"my brother died of ovarian cancer"

[SCMocha]

attention-grabbing headline for this article from the independent:

inews.co.uk/news/long-reads/ian-duncan-deputy-speaker-house-lords-interview-brother-died-ovarian-cancer-1125221

ovarian cancer apparently "predominantly affects females" (!)

the article talks about the fault of health care providers for not understanding the needs of trans people, rather than focusing on the confusion that might arise from someone registering with a GP as 'male' who then doesn't get smear test notifications.

A very basic example would be that if someone has a female marker on their record we can’t order electronically the blood test relating to prostate size/ prostate cancer. Allowing people to change the sex marker on medical records is completely unethical imo (first do no harm) and should never had been allowed.

That's shocking.

Nancy Kelley of Stonewall has said today that this highlights 'the need for trans inclusive healthcare.' Which is just jaw-dropping as most of these problems have been created or exacerbated by orgs like Stonewall insisting that the process of transition is personal, requires minimal state intervention, and ought to be based upon the understanding that 'people are who they say they are.'

The NHS was lobbied by organisations such as GIRES long before Stonewall became involved.

relevant threads:
www.mumsnet.com/Talk/womens_rights/3463920-Lets-go-back-to-2007

www.mumsnet.com/Talk/womens_rights/3396859-Weve-been-lied-to-about-Single-SEX-wards-since-2010

@Ghislainedefeligonde

The problem is if someone transitions they get a new nhs number and new records which are not allowed to state anything about their actual biological sex. So how are GPs supposed to ‘keep a register’ when there is no way of searching for which male patients are actually female etc. It’s hugely dangerous and lots of us have been pointing this out for years but being ignored because gender identity seems to trump everything else. In addition can you imagine as a GP who is not allowed to mention trans status to a patient or convey this information in any referrals how difficult this whole thing is. That’s assuming they don’t pass. If they do pass then we simply won’t be looking for things like ovarian or cervical cancer in a male patient so it will clearly potentially delay a critical diagnosis to the huge detriment of that patient. A very basic example would be that if someone has a female marker on their record we can’t order electronically the blood test relating to prostate size/ prostate cancer. Allowing people to change the sex marker on medical records is completely unethical imo (first do no harm) and should never had been allowed.

This isn't true. When a trans person legally changes their gender, they are given a new NHS record, but all their previous information has to be transferred onto their new record. It will therefore be obvious to any medical practitioner looking at their record that they are trans because all trans-related medical interventions will be recorded. It wouldn't really work for trans people otherwise, because how are they going to continue to access HRT if there's no record of why they're taking it. Nor is it in any way true that GPs aren't allowed to mention a patient's trans status where it's relevant. Of course they are, and they do.

It is true that it will affect what screenings a patient is automatically invited to, but that's because screening invites are automated based on gender marker, not because the patient's trans history has been erased. GPs are required to discuss this with trans patients, to advise them of what screenings they need, and to recommend that they book in for these manually when they come due.

@merrymouse

My brother could have been saved

From the article he moved to America and couldn't afford medical insurance so access to medical care would have been patchy, whatever the circumstances. Such a backwards country.

Actually from the article he couldn't get health insurance because of his immigration status. Does the NHS provide full care for all people in the country whether legal or not?

Have any of you been screened for ovarian cancer? I haven't and I have great health insurance in the US. 13 years ago there was no screening - not sure there still is.

So the narrative that he died because the US wouldn't screen him or should somehow have detected the famously undetectable ovarian cancer is as false as the narrative that he died because health care doesn't use inclusive language. This was a horrible situation with what sounds like a vulnerable person dealing with a bad diagnosis. If the magic had actually happened and they turned his ovaries into a prostate and he got prostate cancer instead, my guess is he would still not have checked/followed up etc.

I feel very sad for this person - ovarian cancer is horrible. it was on the team that dealt with his transition to make clear what screenings/issues he might have to deal with in years to come. That still may not have prevented ovarian cancer.

Actually from the article he couldn't get health insurance because of his immigration status. Does the NHS provide full care for all people in the country whether legal or not?

It would certainly provide full care regardless of work status. Sorry, it is unlikely that you will persuade me that a country with no universal healthcare system, no paid maternity leave and tenuous access to birth control isn’t backwards. To say nothing of gun control law.

Did I mention employment rights?

And I fully accept that my attitude towards America is currently very much coloured by the government’s attitude towards women’s rights, which it claims to be progressive.

If the Democrats are a right wing party that couldn’t care less about women’s rights, they should at least own that.

@Ghislainedefeligonde

Hereward yes Royal college of General practice and GMC have been utterly spineless in all of this

@Ghislainedefeligonde

Yes, there has been total collapse of moral courage on this issue in almost every institution across the system, and the only parallel I can think of for this kind of capture, much as I hate to use the example, is the German medical establishment of the 1930s, where there was minimal resistance to Nazism or the euthanasia programmes that eventually escalated into the Holocaust. Medicine is a very reactionary profession and reactionary ideologies can easily piggy-back on it.

It is absolutely the whole collective leadership of the health system. It's the heads of all the Royal Colleges and the Academy of Medical Royal Colleges, the NHS medical leadership, the clinical academic leadership (the journals and the Academy of Medical Sciences), the public health leadership (including the UK Chief Medical Officers), the Department of Health and Social Care (and DA health departments), the heads and medical leadership of individual trusts, the big medical charities, the global health community, the GMC, the funders ...

None of these people are doing their job on this issue. Not a single one. It is an appalling betrayal of trust.

I assume that medical education is also fully captured, and then the next generation of leaders will be true believers instead of just cowards ...

Have any of you been screened for ovarian cancer? I haven't and I have great health insurance in the US. 13 years ago there was no screening - not sure there still is.

There is no screening for ovarian cancer. The UKCTOCS trial reported this year that sufficient benefit was not found.

Women who have been tested who are BRCA+ will be monitored. Not all ovarian cancers are associated with BRCA+.

@merrymouse

Actually from the article he couldn't get health insurance because of his immigration status. Does the NHS provide full care for all people in the country whether legal or not?

It would certainly provide full care regardless of work status. Sorry, it is unlikely that you will persuade me that a country with no universal healthcare system, no paid maternity leave and tenuous access to birth control isn’t backwards. To say nothing of gun control law.

the health care situation in the US, while poor, is not as simple as that. There is medicare (covers all over 65), medicaid, VA system, private healthcare and the individual mandate (obamacare). Less than 10 percent of those under 65 have no health insurance. I am pro-universal health coverage in the US and vote accordingly - I am simply pointing out that an american living in the UK without a visa, would not have been routinely screened for cancer (moot in this case as there is no screening for ovarian cancer). This entire article is tragic on an individual level but nothing in it makes much sense from a policy point of view.

Not sure why I am arguing though as it is a tenet of faith on MN that the US is backward and vulgar (and responsible for halloween in the UK)

blueberry I don’t believe that’s correct. And there is huge risk of complaint if you even inadvertently disclose this without explicit consent from the patient. So if that patients states you are not allowed to reveal their biological sex in a referral then you can’t do it. And would risk criminal prosecution if you did!
See link
[[https://www.essexlmc.org.uk/recording-gender-medical-records/]]

There is medicare (covers all over 65), medicaid, VA system, private healthcare and the individual mandate (obamacare). Less than 10 percent of those under 65 have no health insurance

I know all of this. US politics has been quite loud for the last few years. I also know that many ‘insured’ people have to make ‘copays’ which can add up to thousands.

Average out of pocket cost for giving birth in US $4,500

www.theatlantic.com/health/archive/2020/01/how-much-does-it-cost-have-baby-us/604519/

However, I am happy to agree that the U.K. is also quite backwards in some ways - we still have hereditary peers.

However - and this is the important part - we aren’t exporting the peerage system to the US and calling it progress.

On the other hand the US are exporting sexist misogynistic beliefs to the U.K. (read Guardian US this week or the NY Times on those strange British feminists)

I don't understand why a lord who lives in pimlico didn't help with the paperwork?

Sounds like they were in touch for a good while around that point.

Good moves would be

Sex and Gender recorded in NHS
Surely trans people on hormones get follow up on NHS? Any drugs you get reassessed periodically.

This is USA healthcare how NHS fault?

“Cancer does not give a fuck about your pronouns.”

Best tag line ever

Breast and chest cancers are some of the most common cancers and some of the easiest to detect early by self-checking

As if men don't have breasts tiny ones but they do! And they grow when men have too much estrogen (like when they put on too much weight)

*However - and this is the important part - we aren’t exporting the peerage system to the US and calling it progress.

On the other hand the US are exporting sexist misogynistic beliefs to the U.K. (read Guardian US this week or the NY Times on those strange British feminists)*

Not to mention sneakily buying up parts of the NHS and introducing privatisation by the back door.

Sorry to derail, but not many people understand the extent to which radiology services are being outsourced and the harms this will bring.

This twitter thread explains a little.

twitter.com/drdlittle/status/1387860943003168768?s=21

Problems can arise with GP surgeries, however. “Some people are registered with their affirmed gender, and not their sex assigned at birth,” says Dr Berner.

Well there's where the problem lies, GPS surgeries registering people only with their affirmed gender.

@FannyCann

*However - and this is the important part - we aren’t exporting the peerage system to the US and calling it progress.

On the other hand the US are exporting sexist misogynistic beliefs to the U.K. (read Guardian US this week or the NY Times on those strange British feminists)*

Not to mention sneakily buying up parts of the NHS and introducing privatisation by the back door.

Sometimes the House of Lords ARE THE ONLY ONES with any common sense.

Remember the old ad to persuade women to have smear tests “don’t die of embarrassment”.

They need to resurrect this.

lynette that’s what has to happen currently or the practice could risk prosecution for discrimination. The problem comes from above and those people making the rules
Also if a patient comes from abroad we will likely have no previous medical records so it’s not necessarily going to be clear that they are trans.
Re prescriptions for hormones, if they are getting them privately eg online then GP might not know anything about them! If being prescribed by specialist within nhs then there will be clear record of this - but guidelines on what monitoring is required are based on guesswork as no one knows the long term effects of cross sex hormones yet. It’s a complete mess

I talked to a doctor friend about this and she rolled her eyes and said that loads of people each year die because they ignore symptoms/ don't want to face reality/ are embarrassed or too scared to do anything/ think they're not the type of people who get cancer or have heart attacks etc. She was annoyed that such a tiny population (transpeople) are getting all this attention and being treated as if they're tragic victims of an uncaring system when they know full well what sex they are.

She says she wouldn't classify herself as full-on GC but the NHS is under enough strain as it is without being guilt-tripped because a handful of people are in denial about their sex. It was a very refreshing conversation!

Your friend made some excellent points,@Shedbuilder. I do not understand why society has to twist itself in knots to validate a person's 'identity', which is subjective, fluid and known only to the individual.

@R0wantrees

Have any of you been screened for ovarian cancer? I haven't and I have great health insurance in the US. 13 years ago there was no screening - not sure there still is.

There is no screening for ovarian cancer. The UKCTOCS trial reported this year that sufficient benefit was not found.

Women who have been tested who are BRCA+ will be monitored. Not all ovarian cancers are associated with BRCA+.

My family have the BRCA, years ago it was clear there was somehting going on but it was before BRCA was known. My DGM and 2 aunts died of ovarian cancer, one had surgery in time as she was alert to the systems. I did have screening for a while but when testing was available I found out I hadn't inherited the gene. In the meantime I needed a hysterectomy so had my ovaries removed as well, just in case.