“Too many people are being written off,” said health secretary Wes Streeting to Laura Kuenssberg in March, as the government prepared to overhaul the welfare system and slash provision for people with disabilities. He said that there was “overdiagnosis” of some mental health conditions, and this was contributing to the growing number of people out of work due to sickness.
Streeting is not the first public figure to use the term “overdiagnosis” in relation to mental health issues; in fact, the phrase has been cropping up in newspaper columns for years. But this was the first time I’d heard a member of the government use it to justify a change in policy. It was clear, at that moment, that the culture wars over mental health had broken into the highest echelons of government—and that “overdiagnosis” was the latest front.
I am deeply disheartened by these wars, probably because, as Prospect’s “Mindful Life” columnist, my own mental health diagnoses have had such a profound impact on my life. For me, debates about mentally ill people—questions about who we are, what we are capable of, and the validity of how we describe our experiences—are deeply personal. And, as someone who has a family history of serious mental illness going back four generations (which said family have kindly let me write about), I am particularly sceptical about grand narratives that do not acknowledge the complex history of mental health and the stigma and shame that pervaded the discussion for centuries.
So when I was asked to review two new books about overdiagnosis, I approached them gingerly. The first, No More Normal: Mental Health in the Age of Diagnosis, is written by consultant psychiatrist Dr Alastair Santhouse, who has decades of experience working in a south London NHS Trust. His argument is simple: the line between normal mental distress and mental illness has become blurred, and diagnoses have become so expansive that they medicalise people who aren’t ill at all. “We should save mental health care for those who need it,” he writes. “Life can be hard, and the hard parts are unavoidable.”
Santhouse takes us into the consulting room and introduces us to various patients, from Jen, a woman in her forties suffering with unexplained memory loss, to Lloyd, a young man struggling with paranoid schizophrenia, and Rina, a young woman with what’s known as “TikTok Tourette’s” (a condition by which people develop involuntary tics after watching online videos of others with Tourette’s). As he does so, he explores the complexity of his role as an arbiter of who is ill and who is not. “A great deal of medicine is about trying to interpret a subjective, internal and individual experience,” he says. “This can be hard enough to measure in physical medicine, even when there is an obvious visible or detectable bodily cause, but the challenge is even greater in psychiatry.”
Suzanne O’Sullivan, author of the second book, The Age of Diagnosis: Sickness, Health and Why Medicine Has Gone Too Far, agrees. “Diagnosis is an art and a science, but, surprising as it may sound to some, the art still takes precedence,” she writes. O’Sullivan is a consultant in neurology and neurophysiology, and her first book, It’s All in Your Head, won the Wellcome Book Prize and the Royal Society of Biology Book Prize. In The Age of Diagnosis, O’Sullivan takes Santhouse’s argument beyond the realm of psychiatry. She argues that, across medicine, from genetic testing to cancer screening, an obsession with early diagnosis and early treatment is damaging patient health as much as improving it. “We are becoming victims of too much medicine,” she writes, “and it is time to turn back the dial.”
O’Sullivan defines overdiagnosis as occurring “when a medical problem is detected at a stage when medical treatment is not really required”. Overdiagnosis is, she argues, too much “health screening of asymptomatic individuals with no evidence it leads to longer or better lives”. It is “too much aggressive treatment for early disease”. It is “too much unnecessary health monitoring”.
Like Santhouse, O’Sullivan paints portraits of her patients and their struggles—albeit more warmly (on the page, Santhouse at times embodies the stern psychiatrist whom many of us patients fear). She charts the experiences of people facing truly existential dilemmas, like Valentina, who must decide whether or not to take a genetic test for the incurable degenerative Huntington’s disease after watching her mother struggle with it, and Roisin, who takes the difficult choice to have both her healthy breasts removed at the age of 26 after a genetic test identifies she had a high-risk BRCA gene.
Through examining their stories, O’Sullivan challenges what she regards as medicine’s “presumed truths”. These truths include: “That early diagnosis is always for the best. That having a diagnosis is always better than no diagnosis. That people want to know their medical future even if it can’t be changed…. That high tech is better than low tech.”
Negative psychological impacts can come from knowing too much about our bodies
Despite my fears, O’Sullivan’s book in particular is revelatory. She robustly challenges the received wisdom that we should all be monitoring our health with close attention, highlighting the potentially negative psychological impacts that can come from knowing too much about our bodies. She also highlights the astonishing lack of evidence for the screening and testing programmes that have become a staple of the healthcare systems of rich nations.
She points to a US study which found that, after a new screening for thyroid cancer was implemented, “nearly four times as many people were being treated for thyroid cancer, but no lives were saved or even prolonged”. She adds that “this outcome strongly suggests that the majority of cancers found on screening did not need to be treated… Breast, prostate and melanoma cancer screening programmes have all fallen foul of this problem—more people treated for early cancer but no reduction in late-stage cancer or death.”
O’Sullivan then turns her concerns about overdiagnosis to mental health and neuro-developmental disorders. In a chapter called “ADHD, Autism and Depression”, O’Sullivan makes similar arguments to Santhouse. She claims that the expansion of diagnostic categories to include people with milder forms of illness leads to overdiagnosis. Both Santhouse and O’Sullivan raise some important points—crucially, they emphasise the danger that a focus on milder forms of a condition can take resources, attention and understanding away from the people with the most severe forms, who need the most help.
And Santhouse does an excellent job of explaining that, while some diagnoses have become trendy, others have been completely overlooked—such as depression in older people, which can resemble dementia. Santhouse also exposes the idiocy of the current risk-based approach to mental health consultations, which demands that mental health professionals shoehorn questions about suicide into every conversation. “Over the years, many patient interactions have become formulaic, more impersonal and primarily interested in what is medically and legally defensible, should anything go wrong,” he writes.
However, these are not the issues that generate feverish media debate. It is the broad brushstroke idea that people are being overdiagnosed with certain psychiatric conditions—an argument that both authors put their significant professional heft behind—that is influencing political thought. I remain unconvinced. While shouting “Overdiagnosis!”, both Santhouse and O’Sullivan fail to provide an adequate yardstick for the “correct” level of mental health diagnosis.
Both assume, like most other proponents of the overdiagnosis argument, that the appropriate yardstick is comparison with historical rates of diagnosis. “One in five young people in the UK is now said to have a mental health problem, which is an astonishing statistic,” O’Sullivan writes. Similarly, Santhouse writes that “the number of diagnoses you can suffer from has increased more than fourfold in the past seventy years. Yet are we really less psychologically healthy than previous generations?”
Of course, Santhouse’s question is rhetorical. We cannot answer it, because we cannot actually know whether we are less psychologically healthy than previous generations. We cannot account for the different social context, for the culture of stigma and silence that will undoubtedly have influenced how many people received diagnoses in the past. Santhouse and O’Sullivan might be right—the increasing rate could be explained by the fact that normal distress is now overdiagnosed and over-medicalised. But is it not just as likely that the increase in rates of diagnoses is simply a corrective to the underdiagnosis that occurred in every generation prior to this one?
It is obvious that when a society becomes more progressive and receptive to marginalised people, it becomes more likely to communicate the reality of their lives truthfully. The number of people identifying as LGBT+ in the US has doubled over the past decade. One explanation for this is that twice as many people are LGBT+. Another is that an increasing number of people are willing to acknowledge the complexities of their sexualities, now that doing so is less socially proscribed.
Both authors overlook the suffering that can come from the underdiagnosis of mental health issues
This leads both authors to overlook the suffering that can come from the underdiagnosis of mental health issues. For instance, one condition Santhouse examines is premenstrual dysphoric disorder, or PMDD. He questions whether it should be included in the DSM-5, the official catalogue of mental health disorders. He is in two minds, but leans against its inclusion, out of concerns that it medicalises a normal experience. Well, let me fill him in on my own experience.
Before I was diagnosed with PMDD, I used to have a very abnormal, monthly experience. For five days, I would battle the urge to throw myself out of the window, or down the stairs, or to hang myself. And then, as quickly as this urge appeared, it would disappear. I had no idea what was happening, and I began to wonder whether I had a form of bipolar disorder.
In 2013, PMDD was included for the first time in the DSM-5. This paved the way for successful clinical trials, which in turn identified a medication regime that reduced patients’ distress. Now I take that medication, I no longer have urges to throw myself down the stairs. My life is considerably safer and happier as a result. My mad ancestors, by contrast, did not have this privilege of living at a time when the diagnosis of mental health problems is a normal part of life. They were not given the tools to understand themselves. Poor mental health was likely instrumental in the death of one of them.
Santhouse and O’Sullivan are probably correct that there is significant overdiagnosis of certain mental health conditions today—and that this probably causes problems, not only for the individual patients themselves, but for people with more severe manifestations of the same conditions who are denied due care and attention. But I still suspect that “overdiagnosis”—while excellent fodder for the culture wars—pales in comparison with the impact of the chronic underfunding and neglect of mental health services by successive governments. This, sadly, is something to which neither author makes much more than a passing reference.
