NHS England: Puberty blockers will only be prescribed to children attending gender identity services as part of clinical research

[NewBootsAndRanty]

Apologies if there's already a thread!

https://www.bbc.co.uk/news/uk-65860272

Puberty blockers will only be prescribed to children attending gender identity services as part of clinical research, NHS England has announced.

The move comes after an interim report into children's gender services said there were "gaps in evidence" around the drugs.

Blockers are used to "pause puberty" and work by supressing hormone release.

Dr Hilary Cass's report called for a transformation in the model of care for children with gender-related distress.

Currently, if a child seeks medical help, the drugs are one of the options a doctor could offer to help delay the onset of physical changes that do not match a child's gender identity.

This change will come into effect when new clinics replacing the Gender Identity and Development Service (Gids) begin to open later this year. No patients being treated by the current Gids service will be affected.

Children and their families will also be "strongly discouraged" from obtaining gender-affirming drugs such as hormones, from "unregulated sources" or online providers.

What are puberty blockers?
Closure of Tavistock gender identity clinic delayed
Top doctor questions need for change at gender clinic
A clinical study, run by the new Children and Young People's Gender Dysphoria Research and Oversight Board, will look at the impact of drugs which delay puberty.

Further details on how the study will run will be released in the coming weeks, but only those signed up to take part in the research will be prescribed puberty blockers, except in exceptional circumstances on a case-by-case basis.

It is expected that the study will mostly involve looking at patient data and records.

Recent data from Gids looked at a random selection of 312 patients in one year and found 47 of them accessed hormone suppressants.

An NHS spokesperson said: "The NHS is today publishing an interim specification for gender services for children and young people in line with advice and recommendations from the Independent Cass Review - this will allow the new centres to finalise their preparation for service provision later this year.

"The NHS is now engaging on the proposal that puberty blockers will not be made routinely available outside of research. We will develop a study into the impact of puberty blockers on gender dysphoria in children and young people with early-onset gender dysphoria, which aims to be up and running in 2024."

More than 5,000 people responded to a consultation on the new service specification last year, and the new model will be implemented when the first of the new clinics opens in the south of England this autumn in partnerships with children's hospitals.

The current service, run by the Tavistock and Portman Trust, is to close in March 2024 following an independent review carried out by Dr Cass - the paediatrician found the service is "unsustainable" and said a new model of care is needed.

Dr Cass said many children referred to Gids have complex needs that can be sometimes overlooked and around a third have autism or other types of neurodiversity.

The NHS says a "significant proportion" of young people with concerns related to their gender can also experience other complexities related to mental health, neuro-development and family or social matters.

The new service will take a new "holistic" approach, focusing on the needs of each child individually with "careful therapeutic exploration".

It will be updated further after the final report by Dr Cass is published.

In order to be prescribed puberty blockers on the NHS, a patient would currently need to first be assessed by Gids and referred to an endocrinologist.

More than 7,000 young people under the age of 18 are awaiting their first appointment, with the waiting list thought to be more than three and a half years long.

I saw this on James Esse’s Twitter last night.
thank you for posting

About time.

Further details on how the study will run will be released in the coming weeks, but only those signed up to take part in the research will be prescribed puberty blockers, except in exceptional circumstances on a case-by-case basis.

Not good enough. What happens if they all sign up for it?

Hi @NewBootsAndRanty we've moved your thread over to S&G.

Well its a step in the right direction. They were previously demanding GPS prescribe when requested and if the issue of competence was raised they were told to do CPD. That they’ve finally decided evidence based medicine applies to all patients without exception is a relief.
I’d like to know who was actually behind imposing the original policy on health professionals and who in the NHS agreed to it. So easy to hide behind policy statements with zero accountability.

Thanks @YetAnotherBeckyMumsnet - I wasn't sure where it should go!

My friends 8 year old sister is experiencing precocious puberty. Apparently she won’t be prescribed anything to delay things as their GP says it’s likely to be more harmful than helpful. 🤷‍♀️

So there is a go ahead to use puberty blockers on some children as an experiment- part of clinical trials.

Not sure I am happy ab0ut that.

If they must experiment on children, and now it’s clear there isn’t enough evidence to show it’s cruel to withhold puberty blockers, the clinics should be attempting a proper double blind clinical trial, where the patients and their parents don’t know whether they are receiving the drugs or a placebo. That way, they would ascertain much more quickly whether the drugs actually work and they would have some gold-standard research to prove it.

But if they - the Tavi and Gender GP for example - have been handing puberty blockers out like sweets for years, surely there's already an absolutely wealth of clinical data out there for researchers to tap into ... oh, wait .... that requires someone to actually keep records!

I wonder why no one did. Incompetence? Strategic incompetence?

Im optimistic about this, i see a lot of fear about "oh so its okay to experiment on kids" - but this means that if anything happens with puberty blockers, it'll be something with ethical approval, follow-up and publication.
This is the same thing as what Sweden did, no trial has actually started yet. I wonder how what the process to get ethical approval will be like.

There is increasing evidence that this is true. The biggest class action against PBs in the US is by people prescribed them for precocious puberty, not gender dysphoria.

And of course not a word of acknowledgment or apology to those of us who have been screaming about this for years and called bigots and sent death threats - not a nod to people who’ve lost jobs and friends for being against the sterilising of children. No acknowledgment that they have been practicing gay conversion therapy. Just quietly move on.

of course I’m pleased, but I’m also RAGING

I don't know how that could be possible?
We know that puberty blockers delay puberty, so presumably the recipient would notice the halt in development?

The problem is the definition of 'work' in this case? What's the end game - reduction in distress, increase in 'trans joy'? Over what period of time? 1 year, 2 , 5, 10, 20?

(I guess there are ways to measure, but it would have to be tightly controlled to stop bias.)

Yes, you can't have a blind trial: it will be obvious to both patient and clinician who had been given PBs.

You could, in theory, randomly allocate children to PBs or no PBs, but I doubt that would get ethical approval. They will probably have to settle for a cohort study - close follow up of any children who do receive them.

It needs to be longitudinal too. It's not enough to say that six-months later the Guinea pigs kids are happy. There needs to VvE very long term follow up on physical and psychological sides. And there would need to be a large enough sample that as time goes on, the different experiences have a chance of being significant, rather than anecdotal.

I can't imagine any of that happening.

The problem is the definition of 'work' in this case? What's the end game - reduction in distress, increase in 'trans joy'?

I don't think anyone prescribing these drugs has answered these questions. Until they can explain exactly what they are trying to achieve with these drugs and why they believe they are necessary, they shouldn't be prescribed to any children for gender dysphoria (or whatever term they're using now)

Any child distressed by the changes of puberty needs sympathetic psychological support. They don't need to be pumped full of drugs which will leave them out of step, developmentally, with their peers, and if the drugs are continued for long enough may leave them with crumbling bones and teeth, infertile and with no sexual function. This is an incredibly aggressive physical treatment for what appears to be a psychological condition. I don't understand how anyone can defend giving these drugs to children for this condition.

The problem is the definition of 'work' in this case? What's the end game - reduction in distress, increase in 'trans joy'?

A well-constructed study would carefully define these outcomes in advance of its commencement. But, as you imply, they are highly political in this case (is it a good outcome if no one desists?), so the chances are this won't happen.

Why is Polly Carmichael still there? This to me is terribly worrisome.

That's not true for the Tavi.

Post the Bell trial they stopped referring to endocrinology.

After the result was overturned on appeal, all referrals for PB's have to be approved by an independent multi-disciplinary review group.

This is still in force today and will continue as the regional centres are rolled out.

So will they still offer PB's? Yes.

However it's under a very strict criteria.

Agree.

However her hotline to mermaid's is severed and frankly her influence is very much diminished.

This jyst sounds a lot like patients signing off that they understand the medication is not yet proven to be safe to cover themselves in case of potential future lawsuits.

I would like to see PBs totally banned for all patients. However, one of the advantages of only giving them via a clinical trial is that the research ethics committee will be crawling all over the consent form. There will have to be transparency about the risks and the unknowns.

However, as a doctor, it is my experience that, if a patient has made up their mind that they want a treatment, they rarely change their mind, no matter what you tell them about the risks. So, honest consent forms are helpful to inform patients who are undecided or neutral, but not those who have been indoctrinated online that PBs are the answer.

Hopefully, before long the UK will follow Scandinavia in banning PBs for gender dysphoria, and the question will become academic.

This is not good enough. Using children as guinea pigs... No child should be subjected to those drugs in any shape or form
.

It's a start.