Clinics forced to share data on children who took PBs .. at last

[SpringCalling]

At last …. that this data was withheld should be considered scandalous

https://www.thetimes.com/article/7cd05ecd-277f-4d2e-882a-fbef5fafc6f1?shareToken=65fbc37a71974e792854156d8dae5941

This isn't a done deal yet. I would be surprised if the data is shared without it first ending up in court.

Yep but we all know why they withheld it.
I strongly suspect that the detransitioning rate will skyrocket and the levels of harm to both the physical and mental health of these poor children will be shown to be so great that even discussing gender identity ideology with children will become verboten.

I can see the lawsuits starting very soon

Oh I really do hope so.

It's not necessarily even this. There will be a lot of complications that they do a good job of trying to pretend aren't real but are documented on medical records. So even if they feel better mentally, the physical complications will raise serious questions. Particularly in terms of costs.

And again remember that those trying to suppress this data are not necessarily those who were on the trial too. Showing that puberty blockers are problematic opens up difficult questions about the whole concept of the transchild or a child deeply mentally unwell. Which in turn asks questions about the legitimacy of late male transitioners.

If the Frankenstein element of this becomes public and there's an awareness that doctors willing did it knowing what was happening to other patients because of lobbying, it's a can of worms not just for those who used PB.

I thought this bit was really interesting:

"Dr Alice Hodkinson, the co-founder of Biology in Medicine, said: “The data linkage study should be undertaken before any consideration of a puberty blocker study in children.”
She added: “There is already a wealth of information available to be reviewed, and it would be crucial to know whether these young people are content, if they have a stable family environment and if they are successfully in education or work, when compared with their peers.
“We hope that this study will in addition inform us of the outcomes of adult transition. Young adults are also at risk of going through life altering cross sex interventions that they may come to regret. Recent figures in the Levy report show that it is overwhelmingly the 17 to 19 age group who are referred to the adult gender clinics, which raises the concern that this is not a persisting identity."

I haven't seen the Levy report discussed on here, does anyone have any more information? I'll do some digging.

Dr Alice Hodkinson gets a massive 🥳🥳🥳🥳💐
for saying something which is, and has for years, been entirely obvious

I think there's going to be a lot of problems when this cohort hit their 30s. That's when people settle down and have families and it's also likely to be when the disabling issues with osteoporosis and continence really start to have a long term impact. This will also have an impact on employment as if you have chronic health issues it affects your financial stability.

Saying at 25 you feel happy with your identity is massively naive. Not many people in their 40s will say they are the same person they were at 25 because you go through several stages of identity shift throughout your life. There's no consideration for later shifts in your sense of self and how you relate to society as a whole.

There are numerous reflections and theories about life stages that go back centuries and across cultures which remain remarkably consistent and relate to this - which is linked directly to the human reproductive cycle and yes sex.

A 2 year proposed study was daft. It wouldn't show shit. Even after it's been revised to a 20 year posed study it's really not long enough either. It's that magic age 40 that really is going to show long term issues up and that's still out of the scope of a 14 year old on a 20 year study.

This comes back to the original premise of the study and what constitutes a good outcome - What's the measurements? How do you define it?

There's a study that Margaret McCartney has talked about before which gives some food for thought. It's about screening for bowel cancer and informed consent. This trial found that when you fully informed people if what it involved and what it could and couldn't do and what treatment for bowel cancer looked at take up of screening dropped. Why? Because people decided it wasn't worth it.

Further to this, other research looked at survival rates - and found that yey people were dying less from a particular cancer. Excellent. BUT this was also misleading because they crucially weren't living any longer - survival times weren't improving. Instead they were dying at the same point from other causes cos it was just the point at which their body had given up. And this measure is an important one to consider because people will make different choices with this information based on quality of life and side effects from treatment.

It's this type of thought processing and understanding of what data tells us and doesn't tells us and how it affects our decision making that's really important.

How can parents be making informed choices in their child's best interests with this in mind?

I'm very much in favour of collecting the data from the cohort that has already been treated with PB. However, the data it will provide are probably less that a researcher would want, my understanding is that the patients won't be recalled for questionnaires but there will only be data mining of anything that is connected to their NHS number. Have I misunderstood?

I am pleased to see this. I always thought it outrageous that this data had been withheld.

Also is this Wes on manouvres to gather enough fig leaves to cover his blushes as he keeps kicking the Pathways Trial down the road (hopefully indefinately).

Of course nobody would falsify data or lose/ delete records.
That is one of those things that never happens.

This will reveal mental health referrals and physical referrals though.

That's probably a lot more reliable and useful that self reporting from a cohort who have denial issues.

Of course, we still have to actually get those records. If they are, as many suspect, a complete disaster zone we also have the problem that various parts of the NHS don't really want us to see this data if it raises all sorts of governance and safeguarding issues because they have a vested interest to cover their own arses. As an organisation it has a terrible tract record in this area.

So I'm not holding my breath too much for those records materialising. There's so many reasons no one wants them looked at.

Yes, large organisations have a knack of making information disappear. Or anything disclosed will be incomplete, or will be withheld 'because of GDPR'. So they may not get a whole lot more as a result of this.

GDPR has exceptions that I do think can be used for this purpose.

This includes for public interest in healthcare research.

I believe last time they used the following exemption to an exemption:

But the exemption and the exceptions only apply:

• if the processing is not likely to cause substantial damage or substantial distress to an individual;

So I think it will be going to court.

Yes of course, but I'm sure it won't stop them giving it a try. GDPR, data protection, patient confidentality, 'Oh, they were Dr so-and-so's patients and she's left so we don't have any data'. I've had a little experience of trying to do research on health data, so I've heard a good few excuses in my time. The other problem I've noticed is that you can find some fields left blank, even where you might think they were quite important. Like the box marked 'Diagnosis'!

If only they had somewhere to put all this evidence - let's call it a memory hole - where it would all be completely destroyed forever.

I'm sure they would, if they could. I bet Olson-Kennedy wished she'd had one too.

All the young adults who have transitioned should be queuing up to tell researchers how great their lives are after transitioning as children.

And all the clinics should be proud to advertise how successful it has been with the data that will show exactly how safe and effective child medical transition is.

Why would they possibly want to suppress such positive data I wonder 🤔

There is also the possibility that they didn't keep records, which would be an awful admission to make because keeping clear, accurate, contemporaneous records is a basic patient safety requirement. It includes adherance to protocols, procedures, clinical governance, and audit. Clinical Audit has been a requirement for at least the last 25 years. It strikes gloom into the hearts of junior doctors but it has to be done in order to monitor outcomes. So presumably the Tavistock, being an NHS service, would have been doing all that?

I work in a top-rated STEM department in a top-rated university. The sustained lack of interest in follow-on data is totally incomprehensible to me. It just couldn't happen in the field I work in.

Weirdly, I want them to be happy. They were children, dreadful shit was done to them, the least they deserve is that they've navigated a way through all and found a safe harbour. It would still doesn’t tell us that in an alternative, sane, universe the same kids left to grow up (for want of a better word) normally would not have been just as happy and healthy.

I suspect it'll be a mixed bag. I think a real reluctant to share data is it's going to be a mess. Missing, inconsistent, incoherent and ideologically driven. The children, whose welfare should have been at the heart, will have been an afterthought. Still I suspect some of the institutes got a shit load of grants and those CVs weren't going to pad themselves.

I think the group of young people who went through some form of transitioning at that time are unwilling to share their data for reasons of privacy and paranoia that they will be on a list of people to target later on. It is very stressful and it would be easier if the reasons and parameters were explained more clearly. It is a cohort of people with neurodiversity, anxiety, co morbidities.

The fear of being outed remains very strong, stronger than a desire to demonstrate how successful it has all been. That alone must be an indication how unsuccessful it has all been.

Beowulfa I assure you it's equally incomprehensible to some of us who work in the NHS.

IIRC the Keira Bell court case found that the Tavistock record keeping had been abysmal. I'm thinking specifically of the appeal case that she lost and the judge commenting on how bad data keeping was.

Also, I wonder what happened to the ~1000 (?) parents that were taking the Tavistock to court. Perhaps I already knew where this got to but have forgotten. Will have a quick Google.

Found this from earlier this month:

https://yorkshirebylines.co.uk/news/health/the-real-tavistock-clinic-scandal-1000-court-cases-that-never-materialised/

It's got lots of referenced links in it.

the only way to get the trial stopped in favour of the already available (?) data being examined thoroughly is to keep emphasising the fact that no clinics want to share the data (it should be anonymised?).

There must be a reason for this. And we need to keep pushing back until they come clean.