Thread by @hannahsbee

THREAD: A little over a month ago the NHS changed its guidance over the use of gonadotrophin-releasing hormone analogues – often referred to as puberty blockers – for the treatment of gender dysphoria in children and young people.

It’s a topic that @deb_cohen and I have covered for @bbcnewsnight, and yesterday Deb appeared on @BBCWomansHour to talk about how the guidance had changed and what we know about this area of treatment.
bbc.in/3eNJQVx

How has the guidance changed? Prior to May 28th, the NHS stated ““The effects of treatment with GnHR analogues are considered to be fully reversible, so treatment can usually be stopped at any time after a discussion between you, your child and your MDT multi-disciplinary team.”

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

nhs.uk/conditions/gen…

"Although the Gender Identity Development Service 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 effect the development of the teenage brain, or children’s bones.” As Deb explained, the NHS appears to be ‘recognising that there’s a lot of uncertainty about what we know and understand about puberty blockers in the long-term.

.@JackieDP, who as health minister was responsible for gender care, has asked Matt Hancock “What steps are the NHS Gender Identity Development Services at the Tavistock Centre taking to amend its services as a result of the updated guidance on the treatment of gender dysphoria?”

As Deb explained, ‘there are questions over what should happen next. Should the parents of those young people be informed about the evidence, or the advice on the evidence?’

Deb explains that the use of puberty blockers in treatment for gender dysphoria is an example of the off-label use of drugs. They are not licensed for this use, but rather for the treatment of a different condition - precocious puberty.

“And what we know about the evidence base is that … it’s been limited by the lack of what we call a randomised control trial, and that is the gold standard evidence to try and find out what a drug actually does and we also know there’s been a lack of control groups,” Deb said.

“And the studies that there are, are small and with quite short follow-up. So, there’s never really been a robust evidence base for puberty blockers but it’s the first time that the NHS is recognising that in quite a robust way.”

Deb talked about the findings of a Dutch study, first published online in 2010, which showed that all the young people who started on puberty blockers went on to take cross-sex hormones. That is taking hormones of the gender they wished to transition to.
pubmed.ncbi.nlm.nih.gov/20646177/

It’s a point we raised when we looked at this topic last year, exploring the Tavistock’s Gender Identity Development Service’s attempt to study the outcomes for those who took puberty blockers at the onset of puberty.

The findings of the Tavistock study are yet to be published in full. As Deb acknowledged, this is a difficult area and ‘there might be challenges in doing that study, but that is how we learn in medicine. That’s evidence based medicine.’

The evidence surrounding puberty blockers was analysed by evidence-based medicine experts at Oxford University last year. They concluded that the treatments 'remain largely experimental' and that 'there are a large number of unanswered questions.'
bit.ly/2YNFtV7

NICE will be undertaking a further, thorough review of the clinical evidence relating to both puberty blockers and cross-sex hormones later this year, as part of wider review instigated by NHS England.

england.nhs.uk/2020/01/update…