Talk by Dr Aidan Kelly (Tavistock)

[rogdmum]

This is worth a listen from around the 15 minute mark for anyone concerned about the use of puberty blockers.

Some quotes from the talk:

“We are putting responsibility back on the family because we don’t have the evidence base to say ‘it’s these kids or it’s these kids’, or how we can pick out which kids should go forward and which kids shouldn’t. “

“The blocker is not a benign thing, it comes with - I don’t mean financial costs- it comes with downsides, especially around energy- if the young person has mood difficulties the blocker can sometimes make that worse- it also takes away those sex hormones, so that whole thing I was talking about, of being attracted to, developing crushes, when all your teens and peers are getting into relationships and developing social connections in that sense- that’ll be gone, well not totally gone, but that drive that interest whether it’s the opposite or same sex or whatever will be greatly reduced. And we do worry, because we don’t have long term evidence for this. We do worry for what impact that might have on their identity because sexuality is such an important part of your identity,who you’re attracted to.”

“It can often mean you are signing up to be a patient for the rest of your life. In a way you taking what is essentially a physically healthy, you know it’s not got medical- you might say internally in terms of gender it’s not right- but medically it’s a healthy body and you’re introducing medication and making it dependent on medication, so ethically it’s really quite a complicated area, especially for children.”

“We’ve only started talking about fertility in the last 4 to 5 years. Before that, we were putting people down this pathway and actually they were coming back to us 15 years later and going, “oh, you never really said, you know.” And that’s what I mean about this being such a new area, CoS we weren’t even doing hypothalamic blockers under the age of 16 until 5 years ago. We don’t have people who are 40 to 50 to see, you know, how’s your life been, were we right to intervene so early? We don’t know.”

He’s talking about the clinic they run in Crumlin Childrens Hospital in Dublin. The one Donal O’Shea wrote to the HSE calling for a immediate suspension of services

www.google.ie/amp/s/amp.independent.ie/irish-news/health/doctors-in-row-with-hse-over-claims-childrens-transgender-care-is-unsafe-38920159.html

Donal also doesn’t sign up to WPATH saying that’s its harmful to trans sexuals

God, the more that I keep finding out about this, the more shocked I am anyone could ever advocate this? That Mermaids is getting so much funding despite GROOMING children for this? A future no one has a sodding clue about! I can’t believe this is happening. I foresee a lot of court cases for the NHS in the coming years...

Have had to listen in stages to this because it’s given me the RAGE each time I listen to a bit more. Currently on the “reversible” puberty blockers.

Also learned that he’s giving not just an outreach program in Crumlin but also to Tralee and other areas. RAGE

I've recently been told on a different form that my beliefs are dangerous
when I said that women are XX and people who are XY are not women

what saddens me is that the person who said so is XX themselves

This just gives me major rage.

I've had 3 courses of GnRH agonists over the past 20 years to treat severe endometriosis and fibroids.

These drugs are licensed for difficult to treat, serious medical conditions. They have potential long term, serious side effects. I also suffered severe anxiety during my last course.

There is NO way, absolutely no fricking way, I would ever consent to these drugs being given to a child of mine off license.

Posting to remind myself to listen to this tomorrow!

As a doctor, I'd say this illustrates what a complete load of bollocks Ethics Committees are. Ditto all the lip-service paid to informed consent

MrsNoah (as a non-doctor) ethics committees are for research. That’s the point here, isn’t it. This is being presented as treatment, even though risks and benefits are both unclear. Research would at least have some kind of consistent protocol and be written up and shared at some point. Hopefully. This has none of the oversight of research, which can be stopped when adverse effects are seen.

Completely agree with you on the impossibility of proper consent though.

I want to flag that this talk is from 2 years ago.

Yes, we know it’s from 2 years ago. There’s no indication anything is better now and it still provides valuable insight into the thinking behind such decisions. What we know now is that several staff have left with huge concerns about the homophobia and lack of evidence behind these decisions. The evidence for puberty blockers hadn’t improved at all.

GreenJumpers I’m not sure of the relevance of the date? The talk was given at a time when PBs were being painted as this lovely fully reversible, buying time option. NHS England recently updated their guidance saying that actually there are a lot of risks and unknowns about them. This talk gives a broader view of some of the concerns around PBs and makes it clear that within the Tavi, this was known well before the guidance was updated. How many families went through what is effectively an “informed” consent process without realising what they were agreeing to?

I want to flag that this talk is from 2 years ago

I think it's quite shocking that this is from 2 years ago. All this time organisations such as Mermaids have pushed the idea that puberty blockers are fully reversible when presumably they know full well that the evidence does not exist to support that.

Mermaids still say, right now, that blocking puberty using GnRHa drugs is fully reversible, despite the NHS no longer being so certain.

Yes that was what I was coming back to comment on. I’m not sure that Mermaids do now prominently mention the risks and unknowns of blockers, or that they do now avoid oversimplification on their website.

Eg Mermaids say blockers ‘simply give time to reflect’ in their info pages for parents, under the section: What if they change their mind ? I also didn’t spot a section on risks of medical, hormonal or surgical ‘transition‘ treatment, even if the child doesn’t change their mind..

What if they change their mind ?
‘It’s estimated by the NHS that around 1-2% of transgender people who follow a medical pathway change their mind and stop living as trans. The reasons for this are unclear but it is not always because they regretted transitioning. For some people, transitioning was part of their journey towards discovering their true identity; for others, it’s because they found being trans was too difficult in an often hostile world. For some, they realise they aren’t trans and are non-binary or cisgender instead. The important thing to remember is that all journeys and identities are valid.

Supporting your child doesn’t mean they’ll take a particular direction or follow a particular medical pathway, like hormone therapy or gender affirming surgeries. Still, if they do, then medical transition in young people usually consists of taking hormone blockers after the initial stages of puberty. Hormone blockers stop the young person’s body changing in ways they don’t want it to at that time, in the hope it will alleviate any distress those changes may be causing them. Blockers simply give time for them to reflect; they can stop at any point and a puberty typically associated with the gender they were assigned at birth will resume. We do not offer advice on medical choices and defer to NHS advice in all cases.

Further medical steps can be taken via NHS specialists in a staged approach. This is done with full knowledge, consent and guidance at every step of the way. Currently the NHS requires someone to be ‘around 16’ before they can commence on hormone replacement therapy. Some people then progress on to physical affirmation surgeries however, the NHS does not typically commission this for anyone under the age of 18.

At Mermaids, we believe in allowing young people to make the right choices for them, without feeling any pressure to be what others might expect them to be. We have supported countless kids over the years and each and every one of them has followed their own unique path.’

mermaidsuk.org.uk/parents/

The Health Research Authority, the regulator of UK research involving the NHS said about research involving blockers and about clinical treatment (so commenting on something that is not part of their legal powers, which regulators tend not to do..):

Researchers and clinical staff working in gender identity development should consider carefully the terms that they use in describing treatments e.g. avoid referring to puberty suppression as providing a ‘breathing space’, to avoid risk of misunderstanding.

www.hra.nhs.uk/about-us/governance/feedback-raising-concerns/investigation-study-early-pubertal-suppression-carefully-selected-group-adolescents-gender-identity-disorders/

So Mermaids’ ‘simple’ presentation about blockers is still out of step of what other official bodies are now saying about blockers based on the available evidence. Though it is good that Mermaids say that they would defer to NHS advice (but since they don’t have the knowledge NOT to defer to that in any individual case, that’s not saying much..)
It’s odd that where there is generalisable information available about risks to children and young people in general from blockers, that this isn’t spelt out in big flashing lights though. Or even a link to the NHS web page?

The NHS is now listing the side effects and unknowns of blockers which is a major step and very welcome

www.nhs.uk/conditions/gender-dysphoria/treatment/
‘Some young people with lasting signs of gender dysphoria and who meet strict criteria may be referred to a hormone specialist (consultant endocrinologist) to see if they can take hormone blockers as they reach puberty. This is in addition to psychological support.

These hormone blockers (gonadotrophin-releasing hormone analogues) pause the physical changes of puberty, such as breast development or facial hair.

Little is known about the long-term side effects of hormone or puberty blockers in children with gender dysphoria.

Although the Gender Identity Development Service (GIDS) advises this is a physically reversible treatment if stopped, it is not known what the psychological effects may be.

It's also not known whether hormone blockers affect the development of the teenage brain or children's bones. Side effects may also include hot flushes, fatigue and mood alterations.‘

This is so upsetting

As a psychiatrist I can't understand how this is allowed to happen

Any Dr has personal responsibility for any drug they prescribe. We should all be abiding by 'first do no harm'. Patients ask me for medication that I think will harm them fairly often and I refuse to prescribe it because in fact it is not their choice to demand eg become addicted to benzos. I have a responsibility to keep them safe.

These are unlicensed medications with barely any evidence base for their use. The 3 studies that do exist contain around 150 children of mixed ages and birth sexes. Largely the findings are reported as though they apply to all but there is evidence that girls do worse then boys and are more suicidal after hormones than before (boys are not). The Tavi has treated hundreds of children but only enrolled a tiny fraction of them in studies to actually look for the effects. and then did not publish the findings they do have. They are carrying out a vast unethical unregulated experiment on children. This should be a scandal.

The Dutch group who pioneered this stuff prescribed to children over 12 but the American Endocrinology guidance is that it is to prescribe based on puberty stage not age which can be children as young as 10. There is no evidence at all for this. Ten year olds do not have the cognitive ability to have opinions that are reliably different from their parents/ authority figures. What kind of parent starts their child down a path to sterility, surgery and lifetime medical treatment aged 10. There are either hugely misguided or abusive.

In the Dutch study 55/70 went on to have surgery. You can see this as they were right to be affirmed as TRAs do but I see it as they were started on a path that they cannot turn back from

Having puberty delayed for years whilst peers are undergoing it does result in osteoporosis and in psychological damage. It also forces them to continue on this path as they have gone so far. Only 10-30% of children who express that they are the opposite gender actually continue with that if left to their own devices/ offered counselling.

Drs who are involved in this must have justified it to themselves that they are preventing suicides or something. There are always a few who will engage in unethical practices eg execution in the US. Professional bodies should be coming out against this. As a Dr you can prescribe anything to anyone but if it is unlicensed, unevidenced and harmful usually you will be questioned by checks and balances pharmacists, colleagues and ultimately the GMC and CQC. Where are they in all this? The Tavistock as an institution needs to be condemned for allowing this. The NHS specifically commissions this service and funds it.
There are a lot of people responsible for what I think will turn out to be a terrible scandal in 10-20 years time.

I think it’s a passing of responsibility - the psychiatrist/psychologist makes gender dysphoria diagnosis and refers to an endocrinologist who prescribes the meds. When it comes to GIDS the psychs (located in Belsize Park) aren’t even on the same site as the endos (located at UCH).

This allows both to absolve themselves of responsibility, they each rest a bigger portion of blame on their colleague.

Otherwise, how would they sleep at night?

They did originally set up a research study in 2011 for children over 12 but scandalously they never reported their findings except internally in a paper to their board and they have now adopted their research protocol as standard treatment with the exception of revising the age limit downwards.
There is no explanation for how what was considered experimental treatment has now become mainstream.
I just can't imagine another branch of medicine where people would think that was OK.
When there is a new cancer drug all patients who have it are enrolled in trials (they can't access the treatment outside that except privately) and the results are published and then NICE takes a view on whether the treatment is effective and cost effective. NHS Trusts won't prescribe if not NICE approved. Hence my mum had to pay for her breast cancer treatment whilst awaiting approval.

And yet this totally unevidenced, possibly harmful treatment is being funded.

If you want to be really enraged have a look what GenderGp is saying. According to her it's all completely safe and reversible and actually essential. Her financial interest I am sure has nothing to do with her views.

I think that the Drs will feel they are covered by guidance from WPATH etc and just acting in accordance with that. Guidelines can be dangerous if produced by a small number of 'experts' with a biased view.

Absolutely agree, where are the professional bodies in this? The BMA ethics committee, GMC and CQC, MHRA.
Also where is the democratic oversight? Parliamentary select committees and MPs. Women have been raising these concerns for years. FFS, These are CHILD PATIENT SAFETY and CHILD SAFEGUARDING CONCERNS. Not just a political disagreement between equals.

If the many organisations with power in this area actually cared, then they would ensure those kids showing gender-related anxiety and distress were treated to the same high standards that they would expect for any other kids.

The climate that has been made around this by genderist trans activists means that many organisations and people are too scared to ask questions or to allow others to do so.

It’s so wrong. Medicine should always be evidence-based not politically-driven. Research should precede treatment. Treatment should always be shaped by ongoing research findings, when there is paucity of evidence.

The RCPsych 2018 guidance says

• being trans is not a mental disorder. Gender Identity Disorder has been changed to Gender Dysphoria in the recognition that some people are happily identifying as trans.
• 'conversion therapy' is not supported but 'exploring gender identity issues' presumably in therapy is allowed as long as the aim is not conversion (which it wouldn't be)
• a watch and wait policy is advised for children and adolescents until there is more evidence

That seems mainly sensible so it's not the RCPsych position that children should be transed.

The BMJ certainly has published articles criticising the use of puberty blockers but not sure if they have an official position.

The GMC and CQC tried to go after Helen and Mike Webberly (GenderGP) at least but they are still able to carry on by having an online service based outside the UK. Currently offering £100 per month for puberty blocker injection that you can get after an online 'assessment' by someone who is a Gp not even a specialist.
I really cannot understand how this is allowed to continue.

WPATH are a professional organisation

Professional organisations require a level of ‘professionalism’, qualifications for membership (although there may be associated lay members) and generally some degree of oversight of their members. WPATH has none of these things. It is not a professional organisation, it is an interest group and a lobby group.

NICE takes a view on whether the treatment is effective and cost effective. NHS Trusts won't prescribe if not NICE approved.

Not all treatments get looked at by NICE - only certain ones are selected. Also NICE don’t just look at effectiveness of treatments (How well does it work/how much does it cost compared to other treatments?), they can also consider efficacy and safety (Does it work? Is it safe?).

I have just read Lily Maynard. Couldn't believe it. So I send a message to the DofH. Not eloquent, not well thought through but I was just so, so mad

I have read the page by Lily Maynard lilymaynard.com/costing-the-kool-aid-oxford-university/ about funding for Transgender research. I am all for research but the people on the panel and the concerns expressed, seems to have been ignored. The funding was awarded. I wonder why on earth you think Tax Payers money can go to what will become biased research. Why is the NHS always demanding more and more money, when it cannot think clearly about who it gives our money to. Find a good quality research programme to award money to and get our support - not this.