Features

Just why do women face a fight for equal health

07 November 2019

More women than men are dying from heart attacks, women’s pain is treated less aggressively, and conditions such as endometriosis can take years to be diagnosed. Journalist Jo Waters asks if women are getting a raw deal and how to redress the balance.

It seems that women’s health issues are suddenly on the main agenda. Period poverty has been a regular topic of discussion in parliament of late (UK parliament, 2019). And earlier this year came the announcement that free sanitary products would be offered in all primary and secondary schools and colleges in England from early 2020 (Department for Education, 2019).

Wales followed suit (Welsh Government, 2019), while Scotland was the first government in the world to offer free sanitary products to all school pupils and students in 2018 (Scottish Government, 2019). Meanwhile, the Labour Party made the impact of the menopause on women in the workplace a hot topic at its autumn party conference (Labour, 2019).

All welcome steps, but it begs the question, why has this recognition of women’s health issues and needs taken so long? And what else are women missing out on when it comes to their health?

A recent article in The Lancet reviewed the evidence on why gender equality matters (Shannon et al, 2019). The authors stressed that gender is ‘one of the most important drivers of health and health inequalities of our time’ and concluded that although progress has been made, ‘conceptual and methodo­logical shortfalls in research – including outdated conceptualisations of gender and gender inequalities –persist’. 

‘In medicine, man is the default human being. any deviation is atypical, abNormal, deficient’

Some alarming statistics on women’s health and gender inequalities are increasingly coming to light. Most recently, the British Heart Foundation (BHF) suggested that over 10 years, 8243 women’s lives were needlessly lost in England and Wales because they didn’t receive the same standard of care as men – from diagnosis of a heart attack right through to aftercare (BHF, 2019). Its report says: ‘Inequalities in the way women with heart attacks are cared for compared to men are costing lives,’ (BHF, 2019). What’s going on?

Exploring the gap

‘Women’s pain is all too often dismissed, their illnesses misdiagnosed or ignored,’ writes Gabrielle Jackson in her new book investigating gender bias in healthcare – Pain and prejudice.* ‘In medicine, man is the default human being. Any deviation is atypical, abnormal, deficient.’

‘Things are changing,’ writes Gabrielle. ‘But women are in pain, all through their bodies; they’re in pain with their periods, and while having sex; they have pelvic pain, migraine, headaches, joint aches, painful bladders, irritable bowels, sore lower backs, muscle pain, vulval pain, vaginal pain, jaw pain, and muscle aches.’ She says: ‘Women are also diagnosed with depression, anxiety, post-traumatic stress disorder and behavioural disorders at much higher rates than men.’

Gabrielle’s research has unearthed some further shocking statistics that build a convincing case for gender inequality in access to healthcare. In her book, she cites study after study that illustrate how women are being underserved worldwide. For instance, an Australian study (Khan et al, 2018) found women were half as likely to be treated for a heart attack as men and twice as likely to die six months after discharge.

She also cites research that shows women are more likely to have their physical symptoms ascribed to a mental health problem and are more likely to have heart disease misdiagnosed, become disabled after a stroke, suffer from illnesses ignored or denied by the medical profession and wait longer to be diagnosed with cancer.

One landmark paper she highlights (Hoffman and Tarzian, 2001) reported that women’s pain is taken less seriously than men’s and treated less aggressively, that there’s a perception they can ‘put up with it’ more, and that women are more likely to have their pain dismissed as ‘psychogenic’ and therefore not real. The US author of this study concludes that women report more frequent and greater pain than men, but are more likely to be less well treated than men.

Women also make up three-quarters of all those who suffer from autoimmune conditions, says Gabrielle. ‘Almost half of all these women with these diseases will have been told by their doctors that they’re hypochondriacs or “too concerned with their own health,”’ she says.

Gabrielle became interested in women’s pain issues after she wrote an article for The Guardian about her experiences of endometriosis (Jackson, 2015).

‘Hundreds of women contacted me and said I had described their life. I went to a conference on endometriosis and heard that the ovulation pain, back pain, leg pain I had suffered from all my life and that I’d written off as hypochondria, were actually symptoms of endometriosis and I couldn’t believe it.’

After Gabrielle’s book was published in Australia, a woman pain specialist came to see her in Brisbane: ‘She told me that although she’d qualified as an anaesthetist and completed two fellowships in pain management, when she started work many of her patients suffered from pelvic pain. She was unable to help them because her training had included nothing on it. That’s just such a good example of how women’s pain isn’t seen as a priority in medical training.’

Maya Dusenbery, US author of 2018’s Doing harm: the truth about how bad medicine and lazy science leave women dismissed, misdiagnosed and sick, paints a similar picture of inequality. After being diagnosed with rheumatoid arthritis at the age of 27 - a condition much more common in women (NHS Choices, 2019) – she became frustrated at the lack of awareness of the condition, despite the fact that it affected 50 million Americans. ‘Certainly, medicine seemed frustratingly short on answers. It couldn’t tell me why my immune cells had suddenly turned against my own joints. It could only offer intense drugs that suppressed my entire immune system,’ she writes.

‘As a feminist writer, I was inclined to think this might have something to do with the fact that women make up the majority of those with autoimmune diseases,’ writes Maya. ‘But once I started to think about them, I quickly realised that autoimmune disease isn’t the only women’s health problem that is comparatively neglected. Indeed, I felt that every disease that experts described as overlooked or an often growing “epidemic” disproportionately affects women.’

Indeed after two years of research for her book, Maya found an overall lack of medical research and medical training in women’s issues (such as vaginal health) alongside unconscious bias (not being taken seriously at doctors). She is also concerned that women’s health has been reduced to ‘bikini medicine’ –as outlined by Dr Nanette Wenger (Dusenberry, 2018) – which focuses essentially on the breast and reproductive system. Maya explains that this kind of bikini medicine overlooks the fact that women have the same top three causes of death - heart disease, stroke and cancer of all kinds – as men do.

The BHF reached similar conclusions, stating in its recent report that ‘women have been historically under-represented in clinical research, including cardiovascular trials’. And that ‘as a result, many diagnostic tests and treatments have been based on data gathered from men’ (BHF, 2019).

In addition, NICE guidelines in 2017 instructed doctors to listen more carefully to women regarding suspected endometriosis among other pointers. The guidelines recommended that GPs should suspect endometriosis in women (including young women under 17) with two or more listed symptoms – including chronic pelvic pain, pain during or after sex and period-related cyclical urinary symptoms – in a bid to end lengthy delays in diagnosis. It also said there should be managed networks for endometriosis care in the community, including GPs, practice and school nurses (SNs), and sexual health services, all of whom should know the symptoms.

We need to talk

Dr Parveen Ali, a senior lecturer at the University of Sheffield’s School of Health Sciences who has a research interest in health inequalities related to gender and ethnicity, says that women are brought up to tolerate and just ‘get on’ with pain or whatever they experience from an early age. ‘We are raised in an environment of acceptance of pain from childhood. When it comes to our reproductive system, we don’t talk about it. We don’t talk about our experiences and so it’s hard to know what’s normal and what’s not,’ she says. ‘It’s not necessarily that only healthcare professionals make light of women’s symptoms for periods or the menopause for instance, but that women also don’t know what is normal and don’t seek help and therefore this can become a vicious circle.

‘As women still tend to shoulder the main responsibilities for running the home and childcare they tend to soldier on and concentrate on looking after others.’

Tania Adib, a consultant gynaecologist at the Lister Hospital, London, says she is regularly shocked at the number of women she sees who don’t realise that their symptoms are all part of the menopause and put up with it for years: ‘I often see well-educated, capable women at the height of their careers who are desperately worried about a range of health problems they have developed - not realising that it is all part of the menopause and perimenopause.

‘They’ll tell me they’re afraid and fear they are losing it because they have memory and concentration problems, muscle pain and fatigue, bladder problems and frequent UTIs, insomnia, anxiety and mood change. Because these problems can start years before the actual menopause, and they are still having periods they don’t connect them with the menopause at all.’

Tania continues: ‘Some of these women will end up being put on antidepressants and diagnosed with conditions such as arthritis or interstitial cystitis – but hormone treatments could help all their symptoms because they are all caused by the menopause.’

She explains that menopause subjects are still taboo: ‘For example, 75% of my post-menopausal patients suffer from vaginal dryness, but only 25% will seek treatment. They are often too embarrassed to mention it during a consultation unless they are asked a direct question. So, it isn’t necessarily that women are being undertreated by the medical profession, but that they often don’t know what’s normal and, even if they do, they are too embarrassed to mention it.

‘We have to get across to them that these problems are not embarrassing to doctors and that they will be listened to. It’s frustrating because there are good treatments available.’

However Annie**, a health visitor working in London, says a recent case she dealt with exemplified the low priority that women’s health problems can sometimes have. A young mother came to her maternal mood group for mothers of six-week-old babies. Annie explains it was one of the few times the mother had left the house since giving birth because she was suffering from incontinence.

‘This was having a major impact on her life. Her GP had referred her to a urogynaecologist, but the wait was several months despite the urgency of her situation and her being effectively housebound. He had even suggested it might get better on its own. I can’t help thinking that if men had those sort of problems it would be given higher priority and they would be seen quicker. It seems women are expected to just put up with some of their health problems.’

Can you help redress the balance?

TUC women’s equality officer Sian Elliott says she’s aware of research that shows women’s pain and health issues have not been addressed in the past. ‘One of the concerns we have surrounds menstruation: currently one in 10 women and girls can’t afford sanitary products, and this obviously has a big impact on their daily lives – especially in girls because it can affect whether they can attend school or not.

‘But it’s more than that, the whole subject is still a taboo,’ continues Sian. (See page 22 for more on this topic.) ‘Who hasn’t done that cloak-and-dagger march to the loo at work with a tampon up their sleeve? I think SNs and HVs could both help break down the taboos by talking to women about what’s normal and what’s not when it comes to periods and topics such as gynaecological cancers. They are both well placed to open up these conversations and have the expert knowledge.’

On the menopause, Sian explains: ‘We also know that 80% of women over 50 are in employment, and 60% of them have menopause symptoms that can impact on their behaviour at work for instance. On average, menopause symptoms can last four years and it’s really interesting that the highest suicide rate for women is in the 50 to 54 age range (although no one has established cause and effect). Some simple changes in the workplace can make a big difference.’

For instance, Sian says: ‘Employers can make it easier for women to take toilet breaks or have access to cool water. The Royal College of Midwives has done some fantastic work on changing the fabric of uniforms to a breathable fabric, to make life easier for midwives experiencing hot flushes.  

‘We want TUC reps and managers to facilitate informal conversations so that women can feel safe talking about their health problems, including periods, the menopause and chronic health conditions.’

Author Gabrielle thinks community practitioners (CPs) have a vital role to play in educating women about what’s normal when it comes to periods, for instance. ‘It’s such an important role. In a way it’s more than a doctor’s role, because increasingly there’s evidence that if conditions such as endometriosis are diagnosed early so they can be treated, it can stop them developing into a chronic pain condition.’

Harish Patel, national officer for equalities at Unite, says that in black and minority ethnic (BME) communities, periods and menopause are still taboo and not discussed in the home. He says that the medical community could be engaging with BME communities at local level in a forum they feel comfortable in. ‘This could include GP practice information days timed to be convenient for them to attend. I don’t see any reason why these information days couldn’t be run by HVs, and this applies to information days for all women – not just those from BME communities.’

Of SNs, Harish says: ‘They can be a good source of information for young girls, particularly as they seem to be starting their periods at a younger age. HVs can also be a source of trusted information about women’s health – even if they can’t deal with the problems themselves, they can signpost to other healthcare practitioners who can.’

Obi Amadi, lead professional officer for strategy, policy and equalities at Unite, says that it’s in the job responsibilities of SNs and HVs to have these types of conversations with women. ‘The problem is they don’t always get enough time to be as thorough as they could be. Because there is a lack of people resources, some issues are not dealt with in as much depth – CPs have to make a clinical judgement on what they can deal with and what they can’t.’

‘Too often across society, women’s bodies are seen as an inconvenience, with their symptoms and health concerns not taken seriously enough’

What now?

There are some encouraging signs that things are beginning to change. Taking a lead from the BHF report on the clear inequities in the treatment and diagnosis of heart disease in women, associate medical director of the BHF Dr Sonya Babu-Narayan says: ‘The first steps to closing this gender gap include changing the public perception of women and heart attacks. The assumption that women are not at risk of heart attack is false and has proven to be deadly.’

She continues: ‘In addition, we need to continue to fund research to better prevent, diagnose and treat heart attacks.’

Sonya also says: ‘it’s essential that healthcare professionals are aware of the inequalities in heart care for women’ and that ‘everyone can spot the symptoms of a heart attack’.

Gynaecological conditions such as endometriosis are also getting some high-level recognition. Following BBC research published in October, MPs have announced an inquiry into women’s experiences of living with the debilitating condition (Bevan, 2019). The research, based on interviews with 13,500 women with endometriosis, revealed half had suicidal thoughts and many said they relied on highly addictive painkillers.

Commenting on the research, Emma Cox, chief executive officer at Endometriosis UK said: ‘This shocking new research is a stark reminder that both society and the NHS need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet… Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time’ (Endometriosis UK, 2019).

Encouragingly, minister for women’s health Caroline Dinenage says: ‘Too often across society, women’s bodies are seen as an inconvenience, with their symptoms and health concerns not taken seriously enough. Thankfully, awareness of endometriosis and other painful and debilitating menstrual conditions is increasing – but there is still a long way to go.’

She continues: ‘I urge clinicians to play their part in breaking down the ongoing stigma around endometriosis by ensuring they follow NICE guidelines and encourage employers to rise to the challenge by creating supportive and flexible ways to help those living with these conditions’ (Endometriosis UK, 2019).

On the launch of the MPs’ enquiry, women’s health campaigner and political broadcaster Emma Barnett commented on her Instagram feed: ‘We need to plug the gender pain gap and gender research finding gap. And fast.’

Heart disease and endometriosis are two examples of health conditions where action is being taken by health organisations and government to rectify an imbalance between men and women’s healthcare – but women are increasingly organising themselves to highlight issues too. For instance, the recent Sling the Mesh campaign to highlight the dangers of vaginal mesh treatments for incontinence is just one example of this. Successful campaigning led to Public Health England announcing an immediate curb to most mesh operations in July 2018 after a review confirmed safety concerns first highlighted by women (Devlin, 2018).  

It really does seem that women are no longer accepting the inequalities and – as they represent half the population – what we’re seeing now is probably just the start of long-overdue change.


The HV view

‘It’s such a waste of a highly qualified workforce’

Catherine,** an HV in Kent who recently took early retirement, says she particularly worries that cases of postnatal depression may be missed or not picked up until they have escalated:

‘The role of an HV is very much reduced these days – we’d get to see women just once postnatally, 10 to 14 days after they’d given birth. Unless there was a problem, we wouldn’t see them again until their six- to eight-week check. I felt our role as HVs was so eroded you couldn’t give the follow-up afterwards – and women need that reassurance and follow-up, particularly as many people, in the London area at least, are far from their families and can be isolated. Some women have traumatic deliveries and can develop postnatal depression. In the past, I would have spent more time with them and asked them to call me if they needed to talk to me, but in the last years of my career I was just told to signpost women to their GP or counselling.

‘It’s such a waste of a highly qualified workforce who are well placed to pass on important health information. I’m afraid it was reduced to box-ticking and this was definitely a factor in influencing my decision to take early retirement.’

‘Women are missing out’

Annie,** an HV working in London, says:

‘Sadly, what I’m finding a lot in my daily practice is that we just don’t see women enough to build up relationships or get enough time to speak to them in depth about important health issues such as incontinence, contraception, what to expect in normal menstruation and the signs of postnatal depression, for instance.

‘As a result, I think women are missing out on important information about their health because HVs are spread too thinly.’

References

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UK Parliament. (2019) Search Hansard. See: 
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Scottish Government. (2019) Free sanitary products for students. See: https://www.gov.scot/news/free-sanitary-products-for-students (accessed 4 October 2019).

Welsh Government. (2019) Period dignity: Thousands to benefit from multi-million pound funding for schools. See:
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Labour. (2019) Labour announces plans to break the stigma of the menopause at work. See:
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Shannon G, Jansen M, Williams K, Cáceres C, Motta A, Odhiambo A, Eleveld A, Mannell J. (2019) Gender inequality in science, medicine and global healthcare: where we are and  why does it matter? The Lancet 393(10171): 560-9. See: https://www.thelancet.com/action/showPdf?pii=S0140-6736%2818%2933135-0 (accessed 22 October 2019).

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Khan E, Brieger D, Amerena J, Atherton JJ, Chew DP, Farshid A, Ilton M, Juergens CP, Kangaharan N, Rajaratnam R, Sweeny A, Walters DL, Chow CK. (2018) Difference in management and outcomes for men and women with ST-elevation myocardial infarction. Medical Journal of Australia 209(3): 118-23. See:  https://www.mja.com.au/journal/2018/209/3/differences-management-and-out... (accessed 22 October 2019).

Hoffmann DE, Tarzian AJ. (2001) The girl who cried pain: a bias against women in the treatment of pain. Journal of Law, Medicine & Ethics 29(1): 13-27. See: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=383803 (accessed 22 October 2019).

Jackson G. (2015) 'I'm not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis.' The Guardian. See: https://www.theguardian.com/society/2015/sep/28/im-not-a-hypochondriac-i... (accessed 22 October 2019)

Dusenbery M. (2018) Doing harm: the truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick. HarperOne: New York.

NICE. (2017) Endometriosis: diagnosis and management. See: https://www.nice.org.uk/guidance/ng73/chapter/Recommendations (accessed 22 October 2019).https://www.theguardian.com/society/2017/sep/06/listen-to-women-uk-docto...

Bevan G. (2019) Endometriosis: Thousands share devastating impact of condition. BBC News. See: https://www.bbc.co.uk/news/health-49897873 (accessed 22 October 2019).

Endometriosis UK. (2019) BBC research announced today is a wake-up call to provide better care for the 1.5 million with endometriosis. See: https://www.endometriosis-uk.org/news/bbc-research-announced-today-wake-... (accessed 22 October 2019).

Devlin H. (2018) Government halts vaginal mesh surgery in NHS hospitals. The Guardian. See: https://www.theguardian.com/society/2018/jul/09/government-halts-vaginal... (accessed 22 October 2019).

https://www.bbc.co.uk/news/health-44763673 .  Sling mesh

Greenwood BN, Carnahan S, Huang L. (2018) Patient-physician gender concordance and increased mortality among female heart attack patients. Proceedings of the National Academy of Sciences of the United States of America 115(34): 8569-74. See: https://www.ncbi.nlm.nih.gov/pubmed/30082406 (accessed 22 October 2019).

Kiesel L. (2017) Women and pain: disparaties in experience and treatment. See: https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experi... (accessed 22 October 2019).

Endometriosis UK. (2017) It takes an average 7.5 years to get a diagnosis of endometriosis – it shouldn’t. See: https://www.endometriosis-uk.org/news/it-takes-average-75-years-get-diag... (accessed 22 October 2019).
 

 

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