Invisible Women: miscarriages don’t keep office hours

Sep 20, 2021

Greetings GFPs! Just a quick intro today as we have a MAMMOTH gender data gap of the week to get through. For those of you who were unable to make the Pregnant then Screwed event, well you missed out on gems like this (click to view 40 second taster vid)

I've also put it up on the Invisible Women YouTube channel and you can catch up there.

GFP LIVE x Pregnant then Screwed — www.youtube.com CCP interviews Joeli Brearley, founder of Pregnant then Screwed. Warning: there are some graphic descriptions of the post-partum body towards the end of the ...

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Donate to help our work - Pregnant Then Screwed Your donations will help us to support women who have experienced maternity or pregnancy discrimination by providing free legal advice.

This week’s newsletter is kindly sponsored by Elvie.

Elvie was born out of the frustration of one woman: Tania Boler. After Tania had her first child, she quickly became fed up with the lack of innovation in tech solutions for women who have been pregnant and/or given birth. She also felt frustrated with the cultural norms that stop women from talking openly about their bodies. And so, in true GFP fashion, she decided to do something about it. That thing was founding Elvie, a company that produces tech that women actually need and want by doing that revolutionary thing: asking women what they want and need.

Elvie’s product design process always starts by listening to women, finding more about the challenges they face - and then applying world-class design and engineering technology to create better solutions that work with women’s bodies.

Check out their smarter technology for women here

Gender data gap of the week

My dear GFPs, you may remember that a couple of weeks ago I wrote about the Scottish women’s health plan and in particular highlighted the shift in the treatment of miscarrying women in the Scottish NHS.

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I also tweeted @NHSEngland myself

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To which the response can be summed up as follows:

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From the NHS, that is. From women -- so very many women -- the response was an outpouring of trauma into my twitter mentions. And the thing that really struck me was how similar their stories were. The same things kept coming up again and again. I am not going to include every story I was sent, but I am going to highlight a few of the worst that illustrate the general themes. So, again, be warned, this gets brutal and may well be triggering for some. They made me cry.

There were the women who had the misfortune to miscarry at the weekend or worse, a Bank Holiday weekend

One woman ended up sitting in a pool of her own blood in A&E for 5 hours because gynaecology refused to admit her -- until a blood test showed she had ACTUAL SEPSIS. When she miscarried again, she dealt with it at home alone. "I didn't have the confidence to ring the EPU [early pregnancy unit] for advice."

The women who were called and sent letters reminding them of their upcoming antenatal appointments

It was quite staggering how often this came up. One woman was actually sent an "angry letter asking why I missed my appointment and how I was wasting NHS resources. Then 4 months later with my midwife couldn’t ‘register’ me as my lost pregnancy was still registered in the system and she needed administrator rights to override it."

Related: the women whose notes were either not passed on, or not read by their doctor

I lost twins at 23 weeks. The medical professionals didn’t bother to read notes and one even congratulated me on twins. Every time I had to explain again that I had delivered dead babies.

After the third [miscarriage], I went to my GP to ask for tests which I got at a hospital nearby. It took months to get the results. In fact, I was pregnant again before I got the results. My GP chased the hospital and didn't get the results before I went on holiday (months after the tests), where I had my fourth miscarriage. The results of the tests, which the hospital had, but hadn't communicated, suggested that I needed to take heparin daily. I think this saved my fifth pregnancy (luckily I had a beautiful baby boy this time), but it could have saved my fourth.

...even on the same day the miscarriage took place

I had a miscarriage and was only told at my 12 weeks scan that that baby had died. Was sent into a room to be seen by the registrar who came in, didn’t bother to look at my notes, and cheerfully said ‘congratulations! So what can I do for you today?’

The women whose dead babies were referred to as "the products of conception" or "cells" or "fetal tissue"

my miscarriage was referred to as "the products of conception" and disposed of in a biohazard bin while I was present.

Young male doctor, as I was sobbing, immediately after miscarriage - “it was just tissue”

SO MANY women commented on this. One medic on twitter defended the use of this language on the basis that they use the same form for abortion and miscarriage and women having an abortion don't want to hear the word baby. And I don't know, here's a rocket science idea: USE A DIFFERENT FORM??

Oh, and in related miscarriage is not abortion news:

I was told they couldn't give me the drugs to induce miscarriage (everyone agreed the baby had already died) unless I agreed to have it written on my notes that it was an abortion.

The so very many women who had to miscarry surrounded by happily pregnant women and their babies

I had a late-term miscarriage of a very wanted pregnancy. I was taken into hospital by ambulance in severe pain, bleeding and distraught. [The paramedic] wheeled me in and left me facing a wall in a corner as this was the nearest he could get to privacy. I was wearing only a bloodstained t-shirt with a blanket from the ambulance over my lap, and waited 45 minutes in pain whilst happy couples went past for their appointments.

I was on a ward with people who were having regular pregnancy checks for hours while waiting to be seen during my first miscarriage after they'd confirmed that the foetus had died. It was awful.

I wrote about my own experience of this here:

Apparently A Streamlined Process Is More Important Than Sparing A Bereaved Woman Further Pain.' — graziadaily.co.uk

One in ten women will experience a miscarriage in her lifetime. Globally an estimated 23 million miscarriages take place every year. By the time you’ve finished reading this article, 88 women will have miscarried. And yet despite miscarriage being such a common experience — or perhaps because it is so common — the evidence around it, and the treatment for it, remains patchy at best.

For several women, their experience of having to be around women whose pregnancies and families were progressing normally, was why they delayed seeking medical attention the next time they miscarried.

I avoided calling an ambulance when I was at home, so faint with blood loss that I couldn’t lift my head off the floor, because I knew I’d be taken to a mat ward and couldn’t face it.

It's why I didn't go for medical help the next time it happened, until I couldn't remain conscious.

Several women also mentioned having to return repeatedly to the early pregnancy or maternity unit, again having to pass the gauntlet of pregnant bellies and new-born babies, just for follow-up blood tests

This was one of the things that made me most angry when I was miscarrying, having to return repeatedly, on my own (because of pandemic restrictions) to the "scene of the crime".

The women who were treated as a nuisance...or as I now call it, the "why are you here" tendency

The GP[...]got me to pee in a cup, pregnancy test was negative, she didn't know why we were there, I wasn't pregnant any more

the sonographer asked why I was there because there were no ‘products of conception’ remaining..

I was eventually seen by a (male) doctor who repeatedly asked rather rudely why I was there and was I sure I wasn’t just having a heavy period? Was bluntly told ‘because your urine sample says you’re not pregnant’ (this was how I found out I had definitely miscarried).

...or turned away, and told they had their dates wrong...

told to come back *2 weeks* later in case I had my dates wrong. Spoiler: still a miscarriage

...or told that they had never been pregnant in the first place

I have a medical condition that may make miscarriages more likely. I was told I wouldn't receive investigation or treatment until I had 4 miscarriages. I went to my GP after my first, because I wanted it recorded. He wouldn't because I couldn't prove my pregnancy.

Here I'd like to pause for a little bit of context about why these annoying women "were here". The current rule for the NHS is that your miscarriage will only be investigated after you've had three. This rule was highlighted by a lot of women as one they would like changed.

It would have been easier not to have to wait until after 3 miscarriages to be referred for investigation. A blood test identified Lupus Anticoagulant, use of Blood thinners can prevent miscarriage. Maybe they would've prevented previous? Will never know...

This rule arguably contributes to the insensitive treatment of women who are not yet at their third miscarriage

There were nights I bled so heavily it woke me up, I would just sit on the toilet in the dark for hours in the middle of the night because the toilet was easy to clean. I would phone periodically to let them know I was still bleeding but the response was "you're on the gynae waiting list, what do you want me to do"

It is also not recommended by The Lancet, who in April this year published a special series called Miscarriage Matters (a very apt pun, because based on the stories I have received from women, it very much does not.) The three miscarriage rule, says The Lancet, "is ideological, not evidence based," and it "has created a pervasive attitude of acceptance of miscarriage, urging women to “just try again." This attitude not only "underestimates, and risks dismissing, the personal physical and mental consequences of a miscarriage," but has also "affected the availability and quality of care that women receive after a miscarriage and does not accurately reflect the evidence on management."

And what are those physical and mental c0nsquences? Well, apart from the serious psychological impact, "previous miscarriage is associated with a higher risk of preterm birth, fetal growth restriction, and other obstetric complications in subsequent pregnancies. [It] is also associated with a higher risk of long-term health problems for women, including cardiovascular disease [and] venous thromboembolism."

As the authors point out, therefore, a history of repeated miscarriage might represent an important data point for reducing a woman's risk of future cardiovascular disease (the number one killer of women in Europe and the US, let us not forget). Are these risk factors used in any of the commonly used heart disease risk prediction models, or any of the AIs proudly heralded as predicting heart attacks five years before they happen? Are they f*ck. Just women's issues nothing to see here 🤪

And as a "women's issue," naturally the data is woeful. In fact, there isn't even a universally agreed-upon definition for what constitutes a miscarriage, making international comparisons more or less impossible -- that said, most countries, including the UK, don't publish this data anyway. In fact, we don't even collect it properly: only women who miscarry at a hospital will have their miscarriage recorded.

The perception of miscarriage as a single event with little to no relevance to a woman's health more broadly has, says the Lancet, "resulted in a deficiency of high-quality epidemiology, and trials for management and prevention that should be available to guide practice and guidelines." The lack of medical progress "should be shocking," they point out. Instead, there is "a pervasive acceptance."

Key to The Lancet's call for better data collection and more research is the recommendation that the three miscarriage rule should be scrapped:

...after one miscarriage women should have their health needs evaluated and provided with information and guidance to support future pregnancies If a second miscarriage occurs, women should be offered an appointment at a miscarriage clinic for a full blood count and thyroid function tests and have extra support and early scans for reassurance in any subsequent pregnancies. After three miscarriages additional tests, including genetic testing and a pelvic ultrasound, should be offered.

They further recommend that women with early pregnancy bleeding and a history of one or more miscarriages should be offered progesterone treatment following a health economic analysis which found that this was "more effective and less costly compared with placebo treatment ."

These recommendations on better data collection and more timely treatment are welcome and should absolutely be integrated into miscarriage care immediately. I also have some of my own to add:

1: Entirely separate treatment areas

All miscarrying women should be treated away from labour and other maternity wards. Miscarriage is a bereavement. You wouldn't host a funeral at a fairground, so don't group grieving women in with the very thing that have just lost: a pregnancy and a newborn baby

When I went for a scan, there was a one way system, so women didn't have to exit back through the waiting room in tears. This should be the case everywhere

2: Follow-up blood tests at local GP surgery

Relatedly, don't require women to keep coming back to the hospital for blood tests just to see if hCG levels are lowering normally. These can and should be done at their local GP surgery.

3: Language change

SO MANY women spoke about the pain of their dead baby being referred to as "cells" and "tissue". It would cost nothing to end this practice.

4: Automate systems

A miscarriage should automatically trigger the cancellation of future antenatal appointments: women should not have to be calling the hospital to cancel them themselves, and they certainly shouldn't be sent letters chastising them for failing to show up.

5: Ensure notes are passed on and, most importantly, read

Enough said

6: Early Pregnancy Units should be open 24/7

Miscarriages don't keep office hours so neither should treatment for them. It is not reasonable to tell a heavily bleeding woman to call back in three days.

7: Recognise that a miscarriage is not just a heavy period

Give women appropriate pain relief options and set their expectations appropriately.

8: Above all, make compassion and empathy a prerequisite for working with miscarrying women

I waited for 6 hours on a labour ward and was shouted at by a ward nurse because my husband sat on the bed to cuddle me.

The scan of my undeveloped baby was kept with my notes and I had to see it repeatedly. It was even given to me as I went into maternity assessment at the start of labour, which my husband complained about.

Many of the stories I was sent were a result of bad systems. But FAR too many were simply a result of thoughtless treatment. Together with language change, a bit of compassion would be a very low-cost way of ensuring a miscarriage isn't any more traumatic than it needs to be. As one of my respondents pointed out, "It may be routine for them but for me, it felt like my world was ending."

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Default male of the week

Right, I think we all deserve a bit of light relief after that. How's this work for you?

pelvicroar @pelvicroar

We are outraged that a patient was refused payment for physio for stress incontinence. Reason - they had a baby so it’s a consequence of their choice. Her husband‘s football related knee injury was covered. Obviously. @avivaplc - any comment? Happy to train your policy makers..

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Yes it turns out that playing football is simply not under a man's control while the propagation of the species is just "me time for dilettantes" (quoting myself there, classy)

Anyway, it turns out this is standard practice:

A spokesperson for Aviva said, ‘As is common across the Private Medical Insurance industry, pregnancy and childbirth is an exclusion on most Aviva PMI policies. The cover that we do offer when related to pregnancy and childbirth is limited to a specific list of conditions that can occur as a complication of pregnancy, which are specifically noted in our customers’ terms and conditions. Stress incontinence is not on this list.

Including in other countries...

🐨Bearing it (just) @Rutybear

@katelowe01 @pelvicroar @EverydaySexism @avivaplc Yup. That's what happened to me in NZ too. The ensure (Southrrn Cross), knocked the bladder surgery back as, even with the specialist confirming it as a post-partum issue and us being insured before pregnancy, a "pre-existing condition".

Still, can you really blame insurers?

Kate Rose @KateRos78419369

@pelvicroar @EverydaySexism @avivaplc However when I raised that men get heart attacks because of their choice to eat unhealthy foods OR men get injured more because of their CHOICE to engage in extreme sports, suddenly the excuse was that “women will get pregnant just to claim insurance 2/2

Seems legit.

GFPs fixing it

the period of the period. @periodofperiod

RESEARCH TITLES (CORRECTED)✅ ⠀ Sex disparity exists within sport & exercise publication titles. For example, research which is conducted on males usually doesn’t highlight this within the title, whereas research that includes females nearly ALWAYS acknowledges this!

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🙌 Heroic work from our girl here -- still though, WHEN ARE JOURNALS GOING TO STOP DOING THIS

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Product of the week

This week's entry comes via a GFP!

Kate and Oli @ichbinseins

@CCriadoPerez hii, adoring reader here! Thanks to you, I’m now obsessed with finding products that are actually made for my body. I recently found these hats made by vimhue (vimhue.com). (Cont)

🙌

Kate and Oli @ichbinseins

(..cont) Like so many women, I’ve been frustrated with the small, low holes at the bottom of hats and vimhue has fixed the problem! They’re also sun protective and designed to fit a woman’s head. I’m a big fan and I think they could be a good fit for the product of the week.

And CCP saw the hat and saw that it was good and so the hat did indeed become product of the week

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Next up...

Homework of the Week

GFPs, this week I was sent this tweet by a GP based in Manchester

Natalie Dawson @nataliedawson22

@CCriadoPerez I am a GP, NICE guidance for stress incontinence/genital prolapse is referral to a specialist women’s physio for pelvic floor training. Trafford CCG stopped funding this service during the COVID pandemic and there is still no sign of it being restarted.

And then this

👻 Sally Raccoon 👻 @YarnandCrime

@CCriadoPerez My vaginismus treatment was stopped. Yes, it sounds non-urgent, but I was 3 years overdue a smear, because, well, they just shrug at you when your fanny won’t open.

and this

mcochrane_13 @mcochrane_13

@nataliedawson22 @CCriadoPerez I was diagnosed with POP in Oct 2020 by the surgery nurse, referred to nhs Gyn, only had a phone consult (which was laughable), referred to physio…still waiting on an appt! 😐. Went private, formally diagnosed by a consultant, went private physio and now doing much better.

and this

madvixen83 @madvixen83

@CCriadoPerez No access to contraceptive injections at my surgery for a significant period of time. This went against all the guidelines but complaints and comments were ignored.

and this

Women deserve better 🇪🇺 @jayemzdee

@nataliedawson22 @CCriadoPerez All of my pelvic health physio was stopped during the pandemic

and this

Alice @AliceStdntNurse

@RMatthewsPsyEdu @JANEMORTSDRIZZ @CCriadoPerez @PregnantScrewed My friend is approaching 6wks PP, she called her GP to book a 6wk check and was told 'GPs don't do that anymore, it's the HV job'. Friend phoned HV who was shocked & said this was not the case and that her GP should be seeing her. How do mums know who is right/wrong? 🤯😓

Alice @AliceStdntNurse

@CCriadoPerez @RMatthewsPsyEdu @JANEMORTSDRIZZ @PregnantScrewed She said they told her 'because of Covid we dont see people for 6wk checks, it's the HV job when they are with you'. Which the HVs were not aware was the case 😳 so is anyone actually doing 6wk checks or are mums just left, because it appears like 'as long as baby is OK...'

all of which led me to think....

If you're an academic who has the resources and the desire to take this on as a research project, hmu. I have a couple of academics who already expressed an interest on twitter; it would be great to set up a working group on the issue. If you're up for it, just hit reply to this newsletter!

As for the rest of you, I'd love to hear your experiences. I've set up a survey which you can access here. Shouldn't take you more than a minute to complete; I'd be very grateful if as many of you as possible would!

That link again: