Is the end in sight for the gender health gap?
For generations, women have endured their health concerns not being taken seriously. But now a landmark overhaul of health services promises to put women’s needs front and centre
The joint pain started in her early twenties. Elinor Cleghorn also experienced migraines, nausea and mental health issues, triggered by the agony. The pain was sometimes so debilitating she couldn’t walk. She’d visit doctors hoping for answers. She got none.
‘Doctors would invariably say, “Maybe it’s your hormones,”’ she says. ‘I was never referred for any tests, it was always fobbed off, dismissed and I was always belittled.’
Eventually in 2010, after seven years of excruciating pain, she was diagnosed with lupus autoimmune disease, but the diagnosis only came about because of a complicated pregnancy, which triggered a flare-up that manifested in her unborn baby having a heart condition.
‘It was intimated that, had I been treated earlier, my baby wouldn’t have developed this condition,’ says Elinor, now 41. ‘Had I known I had the disease I would have approached my pregnancy differently and I’d have been monitored more closely.’
After her diagnosis Elinor started researching lupus and discovered that, historically, women have always had to endure years of misdiagnosis. ‘Seventy years later, things still haven’t improved. It’s enraging.’ It led her to write Unwell Women, about the origins of the gender pain gap.
In the UK, lupus has an average waiting time of seven years from first reporting symptoms to a diagnosis. It’s the same for endometriosis, another chronic disease affecting women. ‘Seven years seems to be very indicative of the chronic diseases that predominantly affect women,’ Elinor says.
But this might be about to change as the Government has launched a call for evidence to better understand women’s experiences of the health and care system in England. Women have until 13 June to add their voices, with the data helping to form the basis of a new, landmark Women’s
Health Strategy. The aim is to ensure health services meet women’s needs from now on.
‘We have had great responses so far, but we need more,’ says Nadine Dorries, Minister for Women’s Health. ‘I really want to understand the journeys women have gone through, from mental health to fertility to education and research, so we can listen and learn.’
For generations, women have suffered the effects of the gender health gap, with female pain and conditions under-researched or not taken seriously. As Caroline Criado Perez points out in her book, Invisible Women, our health system is designed for men, with medical research traditionally centred around men’s bodies. This failure to study women harms our health.
Activist Nimco Ali, 38, says it’s even harder for women from ethnic minority groups to get access to the treatment they need because of added layers of racism and discrimination.
‘When you look at pregnancy, Black women are [five times] more likely to die giving birth than any other women in this country, and there’s no medical reason for that. Medicine ignores their needs when they express them,’ she says.
She’s been helping to address the gender health gap in the UK in her role as cofounder of the Ginsburg Women’s Health Board. She’s also an FGM (female genital mutilation) survivor and has suffered with aches and excruciating period pains in adulthood. She doesn’t know if they’re linked to the violent practice she endured as a child in Somalia, but has felt unsupported by doctors in the UK.
‘I’ve never really got any constructive or useful feedback in terms of the pains I was feeling. I don’t think I’ve been given the service I deserve,’ she says. Now, she’s urging women from all backgrounds to take part in the call to evidence. ‘It’s a social issue, not a political one.’
The picture looks just as bleak when it comes to other conditions predominantly affecting women. Eleanor Kashouris, 26, suffers with chronic UTIS (urinary tract infections) and is doing a PHD at Sussex University into patient experiences of them. According to CUTIC (Chronic Urinary Tract Infection Campaign), UTIS affect up to 1.7 million women in the UK, and yet Eleanor says they are ‘barely acknowledged to exist – there is one specialised NHS clinic that treats it in the whole of the UK, in London’.
Weight discrimination in healthcare is also often worse for women than men, according to Dr Natasha Larmie, 40, a GP who uses her blog Fat Doctor to raise awareness about weight stigma in the profession. She says if a bigger patient comes to a doctor with a health problem, they’ll be told to lose weight, but if that patient had a slim body, studies show they’d be more likely to be given treatment.
Fatphobia is also rife in maternity care, she adds. ‘If you’re a woman who is pregnant and happens to be fat, you’re discriminated against.’ She’s had three children. ‘I couldn’t have a certain birth plan because I was “too fat” and I wasn’t entitled to it,’ she says. ‘And if you’re a woman who’s struggling with infertility, if your BMI (body mass index) is over
30, that’s it, you’re not entitled to any care on the NHS.’
Last month saw a group of MPS call for BMI – an index based on the relationship between a person’s height and weight – to be scrapped, saying it contributes to a rise in body image anxiety. Natasha calls BMI ‘utterly useless’ and says it’s based on studies of white European men in the 20th century. ‘We can only guess as to how this impacts women.’ She says this Government review will steer the conversation around women’s healthcare for decades to come, so it’s crucial women get involved.
Sadly, any positive changes will come too late for journalist Catherine Renton, 39. She’s currently on a waiting list for a hysterectomy after being fobbed off about her heavy periods and debilitating pain for a decade. She was told by doctors it was ‘part of being a woman’.
The hysterectomy means she won’t be able to have children. ‘I didn’t plan to, but it’s strange knowing that’s not going to be an option. You always think “what if ”,’ she says. After six years of suffering, she was eventually sent for an ultrasound, from which doctors were able to diagnose uterine fibroids and endometriosis. She should have had an operation last year, but it was cancelled because of Covid. ‘If, 10 years ago, I’d been taken seriously, I could have been on medication to keep things under control.’
Elinor says the care she’s had since her diagnosis has been brilliant. ‘It’s just getting the diagnosis,’ she says. ‘We need a reckoning with the way we respond, in an unconsciously biased way, to women who say they feel unwell.’
That change is needed urgently is undeniable. Fortunately, it looks like it’s coming and women’s healthcare will, finally, begin to be shaped around us.
To add your voice to the call for evidence before 13 June, visit consultations.dhsc.gov.uk/talkwomenshealth
‘Unwell Women’ (W&N) by Dr Elinor Cleghorn is out 10 June
‘I WAS NEVER REFERRED FOR TESTS. I WAS FOBBED OFF, DISMISSED, BELITTLED’