NHS - Spot the Difference

[WTactualFNHS]

I happened upon a short YouTube video about a talented young woman who had Turner syndrome. Several women in the comments said they also had it and it was clear there was a range of symptoms and severity in women affected. I decided I'd like to know more. Googling brought up the NHS link

https://www.nhs.uk/conditions/turner-syndrome/

Reading it I noticed something so I checked out the NHS page for Klinefelter's syndrome

https://www.nhs.uk/conditions/klinefelters-syndrome/

to see if it had the same omissions. It didn't.

They're both chromosome disorders (DSDs). Turner syndrome affects only girls and women, Klinefelter only affects men and boys.

In case you haven't guessed as far as I can tell the words girl/s, woman and women seem to be entirely missing. The word females is used once at the start. I thought perhaps the NHS had taken a lead from the Turner Syndrome Support Society but that's not the case.

I realise this isn't news, this probably isn't the first thread about it, but it made me sad.

I've used the option on the NHS website to ask them why there is the disparity so i've name changed to stop the, probably tiny, risk of my usual name and posting history being linked.

If I get a response I'll update. If anyone else wishes to query the NHS please feel free.

I got what I expected, a non-answer

Thank you for contacting the NHS website. Our aim is to provide information for everyone, and to use language that is inclusive and respectful. You can find out more about the NHS website's policy on inclusive content (in the NHS digital service manual).

There are thousands of pages on the website and we review them over time. This means that some pages have been updated recently while others haven't yet and this leads to differences in approach across the site.

We are working towards being clear and consistent across the website. [If appropriate] In the meantime, We have noted your feedback so that we can take it into account when we review the page.

I rejected the reply

The reply I received does not address my query. The page on Turner Syndrome appears to have been written to include 'everyone'. Although it is a DSD that exclusively affects women and girls. I assume this was done to avoid hurting the feelings on what must be a tiny number of people who are affected by the syndrome but, for whatever reason, do not wish to consider themselves as women or girls. If this is the case then I believe it is within the capabilities of the NHS bureaucracy to write something that would protect the feelings of this minority without completely erasing reality of the majority of sufferers. The other possibility, that the page was written like that to protect the feelings of men who believe they are women, is so crass I refuse to think that could have been the case. As men, no matter the sincerity their feelings of being women, can never be sufferers of this particular DSD.

This brings me to the contrast with the page about Klinefelter Syndrome, a different but analogous DSD that affects only men and boys. This is something that is clear from the page which is liberally sprinkled with the phrase. There appears to be no attempt for the inclusivity so marked on the page on Turner Syndrome.

Could I have an explanation for this disparaity?

I noticed the page on Turner Syndrome is not due to be updated until May 2028. It should be amended and the grotesque erasure of women sufferers corrected immediately.

Could I also be informed if I am actually communicating with a person or if these queries are dealt with by AI?

TIA

Yes complaining to large public bodies like the BBC or NHS just gets identikit copy and paste responses. They’re just shit and captured. The NHS take absolutely nothing on board unless someone dies (or gets misgendered).

I’d say the main difference is the Turner syndrome uses ‘you’ and the Klineflter page talks about ‘men and boys’. At least the NHS does admit in its literature if not in its HR policies that female is a definite thing!
The Klinefleter page is up for review February this year, so it will be interesting to see if that is the main change. I think it is probably more accessible to use ‘you’ in terms of getting people to engage with their health

Wow, now that you point it out OP, the difference is bizarre! ‘People with Turner’s’ — that’ll be women and girls, then? But let’s not use those embarrassing words…

Only slightly connected but I was very pleased to see big information adverts on Faceache for UHNM ( my local hospital) and their Maternity services, the term Pregnant Women used throughout.

While I was drafting my reply I noticed that the mothers of the baby girls weren't mentioned either. I didn't think much of it until I noticed

The risk of a woman having a son with Klinefelter syndrome may be slightly higher if the mother or father are older.

<sigh>

but I wanted to keep my reply short.

I think that difference is solely because they had to provide info about the risk factors that isn't the same as in the other article. And surely we should be happy at the terms "woman" and "mother" occurring, regardless of which article they appear in?

While I agree that sex-specific terms are used more frequently in the Klinefelter article, it doesn't feel to me that the Turner article deliberately erases sex-specific language, given that it makes it clear in the first sentence that the disorder affects females only.

I do think it could be tidied up at review, but it wouldn't be something I would complain about. I've seen much worse

I found this construction bizarre; "We are working towards being clear and consistent across the website. [If appropriate]". When is it not appropriate for NHS comms to be clear & under what circs do they favour inconsistent messaging, FGS?

I think it looks like "[If appropriate]" is an instruction to NHS staff who are using template text, which has been accidentally included in the cut-and-paste. The square brackets are the giveaway. It means something like Include this sentence if it is relevant to the query you are responding to

@MyThreeWords That's a reasonable inference but having seen the parade of aproximately-educated but nonetheless credentialled ninnies whom the NHS have trotted out as Tribunal witnesses, one is forced to wonder if the correct use of square brackets that you suggest is really within their power.

I read an article in Nature Journal yesterday about precocious puberty, and it had a disclaimer saying why they had used the binary terms male and female in the article (because those are the terms the researchers used) 🙄

Interesting disparity.

It's also important to note that for some people with DSDs, accurate acknowledgement of their sex status is very important in validation of their reality (as opposed to unverifiable identity) eg a girl or woman, growing up with a dsd or perhaps experiencing the process of an unexpected DSD diagnosis during puberty needs accurate language. Perhaps she is already feeling 'not quite a woman' or imperfect due to her medical diagnosis, perhaps she is feeling a challenge to her sense of self, or the loss of a planned or imagined future due to DSD related anatomical, hormonal or fertility issues. The clear language that Turner's syndrome is a sex specific DSD affecting women and girls is helpful, framing her as part of the female sex, a variation of female and not as some other/in between /freak or sexless creature.

Interesting to note how language has been coopted to support the identity based, self chosen and non-reality based demands of gender identities, while the importance and impact of accurate language on the validation of some other groups reality is ignored.

It also has to be born in mind the NHS is writing for a reading age of around 10 and the language and sentence structure has to reflect that . ( which is dispiriting in and of itself)
I don’t know if health literacy takes into account feelings, that’s probably the niche for the charities

This is the kind of issue programmes like Woman’s Hour should be highlighting, especially considering the shoddy nhs response.
I wish I could tag them on this thread!