Heart of the matter: how even the treatment of women's health discriminates against them
Professor Colin Berry can pinpoint the exact moment he began to realise just how much the profession he has dedicated his career to discriminates against women.
The year was 2018 and, as he and colleagues analysed the results of a year-long cardiology study, they stumbled upon very significant – and until then undetected – sex-based differences that were putting women’s lives at risk.
It was, the University of Glasgow academic says, “a watershed moment”.
“If you imagine a tree, the trunk and the main branches are the heart’s blood vessels,” Berry, who is also a consultant cardiologist at the Golden Jubilee and Queen Elizabeth hospitals, explains.
“You can see them in a coronary angiogram, but there are a multitude of smaller vessels you can’t see, but what you can’t see you don’t know.
“New technology used in the study allowed us to measure the function of those vessels and when we analysed the results it was literally a watershed moment.
“Of the patients who had angina but no blockages in their arteries the vast majority were women, and here’s the rub: those are the patients who get told ‘it’s a great result, you don’t have any blockages, you can go home’.”
In other words, women have been sent home to potentially die because a diagnostic test designed around the way heart disease presents in men did not pick up on their symptoms.
Ultimately it was advances in technology that led to the breakthrough Berry describes, but he says the study highlighted that the way medicine is taught and the fact cardiology is such a male-dominated branch of the profession have led to women’s justified health concerns being dismissed.
“We are educated to believe that angina and heart attacks are caused by blocked arteries,” he says.
“Unfortunately there’s also a bias with male doctors when they are talking to female patients, especially when they realise what they’re looking at doesn’t make sense – how can this woman have angina when she doesn’t have blocked coronary arteries?
“They say things like ‘it must be in your head or to do with your weight’ or give other, frankly sexist, reasons.”
It is a characterisation that is easily recognisable to Emma Ritch, executive director of feminist membership organisation Engender.
Like Berry, Ritch is a member of the Scottish Government’s Women’s Health Group, a panel set up in the 2019-20 session to find ways of tackling women’s health inequalities.
Also like Berry, she believes many of those inequalities exist because findings about men are used to make assumptions about women, while a tendency to stereotype women’s experiences exacerbates the situation.
“Health inequalities are linked to the invisibility of women’s experiences and the way we are not taken account of – it’s really striking how men are considered to be the default human in medicine,” Ritch says.
“Women are undertreated or the presentation of their disease isn’t appreciated by medical professionals. They wait longer for pain medication, they wait longer for cancer diagnoses, they are more likely to have their complaint put down to mental health, they are more likely to be disabled by a stroke [because they will wait longer than men to get treatment], and they are more likely to be diagnosed as having anxiety and that makes it harder for them to be taken seriously by other health professionals.”
Gender specialist Professor Kate Sang, director of the Centre for Research on Employment, Work and the Professions at Heriot-Watt University, says this is self-perpetuating: gaps in research lead to gaps in medical education and that impacts on the way women are diagnosed, which in turn has an effect on their willingness to discuss their symptoms in future.
“It takes about seven years to get an endometriosis diagnosis and some of that is trying to be believed and get past a GP as gatekeeper,” Sang says.
“The stories I hear are of people going to their GP and being told it’s normal, it’s part of what being a woman is about, but because we don’t talk about what a normal period is who knows what that is?”
Endometriosis is a long-term health condition that sees tissue similar to the lining of the womb grow in places such as the ovaries and fallopian tubes, causing severe pain and in some cases leaving women unable to hold down a job or have children.
The charity Endometriosis UK says that, despite the illness affecting one in 10 women, it often goes undiagnosed because it is not well understood by health professionals.
Yet it was not until 2015 that Scotland’s chief medical officer recommended specialist endometriosis centres be set up across the country and it was 2017 before England’s National Institute for Health and Care Excellence advised doctors to start listening to women when they complained about crippling period pain.
Sang, who recently conducted a study into how menstruation and the menopause impact on women’s working lives, believes such initiatives remain rare because the evidence needed to inform policymaking on women’s health issues is so patchy.
Unless funders begin to take an interest in women’s health it will remain that way, she says.
“Whenever I talk to funders they say the topic [being pitched] is important but not interesting,” she says.
“Whenever I talk to people about my research across industry, with individuals, with civil servants, they are all absolutely fascinated by it and think it should be funded, but when I go to a funder they keep coming back with ‘it’s just not interesting enough’.
“Policymakers, employers and governments all acknowledge that it’s super important, but they need a stronger evidence base in order to influence policy.”
Sang’s own research shows that the impact of funding such studies could be huge.
In a paper recently published in the International Journal of Environmental Research and Public Health, she found that everything from a lack of adequate toilet facilities to embarrassment and shame about discussing menstruation, the menopause and associated pain was leading to women taking sick days from work and in some cases giving up employment altogether.
If more was understood about their experiences, she says, policies could be put in place that would allow them to continue in work, benefiting not just the women involved but their employers and the wider economy too.
“The hope is to get people more interested in funding research because we need to know more about it so employers, governments and trade unions can put better policies in place,” she says.
“If you look at the occupational health literature women don’t really feature outside pregnancy – what we know about occupational health is what we know about men’s occupational health.
“Women’s health at work is not really understood at all and I’d like to see a push to understand the role of gender more.”
For Ritch, a women’s health fund would be one positive way of beginning to redress the balance by funding the type of research that could then be used to better inform areas like medical education and health policy.
“That could close the gap on research for sex-specific conditions like endometriosis, but also non-sex-specific ones like heart disease,” she says.
“We really need to look at health budgets and identify where resource is going, who is benefiting, what the money is being spent on and what the outcomes are.
“The impact of something like endometriosis is staggering but it’s treated like a minor inconvenience.”
Berry believes investment needs to be far more wide-reaching, though, so the data that is already being collected on all health conditions can be properly collated and understood.
“In Scotland we don’t have a national data collection system so we don’t know what we don’t know,” he says.
“The NHS in Scotland has a number of health boards but typically there is no data sharing between them. They are independent legal entities.
“If someone from East Kilbride, which is covered by NHS Lanarkshire, goes into Glasgow and has chest pains they will go to A&E at Glasgow Royal Infirmary, which is run by NHS Greater Glasgow & Clyde. Their heart attack provider would be NHS Golden Jubilee, which is part of a special health board.
“Each hospital would have its own data but they wouldn’t know what happened to their patient when they moved on to the next board.
“It’s almost distressing to me because I know what we don’t know – we don’t have national data on heart attacks, the leading cause of death.”
Berry notes that the cost of creating such a system would be huge, not least because it would involve the commissioning of bespoke IT, something the public sector finds notoriously difficult to get right.
But he believes it would bring benefits for education, because studies would have ready-made cohorts; for care, because those running studies would have a duty to respond to patients; and for the overall healthcare system, because gaps in knowledge would be filled in.
“Having [a means of collecting] national data would mean a significant investment, but look at the totality of the benefits and it would be an investment worth making – and we would know about the health differences between men and women,” Berry adds.