By David Tuller, DrPH
In 2020, I wrote a post about a paper, published by the journal Rheumatology Advances in Practice, called “Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.” The corresponding author was Melanie Sloan, a researcher in the Department of Public Health and Primary Care at Cambridge University.
The name was a play on the problematic construct of “medically unexplained symptoms” (MUS)—a shorthand for anything that clinicians cannot identify as a known pathophysiological disorder. Other common terms used to describe this category of illnesses include “somatic symptom disorder,” “persistent physical symptoms,” and “bodily distress syndrome,” among others. More recently, the term “functional disorders” appears to be eclipsing the use of MUS.
Previously, terms like “psychosomatic” and “psychogenic” were more often used, but health care professionals recognized that many patients found those terms dismissive and insulting—and rightly so. Notwithstanding changes in terminology, many in the medical field still generally regard these conditions as largely psychological or psychiatric in nature, with cognitive behavior therapy and related interventions often recommended as treatments.
In the 2020 study, Sloan and her co-investigators analyzed data from 233 lupus patients to an online questionnaire. From the start of symptoms, the mean time to obtaining a lupus diagnosis was reported to be almost seven years. Three out of four respondents said they had received at least one misdiagnosis along the way. According to the study, “mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future healthcare-seeking behaviour.”
Earlier this month, the journal Rheumatology published another study from Sloan and her colleagues. The new paper–“‘I still can’t forget those words’: mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses”–amplifies and extends some of the findings from the 2020 paper. The goal, according to the abstract, was “to improve understanding of persisting impacts of patient-reported psychosomatic and psychiatric misdiagnoses on patients with systemic autoimmune rheumatic diseases (SARDs).”
Not surprisingly, those persisting impacts turn out to be quite negative.
The research team investigated outcomes for more than 3,000 people diagnosed with SARDs from two separate cohorts surveyed in 2021 and 2022. More than 700 of these patients had received misdiagnoses they perceived to be psychosomatic and/or psychiatric in nature.
Of those, more than 80% reported that these misdiagnoses “had damaged their self-worth,” and 72% reported that “it still upset them.” Compared to those who did not receive such diagnoses, these patients had “significantly lower mental wellbeing” and higher levels of depression and anxiety. They were also less satisfied with “every aspect of medical care” and were more likely to under-report their symptoms.
Here are the takeaway messages:
*”Psychosomatic and psychiatric misdiagnoses are associated with persisting adverse impacts in multiple domains, including patient wellbeing.”
*”The persisting impacts of psychosomatic and psychiatric misdiagnoses need recognition, clinician-patient discussion, and support.”
*”Psychosomatic and psychiatric misdiagnoses may be an iatrogenic cause of mental health symptoms.”
**********
The NHS push to shunt MUS patients into psychological treatment
While patients everywhere have undoubtedly suffered from similar experiences, the issue has particular significance in the UK. In the last decade, National Health Service (NHS) England, which covers both England and Wales, has pushed hard to reduce demand for medical services by diverting patients diagnosed with MUS to a short-term course of cognitive behavior therapy (CBT). Among the key conditions targeted by the program were irritable bowel syndrome (IBS) and what the proponents preferred to call chronic fatigue syndrome (CFS).
Advocates of this program have routinely cited questionable statistics to make grandiose claims about its success rate. Initially dubbed Improving Access to Psychological Therapies, it has now been officially renamed “NHS Talking Therapies, for anxiety and depression.” (What’s with the unnecessary and distracting comma after “Therapies”? Doesn’t NHS England have a copy editor?) Among the biggest campaigners for this project has been Trudie Chalder, King’s College London’s mathematically and factually challenged professor of CBT.
Professor Chalder was also one of the lead investigators of the fraudulent PACE trial, which purported to prove that CBT and graded exercise therapy were curative treatments for CFS. Those claims were bogus and have been refuted, although Professor Chalder and her colleagues persist in their delusional insistence that PACE was a robust piece of research. In any event, Professor Chalder’s involvement in anything is enough to suggest that claims of success are likely to be nonsense, not to mention antithetical to standard scientific reasoning.
The new Rheumatology study included a qualitative component. Questionnaires included some open-ended questions, and some participants were also interviewed. The paper is studded with many compelling quotations that provide further insight into the psychological and practical toll of their experiences. Some examples:
“It’s so sad it took me developing non-repairable damage to my joints which showed on an MRI before any medical people truly believed me and my pain. I am trying to repair my trust but feel very much gaslighted”
“The long-term effects have been stark. I am too slow to seek medical help [including for a stroke] because I don’t want to be seen as a hypochondriac…I am trying to re-educate myself out of this. My current GP surgery have never said this and seem supportive, but from my 20s up until about 36 years old is a long stretch of being told you are making things up or imaging things.”
“Taught me to calibrate my trust carefully. To date, a specialist I see is my best medical ally…we are making a good team. Do I trust them? Sort of, but not blindly, never blindly”
The new study doesn’t mention whether any of the patients were shunted off to “NHS Talking Therapies, for anxiety and depression.” But it certainly wouldn’t be surprising if they had been, given the aggressive push to implement the program over the last decade or so. Training manuals for primary care clinicians encouraged them to diagnose patients presenting with unexplained symptoms as having some form of MUS and referring them immediately for psychological treatment. Even if such diagnoses are warranted in some cases, the certainty with which they have been and continue to be routinely dispensed is hard to justify.
The research has limitations. In particular, the authors note, “we had no means of confirming participant reports of past misdiagnoses, and were therefore reliant on their reports and views as to the nature of the perceived misdiagnosis.” It is always possible, they added, that the clinicians were expressing “diagnostic uncertainty” that patients might have interpreted as suggesting a psychosomatic or psychiatric cause. Nevertheless, according to the findings, the negative impacts are undeniable, whatever the clinicians’ intentions might be.
The paper makes a trenchant observation about the tendency to diagnose patients in these circumstances as having “health anxiety”—the kinder, gentler term now used for what was formerly called hypochondriasis. In reality, the authors explain, many patients are likely justifiably nervous or fearful when seeking health care services because of their previous experiences. As the authors write:
“We suggest that the frequent (mis)diagnosis of health anxiety for patients presenting with a multitude of initially unexplained symptoms may be better explained as an often persisting health system anxiety. This is where some patients remain in a perpetual state of – understandable and experience based-anxiety that current health systems will not have the knowledge base or resources to correctly diagnose and treat their symptoms. Our study suggests that this health system anxiety may in turn cause symptoms and healthcare behaviours that can perpetuate and seemingly validate the original misdiagnoses, yet are partially or wholly iatrogenic.”
Indeed. The amount of iatrogenic harm arising from the approach endorsed by Professor Chalder and her ilk, whether in the UK or elsewhere, is incalculable.
There should be far more studies like these in all specialisms to reveal the level of misdiagnosis and lengths of delay to correct diagnosis in people with physical illnesses, plus the considerable iatrogenic harms that arise from a psychosomatic model that has been drummed into doctors over the last decade or so in the UK. (Why aren’t the harms of this model being considered as a potential cause of the economic inactivity due to ill health that is blighting the UK economy? These SARDs patients were misdiagnosed with mental health/MUS/psychosomatic illness. They will presumably have added to the mental health figures, not the physical health figures, until they were correctly diagnosed.)
But there are 2 ways to measure MUS misdiagnosis rates – a) either by asking patients who’ve received their correct diagnosis if they were previously misdiagnosed (as in the first study mentioned above) and calculating the percentage who were… or b) by finding patients who’ve been previously diagnosed with MUS and determining what percentage of them were later diagnosed with an organic illness. Figures from the Nimnuan et al 2000 study (-https://academic.oup.com/qjmed/article-abstract/93/1/21/1588375?redirectedFrom=fulltext&login=false) tell us how these rates can be quite different. From the rates given in that Nimnuan et al study paper for method (a) and my own calculations from the figures given for method (b), the rheumatology MUS misdiagnosis rate via method (a) was 16% but via method (b) was a whopping 40%. For dental it was 25% (a) and around 42% (b), for the chest clinic it was 4.4% (a) vs around 22% (b), for cardiology 31.7% (a) vs around 38% (b). So for those specialisms the rate turned out higher with method (b). But for gastroenterology and neurology it was lower: for gastroenterology 18.2% (a) vs around 17% (b) and for neurology 21.1% (a) vs 19% (b). [Weirdly, gynaecology had 0% rates for both.]
What I’m saying is that finding that a large percentage of patients with organic illness had been previously misdiagnosed with mental health problems/MUS (with potentially harmful delays to correct diagnosis) of course demonstrates that a problem exists, and can point to there being a sizeable problem with psychosomatic misdiagnoses, but it does not tell us the extent of the problem. If doctors are led to believe that around a half of their outpatient referrals have MUS and that continuing to investigate these patients can cause them iatrogenic harm, there is the potential for a self-fulfilling prophecy caused by under under-investigation of symptoms. Let’s imagine that they diagnose 30% or so of their outpatients with MUS/mental health problems/some sort of psychosomatic label, so don’t quite make the 50% or so that they may expect to see. If 40% of those patients are misdiagnosed that’s potentially 12% of all outpatient referrals being misdiagnosed. And with perhaps upwards of 19 million outpatients referrals per year in the UK alone, that could mean over 2 million MUS misdiagnoses per year. Even if the MUS (method b) misdaginosis rate was half that (say 20%) , there’d still be potentially a million or so patients misdiagnosed per year. These patients could (like the lupus patients) also be waiting many years to receive the correct diagnosis, all the while being pushed towards/into economic inactivity. But we don’t know the extent of this problem because, as far as I know, nobody has bothered to follow up all these patients labelled with MUS over enough years for their misdiagnoses to show up.
It’s so good to see that the iatrogenic harm of the psychosomatic model is at last being recognized. I believe that the model has been painted as relatively low-risk while doctors have been persuaded that to further investigate patients is to risk causing them considerable iatrogenic harm. I’m not sure what that iatrogenic harm is supposed to be – I’ve not seen it spelled out. In my experience, doctors don’t bother to ask or check how much radiation from X-rays/CT scans patients may have already received before they order another one. They could talk through such risks of iatrogenic harm with their patients, but they don’t. But they’re seemingly happy to risk significant physical and mental harms to their patients by imposing a psychosomatic diagnosis/label on them.
After repeated gaslighing over a period of decades, every time I read the word ‘perceived’ it feels like more patient-blaming – even when the article is about about the harm of misdiagnosis.
Perhaps if patients could easily access the diagnostic clinical coding and any other labels applied to their cases, then they could know the extent to which they’ve been misdiagnosed and gaslighted by their doctors and could pass that information on to responsible researchers investigating misdiagnosis and its harms? (Could they do this under current rules, I wonder?) There’d be no ‘perceived’ about it if patients had proof that they’d been coded with ‘somatic symptom disorder’ or similar when they were simply reporting known symptoms of their organic disease.
Adding to my previous comment:
I appreciate that accessing clinical codes probably wouldn’t help people with ‘contested diseases’, but the more the psychosomatic model is shown to be harmful in relation to established uncontested diseases, the better for the ‘contested diseases’ patients, I think. It’s clearly not just people with ‘contested diseases’ who are now suffering the consequences of the psychosomatic MUS model. UK doctors have been taught that on average around half of outpatient referrals across specialties will likely have MUS so I imagine that there’s considerable potential for misdiagnosis there. There’s evidence pointing to some doctors believing, from their own experience, that around a third of neurology referrals have a ‘functional’/MUS problem, so that might suggest that the trumpeted prevalence rate for MUS is having an effect. I’d say that seeking or hoping to utilize a MUS/’functional’ strategy to reduce appointments, investigations and length of stay by diverting patients to psychiatric care or psychotherapy is likely to have disastrous consequences across the board. It wouldn’t surprise me if harms of a cost-cutting MUS strategy were now showing up quite clearly in SARDs – uncontested diseases that predominantly affect women. Teaching doctors that MUS affects far more women than men is almost bound to set women up as the fall-gals for that strategy, isn’t it? Of course, that doesn’t mean that men won’t come a cropper too, just that they’re probably a little less likely to.
To my mind, all UK ME sufferers who are able to, (or their carers/supportive family members) should be writing to their MPs and asking them to explain why economic inactivity due to ill health in the UK started rising NOT with the pandemic in 2020 but in 2014, and why it has risen considerably more in women than in men since (see here, figure 6 -https://www.bankofengland.co.uk/speech/2022/may/michael-saunders-speech-at-the-resolution-foundation-event). One explanation for both the timing of the rise and it affecting more women than men could be a determined roll-out of a MUS/psychosomatic model/strategy to doctors in the NHS around that time with them being taught that MUS affects women to a greater extent than men. Other explanations shouldn’t be ruled out, but any suggestions should be able to explain a) why women’s health has apparently declined far more than men’s with their healthcare needs no longer being adequately met, b) why economic inactivity due to ill health in men and women had previously fallen in lockstep but has risen much faster in women and c) what changed around 2014 to cause that happen. Another question to ask might be – is the Women and Equalities Committee -https://committees.parliament.uk/committee/328/women-and-equalities-committee/ looking into this enigma around health inequality? If it isn’t, I’d suggest that it should be.