NHS: Do transgender patients' records get divided in two, when they change gender? Hoping Doctor or health professional might tell us

[loveyouradvice]

I have heard that not only can trans people ask for their recorded "sex" to be changed to the gender they identify with, but that they can also ask for any records prior to transitionining to be "closed".

I'm not sure what this means - is it deleted? or kept separate with no links to their current record? or ??? Does it relate to all medical records (hospital, GP, etc)?

Looking forward to someone clearing up this confusion! I was very concerned when I heard this.

I understood that they were given a new NHS number and all their past medical history (vaccinations, childhood illnesses etc) was not copied over. Total blank page at the point of creation. Not unlike being put into a witness protection programme, although even then I assume there would be a ‘back history’ created.

Really hoping someone who knows what happens is along soon to comment.

How on earth did anyone think that was a good idea?

@CautiousLurker01 you have clarified what I was inferring ... I too look forward to some Mumsnet health professionals commenting soon!!

You need the recent WRN NHS data report -. I find WRN website hard to navigate (I believe because it had to be built for security against all the hacking attempts TRAs use, rather then usability) but it's called Incoherent and Unsafe. It's got loads of examples of the records systems and how they conflate and confuse birth sex, legal sex and gender

If it's impossible to find PM me, I've got a PDF

With adoption the child gets a new NHS number and everything is copied over.

The danger for trans people is that their biological sex gets lost. Which for medical purposes is pretty essential information.`

That's interesting @TeenToTwenties - and makes sense for adopted children.

They key thing is that everything is copied over - isn't that the bit that doesnt happen with Trans?

Thanks @nothingcomestonothing - impressive work!

I;m more interested in what happens structurally at the mo....

You might be interested in
this thread, OP.

The current guidance appears to be in flux and is no longer as it used to be in the PCSE system. Here is the current page:

https://pcse.england.nhs.uk/contact-us/patient-registrations-enquiry-categories/adoptions-and-gender-reassignment

This (internet search result) document describes the 'old system': assets.practice365.co.uk/wp-content/uploads/sites/1527/2020/05/Changing-Your-name-and-Gender-with-the-NHS.pdf .

Patient wishes to change gender marker. Patient issued new NHS number, with new gender marker. Old notes migrated over and redacted as required by patient. What I have seen happen is either (a) all the notes/coding just copied across without change or (b) all the old notes saved as documents and manually redacted for indications of old gender/name. Because old notes are saved in this non-searchable format, it is extremely difficult to find medical history info. Codes may or may not be migrated (and coding is often quite rubbish anyway).

The system has now changed for <18s and many bodies (including RCGP) calling for change for all patients. I think it is a matter of time. Goodness knows what happens for legacy patients.

My understanding is deep within PCSE there is a record linking old and new numbers together, but this is not available to front line staff.

Anecdotally, i know someone who got another NHS number during covid and then had problems proving they had the jab.

Not the biggest problem, but it seems bonkers that information isnt carried over, just to get a gender marker.

I work in admin in primary care and what happens currently is that the transgender patient is given a new NHS number (if they want a new record creating) and their medical history is summarised onto the new record (vaccinations, allergies, medication, operations, broken bones, etc). The old record is attached to the new one with any information relating to the patient’s previous identity redacted. This process always occurs in discussion with the patient and the implications of creating a new record are discussed.

Where ongoing screening may be an issue, for instance cervical smears, a flag is put on the record to ensure future screening is not missed out on.

I don't have my guidance in front of me but, from memory, this is how it works and as a pp said above, it's very similar to children who are adopted and given a new NHS number.

My children are adopted. When I asked to see their medical records, the GP provided me with a big bunch of papers, which included info under their previous nhs number ie while they were in the birth family and foster family.

But this info doesn't show up on the app.

I've got some adopted DC too. My GPs surgery periodically tells me DS hasn't had his preschool jabs - he has, he had them at that very surgery, he just had his previous NHS number at the time. So the info wasn't carried across with the new NHS number even at the same GP surgery. I'd be amazed if all relevant info was being copied across when trans ID'ing people get given new NHS numbers.

Am relieved their data is not entirely lost - but a significant amount of it must become obfuscated by putting it in linked files? Surely this makes it easy for something really significant to get overlooked and/or for clinicians to be open to making misinformed diagnoses or being misprescribed? Worrying for both the trans individual AND those treating them.

This new thread is relevant BMJ editorial: sex and gender should not be conflated in medical data | Mumsnet

It's certainly an imperfect system and relies on the diligence of the staff involved in the process. It's also quite a time consuming process.

It hasn't been entered onto the system, but the papers might be in the paper files, which no one looks at. When I asked to see the paper files, I found loads of useful info, like copies of the minutes of the meetings when it was decided the girls would go into care and when it was decided they would be adopted.

Very much so. I don't know why trans people are OK with this system. As a clinician, the risks are very concerning.