PatientSafetyLearning Team

“The first duty of any health system is to do no harm to those in its care; but I am sorry to say that in too many cases concerning Primodos, sodium valproate and pelvic mesh, our system has failed in its responsibilities. We met with people, more often than not women, whose worlds have been turned upside down… by the pain, anguish and guilt they feel.” Those were the words of Baroness Julia Cumberlege, Chair of the Independent Medicines and Medical Devices Safety Review, as the long-awaited Cumberlege Review was published last month. The report, First Do No Harm, addresses three particularly horrifying women’s health scandals, and describes “a culture of dismissive and arrogant attitudes” where patients’ suffering was frequently dismissed as “women’s issues” or “all in your head”. But the scandals surrounding Primodos, sodium valproate and pelvic mesh are not simply isolated cases of bad practice, and nor do they exist in a vacuum; they’re a symptom of the deeply ingrained conscious and unconscious biases that are built into our medical system. As a freelance journalist specialising in women’s health, I noticed several years ago that there were patterns emerging in much of what I was writing about. Whether I was writing specifically about gynaecological health, or about any other aspect of women’s physical and mental health, certain words and phrases came up a lot, largely in relation to their interactions with healthcare. “My doctor didn’t believe me.” “Dismissed as all in my head.” “Misdiagnosed.” “Drama queen.” “Hypochondriac.” “Over-reacting.” “Just a normal part of being a woman.” And, heartbreakingly: “I thought I was going mad.” Once you start talking to women about this, you realise quite how common these dismissive attitudes are. Women told me about waiting years and years for proper diagnoses and treatments. Many more told me that medical gaslighting had left them feeling isolated and questioning their own sanity, wondering if maybe their pain really was in their head after all. Beyond the overwhelming quantity of anecdotal evidence, there’s also no shortage of research highlighting what’s been dubbed ‘the gender pain gap.’ We know, for example, that women are kept waiting longer in A&E and are less likely than men to be given effective painkillers – but more likely to be given sedatives or anti-anxiety medication. Women also receive worse quality care than men when having a heart attack, and are more likely to die from one as a result. We also know that other biases, including racism, ageism and homophobia, play a part in the way women are treated – like the shocking fact that black women are five times more likely than white women to die during pregnancy and childbirth. In October 2018, I launched Hysterical Women, a feminist health blog dedicated to exploring the biases and dismissive attitudes in women’s healthcare. It’s a platform to curate women’s stories and experiences, as well as engage with other writers, patient advocacy groups and campaigns, clinicians and policy makers about the issues at play. Hysterical Women isn’t anti-clinicians or anti-NHS – for whom I have nothing but the utmost respect and gratitude – although many of the stories I feature are critical of individual attitudes and behaviours. For me, it’s much more about highlighting the deeply ingrained, systemic, cultural problems that run through the entire medical system – from lack of research and funding for women’s health issues, through to medical education, time and resource pressures, and the wide-ranging effects of working in a system that, by and large, views the white male body as the default. Hysterical Women takes its name from ‘hysteria’, a catch-all diagnosis used from 1900 BC until 1980 AD, which has its origins in the idea that pretty much any symptom a woman experienced was caused by the wanderings of her pesky womb. From Hippocrates to Freud, the history of hysteria provides a fascinating insight into the ways women’s mental and physical health have been misunderstood over thousands of years. It’s a history that continues to loom large over the medical profession; a persistent unconscious bias whose whispers can still be heard in phrases highlighted by the Cumberlege Review, like “women’s issues” and “all in your head”. But Hysterical Women is about much more than wombs – in recognition both of the fact that not every woman has one, and that women’s health consists of far more than just periods, reproduction and the menopause. Stories on the blog encompass all areas of health – from acute physical issues like heart attacks, appendicitis, pneumonia and knee injuries, to chronic problems like fibromyalgia, myalgic encephalomyelitis (ME), postural orthostatic tachycardia syndrome (PoTS) and long-term mental illness. It also, of course, covers no end of gynaecological and hormonal issues, but in many ways I’m most fascinated by the gender bias I see in areas of healthcare that have absolutely nothing to do with uteruses, ovaries or vaginas. It all just goes to show how much bigger and broader a problem this is. Of course, doctors, nurses and other healthcare professionals are human, and medicine itself is neither static nor infallible; mistakes and misdiagnoses are made, things get missed, and our knowledge and understanding is constantly evolving. But in a system founded on the principle of “do no harm”, the harm caused by any single one of these individual experiences should be both a tragedy and a learning experience. Collectively, cumulatively, they add up to a devastating cost – both in terms of the quality of life impact for countless women, but also the long-term healthcare cost of being dismissed instead of treated at the earliest opportunity. One woman I interviewed several years ago suffered permanent bladder and bowel damage thanks to the ten-year delay in diagnosing and treating her endometriosis. Other women describe the mistrust and alienation they now feel, which makes them reluctant to seek medical advice or attend routine screening appointments in future, or even prompts them to seek out (potentially dangerous, often untested and unregulated) alternative treatments. At any given time, you only have to skim through the most recent few posts on the blog to understand what a false economy this is. As with all systemic problems, there is no simple, overnight fix to gender bias in medicine. But it begins with listening to women[1] (as NICE specifically advised in its guidance on endometriosis in 2017), acknowledging them as the experts in their own bodies, and taking a more collaborative approach to patient care. Many brilliant clinicians are already working hard to address gender and other inequalities, both in their own practice and within their professional bodies, but there’s still a lot of work to be done. Hysterical Women welcome’s stories from all women (both cis and trans), as well as any trans or non-binary AFAB individuals who have been dismissed, disbelieved or not taken seriously in healthcare settings. For more information on how to contribute, please visit the Hysterical Women blog site. Reference [1] Bosely, S, 2018. The Guardian. 'Listen to women': UK doctors issued with first guidance on endometriosis https://www.theguardian.com/society/2017/sep/06/listen-to-women-uk-doctors-issued-with-first-guidance-on-endometriosis