Search the hub

In this interview, we speak to sociologist Dr Marieke Bigg about why she decided to write her debut non-fiction This won’t hurt: How medicine fails women. Marieke discusses how societal ideas about the female body have restricted the healthcare system’s approach to women’s health and describes the impact this has had on health outcomes. She also highlights areas where the health system is reframing its approach by listening to the needs of women and describes how simple changes, such as allowing women to carry out their own cervical screening at home, can make a big difference. Hi Marieke! Can you tell us a bit about yourself? My name is Marieke Bigg and I’m an academic. I did my PhD in the sociology of reproductive technologies, looking at the way that new technologies like IVF changed the way humans reproduce and the implications that has for society. Since then I’ve started writing non-fiction. My debut book is called This won’t hurt and it’s about all the ways in which medicine is not gender-neutral—I look at research, how patients are treated, policy and funding. In the book, I show how the field of medicine has formed around a male default that excludes women. Why did you decide to write This won't hurt? I had the idea for This won’t hurt after a jarring personal experience with a doctor. I went to see a gynaecologist and shared some symptoms that he was unable to explain. But the main issue for me was that he said some quite problematic things that I couldn’t really make sense of in the moment. Sometimes these encounters feel quite insidious, they take you by surprise and you’re not always sure how to respond. But because I was doing my PhD at the time, I had formed a kind of sociological ‘toolkit’ for understanding sexism. It helped me reflect on what had happened and make sense of my own experience, and I realised how useful that sociological perspective can be when it comes to medicine. I wanted to share what I had found with other women as a way to help tackle the internalised stigma and shame that many carry when they feel that their bodies aren’t ‘normal’ or acting in a way that’s expected. Understanding where these ideas come from helps shift the feeling of blame away from individual women. As a society, what underlying views do we have about women's health, and how does this affect how certain conditions are approached by the healthcare system? There are two key ideas attached to the female body that I talk about in the book—the first is the idea of the female body as a baby-making vessel. There’s this very persistent idea that the only difference between male and female bodies is the reproductive system, and that a woman is defined by her childbearing capacity. Often when we talk about women’s health, we’re referring to obs and gynae, but we need to think about women’s health in much broader terms. This idea can also foster unhelpful complacency around the process of childbearing, for example, there’s this view that any pain women feel is just a natural part of being a woman. This has led to countless reported cases of women not receiving the pain medication they need during labour. The second idea is the idea that women have to be ‘sexy’. For many women, there is an internalised stigma around problems that are perceived to be unsexy, and that can make them feel uncomfortable to go to the doctor. Doctors also may not have a language to discuss these issues in a way that is comfortable for women. There’s a huge cluster of so-called ‘invisible diseases’ that affect women, that aren’t fatal but have a big impact on quality of life. For example, prolapse is a debilitating issue that causes a lot of discomfort, and endometriosis has come to light as a condition that requires much more research and attention. Gender inequality in medicine is really serious—there are lives at stake and it really matters that we understand and inform people about how women’s diseases present themselves. I look at an example in the book of how bias can affect how we view women’s symptoms. When men and women put the same symptoms into a diagnostic app, the algorithm told men to go to A&E in case they were having a heart attack. It told women they were suffering from anxiety. What impact would broadening our idea of women’s health have on patient safety? Researching women’s bodies across the different fields of medicine will have a big impact on patient safety. Cardiology is a good example, as women’s heart attacks can present differently to mens. There’s a lack of awareness amongst both women and medical professionals about this. A lot of the symptoms of a heart attack in women are similar to those associated with menopause, so many women have their symptoms—such as hot flashes and pain between the shoulder blades—dismissed. It’s also really important to establish the links between different fields to bring to light female-specific symptoms and causes of disease. There have been several pioneering cardiologists who have worked on the link between gynaecology and cardiology, including Dr Angela Maas, who researches the link between female hormones and the heart. Medical specialties have formed over centuries around the questions that matter to the male body—in order to improve outcomes for women, we need to put them at the centre of medicine, which means reshaping those fields. How can listening to women and taking on their views have a positive impact on patient safety? Cervical screening is a great example. It’s a relatively simple intervention that has the potential to prevent something like 70% of cervical cancer deaths. Although it’s a crucial test, a third of women don’t attend their screenings. Research into the reasons for this showed that many women don’t feel comfortable to go to the doctor to have the procedure. There’s a really simple solution to that which is being trialled at the moment, sending test kits to women’s houses. It’s a very straightforward intervention that has the potential to save many lives, and it shows that listening to women can help healthcare address their needs and improve safety in quite simple ways. What changes do policy makers need to make to their approach to women’s health? In the book, I list some quite cutting-edge research, but there are also simple bureaucratic changes that can make a huge impact. I talk about efforts in the UK to shift to a life-course approach to women’s health, which is part of that movement away from the idea of the female body as a baby-carrying vessel. When the health system understands that a woman’s health matters across her lifespan, it can identify predictable moments in her life when it can intervene to prevent health complications. Part of this is acknowledging that when a woman has been pregnant, it can have a significant long-term impact on her body. Pregnancy unmasks different vulnerabilities—for example, if you have heart issues while pregnant, you are more likely to develop heart issues later on. It’s about thinking about women’s health in a different frame, and that can change the way that we approach healthcare in sometimes quite straightforward ways. What advice would you give to healthcare professionals as they speak to women seeking help and treatment? Much of the work needs to be done before meeting with patients—it’s about being aware of research in areas that matter to women’s health. Looking outside of traditional medical academia and reading sociological studies on women’s views will further help healthcare professionals understand what’s important to their patients. Awareness of the role that biases have played in research and medical practice is also key. All this takes an investment of time, but doing due diligence to understand the social dimensions of healthcare will enable better outcomes for women. Continually questioning the assumptions you are making as a healthcare professional is a difficult challenge, but when it comes to meeting women in a consultation, doctors should take time to listen so that they really understand the problem being presented. Sometimes you will need to think outside the box about less obvious or instinctive solutions. Angela Maas was motivated to embark on her research as she found she was unable to answer her patients’ questions; she felt an ethical imperative to investigate the link between cardiology and gynaecology. When doctors take the time to really listen to their patients, they might be struck by their own blind spots or gaps in their education. It’s an uncomfortable process, but it’s crucial. Related reading Blog - The pain gap: Gender bias in endometriosis pain management (7 September 2022) “Brave men” and “emotional women”: A theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain (February 2018) Medicines, research and female hormones: a dangerous knowledge gap Patient Safety Learning’s Top picks: Women's health inequity

Join us for a series of free online webinars brought to you by Bolt Burdon Kemp’s specialist Women’s Health Team to help raise awareness of racial inequality in maternal healthcare. Hear from leaders and influencers in maternal healthcare, focusing on changes required across the profession to improve the level of care provided to those who identify as ethnic minority mothers and birthing people. We have a fabulous line up of expert speakers and each webinar will be followed by a Q&A session. Come and join us for a chance to contribute to the discussion and share experiences. This webinar will be led by Natasha Smith, Founder of Eden’s Script and Benash Nazmeen, Practising Midwife. To register, please email [email protected] - you will be sent a Zoom invite with joining details nearer the time.

Join us for a series of free online webinars brought to you by Bolt Burdon Kemp’s specialist Women’s Health Team to help raise awareness of racial inequality in maternal healthcare. Hear from leaders and influencers in maternal healthcare, focusing on changes required across the profession to improve the level of care provided to those who identify as ethnic minority mothers and birthing people. We have a fabulous line up of expert speakers and each webinar will be followed by a Q&A session. Come and join us for a chance to contribute to the discussion and share experiences. This webinar will be led by Mars Lord, Doula Educator and Birth Activist. To register, please email [email protected] - you will be sent a Zoom invite with joining details nearer the time.

Join us for a series of free online webinars brought to you by Bolt Burdon Kemp’s specialist Women’s Health Team to help raise awareness of racial inequality in maternal healthcare. Hear from leaders and influencers in maternal healthcare, focusing on changes required across the profession to improve the level of care provided to those who identify as ethnic minority mothers and birthing people. We have a fabulous line up of expert speakers and each webinar will be followed by a Q&A session. Come and join us for a chance to contribute to the discussion and share experiences. This webinar will be led by Dr Christine Ekechi, Consultant Obstetrician and Gynaecologist and Co-chair of the Race Equality Taskforce at the Royal College of Obstetricians and Gynaecologists and spokesperson for racial equality. To register, please email [email protected] - you will be sent a Zoom invite with joining details nearer the time.

North East London Training Hubs (CEPNs) are delighted to invite all local health and care colleagues to this virtual session on unconscious bias. Behavioural and data scientist Dr Pragya Agarwal will present this informative and actionable masterclass that will demystify the meaning of different unconscious biases and supply you with the tools to unlearn yours. A choice of 3 dates are being offered. You will also have the opportunity to attend a smaller interactive facilitated workshops on the subject including looking at case studies and role play. These sessions will be held in February and March 2021 Dr Pragya Agarwal is an award-winning behavioural scientist, a freelance journalist and author. As a Senior Academic in US and UK universities, she has held the prestigious Leverhulme Fellowship, following a PhD from the University of Nottingham. Her publications are on reading lists of leading academic courses across the world. A passionate campaigner for women’s rights, and two-time TEDx speaker herself, Pragya organised the first ever TEDxWoman event in the north of the UK. She regularly appears on panels and has given keynotes around the world. Register

Today, Patient Safety Learning stands with others around the world to celebrate International Women’s Day 2021. In light of this year’s campaign theme “choose to challenge” we are raising awareness of some of the ways in which male bias can negatively impact on patient safety. Drawing on case studies and quantitative research, this blog focuses on three key areas: Design – using examples to illustrate how male-centric design of equipment and medical devices affects patient safety. Data – discussing how data which does not account for differences between the sexes impacts on patient safety. Dismissal – considering the recurring theme from personal testimonials, and healthcare scandals in recent years, that women’s voices and patient safety concerns are being ignored or dismissed. We will reflect on the key patient safety issues and inequalities in each of these areas and offer our perspective on what needs to happen moving forward to prevent future avoidable harm. Design PPE The COVID-19 pandemic has shone a spotlight on male bias in design within healthcare in relation to Personal Protective Equipment (PPE). It became clear that respiratory PPE was leaving female workers at greater risk of exposure to the virus, discomfort, and interference with their ability to work.[1] This is not a new discovery, with a 2016 survey highlighting that only 3/10 women in the UK had PPE that was designed for the female frame.[2] This seems particularly inexcusable in the NHS where three quarters of the workforce are female.[3] These design issues have serious patient safety implications for infection prevention and control. Female staff are potentially at greater risk of infection, threatening both their personal health and a further depletion of an already stretched workforce, which would inevitably impact on the delivery of safe care. Providing staff with ill-fitting masks also leaves patients vulnerable to the possibility that asymptomatic staff could pass the virus to them, risking an increase in COVID-19 hospital acquired infections. Surgical equipment Another area of concern is around the design of surgical instruments, specifically those that have been developed for larger hands and can often be less easy to hold and operate for female staff.[4] Differences in thumb size or grip strength can make the user-experience extremely variable, with smaller digits left floating in handle holes and many female staff needing to sustain greater levels of force to use the equipment. Patient Safety Learning believe it is crucial that patient safety is considered as a core part of the design and development of medical equipment and devices. These need to be safe in use and account for the people who will be using them. Although humans are remarkably good at adjusting, patients would clearly benefit from being operated on by surgeons whose tools make it easier, rather than harder, to do their work. Medical devices In recent years we have become increasing aware of the serious patient safety concerns associated with a range of medical devices predominantly used for women, such as pelvic mesh. But there is also evidence that medical devices which are otherwise seen as gender neutral, such as hip implants, can pose greater risks to female patients.[5] One hip implant (the DePuy articular surface replacement) has left women around the world with serious complications, including inflammation, painful growths, dislocations, and metal toxicity. These side effects have been associated with a lack of consideration for differences between the sexes in relation to hip movement, with such issues being far less prevalent in male patients.[6] What needs to happen? Patient Safety Learning believes: The diversity of user-experience needs to be valued and prioritised at every stage of the design process of medical equipment and devices to ensure that patient safety is not compromised. Further research is needed to understand the extent to which sex-biased design exists within healthcare and poses a risk to patient safety. Where existing evidence highlights patient safety risks of biased design, clear plans and timelines need to be set out to address unresolved issues. This is an issue that needs to be prioritised by industry and regulators such as the Medicines and Healthcare products Regulatory Agency (MRHA). Data Data gathered in medical studies is often not collated in a way whereby differences between the sexes can be analysed and understood.[7] This may be partly due to the fact that many trials include very low percentages of female cells or subjects (whether human or animal), or none at all,[8][9] making it impossible to draw any sex-specific conclusions.[10] This tendency to exclude females has even been evident in studies based on conditions that are more common in, or only relevant to, women.[11] And yet, the results are seen as valid for both sexes. Tested on males, safe for all? Research shows sex differences in our organ systems, tissues, and cells.[12] [13] There are differences in the way male and female hearts function,[14] our lung capacity,[15] metabolic reactions[16] and the way our hormones influence medication.[17] The way men and women are affected by common diseases also varies in severity, prevalence, and nature[18]; and they can react differently to drugs and treatments. Critically for the safety of such treatments, this could mean an increased or decreased likelihood of survival. Where drugs have been tested and deemed to be safe, but the data has not been disaggregated by sex and the participants have predominantly or solely been male, we are unable to truly understand how they affect the female body. Even where females have been excluded from early stages of trials (e.g. with male mice samples) but included at later stages, there is a risk that treatments which may be effective for women have already been ruled out due to their ineffectiveness on the male mice. As Caroline Criado Perez puts it in Invisible Women: Exposing Data Bias in a World Designed for Men: “The specific effect on women of a huge number of existing medications is simply unknown.”[19] Life-saving interventions missed: A case study The importance of sex disaggregated data has been highlighted by the trials of the cardiac resynchronisation therapy device (CRT-D), which is essentially a pacemaker. Based on data taken from studies, the pacemakers were previously deemed to be beneficial for anyone whose heart takes 150 milliseconds or longer to complete a full electrical wave. Guidelines reflected this, meaning anyone with a lower score would not be offered a CRT-D implant. The problem with this approach however was that the trials only included 20% of female participants, but when data from several trials was combined and analysed it became clear that women reacted differently to the device. Female participants with a lower reading of 130-49 milliseconds, who had had the pacemaker fitted, were found to have a 76% reduction in heart failure or death.[20] Had the data been analysed by sex from the start, this evidence could have been used to expand the use of CRT-D implants and improve outcomes for many women. What needs to happen? Patient Safety Learning believes that: Medical studies should be representative of females, and where they are not included, the rationale should be clearly set out, evidenced and undergo appropriate scrutiny. Where males and females are included in medical studies, the data should be disaggregated by sex so that differences in the effectiveness and risks associated with medical interventions and treatments are available for analysis. Where female sample sizes are not representative, this should be made clear when reporting the limitations of the study. Dismissal Labelled anxious, depressed or irrational Studies and testimonials indicate that women are more likely to have their physical symptoms attributed to psychological issues by clinicians,[21] [22] [23] [24] with many feeling that clinicians had dismissed them as hysterical.[25] This can manifest itself in various ways: One study showed that, of the subjects who had not reported feeling depressed, women were twice as likely as men to be prescribed antidepressants.[26] Women who go to A&E are also less likely than men to be given adequate pain relief and more likely to be given anti-anxiety drugs.[27] Women with chronic pain are more likely to be wrongly diagnosed with mental health conditions.[28] These responses can lead to delays in diagnosis and treatment for underlying physical conditions, leaving them at greater risk of poor outcomes or premature death. Criado Perez tells the story of a young woman who spent a decade seeking help for atypical bowel movements and was told that she needed to be less anxious and less stressed, that it was “all in her head”. When she was eventually referred for a colonoscopy, they found that half of her colon was diseased and that the delay in diagnosis had left her at an increased risk of developing cancer.[29] This is not an isolated incident. Studies show that women are more likely to experience longer delays in diagnosis for a brain tumour[30], and 6 out of 11 types of cancer.[31] It is widely recognised that delays in cancer diagnoses and treatment increase the risk of mortality.[32] Unheard and undervalued Last year, the Cumberlege Review[33] highlighted a number of patient safety failings[34] in relation to pelvic mesh implants, sodium valproate and hormone pregnancy tests. The scale and severity of avoidable harm that resulted from these three interventions over a period of several decades is shocking and could have been reduced if the women involved were listened to sooner and critically, if they had been appropriately informed in the first place. The review found that the women involved had been dismissed and sidelined for years as they fought hard to raise awareness of the issues and prevent others from suffering as they had. The defensive and unresponsive attitudes the women were met with highlighted a shameful disregard for the value of their voices in improving patient safety. Unfortunately, the reluctance to listen to groups representing patient safety concerns for women is not uncommon. For many years, the Campaign Against Painful Hysteroscopy (CAPH) has been raising awareness of the severe pain experienced by a significant number of women, during outpatient hysteroscopy procedures. Despite the severity and long-lasting nature of the trauma experienced by these women, the systems response has so far been inadequate,[35] and women are continuing to suffer avoidable harm.[36] What needs to happen? Patient Safety Learning believes that systems and policies need to be tackled urgently to address the sex and gender bias that results in avoidable harm. We call for the following action. 1. Women, and patient groups representing women: to be given ample opportunity to voice their concerns through feedback, reporting systems and in formal patient reported outcomes analysis to be listened to and believed to be invited to contribute to patient safety as part of the clinical team and in research. 2. Healthcare leaders to commit to using the insights from women, and patient groups representing women, to inform improvement actions that will prevent future harm. 3. Quality, evidence-based gender bias training to be made mandatory for all staff working in healthcare, whether they are clinicians, researchers, product manufacturers, policy makers etc. 4. Data regarding delays in diagnosis and treatment to be disaggregated by sex, regularly reviewed and used to inform further research and to improve outcomes. Final thoughts and intersectionality There is still a long road ahead to tackle sex and gender related bias in healthcare, and attitudes towards female patients. The ancient belief that the male body is the ‘norm’ runs dangerously deep and has contributed to a widespread acceptance that female-specific data is not necessary or even particularly relevant. This lack of data has left the medical world better equipped to diagnose, treat and care for male patients. In the absence of a comparable level of knowledge and understanding of the female body, women are being too easily labelled or dismissed as anxious without clinical investigation. A convenient labelling system that provides a smokescreen for uncertainty, whether applied consciously or not. As evidence builds that differences between the sexes play a significant role in the use of medications, devices and treatments, things are beginning to change. Although there are huge historical data gaps to fill, physicians are becoming better informed and able to tailor their approach to the female patient, using up-to-date sex-specific data. Guidelines have also been introduced in other countries to encourage improved representation of females in medical studies, although the UK’s main funders still make no requirements for gender in research design and analysis to be considered.[37] Continuing to accept the male body as an adequate representation of all humans is not just antiquated or scientifically incorrect; it costs lives. While this blog has focused on the dangers of male-focused approaches to design and data, and biased attitudes towards women, it is essential that we recognise there are complex inter-relationships that compound the issue of biological and physical diversity. There is evidence that systemic and individual biases in healthcare negatively impact on the safety and care of, but not exclusive to, the following groups: transgender patients[38] [39] [40] healthcare workers[41] [42] [43] and patients[44] [45] [46] [47] from different ethnic backgrounds. The impact here is not uniform, it is complex and manifests itself in different ways among people from Black, Asian and other ethnic backgrounds. patients living with a disability[48] [49] [50] and patients from socially deprived backgrounds[51] [52] [53]. Intersectionality is an essential consideration. It is important to consider and analyse all variables in order to effectively identify the barriers, and solutions to safer and more equitable care. Share your views We would love to hear your thoughts and feedback on the content of this blog, to leave your comments below please sign up to the hub. If you would like to share your experiences and insights on any of the issues raised you can also get in touch with the Patient Safety Learning team at [email protected] References [1] Topping A. Sexism on the Covid-19 frontline: 'PPE is made for a 6ft 3in rugby player'. The Guardian. 2020. [2] TUC. Personal protective equipment and women. 2016. [3] NHS Employers. Gender in the NHS infographic. 2019. [4] Formosa D and Bednarek N. The Dangerous Problem Of Gender Bias In Healthcare Design. Fast Company. 2017. [5] Duvernoy C, Smith D, Manohar P et al. Gender differences in adverse outcomes after contemporary percutaneous coronary intervention: An analysis from the Blue Cross Blue Shield of Michigan Cardiovascular Consortium (BMC2) percutaneous coronary intervention registry. American Heart Journal. Vol 159, Issue 4, 2010; 677-683.e1. [6] Why women are more likely to have dodgy hip implants or other medical devices. The Conversation. 2019. [7] Global Health 5050. Organisations generally fail to present sex-disaggregated programmatic data (accessed 5 March 2021.) [8] Beery AK, Zucker I. Sex bias in neuroscience and biomedical research. Neurosci Biobehav Rev. 2011;35(3):565-572. doi:10.1016/j.neubiorev.2010.07.002 [9] Jackson G. The female problem: how male bias in medical trials ruined women's health. The Guardian. 2019. [10] Curno M, Rossi S, Hodges-Mameletzis I et al. A systematic review of the inclusion (or exclusion) of women in HIV research: from clinical studies of antiretrovirals and vaccines to cure strategies. Journal of Acquired Immune Definciency Syndrome, 1:7(2) 2016. 181-8. [11] Ortona E, Delunardo F, Baggio G et al. A sex and gender perspective in medicine: A new mandatory challenge for human health: Preface. Ann 1st Super Sanita, 2016. 52:2146-8. [12] Pretz J, Pekosz A, Lane A et al. Estrongenic compounds reduce influenza A virus in primary human nasal epithelial cells derives from female, but not male, donors. American Journal of Physiology. 310:5, 415-425. [13] Marts and Keitt (2004). [14] Blair M. Sex-based differences in physiology: what should we teach in the medical curriculum? Advanced physiological education. 2007, 31, 23-5. [15]Ibid. [16] Waxman D and Holloway M. Sex Differences in the Expression of Hepatic Drug Metabolizing Enzymes. Molecular Pharmacology August 1, 2009, 76 (2) 215-228 [17] Spoletini I, Vitale C, Malorni W et al. Sex Differences in Drug Effects: Interaction with Sex Hormones in Adult Life. Sex and Gender Differences in Pharmacology. Handbook of Experimental Pharmacology, 2013; vol 214. [18] Karp N, Mason J, Beaudet A et al. Prevalence of sexual dimorphism in mammalian phenotypic traits, Nature Communications, 8:15475. 2017. [19] Criado Perez, C. Invisible Women. 2019. [20] Zusterzeel R, Selzman KA, Sanders WE, et al. Cardiac Resynchronization Therapy in Women: US Food and Drug Administration Meta-analysis of Patient-Level Data. JAMA Intern Med. 2014;174(8):1340–1348. [21] Louise Hall, 29 July 2020. Women who survived coronavirus angry after persistent symptoms dismissed as ‘anxiety’ by doctors. Independent. [22] Hoffmann DE and Tarzian AJ. The girl who cried pain: a bias against women in the treatment of pain. J Law Med Ethics. 2001 Spring;29(1):13-27. [23] Katz Institute for Women’s Health: Expert Insights. Gaslighting in women’s health: No, it’s not just in your head (accessed 5 March 2021). [24] BBC Future. How gender bias affects your healthcare: 'Everybody was telling me there was nothing wrong'. 2018. [25] Graham S. Hysterical Women website. [26] Thunander Sundbom L, Bingefors K, Hedborg K et al. Are men under-treated and women over-treated with antidepressants? Findings from a cross-sectional survey in Sweden. BJPsych Bull. 2017;41(3):145-150. doi:10.1192/pb.bp.116.054270 [27] Billock J. Pain bias: The health inequality rarely discussed. BBC Future, 2018. [28] Tunks E, Bellissimo A and Roy R (eds.). Chronic pain: Psychosocial factors in rehabilitation (2nd ed.). Robert E Krieger Publishing Co. 1990. [29] Criado Perez, C. Invisible Women. 2019. [30] Brain Tumour Charity. Finding Myself in Your Hands: The Reality of Brain Tumour Treatment and Care. 2016. [31] Din NU, Ukoumunne OC, Rubin G, Hamilton W, Carter B, Stapley S, Neal RD. Age and Gender Variations in Cancer Diagnostic Intervals in 15 Cancers: Analysis of Data from the UK Clinical Practice Research Datalink. PLoS One. 2015 May 15;10(5):e0127717. [32] Hanna T P, King W D, Thibodeau S, Jalink M, Paulin G A, Harvey-Jones E et al. Mortality due to cancer treatment delay: systematic review and meta-analysis. BMJ 2020; 371 :m4087 [33] The Independent Medicines and Medical Devices Review, First Do No Harm, 8 July 2020. [34] Patient Safety Learning. Analysing the Cumberlege Review: Who should join the dots for patient safety? 2020. [35] Patient Safety Learning. Ministers respond to concerns about painful hysteroscopies: Northern Ireland, Scotland and Wales. 2021. [36] Patient Safety Learning online forum. Painful Hysteroscopy. 2020-ongoing. [37] Howard, Ehrlich, Gamlen and Oram (2017) [38] Watkinson D and Sunderland C. How discrimination affects access to healthcare for transgender people. Nursing Times [online]; 2017, 113: 4, 36-39. [39] Cerretani J. Transgender discrimination in health care: What families should know. Boston Children’s hospital, 2020 (accessed 5 March 2021). [40] Safer JD, Coleman E, Feldman J, et al. Barriers to healthcare for transgender individuals. Curr Opin Endocrinol Diabetes Obes. 2016;23(2):168-171. [41] ITV News. Frontline ‘discriminiation’ in virus outbreak may be factor in more BAME NHS staff deaths. ITV News YouTube Channel, 2020 (accessed 5 March 2021). [42] Royal College of Nursing. BAME nursing staff experiencing greater PPE shortages despite COVID-19 risk warnings. 2020. [43] Public Health England. Beyond the data: Understanding the impact of COVID-19 on BAME groups. 2020. [44] Hoffman K. Study links disparities in pain management to racial bias. University of Virginia, 2016 (accessed 5 March 2021). [45] Lucas FL, Stukel TA, Morris AM, Siewers AE, Birkmeyer JD. Race and surgical mortality in the United States. Ann Surg. 2006;243(2):281-286.32. [46] Weiner R. African American children three times more likely to die after surgery than white peers. Independent. 2020 (accessed 5 March 2021). [47] MBRRACE-UK. Saving Lives, Improving Mothers’ Care: Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2016-18. 2020. [48] Chartered Society of Physiotherapy. New review highlights health inequalities for people with learning disabilities. 2020 (accessed 5 March 2021). [49] Care Home Professional. People with learning disabilities up to six times more likely to die from COVID. 2020 (accessed 5 March 2021). [50] Read, S., Heslop, P., Turner, S. et al. Disabled people’s experiences of accessing reasonable adjustments in hospitals: a qualitative study. 2018. BMC Health Serv Res 18, 931. [51] The Health Foundation. Astonishing difference in the risk of avoidable death between the rich and poor. 2019 (accessed 5 March 2021). [52] Campbell D. Poorest die most often from emergency surgery, research finds. The Guardian, 2019. [53] Tinson A. Living in poverty was bad for your health long before COVID-19. The Health Foundation, 2020.

In this guest blog, Sarah Graham, award winning journalist, founder of Hysterical Women and author of Rebel Bodies, talks about gender bias within healthcare. Sarah draws on research, anecdotal evidence and the recent Cumberlege report to highlight how widespread mistreatment of women can have a negative impact on their safety as a patient. “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

The MBRRACE-UK Saving Lives, Improving Mothers' Care report found that black women in the UK are five times as likely as white women to die during pregnancy or childbirth.