Health screening is good, right? We’re encouraged to get ourselves checked for everything from high blood pressure to cancers, various. But what if some of that screening does more harm than good? Do symptoms always need a label? And what do those labels do to the lives of those who have them?
Dr Suzanne O’Sullivan is a consultant at The National Hospital for Neurology and Neurosurgery in London, where she specialises in epilepsy and functional neurological disorders. In her new book The Age of Diagnosis, she challenges the idea that a diagnosis is always better than no diagnosis. It’s a controversial view, and one that she is here at the Edinburgh International Book Festival to discuss with Dr Gavin Francis.
What, asks Gavin, inspired Suzanne to write the book?
Having been in practice since 1991, Suzanne has seen a huge rise in diagnoses, especially among younger people, many of whom have a whole collection of them. Doctors, she says, are all trying not to miss things, but people are acquiring more and more labels without getting any better. Is this good medicine?
She’s quick to point out that her intention is not to tell people there’s ‘nothing wrong with them’; she has no time for the view, often loudly espoused by some of the older generation, that young people should just snap out of it and stop being so pathetic. Her issue is with the over-medicalising of problems – problems that are nonetheless real. A medical diagnosis can affect someone’s behaviour, health, career and even their insurance. They will think of themselves differently, may well accept unnecessary limitations, and will start to act like a sick person, even when they’re not.
Suzanne gives the example of Huntingdon’s disease, for which there is now a test. Children of affected parents have a 50% chance of developing it themselves. They are offered the test, but after genetic counselling. 90% of them refuse it; they know the effects of that label. Huntingdon’s is not curable; they decide to live their lives free of a diagnosis unless and until actual symptoms surface. Their rationale is that, were they to get a positive result, they would inevitably act and feel like someone with the disease, even if they were asymptomatic for years.
Would Suzanne, asks Gavin, like a full body MRI (magnetic resonance imaging) scan for her birthday? No she most certainly would not! But she acknowledges that private providers are making a lot of money out of them (prices start at around £700 if you’re interested.)
What MRIs have shown us is that we are all different on the inside. We reluctantly accept that age and other factors will change us on the outside, but we still cling to the idea that internally we’re all exactly the same, so any deviation from that sameness becomes a cause for concern. Many neurologists, says Suzanne, only have an MRI scan themselves if they know exactly what it’s for, and have considered how the results may affect their lives,
Do enough tests and you will find things.
Suzanne emphasises that she doesn’t want to put people off screening, but they must be given enough information to make informed choices. For example, she says, if 2,000 women are screened for breast cancer, one life will be saved – but ten women will be ‘overtreated’.
Is there, Gavin asks, a better way? Suzanne thinks only high-risk people should be screened, though again she stresses that symptomatic cancer is an entirely different thing and needs urgent attention. If abnormal cells were found in her own breast, she would request 3-monthly screening to monitor them, although she totally defends the right of any woman in the same situation to have immediate surgery if she wants it.
Tests don’t make diagnoses, medical professionals do.
The important thing, Suzanne says, is the story behind the symptoms, and no amount of screening can tell you that. Only medical professionals can determine what is important to an individual, and they find that out by listening. People tend to feel validated by scans, but they gain much more from talking to a doctor who can evaluate what the results of a test would mean to them. She’d like to see a return to ‘clinical acumen’, with tests used to confirm a doctor’s suspicion, not create them.
Suzanne is particularly concerned about testing for hypertension, diabetes, autism and ADHD. If you are severely affected by any of these, any negative effects of testing will be far outweighed by the access a positive result will give you to treatment and support. Borderline cases are, however, quite different; people stand to gain very little from treatment, but a diagnosis can bring with it stigma and a changed relationship with one’s own body.
The medical profession, says Suzanne, has been aware of the negative effects of over-diagnosis for many years, but it still keeps developing more and more screening programmes. Statistically, screening does not prolong lives,
‘We are rubbish at stepping back and asking if this is actually working; we don’t reevaluate.’
Gavin mentions the PSA test for prostate cancer, available to men over 60. There is no national screening programme for the disease because the over-diagnosis rate is so high, and public screening programmes rarely reach the most vulnerable.
Cultural differences are also important, though often misinterpreted by public health professionals. Westernised, rich, white, educated countries, says Suzanne, always think they know best, but other societies often have other ways of treating sickness, and these can be surprisingly effective. In Nicaragua, ‘greasy sickness’ is seen as a form of satanic possession; people develop it when they are in crisis. It’s treated locally with herbs and prayers, a community response, and people recover. Those who are instead sent away to psychiatric units get worse.
You’ve got to have a recovery narrative to get better.
In Western treatment of autism and ADHD, Suzanne says, there is no recovery narrative. If we instead saw these conditions as related to our lives, there might be things we could change to improve matters. Diagnosis, she says, ‘allows people to forgive themselves.’ ADHD medications offer only a brief improvement; why are we medicating behaviour when no long term studies have shown this to be helpful, or even proved that it isn’t harmful?
Asked about Long Covid, Suzanne’s perhaps controversial answer is that it is very often psychosomatic. And no, by this she does not mean that it is trivial or made up. The pandemic was, she says, a perfect storm; people were already hugely stressed; they were told that millions would be left with chronic disabilities, and were encouraged to focus entirely on their own bodies. Symptoms inevitably appeared; we simply could not stop them. Even at the start of the Covid pandemic, when Suzanne and her colleagues saw the news from Italy and were scared, she herself regularly had symptoms, but every test was negative. It’s the way our brains work, she says; our bodies are constantly awash with symptoms – as soon as we start to think about any particular bit of ourselves, we’ll notice things. We can’t help it; even doctors do it.
Suzanne resists the call to blame Big Pharma for all of this. While pharmaceutical companies may prey on us at our most vulnerable, our culture has taught us that we should always be given answers to questions that often don’t have any, that we should have perfection when it’s not always possible. Aging is unacceptable. We like to leave the surgery with a prescription.
We don’t understand genetic variance as much as we make out we do. We don’t know who has a genetic disease but will be fine – or why. It may be that such people have a protective gene that stops the disease developing, or that the people who do get ill lack that gene. The Biobank collections have shown us that not all people with a particular gene will go on to develop the disease.
Something else we don’t understand, Suzanne says (and now she’s referring to us as a society) is psychosomatic illnesses. No matter how real the symptoms are, we don’t rate or respect anything that has a psychosomatic cause; at best we see such illnesses as far less important than physical diseases. A psychosomatic diagnosis can cost people friendships and cause problems with their employer. There are far fewer services available to help them, and their illnesses are far harder to treat,
‘People feel stabbed in the heart if I tell them they don’t have epilepsy, and their seizures are psychosomatic.’
There is a need, Suzanne concludes, for far more joined-up treatment. Multiple diagnoses, often for the same symptoms, should be reviewed by well informed generalists. As a consultant, she is not able to overrule a colleague; we need specialists but there’s also a desperate need for oversight.
This was a fascinating and very well attended session; the level of interest it attracted makes it clear that book festival-goers want more of these informative and thought provoking events.
The Age of Diagnosis by Suzanne O’Sullivan is published by Hodder Press.
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