Use of “inclusive” language in medical leaflets etc

[TimeandMotion]

As I understand it, one of the pillars of GC thinking is to resist the creeping use of “inclusive” terms in the medical context such as “people with cervixes” or “pregnant people” or “anyone who has ovaries”. I’ve seen examples of this and find the erasure of the word “women” and “female” quite chilling.

What I don’t understand is this: every trans person knows they are trans. They are well aware of what organs they do and don’t possess because they have either been through a complex set of medical procedures, or they have chosen not to transition medically. They have probably been advised during that process (if they had surgery) that they are still at risk of cancers etc in those organs.

Surely a trans man can’t find it that difficult to read a leaflet and say to themselves “I know this says women and I live as a man now but I understand that this applies to me because I have these organs”. Or, conversely, a trans woman thinks “I know this says women but I can ignore it because I live as a woman but I am perfectly aware that I don’t have a uterus”. There is no medical need for each leaflet to remind a trans man that this could apply to him too.

On the other hand, there are women out there who don’t have a good handle of their own biology, whether due to youth or lack of education. It’s important for them to say things like “women are at risk of this disease”. By their very history of having struggled with identity vs sex, trans people do not lack this awareness. And don’t they have any empathy for other members of their chosen gender who need to be protected like this through the use of simple, understandable language?

I know that I am not saying anything new or insightful here, but I am really failing to understand why this medical language thing is a hill that trans people feel the need to die on…or why the NHS have taken this approach.

But I am also painfully aware that what I have just said may well look like a classic example of “look at the words on that leaflet, it’s political correctness gone mad I tell ya”. And I know I’d be the first to say that an official form should, for example, never assume that all married women have husbands, or men wives.

Most are, according to the NHS, and there is a manual data field that can be updated on GP patient records so they are not cpntacted. But you are right, not 20%, somewhere between 10-20%.

This also uses the language of "women and people with a cervix"

https://www.nhsggc.org.uk/media/267749/faq-for-hcp-and-gp-cervical-incident-final.pdf

This isn't just leaflets it's everywhere. I listened to a woman from the endometriosis charity the other week and she only uttered the word woman once. From what she says, if you didn't know, you wouldn't have been 100% who it affected.

Before I give to charity now I always check what their website and message is like. No 'woman' or any ridiculous language then they are not getting any of my money.

It's quite common to hear things like "1 in 10 people have endometriosis". It's often not clear whether it's a straight find and replace of "people" for "women" so 1 in 10 women, or whether it's 1 in 5 women in the population also including men.

Then they aren't following the current NHS data guidelines. The entire impact of this will land on transgender and non-binary people.

There is a data field for "An indication of whether the person's gender identity is the same as their gender assigned at birth."

Before I give to charity now I always check what their website and message is like. No 'woman' or any ridiculous language then they are not getting any of my money.

That is a very good idea, and something I've been meaning to do. Scan down the list of charities I give a tenner a month to or whatever, and bin off those who come up with this sort of bollix. Plenty of good causes the savings can go towards instead.

You make a fair point in this context - I was amazed by the proportion of women who have had a hysterectomy.

You can blame Stephen Whittle for this - the privacy aspect of the GRC means sharing info re: a trans person’s natal sex can incur a criminal penalty.

And as no one knows which trans person has a GRC and which trans person doesn’t policy has to err on the side of caution and not share that info at all, even if it’s detrimental to the health of trans people.

The NHS records transgender status in private medical records, so I don't think this applies. They just record gender and transgender status - the GRC doesn't come into it. You may well know better.

The law had to be amended just to do the GIDs research, but that amendment only applied to paediatric patients.

https://www.nhsggc.org.uk/media/258438/sharing-trans-information-doc.pdf

https://www.gov.uk/government/publications/the-gender-recognition-disclosure-of-information-england-order-2022-equality-impact-assessment/the-gender-recognition-disclosure-of-information-england-order-2022-equality-impact-assessment

It's not liable for criminal prosecution unless they actually have a GRC. So the GRC is relevant whether known about or not.

The NHS already translates leaflets into a huge number of languages, it would surely be a good use of Stonewall or mermaids money to fund the translation of a gender neutral one, for those who need it.

The rest of us can carry on as normal, as affected as we are by the Cantonese/Urdu/Spanish versions.

It would be interesting to know if gender neutral rewording happened in all languages or just the English one!

From joes cervical cancer survey below

Half of women don’t know what the cervix is

Fri, 09/06/2017 - 14:47

Cervical Screening Awareness Week taking place from 12-18 June
Almost half of women (44.2%)[1] are unaware of what the cervix is, unable to correctly identify it as the neck of the womb (uterus). One in six could also not name a single function of the cervix with less than half (41.40%) aware that it connects the womb to the vagina and only one in three knowing that it provides a seal to hold the baby in when pregnant.

Jo’s Cervical Cancer Trust is releasing these new statistics at the start of Cervical Screening Awareness Week (12-18 June) to encourage women to talk about and protect their cervical health.

So excluding the word woman does really matter

My GP practice (Scotland) put out an appeal for patients to turn up for routine screening for a variety of health conditions, not including prostate checks. First up, cervical screening - see picture. I emailed them and said I was bothered by the lack of straightforward language and how that would affect those with learning disabilities or those for whom English wasn’t their first language. They were understanding and promised to change it on the website!

To be fair to them, they're in a specialty area where we have significant staff shortages so probably too busy to take much time to think about it critically.

HCP are able to share relevant clinical information with other HCP without patient permission.

They may also share in other circumstances, such as safeguarding or to prevent a crime.

I'm not a lawyer. Just like whoever wrote that, I guess.

You really do need to rewrite rather than just gender neutralise though - for example, trans women do need to consider breast screening, as a small number of men do get breast cancer, and taking female hormones long-term raises their risk.

Also in some cases we don't know the impact of hormones - for example, screening for abdominal aortic aneurysms is only offered to men as they are at 5x the risk of women, but we don't know the impact of taking testosterone on female risk factors. The Guardian had an article about research into the effects of taking artificial hormones today if I can find it again, and how little is really known.

Not sure if I've done this right: We don't know much

Largely agree except the heightened risk might not be sufficient to justify the radiographic dosage in breast ca. screening (say).* A small increase in the number of breast cancer cases diagnosed in transwomen is a large relative increase in breast cancer risk compared to men.

Over the course of the study, 15 cases of invasive breast cancer (breast cancer that has the potential to spread to other areas of the body) were detected in 2,260 transgender women that the researchers were following. In cisgender men, over the same period of time, only 0.32 cases of breast cancer would be expected to be detected.
This is why scientists suggest transgender women are 47 times more likely to develop breast cancer. However, 15 out of 2,260 is still a very small number of cases.

https://breastcancernow.org/about-us/blogs/transgender-people-breast-cancer/

*The BMJ authors have a different perspective.
This study showed an increased risk of breast cancer in trans women compared with cisgender men, and a lower risk in trans men compared with cisgender women. In trans women, the risk of breast cancer increased during a relatively short duration of hormone treatment and the characteristics of the breast cancer resembled a more female pattern. These results suggest that breast cancer screening guidelines for cisgender people are sufficient for transgender people using hormone treatment.
Study: https://www.bmj.com/content/365/bmj.l1652

de Blok C J M, Wiepjes C M, Nota N M, van Engelen K, Adank M A, Dreijerink K M A et al. Breast cancer risk in transgender people receiving hormone treatment: nationwide cohort study in the Netherlands BMJ 2019; 365 :l1652 doi:10.1136/bmj.l1652

Absolutely agree that there is a lot to be known, not least about age-groups that might benefit from screening or whether the risk is related to the dosage of hormones or lifetime exposure to them. There are some reports of greater risk of obesity amongst transwomen so it might be useful to see if that is a helpful risk stratification.

The authors report variation in the typical hormones used, especially by transwomen. The blend of hormones has changed over the years and it's notable that some are not the standard of care offered by GIDS in the UK.

A quick scamper through the study shows they're relatively young. So, transwomen who started hormones when younger might yet develop breast cancer later on in life. As above, this might not be generalisable, depending on current standard of care in different healthcare systems.

That's a good point about the risk of radiation exposure - the leaflet we were working on was based on an NHS England one, so I'd like to think they'd considered the relative risk before issuing the advice, but who knows these days?

We use Epic. Recently seen in the WPATH files. The demographic fields are 'legal sex' 'sex assigned at birth' 'gender identity ' and 'sexual orientation'. Usually only 'legal sex' is filled out, and the patient gets to choose what with.

There's an ongoing discussion about whether the age for breast screening should be brought forward to 40 from 50 in the UK. It's 40 in other countries/healthcare systems, but, in the UK, the risk-benefit assessment says it's not appropriate for the general population of women because of the radiation exposure in addition to the number of false positives and associated biopsies.

It's a different risk-benefit for women with have relevant BRCA mutations etc. and for whom screening at 40 might represent a reasonable and very different risk-benefit profile. Or, switching to additional/other imaging might be useful for the younger women, such as MRIs (too expensive/scarce for general screening use but no ionising radiation).

No. But if you haven't a clue about what a vagina is, then you really aren't going to think 'hmmm that's me' either though.

See my school friend who got an F in GCSE science.

I once taught at a girls private school - academic entrance exam and everything. 100% A to C GCSE grades. Over 80% A and A.

One of my year 11s once labelled the scrotum as "cul-de-sac" in her biology mock exam.

Assuming that people know anything much is dangerous.

Oh fecking Mumsnet formatting. A star to C. A star and A.