according to a “holistic” assessment of their needs, the report will say.
The government’s independent review of mental health conditions, autism and ADHD was commissioned in December by the then health secretary, Wes Streeting, amid concerns over the sharp rise of people making sickness benefit claims due to mental health, autism and ADHD diagnoses.
Led by Prof Peter Fonagy, a clincal psychologist and psychoanalyst at University College London, the interim review concluded that the system forces children and adults to obtain a formal diagnosis in order to get support.
Official figures show that patients are waiting years to be assessed, with 800,000 on NHS waiting lists. Meanwhile, complaints about autism and ADHD services in England have more than tripled in five years.
As a result, growing numbers of adults and young people with ADHD are not in education, training or work, of whom about 100,000 are on health-related benefits due to their condition. The ADHD taskforce calculated that the cost of undiagnosed, untreated ADHD was £17bn.
Fonagy’s review will recommend that only patients who would benefit from a formal diagnosis, such as those needing medication, would be referred to ADHD clinics.
Under the proposed holistic needs-based assessment, patients would be triaged according to their difficulties and ability to cope at school, college, work or other settings. They would be offered targeted early support, regardless of whether they had a diagnosis or not.
Such support could include one-to-one help for children to cope with lessons, quiet rooms in schools, classes to help parents support children with ADHD symptoms, and encouraging employers to offer staff with ADHD flexible hours.
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The final report is expected to propose a similarly holistic approach to supporting people with autism, and to mental health more widely.
But experts said the proposals would in effect introduce rationing of health services and that schools and workplaces are already able to offer early support without a formal diagnosis.
Henry Shelford, the chief executive of ADHD UK, said: “This [review] proposes rationing.
“There is no ‘mild’ ADHD. Diagnosis requires evidence of a debilitating impact on your life. We already have a clinically drawn line of need.
“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.”
“On average, a woman with ADHD will die nine years younger than her peers. A man with ADHD will die seven years younger than his peers. In almost any other area, those numbers would have this treated as a health emergency, but the stigma and misunderstanding around ADHD means instead we’re treated as an inconvenience and proposed to be ‘disappeared’, untreated, from the waiting lists.
“Diagnosis means people turning their lives around, more people in employment and succeeding in careers. Investing in ADHD services has a high return on investment to the country. Last year, the NHS spent £574m on a single weight-loss drug because treating people gets them back to work. The same is true of ADHD, with cheaper medication and better evidence.”
Mel Merritt, the head of policy and influencing at the National Autistic Society, said: “Denying people a diagnosis will only worsen inequalities experienced.”
A government spokesperson would not comment on the forthcoming report, but said: “Last December, we asked clinical psychologist Prof Peter Fonagy to lead an independent review, examining the prevalence of – and support for – ADHD, autism, and mental health conditions. Prof Fonagy’s final report will be published shortly and will inform our new national approach in this area.”
