In December the federal government launched a National Women’s Health Advisory Council to tackle the impact of sexism on the provision of healthcare services. In the words of the Council Chair and Assistant Minister for Health and Aged Care, the Hon Ged Kearney: “A combination of persistent social prejudice, medical ignorance and research exclusion is a health catastrophe for women.”[1]
This health catastrophe means that Australian women are much less likely than men to receive the healthcare they need. Are they also more likely to be injured by healthcare? We cannot say with certainty because we do not have the data. Hospital complication rates are not published by sex and age even though the raw data contains those characteristics. For example, the 2022 edition of Australia’s Health, published by the Australian Institute of Health and Welfare, reports that there was one hospital-acquired complication for every 411 hospital admissions[2]. It gives no total figure and no breakdown by sex.
In 2015 the Coalition government ceased funding the national collection of data on healthcare injury claims and outcomes. So, there is no published data on women’s healthcare injuries and no public data on healthcare injury compensation claims.
Evidence from overseas suggests that women suffer healthcare injuries disproportionately. A 2020 UK report, First Do No Harm, focused on three interventions: pelvic mesh, hormonal pregnancy tests and an epilepsy drug that causes birth defects. All three interventions affect women, not men[3]. In the words of the UK Secretary of State for Health and Social Care, the Rt Hon Steve Barclay, the report “laid bare the consequences of a health system that does not listen to the experiences of women”. In December 2022 the UK government published a detailed response on action taken to implement the report’s recommendations, including appointing the country’s first patient safety commissioner, the creation of nine specialist centres to treat women affected by implanted mesh, and the publication of the first women’s health strategy.[4]
Certainly, our experience is consistent with this. Vickie suffered life-threatening injury during excessive surgery that was offered to her for pelvic organ prolapse, procedures that by definition, are carried out only on women. When she complained of extreme pain, an indication for the perforated organs she suffered (and known complications of the procedures undertaken), her cries for help went unheeded, even though Vickie was a trained nurse and midwife and led a team that investigated such harm for the state government Department of Health.
She and her husband were shocked that her resulting bowel and bladder dysfunction was ignored and that she was discharged against her judgement. She experienced a system that first oversold her unnecessary procedures and then ignored her when she tried to alert her male surgeon to the fact that something had gone wrong. In the end, her deteriorating condition led her to override her surgeon’s advice to stay home. Her husband called an Ambulance and she had life-saving emergency surgery within hours of certain death. Vickie was so shocked by what happened to her, including the arduous litigation-based compensation system, that she set up a charitable organisation called the FairCare Alliance to support others in similar situations.
Sarah entered hospital with symptoms described by doctors as “functional” and possibly “behavioural”, i.e. stress-related. She was investigated with a myelogram, a spinal x-ray in which neurotoxic contrast media is injected directly into the central nervous system. She was then treated with high doses of corticosteroids. This investigation and treatment left her severely disabled.
In researching the cause of her injury, she found eight studies that showed an increased risk of adverse reactions to myelograms among women of reproductive age, a risk never mentioned to her. She was astonished to learn that corticosteroid drugs are synthetic stress hormones, another fact never mentioned to her. It has been known for over 30 years that women of reproductive age have higher levels of stress hormones than men and stress systems that are naturally more sensitive[5]; hence they run a greater risk of adverse reactions to corticosteroids.
Sarah took her case to court in 2001 to draw attention to the unrecognised risks associated with corticosteroid drugs. She lost. Twenty years later, patients are still rarely told that corticosteroid drugs are synthetic stress hormones, nor are women of reproductive age usually warned of the specific risks associated with using them.
As well as differences in sex and stress hormones, women and men have differences in organ systems, tissues and cells. Their experience of common diseases varies in severity, prevalence and nature, and they can react differently to drugs and treatment. Yet, findings from medical research on predominantly male subjects (or male cells) are still being used to inform the outcomes for the female population with unintentional or adverse consequences. Women are also more likely to have their physical symptoms attributed to psychological causes. Such responses lead to delays in diagnosis and treatment for underlying physical conditions, leaving women at greater risk of poor outcomes or premature death[6].
In addition to the specific risks associated with women’s biology and reproductive function, there is also the structural bias that runs right through our society, and therefore through our healthcare and legal systems. Most senior specialists are still men. If a woman suffers a healthcare injury, the lawyers she consults are likely to be men, and the judges who decide her case are likely to be men. Individual male doctors and lawyers may go to great lengths to assist women patients and clients, but the value system in our culture is one that prioritises men over women.
The greater the disparities in sex, race, social class, wealth and power between the health professional and the patient, the greater the risk of abuse of the patient’s autonomy and consequently of patient harm. It was recently reported that doctors in Denmark had fitted contraceptive devices in indigenous Sami women without their consent. This happened in the 60s and 70s but also as recently as 2019. It is now the subject of a Danish government investigation, although those affected say the investigation, which is limited to the period before 1991, does not go far enough[7]. Historically, indigenous women in Australia and Canada have been sterilised without their consent, as have Australian women with intellectual disabilities[8].
The differences in female and male biology, the sexism that often hinders timely and appropriate diagnosis and treatment, and the structural bias in our society which leads the healthcare system to benefit men rather than women all mean that there is a vital need for transparency in data on healthcare complications and medical negligence claims data.
If you agree that we need to know whether women are being disproportionately injured by our healthcare system, please sign and share our petition. If you can, please give a few dollars to increase distribution of the petition.
We are very grateful for your ongoing support.
Sarah and Vickie
REFERENCES
[1] https://www.theguardian.com/australia-news/2022/dec/08/labor-launches-national-womens-health-advisory-council-to-tackle-medical-misogyny https://www.abc.net.au/news/2022-12-19/medical-misogyny-womens-health-advisory-council/101780360
[2] https://www.aihw.gov.au/reports/australias-health/australias-health-2022-in-brief/summary
[3] https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf
[4] https://www.gov.uk/government/publications/independent-medicines-and-medical-devices-safety-review-update-report-on-government-implementation/independent-medicines-and-medical-devices-safety-review-update-report-on-government-implementation
[5] Neeck G, Federlin K, Graef V, Rusch D, Schmidt KL. “Adrenal secretion of cortisol in patients with rheumatoid arthritis”. Journal of Rheumatology, 1990; 17 (1): 24-29.
[6] Patient Safety Learning, “Dangerous exclusions: The risk to patient safety of sex and gender bias”. https://www.patientsafetylearning.org/blog/dangerous-exclusions-the-risk-to-patient-safety-of-sex-and-gender-bias#_ftnref15
[7] https://www.bbc.com/news/world-europe-63863088
[8]https://www.health.qld.gov.au/__data/assets/pdf_file/0018/161541/adolescent_sexual_health_guideline.pdf
https://theconversation.com/canadas-shameful-history-of-sterilizing-indigenous-women-107876
https://humanrights.gov.au/our-work/disability-rights/projects/steri in also lisation-girls-and-young-women-australia-1997-report