A major report into ADHD and autism has been delayed amid fears sparking a debate around overdiagnosis was not the “right timing”, The i Paper understands.
The landmark review into the rising mental health, autism and ADHD (attention deficit hyperactivity disorder) diagnosis was expected to be published last week, but was pulled at the last minute.
The i Paper revealed the report was expected to find ADHD and autism are not widely overdiagnosed in the UK and that a growing number of people are incentivised to seek a diagnosis as support – including benefits such as personal independence payments (PIP) – is difficult to obtain without one.
Its conclusions are likely to be the subject of fierce debate, with a sharp rise in cases leading some experts to question whether they are being diagnosed too readily. Others argue the increase reflects improved recognition of the condition.
A source with knowledge of the discussions said there were concerns publishing the report’s findings on the eve of Andy Burnham’s first Labour conference as Prime Minister could “dominate” the narrative around planned welfare reforms.
A government source suggested the report will be released closer to the publication of Labour grandee Alan Milburn’s review into youth unemployment later in the autumn, which is expected to include proposed solutions the soaring cost of health-related benefits in Britain.
They said: “I think there is a conversation on going about how you better align it [the Fonagy review] to the publication of the Milburn review.”
Pressed whether this was the reason for the delay, the source added: “I think it might be in part connected to that…They are two separate things, but it would be like kite flying without something more substantive to say.”
They also confirmed that they did not think that publishing the review ahead of conference would have been the “right timing”.
‘Disagreement’ on ADHD overdiagnosis
The review was launched by Wes Streeting in his former role as health secretary under Sir Keir Starmer to examine soaring patient demand for services relating to mental health, autism and ADHD.
One source close to the review suggested there has been disagreement over how definitive the final report should be on the question of ADHD overdiagnosis, although the issue is understood to have since been resolved.
The group of experts chairing the review are poised to acknowledge that there are pockets of overdiagnosis and misdiagnosis, with private ADHD clinics set to face regulation to prevent diagnosis from being inflated.
The report, led by clinical psychologist Professor Peter Fonagy, is understood to conclude that rising rates of distress are leading to a surge in diagnoses across mental health, ADHD and autism, with people increasingly having “comorbidities”, meaning multiple conditions at once.
It is set to recommend that services geared towards these conditions will be brought closer together so that people presenting with distress can access help more quickly, without having to go down an official clinical pathway before accessing support.
ADHD diagnosis rising quickly
Speaking at a fringe event hosted by the Institute for Public Policy Research (IPPR) at Labour’s annual conference, Milburn pushed back on the overdiagnosis debate, saying that distress rising among young people is a “real thing”.
He said: “I think we’ve just got to make sure that we’re in the right debate because we can have an endless debate about one thing, which is: is it real? Everybody wants to have this debate about diagnosis, misdiagnosis, overdiagnosis, medicalisation, undermedicalisation, all of that, and that’s fine.”
Milburn said Prof Fonagy is expected to say distress rising among young people is a “real thing” but ADHD and autism is a “slightly different story” as there is a widening gap between underlying prevalence of these conditions and the rates of diagnosis.
“Diagnosis is rising far more quickly than prevalence is, and so something is going on,” he said, explaining that the health system is geared towards needing a diagnosis to get treatment.
“You get the diagnosis, you’re on waiting lists. When you’re on waiting lists, you’re not working. When you’re not working, you slip into welfare. When you get into welfare, it’s sticky and you can’t get out.”
Pat McFadden, the work and pensions secretary who is working closely with Milburn, added the ADHD and autism report and the Government response will “break the link between diagnosis” and the “assumption that it leads to a life on benefits”.
Professor Fonagy’s interim report, published in March, found that while underlying rates of autism and ADHD in the UK population had remained relatively stable, there had been a “substantial increase” in referrals and diagnoses for these conditions.
It cited greater awareness and recognition of the conditions and changes in “levels of distress”, but acknowledged there were institutional incentives associated with diagnosis.
While the review can set out conclusions and make formal recommendations, it will be up to the Department for Health and Social Care (DHSC) to set out a new national approach.
A government source said the report was delayed due to issues with the plan for scheduling announcements ahead of Labour’s conference.
A spokesperson added: “Last December, we asked clinical psychologist Professor Peter Fonagy to lead an independent review, examining the prevalence of – and support for – ADHD, autism, and mental health conditions.
“Professor Fonagy’s final report will be published shortly, and will inform our new national approach in this area.”
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