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Feminism: Sex and gender discussions

What should your NHS Medical Record hold about you? Sex or gender Identity?

55 replies

Barracker · 10/11/2018 12:38

Twitter Poll

There are very specific rules within the NHS relating to what sex/gender data should be held on our medical records and how it should be used.

(And those rules are not being followed)

But if you're on twitter you might be interesting to see how this poll is working out.
I'm really interested in any responses from anyone working in the NHS who ever handles medical records. Do they know whether they are handling sex or gender data?

OP posts:
Badstyley · 11/11/2018 14:20

Well yes, quite. It would be very useful for say, getting certain jobs, or in fact most jobs. Mental illness is a terrible stigma. Who wants an unstable crazy on their staff, but this way HR would never have to know.

If I have another episode I can just change back and have a different name again. I can’t identify out of my mental illness, so I could just keep reidientifying my sex instead.

I’m not really planning on trying this btw, but clearly I could if I so wished.

What would happen in this case if someone had something infectious, like HIV or Hepatitis?Isn’t knowingly passing on STIs a criminal offence? What about if a person’s records had been scrubbed? Could they then say, ‘sorry your honour, I didn’t know I had it’ and get away with it?

I can certainly see how having one’s medical history wiped might assist a certain type of person.

Barracker · 11/11/2018 14:46

Thanks for the responses.

I'll have something out this coming week that shows what the NHS should have on our medical records. According to its own policies.

But they aren't following their own guidance nor heeding their own warnings.
The infrastructure has been designed to keep us safe.
But the people using the systems have not been educated, AND the user interfaces have not been designed to the right specifications.

And so people are now at risk.

The people who devised the NHS standards for capturing sex and gender understood and anticipated the challenge of recording sex v gender perfectly.

OP posts:
Barracker · 11/11/2018 14:47

Oh, and if you're interested in finding out whether you have your apparent ladybrain recorded on your medical record this may be of interest.

OP posts:
merrymouse · 11/11/2018 14:52

Sex for everyone.

Gender identity if you have one. Much as I think it’s a load of rubbish, it is still relevant to patient care.

nocoolnamesleft · 11/11/2018 17:36

clinchem.aaccjnls.org/content/63/11/1680

Gives an example where treating by gender rather than sex seriously disadvantaged the poor transman patient.

heresyandwitchcraft · 11/11/2018 17:36

Thanks for the information regarding data, Wingbing

Barracker, I REALLY look forward to reading your analysis of the situation. Thank you for doing this work.

The records issue is a particular annoyance of mine, because doctors are just not going to challenge sex versus gender identity if the GMC guidelines/NHS guidelines say you have to change the patient's SEX on the record, no questions asked... It appears that self-ID of SEX (not a separate gender ID category) is already the recommended practice in healthcare, which as PPs have pointed out has significant implications for diagnosis/treatment/screening/protocols/tests etc. I think in the long run the conflation of sex and gender identity is doing trans people a huge disservice, actually.

It's also worth mentioning another point:

The GMC writes:
It is unlawful to disclose a patient's gender history without their consent.

When communicating with other health professionals, gender history doesn't need to be revealed unless it is directly relevant to the condition or its likely treatment.

So this means that not only is the NHS recording gender ID instead of sex, they are saying it's illegal to mention a person's sex without that person's explicit consent. NB: Of course no sensitive patient information should be shared without that patient's knowledge or consent. But when it comes to keeping biological sex completely quiet, I genuinely do not know how this would work in practice for MANY scenarios. Sex is quite a basic, fundamental thing that many HCPs need to know/share for many different reasons. In the example of the prostate specific antigen (PSA) test for a patient labelled "Female" there are only two options: either the sample is mis-labelled, or the patient is biologically male and therefore trans. So you've "outed" them simply by virtue of the test itself. Or the lab will phone up, confused, wanting verification that you've sent the right sample and will need to "out" them then by saying "yes, that is the correct patient". And if the lab don't do this, then we could be introducing an assumption that all "sex-mismatched" tests are definitely just from trans patients. This may remove a layer of safeguarding in terms of checking that the correct test has been ordered for the correct patient. Some more scenarios to consider: a person needing a urinary catheter - the HCP needs to be trained in how to insert one properly (different for males vs females). In the case of a young person coming in with abdominal pain, the HCP needs to know whether someone has a female reproductive system or a male one. In the case of ordering imaging/scans, the HCP needs to consider of radiation and whether the patient may be pregnant, and the "expected" internal anatomy needs to be communicated to the radiology team in order to properly interpret results. I can think of a million things like this where knowledge of reproductive biology is needed.

I would also argue that "hiding" trans people within the data of the opposite sex will actually make it much harder to track trans health patterns, monitor long-term outcome, and even just get good information on things like patterns of physical/mental health in trans patients. They're still a small cohort, undergoing what is very new (borderline experimental) treatment, and I think would really benefit from MUCH better data analysis. We're constantly being told about the power of "big data" and how it could help people. Researchers could maybe create new accurate reference ranges for blood tests and programme these in, create trans guidelines around long-term issues (such as trans screening programmes, bone and cardiovascular health), better understand the complexities of trans mental health needs, etc. Because it sounds like a lot of these patients are seen in a gender identity clinic of some sort, but then discharged into ordinary care. I don't know who is properly monitoring long-term trans specific health care needs as a whole cohort of patients, and finding ways to respond to their specific needs. Each GP may only see a few trans patients, so may not be able to pick up on the kinds of signals/patterns that researchers would find obvious if using a larger sample of patients. Or how monitoring outcomes can even be done sensibly if there is no sensible way of finding these patient data from searching the records...

(Sorry about the essay, I've been vexed by this question for some time.)

DixieFlatline · 11/11/2018 18:02

Gender (sex role behaviours) are medically important. Behaviour is a major risk factor in many health conditions, some obvious (STIs), some less so (social norms around diet and exercise).

This rather buys into the idea that men who identify as women are on the money and that there is a particular way of being a woman that they manage to perform. All biopsychosocial factors which are relevant to medical care should be investigated as part of assessment, not assumed from a person's listed sex or gender.

Barracker · 11/11/2018 21:49

Brilliant posts Wingbing and heresyandwitchcraft

You may be able to help me join the dots even more when I pop my findings out there.

OP posts:
R0wantrees · 12/11/2018 09:15

Sue Pascoe (Conservative LGBT+ & prospective candidate / Channel 4 'Inclusion Consultant) oral evidence to Women's & Equalities Transgender Equality Enquiry )ctober 2015:
(extract)
Sue Pascoe: When I asked my GP to change the automated system so that I did not have to press the “Male” button, that happened within a day, but he told me that my NHS record would not change and my medical number would not change, and he apologised for that. We then worked on getting my passport as soon as possible. It took me three months to get my passport, and that needed a letter from my GP and a letter from my psychiatrist, basically saying that I had permanently transitioned to my chosen gender and that I was mentally stable. I drove up to Durham, paid £80, gave the two letters over and, a few days later, my female passport came.

Quite frankly, I do not understand why we have a gender recognition process at all. What is wrong with a passport? That is what everybody else has. Why do transgender people have to have a completely different process and a two‑year timeline? If you are married, you cannot get one anyway. The only thing that it practically does different from the passport is change your birth certificate and change your tax records and your pension status. Well, for day‑to‑day life, that really is not that important, but the passport is. It is a door‑opener to services and if you go into a shop and somebody refuses to serve you, I just get my passport out and then people apologise.

Once I had my passport, my medical records got changed. It was really quite nice to get a letter from the NHS asking if I wanted to have a cervical cancer test—bizarre. One of the worst experiences, though, was when I came back from India having had my operation. I needed to have some assistance with dilation and I was sent by my GP for two days into Leeds General Infirmary and despite my medical records being changed, despite everything at my GP being female, because I had been to the hospital as Graham they had me in as male. They refused to change it in the system and here I was, I had had my operation and I was really upset, and I argued very strongly about being discharged with male papers. Anyway, that caused quite a stir and then all my records everywhere in the system were changed to female, and I have never had any problem since.

data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/women-and-equalities-committee/transgender-equality/oral/23159.html

threads:
www.mumsnet.com/Talk/womens_rights/3383926-Sue-Pascoe

www.mumsnet.com/Talk/womens_rights/3331095-Channel-4-appoints-a-new-advisor-on-inclusion

Iused2BanOptimist · 12/11/2018 10:25

Excellent post Heresy
I record information for my trust for long term nationwide monitoring of particular conditions. Gender is asked for (m/f/unknown), height and weight among other details. Bone health is an aspect of the long term follow up. We know young trans who have been puberty blocked and put on cross sex hormones are at risk of poor bone health. There will be no way of picking them out and the overall stats will be skewed.
This does a great disservice to trans people who will not get the long term follow up and treatment they need and will have to be sufficiently with it to make sure their needs are met.
It is also grossly unfair on the NHS and professionals working there. From straight forward time wasting to putting HCP's in a difficult position because they do not know the history/sex of their patient. I hate being put on the back foot, not knowing what I am dealing with. If a trans woman is invited for a smear she may not actually know this does not apply to her. The HCP will be in the difficult position of questioning and explaining. Some times it's not obvious, so it could easily get as far as attempting to do the smear and finding a difficulty. There are lots of other instances as Heresy has pointed out.

merrymouse · 12/11/2018 10:29

If a trans woman is invited for a smear she may not actually know this does not apply to her.

It's not clear that a trans man would be called at all.

R0wantrees · 12/11/2018 10:48

There was a comment on Twitter recently that a nurse in primary care had a number of males who identified as women called for smear tests, & who came. The post stated that she was advised by her practice to carry out the 'smear test' rather than advise them that it was not neccessary as of course they do not have cervixes and are not at risk of cervical cancer.
There are many aspects to this that are concerning.

R0wantrees · 12/11/2018 10:56

If a trans woman is invited for a smear she may not actually know this does not apply to her.
Should that be the case (which personally, I doubt) it represents a failure in the care that the patient has had by NHS and also by charities and organisations advocating and supporting those in the transgender community.
Humans cannot change sex.
The plastic surgery that some transwomen have does not create a vagina, cervix etc.
Cervical cancer, as uterine & ovarian are specifically female. Those females who identify as transmen do not opt out of the risks. Those males who identify as transwoman to not opt in to the risks.

A key factor in improving awareness of gynae cancers is using straightforward language. Those who have lobbied CRUK etc are obfuscating the reality and undoing the hard work & the efforts of charities, medical practitioners, women affected and their families to raise vital awareness.

Eve Appeal September 2018:
"The Eve Appeal leads a national campaign to address the stigma and taboos that stop women talking about gynaecological cancers, their signs and symptoms. Our ambition is to stop these cancers before they start and to do this we need to encourage women to know their bodies and know about all 5 gynae cancers.

Straight-talking is vital. Using the proper anatomical terms around gynaecological health, talking openly about common symptoms like changes to periods and bleeding and not using stigmatising or silly terms to describe parts of the female body are really important steps towards better awareness and ultimately early diagnosis.

Every year, we undertake research amongst women aged 16 – 65 as part of our Gynaecological Cancer Awareness Month campaign in September. Lots of our partners (supporters, clinicians, other charities, corporate supporters, women’s networks) help us spread this important message: women should know their own bodies, be able to talk without embarrassment about gynae signs and symptoms, and above all, call a vagina a vagina (and not a foofoo, a flower, a ladypart…….).

That is why, back in September of 2014 we decided to call for women across the UK to ensure that ‘vagina’ was part of their vocabulary; after a survey showed young women were less educated than their elder counterparts about the symptoms and issues around gynaecological cancers; and worryingly, more embarrassed to discuss them than older women.

Perhaps most shockingly, it’s the language of gynaecological health that proved to be a major barrier to young women opening up about concerns around gynaecological cancers, with 65% saying they have a problem using the words vagina or vulva, and nearly 40% of 16-25 year olds resorting to using code names such as ‘lady parts’ or ‘women’s bits’ to discuss gynaecological health.

This is simply something we want to stop. We need women to call things by their proper names and know what these gynae organs do." (continues)

eveappeal.org.uk/news-awareness/straight-talking-things-gynae/

Iused2BanOptimist · 12/11/2018 10:57

I can certainly think of a person who looks to all intents and purposes like a pretty young woman, recorded on YouTube saying she hasn't a clue what was done down there, doesn't want to know, "it's gross". So I would say there is every likelihood of an ignorance of possession or not of a cervix in that person's case.

R0wantrees · 12/11/2018 11:09

So I would say there is every likelihood of an ignorance of possession or not of a cervix in that person's case.
this should not ever be the case

Royal College of Surgeons 2016:
'Consent: Supported Decision-Making - a good practice guide'
Key principles
The following key principles underpin the consent process as outlined in this document:
• The aim of the discussion about consent is to give the patient the information they need to make a decision about what treatment or procedure (if any) they want.
• The discussion has to be tailored to the individual patient. This requires time to get to know the patient well enough to understand their views and values.
• All reasonable treatment options, along with their implications, should be explained
to the patient.
• Material risks for each option should be discussed with the patient. The test of materiality is twofold: whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would likely attach significance to it.
• Consent should be written and recorded. If the patient has made a decision, the consent form should be signed at the end of the discussion. The signed form is part Consent: Supported Decision-Making of the evidence that the discussion has taken place, but provides no meaningful information about the quality of the discussion.
• In addition to the consent form, a record of the discussion (including contemporaneous documentation of the key points of the discussion, hard copies or web links of any further information provided to the patient, and the patient’s decision) should be included in the patient’s case notes. This is important even if the patient chooses not to undergo treatment.
The principles set out in this document apply to treatment in an elective situation when the patient has time to consider their options."
www.rcseng.ac.uk/library-and-publications/rcs-publications/docs/consent-good-practice-guide/

olderthanyouthink · 12/11/2018 11:14

How would you do a smear test on a trans woman, who likely still has a penis??? Where do you put the speculum? If they have had bottom surgery getting a speculum in might be really difficult because it's not as stretchy like a vagina.

They could have googled what a smear test was before attending too...

What happens the the "sample" taken is it sent off and some lab worker has to figure out what's going on because you can't disclose someone's gender history? Or do they just bin in because there isn't a cervix? Waste of time and money!

Iused2BanOptimist · 12/11/2018 11:35

Rowan Bearing in mind the person I am thinking of had the operation abroad and under age.

I am however being hypothetical.
The problem is that advisory letters are likely to be sent out wrongly for reasons discussed upthread and this represents waste and the possibility of confusion.

Plus the wider problem of lack of appropriate long term follow up, with the wider knowledge base that should follow from that.

SporadicSpartacus · 12/11/2018 13:24

I work in financial services and I’m just thinking about the opportunity for insurance fraud.

‘Yes, hello, I’d like to take out a life/critical illness insurance policy as a woman with a completely blank medical record’

Probably more favourable premium-wise than being a man with several pre existing conditions who’s been repeatedly advised by GP to cut down on weight, drinking and smoking...

Badstyley · 12/11/2018 13:51

I take a type of medication where the therapeutic index is very narrow. I have to have blood tests every 6 months to check my levels and to check my renal and thyroid function, because the medication also messes up kidneys and thyroid eventually. So, if someone who is taking the same medication as me changes the sex marker on their health records, what is the procedure for insuring the bloods are measured against the correct ranges? Getting this wrong could have serious consequences.

AsMuchUseAsAMarzipanDildo · 12/11/2018 14:22

Eugh! I work in the NHS and it gets my hackles up that our software has “male” and “female” listed under “Gender”...it’s “sex” ffs

Iused2BanOptimist · 12/11/2018 14:42

Sporadic I also have past experience working in financial services and I'd be interested to know what their provision is for this. Income protection Insurance has very strict terms, the underwriters can be brutal with their exclusions. Time off sick for stress? That could mean a total mental health exclusion. They definitely want to review past medical history. Perhaps some of this is covered by laws relating to discrimination. Perhaps there hasn't been a challenge yet.

heresyandwitchcraft · 12/11/2018 15:20

Sorry, some more thoughts. I have FAR too many on this. (Don't encourage me with your kind feedback!)

I think that given the muddle already in the public about sex and gender, the fact that medical services are adding to this by seemingly not making a conceptual distinction in their records is very worrying. I strongly suspect from Barracker's comments that the system is built in such a way that the NHS COULD record sex/gender ID separately, if they wanted to.

I actually wouldn't have a hard time imagining a case where someone who is biologically male (or biologically female) was unsure as to whether they have a cervix or not. Or really, anything about anatomy/physiology getting confused. Because it seems to me that we have grown adults saying male-bodied individuals can have menstrual periods now... They CANNOT.

In my view, we should just move to a place where you can record sex, record gender id, and if a patient is trans then so what? That should mean as much as their occupation, weight, if they are a Jehova's Witness or whether they have asthma. Just an additional descriptor that gives you some information about their potential risk factors for certain conditions, how they wish to be addressed, and their beliefs. Nothing more. No big deal.

But sex is just NOT an optional extra, or something that can be ignored. We can't change sex. I cannot get my head around the fact that anyone thinks that, in essence, HCPs should be encouraged to record what are actually medical falsehoods in their documentation.

Additionally, patients usually have to explain their medical histories multiple times when they are treated for a condition. Each time a new HCP comes along, they'll tend to ask more questions (sometimes very detailed, sometimes to get new info, sometimes to confirm what's written down, etc). This can get tedious, even when the information isn't too sensitive to talk about. I could imagine that being reminded of your sex if you have dysphoria would be exceptionally troublesome in such a process. However, my question is: if you are trans, would it not be preferable to somehow just record sex and gender identity somewhere safe in your record ONCE (and you could maybe make the "sex" part only for HCPs with verified access to the notes or something, and theoretically have gender id as fluid as you like) instead of potentially having to keep explaining the situation whenever someone gets confused because they don't know about a sex/gender ID mismatch? I don't know.

As for your question about bloods Badstyley - it's an excellent one. The normal (reference) ranges for test results can vary depending on the lab, and are usually programmed into the systems themselves. We've said already that these can be different for males/females. The system is helpful as abnormal results tend to be automatically highlighted by the software when the HCP is reviewing them. If someone's blood test is outside the reference range, it might show up as red, for example, to draw the HCPs attention. In the case you mention, I would suspect that the HCP would need to manually check results against the reference ranges for the opposite sex. This is sub-optimal, because it relies on the HCP remembering to do it, could lead to mistakes (if they're reading the result/reference range wrong for some reason), is more time-consuming, and if there is an on-call HCP they might not know that this is the protocol for this person's results. In my opinion, it's definitely a risk in terms of patient safety because it introduces a potential error in interpretation. An option to mitigate this might be to make an alert/note in the system to remind HCPs to manually review sex-specific results using the normal ranges of the opposite sex. BUT this would "out" the trans patient to anyone using that system to check those results, so you'd need to get explicit patient permission beforehand...

OlennasWimple · 12/11/2018 15:26

I'm relaxed about gender ID being recorded as an optional extra data field. Some GP surgeries call in patients for their appointments by the nurser or doctor standing in the waiting room and calling out their name - they need to know that when they call for "Phillipa Jones" and 6'5" 22 stone bloke stands up, they haven't misheard, that is indeed their next patient

I find it almost chilling, how little regard for the trans population some experts seem to have. Surely it's in everyone's best interests for their medical records to be comprehensive and allow for later cohort data analysis? What if there are horrific consequences to starting Lupron before the age of 15 but these drop off significantly if the patient waits until they are 17? What if there are unforeseen health benefits to taking a particular combination of drugs, that the wider population should also consider taking? Don't TRAs want to know this sort of stuff?

R0wantrees · 12/11/2018 18:20

Rowan Bearing in mind the person I am thinking of had the operation abroad and under age.

Iused2BanOptimist
If someone underage has had a life-changing operation abroad which they have not understood the consequences of (eg given informed consent) this represents a serious failure of duty of care by the professionals involved, a massive breach of Safeguarding frameworks and potential legal issue. The adults responsible for that hypothetical child have been neglectful.

heresyandwitchcraft · 13/11/2018 09:52

Fully agree, R0wantrees. It's not just that the consequences of the operation that haven't been fully understood, but the exact nature of the procedure and limits of any permanent medical intervention have clearly not been communicated properly to the patient (+/- their guardian) in such a case.
What I am saying is that these scenarios unfortunately would not surprise me, given the absolute hogwash we are hearing about biological sex from some trans activists and their allies. It's profoundly disturbing and dangerous. I would go so far as to say that I think some people who absolutely DO know better (such as certain HCPs) are actually colluding with creating this confusion.