Attention Deficit Hyperactivity Disorder was named in the 1980s, and by the end of that decade forty people in Britain were being treated for ADHD, all of them children. Now more than 800,000 are in a queue for assessment and diagnosis. A government report is set to recommend changing that, so that symptoms of ADHD no longer put people on that uphill road to getting a formal diagnosis.
Wes Streeting ordered the review last December in response to rises in diagnoses of ADHD and other mental conditions, against a background of rises in sickness and incapacity benefit. Professor Peter Fonagy, a psychoanalyst at University College London, is leading the review, and has said people are being incentivised to get a diagnosis.
‘Incapacity and unemployment benefits now harm a great many of the people they are designed to help.’
In 2000 NICE first issued guidance on treatment of childhood ADHD. In 2008 its guidelines first covered adults too. Last month a Lancet study in England said 1.19% of the population has an ADHD diagnosis recorded in their GP records. The authors expressed concern not that this was so high, but that it remained substantially below published estimates. Medicine worries intensely about overdiagnosis, although usually in conditions like high cholesterol or high blood pressure, which can be objectively measured and for which drugs have proven long-term benefits. In discussions of mental health the dominant complaint is often the other way round: that diagnoses are made too seldom.
Why should a diagnosis barely referred to a generation ago now have created a queue roughly the size of Leeds? Statistics released last week, reported in The Times, show that 4.7 million are claiming disability or incapacity benefits, a rise of 1.8 million, or 62 per cent, since 2019. Not much in modern Britain tells a story of genuine growth; the exception, it seems, is mental illness.
Whatever the biological underpinnings of ADHD, they cannot have changed so quickly as to account for the extraordinary rise in diagnosis and referral. What is certain is that a great many people have a problem, and their suffering is real. Suffering is not less real when its cause is uncertain, or when it comes from social circumstances rather than biology, nor even when it is all in the mind, like grief.
The more useful question is not what causes ADHD but how we should respond, and the same holds true for many of the other mental afflictions that have become such major blights on society and on so many lives. Theories about why treatments might work can suggest possibilities, but whether an approach works, from a pill to a talking therapy or a government strategy, must be established by reliably measuring its effects, not by working outwards from conjecture.
Professor Fonagy holds the sensible view that incentives shape outcomes. Incentivise people to get a diagnosis and that’s what they’ll do. His argument is not that they should be told to develop more moral fibre, but that help should be available regardless of the presence or absence of a formal diagnosis. Only those likely to benefit from a diagnosis, perhaps because drugs may help, will be routed through clinics; others will be directed to non-clinical forms of support, from parenting classes to workplace adjustments.
‘What is the virtue of a proportional response?’ Aaron Sorkin’s West Wing had President Bartlet ask this about American military retaliation. The goal wasn’t to kill the same number of people the other side had killed, the goal was to stop them killing again.
Medicine adopts, often explicitly, a similar approach. What is the virtue of a diagnosis? As a junior doctor I was trained not to conduct tests that won’t change patient management; as a consultant I repeat that lesson to others. All tests come at a cost, be it that of money or side effects or the fact that accuracy is never perfect: therefore only order tests whose results bring benefits.
Usually that means ones that trigger a change in treatment, but not always. There are situations in which diagnosis is treatment. Knowing what’s wrong with you can help, even if the diagnosis is nothing more than a label. But a benefits system can damage people by turning illness into the most rewarding explanation for their struggles. Incapacity and unemployment benefits now harm a great many of the people they are designed to help. More and more of us are trapped without the dignity of work, swallowed up by our disease labels and a sense of self built around being the victim of illness or economics or misfortune. How we disentangle help from diagnosis is delicate work, and one hopes Professor Fonagy’s report will help more than it harms.
As a young athlete I had knee pain; when the doctor diagnosed me with chondromalacia patellae, I felt better. The pain suddenly seemed subsidiary; I carried on running, rowing, boxing. Friends who were already medically qualified laughed and said the GP had simply told me in Greek what I had told him in English. They were right, but somehow it helped.
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