Letter to NHS England and Wes Streeting about puberty blockers trial

It’s not possible to keep secret who is on the active drugs as they definitely stop puberty and this would become apparent.

The research question is not whether these drugs stop puberty, but whether they cause physical damage, developmental and cognitive damage, prevent brain maturation, or cause children to become concretised into an identity they would have otherwise grown out of, or whether in the long term children would do better with watchful waiting and psychological support. (By better I mean they learn to cope with their life without a lifetime of medical treatment and surgery of variable quality). It needs very very long term study to see if sterility and/or inability to breastfeed and/or reduced pool of potential partners is regretted later in life.

It’s a very difficult study to design, and it’s beyond irresponsible that clinics have not kept follow-up data on all the patients they have treated so far.

I suppose it depends on how the trial is to be set up. I’ve not read all the NHS England text but they mention

”a risk acknowledgement form should be developed for use with patients and/or parents or carers”

Those signing up for puberty blockers in recent times were allegedly seen twice for affirmative care before being waved through to the endocrinologist. That’s all quite warm and fluffy….

But this is a proper trial and ethics requirements. So let’s say that the current trial states that they will exclude anyone with autism or a history of sexual abuse/trauma? And then they put all the risks on the consent form about bones, heart attacks, fertility etc etc That you as both a parent and child both have to sign…

Might the idea of this trial disappear when they rule out 90% via autism/abuse and then the remainder chicken out?

I was under the impression that issues of consent for children, say with cancer, trying experimental drugs, is highly regulated with ethics committees and significant multi disciplinary evaluation?
It's only this branch of "child healthcare" where it's been a wild west with disreputable political activist groups / adults able to influence the treatment of children for their own ends? (see Hannah Barnes' book Time to Think for details of the groups).
Why would the health treatment of other ill children be affected by how this this group of seriously mentally vulnerable children are treated?

Thanks for posting.

Until there’s a medical trial theres no way to stop craziness so I can’t see how we avoid it. There are so many people in the cult they won’t accept it being banned otherwise. Ive heard MPs stand up in parliament and ask for the ban to be lifted with apparently no interest in any evidence base at all. Scary!

I don’t like the idea of this trial at all , but if all the participants are voluntary - Presumably half will be allocated treatment and the other half control - and they are prepared to offer themselves up as human Guinea pigs knowing the risks, then maybe we should thank them for their service. I know we should keep an open mind but I think we all know that it’s a bad idea to mess with hormones like this if you don’t have to…

Or is this giant ruse to demonstrate that once the risks are explained no one in their right mind will sign up to this?

Do we know how long the follow up is? I hope it’s like a long long study? Into mid life at least surely?

I don’t completely disagree. There needs to be a stringent process in place for the most severe cases to access treatment. My concern is going down the route of not being medically competent leading to a restriction of other healthcare for otherwise gillick competent under 16s

Of course you can, just because they’re unproven doesn’t mean they have to be proved.

The problem is using children below the age of consent to potentially give up their future fertility, brain and body development and a whole host of other medical issues.
They're highly vulnerable children in the grip of a mental illness / social contagion believing that their bodies are wrong but a sex change will cure them.
How can they give informed consent to such enormous life long risks?

I hope NHS England listen!
The only thing we know for sure is that prolonged use of puberty blockers harms children. It's not worth it. Or if they think it might be, they already have ex-patients whose outcomes they can try to trace.

This doesn’t make any sense. You can’t advocate for no clinical trial and complain about unproven interventions at the same time.