The wonderfully erudite William Crawley featured Dr Suzanne O’Sullivan recently on his BBC Talkback programme. Susanne, a doctor working in the NHS, is author of The Age of Diagnosis which is currently getting considerable attention and is available on BBC Sounds as a book of the week. The response was such that Talkback continued the theme the next day where a panel of local experts considering feedback from listeners discussed if we had a problem of overdiagnosis in N. Ireland. It was a fascinating discussion masterfully moderated by the Talkback host, you can listen back here.
Suzanne O’Sullivan makes a simple point; society is in a crisis of overdiagnosis which is not serving much purpose; merely absorbing resources while leaving patients stranded in a holding position from where they have difficulty moving on. This counter-intuitive view is an important insight from someone who has first hand experience of how medicine and our health service works. She is powerfully articulating a case that what is being done in medicine, particularly in providing medical diagnoses for what might be variation in the normal human experience, is clear evidence of overdiagnosis and is often not to the benefit of the patients involved.
Once a genuine patient cohort is defined within a diagnostic framework, very quickly diagnostic creep pulls in less serious, milder versions of the disease and more patients end up being labelled and possibly treated which itself brings risks. Suzanne O’Sullivan is a passionate, vocational and professional doctor and she cares deeply for her patients but she is sensitive to what she feels is a movement towards the pathologizing of normality through overdiagnosis.
She’s not the first to make this case. Ivan Illich, philosopher, doctor-baiter and one time Jesuit priest, was thought to be barking-mad when he made this claim in the 1970s in the Lancet. He suggested a conspiracy by the medical profession and the drug industry to bring about the “medicalisation of society” for the sole purpose of profit. Drugs and other medical technologies, he was convinced, removed personal responsibility for suffering and created dependence on health professionals resulting, ironically, in worse health. Doctors with their unique body of knowledge claim they know better than the rest of us so, the contract is; we hand over to them responsibility for our health. For many, personal health becomes the GP’s problem. Medical ethics would suggest this is wrong but even when patient autonomy is enshrined in our Health Service the majority of us look to our doctors for the answers.
Today Illich, who died in 2002, is no longer seen as just another vulgar Marxist but someone whose views, while still perhaps extreme, hold merit and might explain the lack of public health gain and failure of national health services witnessed in recent years.
More recent medicals writers who continue on this theme are less critical of doctors and more critical of wider societal changes as a cause. They rightly see patients and their families, as well as the advocacy from patient bodies and politics more generally, as being equally responsible. Writers include doctor and journalist James Le Fanu who makes the case in his book Too Many Pills and GP Margaret McCartney who makes a similar case in her book The Patient Paradox; Why sexed-up medicine is bad for your health.
Unfortunately, Talkback focused only on autism as an example of over-diagnosis but it’s a good local example. In N. Ireland, we have 1 in 20 children with an autism diagnosis, whereas in the rest of the UK, the rate is 1 in 100. Why have we 5 times more children with autism? Over diagnosis argues Dr O’Sullivan. Not so, was largely the Talkback panel response.
The passionate defence of the local excessive over-diagnosis of autistic children was impressive. There was an attempt by the panel to justify our unique situation; as failure in our schools, worse levels of poverty, the Troubles even. One obnoxious caller intimated that the increased prevalence was down to too much interbreeding. That aside, the panel resisted agreement with Dr O’Sullivan. It’s not too difficult to see why there is a problem of overdiagnosis when it is so skillfully defended by the very people who should be seeing it for what it is and call it out. Calling it out would better serve the genuine children with autism, and the many genuine patients with other conditions where overdiagnosis is so common and who really do need help where resources are limited. That is the fundamental point of Dr O’Sullivan’s argument.