Women’s pains are still not being taken seriously

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Good morning. I’m stepping in for Stephen today, who is on holiday. Today’s newsletter is on women’s healthcare, and how Northern Ireland is falling far behind.

Chasing ghosts

At the age of 11 novelist Hilary Mantel got her period, and found herself confronting a new, inexplicable agony. Throughout her 20s, doctors dismissed her symptoms as a psychiatric illness and batted away her own self-diagnosis of endometriosis — an incurable condition where tissue similar to the womb lining grows in other places, such as the ovaries and Fallopian tubes. Finally, at 27, Mantel’s illness was named.

“But it was named on the operating table,” she wrote. “And to make me viable I had to lose part of my bladder and my bowel, my womb and my ovaries. I woke up to a strange future — childlessness, a premature menopause and a marriage, already tottering, that would soon fall apart.”

In her hospital diaries and memoir Giving up the Ghost, Mantel gave visceral language to endometriosis, which, despite affecting one in 10 women, had for so long been under-researched and parcelled off with period pain.

A report by the Royal College of Obstetricians and Gynaecologists suggests that not much has changed. Mantel was in a long line of women whose gynaecological conditions, even today, are being ignored or deprioritised because they are classified “benign”. (RCOG is campaigning to stop clinicians using the word “benign”, which is “misrepresentative and extremely unhelpful” when describing women’s health issues.)

From the start of the pandemic to August, gynaecology waiting lists have grown 91 per cent — more than any other area of medicine, figures from LCP Analytics show. According to a survey by RCOG, three-quarters of women reported their pains worsened while on the list. “We are letting women and people with these conditions down badly . . . action needs to be taken to make sure gynaecology doesn’t continue to be seen as a second class specialty, or symptoms like heavy bleeding normalised as part of women’s lives,” said Dr Edward Morris, the RCOG president.

Endometriosis takes an average of eight years to diagnose in the UK, and costs the country £8.2bn annually. Severe cases require specialised surgery. Still, it took until 2017 for England’s National Institute for Health and Care Excellence (Nice) to release its first ever guidance to doctors for dealing with it. The main recommendation? “Listen to women.”

Giving evidence towards England’s first-ever women’s health strategy, launched in July 2022, thousands of women reported they spent months and years advocating for themselves to secure a diagnosis for their illness — and often didn’t have the opportunity to discuss treatment options.

In Invisible Women, the FT business book of the year 2019, Caroline Criado Perez spends a chapter chronicling the failure by the pharmaceuticals industry, data collectors and healthcare system in addressing the specific needs of women. “Female physical pain is far more likely to be dismissed as ‘emotional’ or ‘psychomatic’,” writes Perez.

Political stalemate

But this wider narrative of women’s neglect obscures the growing problem of regional disparities. Northern Ireland, paralysed by political deadlock since February, has the longest NHS waiting lists for gynaecological care in the UK.

Campaigners for endometriosis awareness in Belfast told me that almost all women they know have had to go private. Some are borrowing money from friends and family, or taking out loans, to pay for surgery.

“I’ve come across women whose bodies have been permanently damaged because they didn’t get care for endometriosis quickly enough,” said Hayley Scott, who founded Endo Warriors Northern Ireland, an endometriosis support group, when she was undergoing a second surgery for endometriosis in March 2021. “We don’t have any fully functioning specialist centres, only a provisional one, and no endometriosis specialist consultants. There’s next to no surgeries happening.”

According to Northern Ireland’s ministerial targets, all inpatients must start treatment within 52 weeks, but as the chart shows, no trusts are meeting this target for gynaecology. (The same target applies to outpatients; 32,378 women were waiting for a first appointment at the end of June 2022, and over 12,600 of those were waiting more than a year).

Something Scott said in our chat caught me off-guard, as I hadn’t realised it before. “You can’t know what impact endometriosis is going to have on your fertility until you try for a baby. That’s how a lot of women discover they have it in the first place.”

Endo Warriors is not only a source of solidarity, a space to feel heard during the darkest times, it’s become the principal hub of information about what’s available. “There’s no government to help put anything in place, so women are feeling totally isolated and hopeless because they don’t know where to turn to,” said Scott.

According to Northern Ireland’s fiscal watchdog, the lack of an executive — still far from being restored after London decided to extend Stormont’s deadline — is exacerbating the projected £650mn budget overspend, with little assembly scrutiny. “Even in normal times the department of finance is in a less powerful position than the Treasury to control departmental spending,” the Fiscal Council report reads.

Chris Heaton-Harris confirmed he would cut the MLA salary — which would be £37,337 if legislation is passed — but this is cold comfort to Endo Warriors, who said assembly members have snubbed or ignored their multiple attempts at discussion. “That infuriates us because these people are meant to be our representatives. They’re not sitting in government now, so why are they not more willing to meet us?” said Scott, who said she offered them information booklets and feedback from the group. Menstrual health is not a mandatory part of the curriculum in Northern Ireland, unlike in England.

Morris told me political instability in Northern Ireland has likely “contributed negatively to elective recovery”. RCOG has recommended mutual aid across different regions, giving patients the option to seek care outside of their local area if this means they could be seen earlier (England’s NHS is considering this for those waiting a long time.)

But the biggest disparities are across UK regions, and for many women, travelling so far is not an option. In any case, such solutions are not nearly bold enough to smooth regional disparities, Morris admits. “People at the top need to stop and question why the specialty which exclusively concerns women is the worst affected by backlogs.”

I put this to the Department of Health. “Women who have cancer or suspected cancer are prioritised for surgery . . . While it is acknowledged that the provision of endometriosis services in Northern Ireland needs addressing, severe budgetary challenges mean that it has not been possible to fund service developments in 2022/23,” a spokesperson replied.

Gradual improvements aside, the state of gynaecology remains depressing, not least because it is a story not of inadequate science but ultimately of a lack of priority and political and economic will. The scale of the challenge is daunting, but one simple principle at the foundation of all this is the importance of “listening” — we cannot achieve sustained global improvements in women’s health outcomes without this kind of care.

Now try this

A new weekend habit of mine is checking Too Good to Go, an app which lets you save fresh food going spare from restaurants, cafés and shops, usually at closing time. Most Sunday evenings now, we collect a big bag of sourdough/cakes from our local bakery in Bethnal Green which would otherwise go to waste (I pay £3.50 on the app). It’s an affordable way of sating our urge for a weekend treat.

On Monday November 14, FT Schools is hosting a free economics webinar online with senior FT journalists and guests. They will discuss and answer questions from students and teachers on topics from globalisation and green energy to government budgets and Brexit. 

See the full agenda for the afternoon here, and visit this page to sign up and submit your questions to the panel.

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