New children's gender identity clinic, clinical trials and Cass

[VegasVagabond]

I'm a regular here but have named changed.

I have come across an advert for a psychologist at the new GI clinic for children in Nottingham. I am concerned that the advert says that the psychologist would be supporting children on 'gender affirming pathways' for children receiving hormones under endocrinologists.

My understanding had been that children should no longer be 'gender affirmed' or given puberty blockers and that psychological support should be exploratory to understand the child's context and wider needs?

I also thought clinical trials had not been agreed and were unlikely to be agreed?

Does anyone have any clarity on the current situation in terms of medical pathways, the new clinics, psychological support and the clinical trials?

Here is an extract from the job advert:

Job overview

Due to the development of a new young people’s gender service, there is an exciting opportunity for a Clinical Psychologist (Band 8a) to join The Nottingham Young people’s Gender Service (NYGS) at the forefront of delivering care and support to young patients. You will receive in-depth training and clinical supervision whilst working with our experienced nurses and MDT within a forward thinking and supportive NHS Trust.

NYGS are recruiting to a new team comprising Consultant Psychiatrist, Paediatrics, Advanced Clinical Practitioners, Clinical Nurse Specialists, Psychologists and Research assistants. You will have the opportunity to work with a progressive team leading the way nationally and international in children and young people’s Transgender Health.

NYGS is a multi-disciplinary service offering psychological support to young people on the gender affirming medical pathway and looked after by the adolescent endocrinologist service, some of them will be awaiting to or prescribed hormone blockers or hormones by the NHS following an assessment by the Gender Identity Development Service.

Main duties of the job

The new service will provide multi-disciplinary care and support to young people aged from 11 to (and including) 17 years old who are about to receive or currently receiving gender affirming medical treatment from the Specialist Paediatric Endocrinology services (SPES) which is the endocrinology arm of the Gender Identity Development Service (GIDs) which will be closing on the 31st of March 2024.
This new service (NYGS) service will work to NHS England’s published interim service specification for specialist gender incongruence services for children and young people (Interim Service Specification).
NYGS will sit within the established NCTH Network which provides the Nottingham Centre for Transgender Health Adult Service, the East of England Gender Service, the Linked Clinic activity with Indigo Gender Service and the Linked Clinic activity with the Sussex Gender Service.

I don’t understand why the proposed study confounds things by combining psychological support and blockers - if both interventions are tried at the same time will we really know which intervention had most or least effect. Can the effects of each be separated out?

I wish that Mumsnet HQ would ask Hilary Cass to come on here.
Not within the bounds of possibility surely as we are a huge resource of concerned parents.
So many questions to ask her.

Depends what they're comparing. Psychological support plus blockers, vs psychological support alone would be fair enough.

Maybe ask on Site Stuff?

Ok I'll try on Site Stuff.

Yes. There are studies designed liked this. You can have a protocol with multiple arms in which there is a

• waiting list option (those waiting for the psychological support?)
• number of people who have opted for the psychological support (and there might be subgroups within that for different support, and maybe those who have socially transitioned and those thinking about it)
• number of people who have opted for the puberty blockers

I'm not sure it would be ethical to have an arm with puberty blockers and no psychological support. It's sad yet accurate that there are children waiting a long time for psychological support.

I hope the protocol makes all of this very clear.

Designs like that want to establish if there is a difference between just the one (psych support) or psych support + blockers. If they had a blockers without any pysch support (dubious) or children getting nothing (waiting list) then it should be possibly to detect nuanced differences. It might be feasible that some combinations considerably worsen outcomes or improve outcomes in a way that goes beyond additive and becomes more gestalt (if that makes sense - like taking a painkiller with a cup of tea and a biscuit).

Even though the whole idea of a clinical trial in this field feels unethical (is it full Mengele? I honestly don't know), this makes sense as a possible approach.

I'm not sure it would be ethical to have an arm with puberty blockers and no psychological support.

The problem is that it's creating a foundation in healthcare where it's considered OK to remove body parts and permanently alter the endocrine system because of someone's belief: they hold a belief that they have a gender identity which differs from their sex. This causes distress and under their belief, the recommended approach is to alter the body to match the mind.

But how are children (and vulnerable adults) falling in to this as a belief? That's rhetorical, as there are countless threads exploring this and the high prevalence of "co-morbidities" like autism and sexual abuse. Only 2% of GIDS referrals didn't have any such co-morbidities - see screenshot below.

Where do we draw the line on belief-based medical practices? We're not consistent in this country e.g. circumcision is allowed but FGM is not. I'm completely ignorant on the answer to this but maybe someone else will know: would doctors support parents' decision to refuse a blood transfusion on behalf of their child for religious reasons if it means certain death ? It feels to me like that's the kind of thing that would end up in court with doctors pushing for the child to be given the life-saving medical intervention.

Obviously "gender affirming care" isn't physically life-saving like a blood transfusion, and I'm talking about a scenario that's the opposite way round: in the blood transfusion example the care is being refused, not requested. However, it's all relevant as it's about belief-based decisions and how they impact medical "best practice".

But how are children (and vulnerable adults) falling in to this as a belief?

Vulnerable people believe all sorts of things, so this is not surprising. What is surprising, and what has brought us to where we are now, is how many otherwise rational and educated people have fallen for the idea that someone can "be transgender" with the resultant need for their body to be changed to match an idea that is inside their head.

It's the doctors, teachers and politicians (and others) who are going along with this idea of a "wrong body" which is the problem. This should have been dismissed in the same way as someone who declared that they wanted an amputation because their right arm wasn't really theirs. Instead, these people who should have taken a rational stance have encouraged the children and vulnerable adults who have fallen victim to this craze to harm themselves through medical intervention.

Why have they come to this conclusion that people can be born in the "wrong body"? Because although they no longer say that (and now say that they never did say that), this is what the treatment is attempting to remedy. Why change the body to match someone's "gender" if the body is not "wrong" in the first place?

If you'd like a question and answer session with Dame Cass please register your interest on Site Stuff.
HQ are open to inviting her if the numbers are there...

I've supported the site stuff request:
www.mumsnet.com/talk/site_stuff/5188539-please-could-you-invite-hilary-cass

Will do. Amazing! Thank you for raising it with them ❤️

Apologies for my ignorance but is "Site Stuff" just threads like other boards?

If so, please could you share your thread here? I'll then jump on to it directly and comment - plus I'll drop the link in to other relevant threads on this board. It would be so good to get a Q&A with her. Plus it might attract some press attention..... although is the world yet ready to accept the idea that people in that naughty corner of the internet (posters on the FWR board) aren't just a bunch of Rights Hoarding Dinosaurs after all but are a mix of mums, dads, grandparents and professionals who want to discuss and address the impact of gender identity belief being enforced as fact?

@BonfireLady
Thank you - great post!
The link has been posted below

As it's your initiative - is it worth you creating a separate thread on FWR to ask people to support and comment on your site stuff request?

www.mumsnet.com/talk/site_stuff/5188539-please-could-you-invite-hilary-cass

Does anyone know if puberty blockers were ever trialled on animals?

Trialled as such, no. There are some observations such as these in sheep.

Overview: https://can-sg.org/frequently-asked-questions/how-do-the-endocrine-interventions-puberty-blockers-and-cross-sex-hormones-work/

Hough D, Bellingham M, Haraldsen IR, McLaughlin M, Robinson JE, Solbakk AK, Evans NP. A reduction in long-term spatial memory persists after discontinuation of peripubertal GnRH agonist treatment in sheep. Psychoneuroendocrinology. 2017 Mar;77:1-8. doi: 10.1016/j.psyneuen.2016.11.029. Epub 2016 Nov 30. PMID: 27987429; PMCID: PMC5333793

D. Hough, M. Bellingham, I.R.H. Haraldsen, M. McLaughlin, M. Rennie, J.E. Robinson, A.K. Solbakk, N.P. Evans,
Spatial memory is impaired by peripubertal GnRH agonist treatment and testosterone replacement in sheep,
Psychoneuroendocrinology,
Volume 75,
2017,
Pages 173-182,
ISSN 0306-4530,
doi.org/10.1016/j.psyneuen.2016.10.016.

www.economist.com/science-and-technology/2021/02/18/little-is-known-about-the-effects-of-puberty-blockers

Bloody hell! 🚨🚨

A reduction in long-term spatial memory persists after discontinuation of peripubertal GnRH agonist treatment in sheep

As I said above, I'm still not sure how far off Mengele the whole thing is, not just the Yeet The Teets stuff but the controlled approach...

The NHS website used to say that the effect on the developing teenage brain was unknown (I'll find the exact words in a mo and add as a comment). Unfortunately it no longer does but these words were the turning point for us - my daughter requested puberty blockers as a "pause" so she could figure out if she "wants to be a boy or a girl". I thought that sounded like a good idea at the time (yes, yes 🤦‍♀️) so said I'd check it out via the NHS. I shared my findings and concern with my husband and he agreed it was a no, even though we were both fully open-minded about transition. My words to my daughter were then that "I'm really sorry but this shows that it's just one giant experiment. There's no way we can let you experiment on your own brain".

Great idea 👍👍

Thank you for the link @kiterunning

Screenshot below of the original NHS advice, available here on an archived page:

https://archive.ph/LwIm3

Those words have now gone. Here's the current page:

https://www.nhs.uk/conditions/gender-dysphoria/treatment/

When I read through everything on the new version of the page, it gives the impression of the overall risk of medical treatment being lower than it used to (or perhaps that's just my interpretation?) e.g. this just suggests you might end up with a dodgy batch, perhaps like street drugs cut with stuff, if you get puberty blockers from unregulated sources:

There is some uncertainty about the risks of long-term gender-affirming hormone treatment.
Children, young people and their families are strongly discouraged from getting puberty blockers or gender-affirming hormones from unregulated sources or online providers that are not regulated by UK regulatory bodies.

"Some uncertainty" is an understatement.

It being "strongly discouraged" reads like a legal disclaimer e.g. if you source them outside the NHS you're on your own.

It seems that when there was media and public pressure on the NHS they changed the wording of the advice but it also seems that when the scrutiny level dropped they changed it again to be less helpful. Which is strange given the outcome of the Cass Review.

God, but you have to be eternally vigilant when it comes to this subject.

So it wasn't just my imagination. It really is less helpful, isn't it?

And yes, eternally vigilant is very true. Luckily I've developed somewhat of an obsession with it all so that's that bit covered 😁 My primary motivation is to help my daughter but I can only do that if I'm aware of all the moving parts that impact and influence her. As a bi-product of my awareness and approach I'm also now contributing to women's rights discussions. Not the ideal way round when it comes to the purpose of the FWR board but there is enough of a Venn diagram middle! (I've learned that I have been pretty ignorant about feminism but am slowly absorbing stuff by virtue of the crossover)

I don't think it's your imagination: the advice goes from saying that we don't know what effects blockers and hormones will have on development to saying that little is known about them in general. And it changes to using phrases like 'some uncertainty' and hormones now get called 'gender affirming hormones' and it doesn't mention brain or body development issues.

I also think 'Strongly discouraged' is weak in terms of advising caution, something like 'strongly advised not to source them online or abroad' would give a clearer picture of the medical risk and legal state of things.

Cass has said that physical intervention may be the right course of treatment for a very small number of young people. Her key point is that there are many 'ways in' to gender distress and, in line with this many 'ways out'. She suggests that hormone treatment MIGHT be right for some, but not most, we don't know.

I don't regard this as being aligned with gender ideology but rather saying that there is some evidence that suggests some YP may benefit from physical treatment, and these would likely be those for whom trauma, autism, sexual orientation, mental health conditions etc. do not account for their distress.

Going forward, there will be legal challenges if a treatment protocol excludes those with protected characteristics on the basis of those protected characteristics, but in a research protocol, this can be done for the purpose of controlling confounding variables and therefore improving the quality of the evidence produced. If they discover PBs are effective treatment for those for whom there are no other identifiable causes of gender distress, they will have another ethical dilemma on their hands relating to this.

For years, the Tavi explained the near perfect correlation between those who went on PBs and those who subsequently took cross sex hormones as indicative of how accurate they were is assessing who should/shouldn't be given PBs. They believed that the desistance rates, or reduction in distress in those who didn't go on PBs, evidenced that they weren't the right cohort for PBs.

For many years, I sat on an ethics panel, assessing research protocols. There were lots of criteria against which an application was assessed, but at the highest level, the questions, 'is this new knowledge needed' and 'do the ends justify the means' guide the assessors as to how much risk should be tolerated. I think in the case of PB trials, the perception of need for the knowledge will result in relatively high levels of risk being deemed acceptable. They are likely to scrutinise consent forms very carefully, to ensure all risks are clearly explained and to require robust measures are in place for accurately determining Gillick competence (whereby confidence can be had on the participants capacity to make an informed decision whether or not to participate). They may also require parental assent is obtained. Usually, for those with Gillick competence, requiring additional consent/assent from parents is deemed unethical due to placing parents in position where they could deny a young person's right to participate. However, in this instance, they may look at this differently.

Bernadette Wren, for quite some time, headed up the ethics committee at the Tavi (quite a bit of research undertaken by students did not need national level ethical approval, primarily when participants in a study were not NHS or social care patients or staff). She is far more questioning and concerned about what happened at the Tavi's GIDS compared to Polly Carmichael, who suggests the service was misunderstood and the victim of unfounded smears.

Going back to the original OP, why is it “gender affirming” care? This is a psychologist they recruiting for, one of the very people one would expect to be exploring with the child whether further pursuit of taking hormones and possible surgery was a good or bad idea, as opposed to a mindset that gender must be affirmed. Or am I missing the point?

…There were lots of criteria against which an application was assessed, but at the highest level, the questions, 'is this new knowledge needed' and 'do the ends justify the means' guide the assessors as to how much risk should be tolerated. I think in the case of PB trials, the perception of need for the knowledge will result in relatively high levels of risk being deemed acceptable. They are likely to scrutinise consent forms very carefully, to ensure all risks are clearly explained and to require robust measures are in place for accurately determining Gillick competence (whereby confidence can be had on the participants capacity to make an informed decision whether or not to participate).

Thanks for the explanation Brainworm.

I find this terrifying. I just don’t understand why the NHS thinks it needs another study, particularly when carrying out that study puts children’s future health at risk. There is evidence of harm and serious life-limiting effects from these hormone blocking drugs in other patient populations and those populations were given the hormone blockers because they had severe physical diseases that it was hoped the blockers might reduce.

This NHS study is proposing to block puberty in healthy bodies to see if improves a psychological condition; in my view a desire for new knowledge does not make administering these drugs to the children participating in this study ethical. If at the end of the study they show that there was no improvement in mental health will it have been worth the damage to young bodies that blockers can cause? Those running the study may cause iatrogenic disease that these children will have to live with for the rest of their lives and that’s a heavy burden for someone to bear in order to produce new knowledge for the NHS. Especially for a psychological condition from which the majority would likely desist if allowed to go through puberty and given proper psychological and familial support.

And when it comes to the knowledge gained, will the patients and doctors who support blockers accept a negative outcome or will they still push for either blockers or more testing? I don’t think this set of doctors, or this patient population, that strongly believe in blockers will be convinced by medical evidence that they don’t like.