Health board ‘misled young patients’ over puberty drug, Times Scotland

Yes Merry it’s like saying getting off the train is reversible without mentioning that the train may leave the station before you get back on

the effects of [puberty blockers] are considered completely reversible

Puberty blockers are specifically used to 'normalise' age related and puberty related bone growth in cases of precocious puberty, so the idea that you can just pause puberty indefinitely according to a patient's wishes, and that this is reversible as soon as the drug effects wear off, sounds illiterate.

FWS have updated their blog post on Sandyford with the link to their full FOI that the Times articles was based on. Interesting to see that Glasgow health board have shown ho hesitation in stating they have absolutely no intention of reconsidering use of puberty blockers in light of the Keira Bell ruling.

There's also another FOI showing the complete mess of data collection at Sandyford, who seem unable to even count the number of children coming through their doors.

forwomen.scot/28/12/2019/sandyford/

The language of ‘pausing’ puberty is also massively misleading and implies if it is ceased, puberty will pick up where it left off and the end point will be the same. I’m sure the NHS don’t use that word, but that’s how it is often referred to by certain groups. Scary that guidance has been removed and not replaced, because concerned parents will naturally turn to such groups in its absence.

Just as an aside, Sandyford originally said they expected to have an updated version posted online in a week. That was last June...

It's the year of covid, time doesn't exist.

As a pp mentioned as soon as trans is mentioned anything else goes out the window, why is the trans community seemingly so happy to accept this. Surely there should be a strive for the best treatment and one that is also knowingly safe.

I wonder how many people consent to this would say no to their child getting a tattoo

If one was being generous, one could say that this is an emergent field which has had very little research done, and there is a lot we don't know.

In which case, though, how has anyone decided it's appropriate to offer life altering treatment to children on the basis of such vague theories, and given the paucity of research?

Without a way of objectively measuring the feeling how can we treat it?

This can't be unique to gender differences - many psychiatric conditions must have similarly internalised symptoms (note, for the external mods - I am clearly stating that gender differences and psychiatric conditions are different from each other) so, how do psychiatrists measure the severity of e.g. schizophrenia or derpression? There isn't a test or a scan that can measure those issues, and yet, we have got definitions and NICE guidelines for their management.

Why can't we do the same for gender?

Why can't we research gender? Why was Caspian's research blocked?

Other than playing with the wrong toys and liking the wrong clothes.

“Dear No”

Sometimes I think they do it on purpose. As in my response from SA Somerville's office, to my email on GRA reform, where they addressed me as 'Mr', despite my clearly feminine name. I don't give two hoots, but it shows the mentality involved.

Yes, exactly. What does it mean to 'belong' to a sex?

What I think they mean is that if a person feels a strong affinity with the gendered stereotypes associated with one sex or the other they might feel as if they 'belong' to this sex. It should be made far clearer that the stereotypes are arbitrary and not innate. And that one can't change sex. This should be very clear.

*old pamphlet not “only”

Arabella My first complaint to Sandyford re the only pamphlet was originally fobbed off with the email starting, “Dear No” 🙄🙄🙄🙄

You couldn’t make it up. 🙄

is the feeling that we belong to a particular sex.

That's vaguely concete. Ish.

But like every single time I see something that approaches tangibility, I have a mental image of me lying down the author on one of those leather couches psychiatrists use, pushing my glasses down my nose, pulling out my file of notes and asking, "so tell me what 'belonging' means to you?"

I still can't map anything to material reality, I just want to understand what's happening in the head...

Sounds like you're being let down badly, rogdmum. Hope you get a response soon.

Despite this, a leaflet published by the health board until last year said that taking blockers was considered “fully reversible”.

the effects of [puberty blockers] are considered completely reversible

The word "considered" is being used in a highly deceptive way, to provide a get out in the future that would go something along the lines of "we never actually said that they are completely reversible, just that we considered them to be viewed as such and this is very different because [blah blah blah]"

As I wrote on another thread:

"Does anyone really think that after being on puberty blockers for the whole of their puberty, a child can stop taking them and return completely to the developmental pathway they would have been on had they not taken them, and arrive at the same outcome?

"Reversible" is another of those terms that people have allowed to acquire a meaning that is in opposition to its true meaning. It's another mantra term that's used to close down debate without needing to wonder what the term actually means."

Followed the links on there, and I think I may have spotted a definition of 'gender identity' - I know we've all been trying to track one down for a while! At least, the header of the page is 'gender identity':

'Gender, on the other hand, is nothing to do with our sexual or reproductive organs but instead, is the feeling that we belong to a particular sex. This helps us to understand that regardless of the biology of our bodies, we identify as, or ‘feel’, male or female, to varying degrees, or neither male or female.'

www.sandyford.scot/parents-sandyford/secondary/gender-identity/

Well, they’ve removed it from online. I don’t know what written info is available once you are seen at Sandyford. I requested this in an FOI to them on 13 January. They haven’t responded yet. I then asked for a review of my FOI to be carried out. They said they hoped to get back to me “soon”. They have until next Tuesday to respond before I escalate to the Info Commissioner as a formal complaint of no response.

So - they've just withdrawn their advice and left patients/prospective patients with nothing? No reliable advice?

Is this to avoid saying they had it wrong?

Is this political?

This is children's health they're supposed to be supporting, here! It's shocking that they've just decided silence is a suitable position to take.

These are the pages from the old pamphlet:

I just don’t understand why anyone would consent to a child using a drug that has “possible effects on brain development“ (never mind all the other known side effects) unless there was no choice.

There’s no updated leaflet yet, at least not online. It should sit here:

www.sandyford.scot/sexual-health-services/gender-identity-service/

Just as an aside, Sandyford originally said they expected to have an updated version posted online in a week. That was last June...

I just will note in passing how some people will use very specific technical definitions when it suits them, but will get very upset when other people try to use very specific technical definitions for things like "female" or "woman".

Well, I would say that the NHS is bound to produce information that is clear and easy to grasp, especially when it's concerning children and young people.

Most if not all patients or prospective patients are going to be presuming 'reversible' to mean 'able to be reversed', rather than some esoteric technical detail related to chemical reactions.

So it's misleading. Which is why they've removed the leaflet, I suppose. Is there an updated one?

to say they are 'fully reversible' is plainly not true

It is true, but only in a very specific technical sense about the treatment.

The treatment is a "puberty blocker". When you stop taking it, it stops blocking puberty.

That is "reversible".

Doesn't necessarily mean you will go through normal puberty when you stop taking it though. You likely would if you stopped early enough - if it was precocious puberty treatment - but if you stopped at 17/18?

So, it's technically true, but totally misleading to a layperson, like parents.

Looking at wiktionary, for reversible, we have:

1. Able to be reversed.
2. (of clothing) Able to be worn inside out.
3. (chemistry, of a chemical reaction) Capable of proceeding in either direction.
4. (physics, of a phase change) Capable of returning to the original state.
5. (thermodynamics) Capable of returning to the original state without consumption of free energy and increase of entropy.

It's not shown there, but what we're talking about is a medical sense akin to entries 3-5.

But it's not the common usage 1 - "we can undo what we did and carry on as if it never happened".