“I was told my pain was made-up for seven years.”
“I left a job I loved.”
“It’s sometimes embarrassing for a guy to not know about it, you don’t want to seem stupid or step on any toes. I don’t really feel like we were taught much about periods.”*
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The current healthcare system is failing to meet the needs of women. Following growing awareness of the importance of women’s health through both research and media outcries, the Department of Health and Social Care called for evidence and public views to inform England’s first Women’s Health Strategy.
The Academy’s response, published 14 June (also available to download from the side of this page), identifies issues for women at every level of the health system which require a comprehensive system-level approach to solve. Read on for a summary of some of the key issues across research, inclusion, healthcare and society from our Fellows and researchers.
Professor Neena Modi FMedSci, Academy Council member, commented:
“I’ve spoken to a lot of people who think that women’s health is just about being nice to mothers and their babies. It's far more than that.
“Women are 51% of the population. Their unremunerated contributions to society throughout life far outweigh those of their male counterparts. They are also an essential part of the remunerated workforce. But women’s lives have been marginalised for far too long although their personal health and resilience connect directly to population health, and the nation’s economic prosperity. A better appreciation of this interdependency has been too slow in coming.”
Dr Anna Hands, the Academy’s Policy Officer who spoke with Fellows to co-ordinate this response, added:
“Working on this consultation has been equal parts depressing and inspiring. But the passion and wisdom of the female researchers who’ve been championing these topics for decades gives me hope we can do better.”
Below are some of key issues across research, inclusion, healthcare and society identified in the response:
1. Poor research
Female animals and women are commonly excluded from research, partly due to a reluctance to account for and investigate the variability that can be introduced by women’s hormonal cycles. And research that does include women commonly fails to check for differences between men and women.
Studies that don’t consider whether their findings work for 50% of potential patients represent poor use of time, money and effort for the UK R&D sector, so our consultation response recommends UK research funders require sex and gender are included as experimental variables by default, in line with similar requirements in the USA and European Union.
On top of this, research into issues specific to women is underfunded relative to the cost of care. For every £1 spent by the NHS caring for cancer, it spends 12p on research: for every £1 spent by the NHS caring for reproductive issues, just 1p is spent on research. The NHS pays fifty times more in legal claims relating to pregnancy than it spends on pregnancy-related research.
The Academy therefore sees the failure to include research in the recent UK Government white paper on health and social care and NHS Long Term Plan as a missed opportunity – find out more about our work on why we must embed strong research through the NHS.
2. Poor inclusion
People who need to be included in research or care are often left out. Professor Hilary Critchley FMedSci, Professor of Reproductive Medicine at the University of Edinburgh and expert on menstruation, said:
“We see a diverse range of patients in the clinic who need help because of problematic periods. Whoever our patients are, the key issues are still under-reporting of the debilitating burden of heavy menstrual bleeding and language taboos. These mask the wider impact on families and workplaces as those who suffer struggle to rearrange their lives around very frequent or very heavy bleeding.”
The consultation response discusses the need to consider how to include people who identify as women, as well as people assigned female at birth who do not identify as women, who could all face health issues around topics like these.
We also see women are excluded from some research areas by default without clear justification. For example, pregnant women are currently excluded from 80% of COVID-related clinical trials worldwide, despite being at higher risk of severe illness and more likely to die with the disease. This has caused real-world delays: in the UK pregnant women were unable to access COVID-19 vaccines until mid-April 2021.
3. Poor healthcare outcomes
Research that isn’t designed with women in mind contributes to a healthcare system that doesn’t meet their needs and delivers poor healthcare outcomes.
“Ian and I very much wanted another child but found ourselves in the position where we experienced a series of miscarriages. Even after testing, we were left with no answers so we decided to stop trying. It was a devastating period in our lives.” Dr Margaret Rose Cunningham, Academy researcher (pictured with her partner Ian)
- One in ten women worldwide will be affected by miscarriage, and many will never know why.
- In a study of over 3000 women, two in five reported report persistent incontinence twelve years after giving birth.
- One in five women in the UK sees five or more different midwives during their pregnancy.
- Some conditions such as endometriosis currently take in the UK on average 8 years to be correctly diagnosed.
- A woman is 50% more likely to receive the wrong initial diagnosis for a heart attack.
- Although Black women are the group most likely to experience a mental health disorder, they are half as likely as white women to receive treatment.
- Over two thirds of women needing personal protective equipment at work reported not having female-shaped or sized PPE available.
- Women from the richest parts of England live on average seven years longer than women from the poorest.
Professor Philippa Saunders FMedSci, Academy Registrar, commented:
“As a women I think there’s still a sense that suffering is part of what we do. Women come to me and ask, how much pain is normal? If there’s anything that’s impairing your ability to live your life, you should be able to seek help and advice. Women don’t necessarily want to be medicated, and their conditions often won’t fit into nicely pigeonholed clinical care pathways. But every woman deserves the chance to seek help, talk, get advice, and be listened to.”
4. Poor social outcomes
Women in the UK are still consistently sidelined in society and the workplace, with implications across individual outcomes, population health, and national economic output.
In the consultation response we highlight that a combination of sexism and ageism is causing older women undergoing menopause to reduce working hours, resign from leadership roles, or stop working altogether. This likely feeds a cycle where fewer women in decision-making roles means reduced focus on women’s issues.
In the field of research, women currently make up only 14% of board-level positions in the life sciences industry and only 20% of Academy Fellows. The picture above is taken from a 2015 ‘open space’ meeting on how Fellows can support women in bioscience, and the Academy's SUSTAIN programme continues to support women in research to thrive in their first independent positions.
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Read our full consultation response here, find out more about our UK policy work here and read all our consultation responses in our publications section.
*References:
- Quote from Marie Turner, 26 year old endometriosis patient, in the All-Party Parliamentary Group on Women’s Health Informed Choice inquiry report
- Anonymous doctor quoted in British Medical Association’s 2021 report ‘Challenging the culture on menopause for working doctors’
- Ben, 18, member of Plan UK’s menstruation focus groups with young people in England
- All further references can be found in the full consultation response.
Response to DHSC's Women's Health Strategy call for evidence
