NHS use of puberty blockers legal challenge begins
By Alison Holt, January 8, 2020
Legal action is being launched against the NHS over the prescribing of drugs to delay puberty.
Papers have been lodged at the High Court by a mother and a nurse against the Tavistock and Portman NHS Trust, which runs the UK’s only gender-identity development service (Gids).
Lawyers will argue it is illegal to prescribe the drugs, as children cannot give informed consent to the treatment.
The Tavistock said it had a “cautious and considered” approach to treatment.
Papers were formally lodged on Wednesday by the lawyers for the complainants.
The Tavistock will have three weeks to submit its response, after which a judge will consider the case and decide on the timings of any hearings.
Referrals up
The nurse, Sue Evans, left the Gids more than a decade ago after becoming increasingly concerned teenagers who wanted to transition to a different gender were being given the puberty blockers without adequate assessments and psychological work.
Since then, she says, even younger children are being given the drugs, which block the hormones that lead to puberty-related changes including periods and facial hair.
The number of young people referred to the Gids rose from 678 in 2014-15 to 2,590 in the past year.
Of these 2,590:
- more than 1,700 wanted to transition to male
- 624 wanted to transition to female
- most were in their early to mid-teens
- 171 were under 10
Ms Evans said: “I used to feel concerned it was being given to 16-year-olds.
“But now, the age limit has been lowered – and children as young as perhaps nine or 10 are being asked to give informed consent to a completely experimental treatment for which the long-term consequences are not known.”
‘Too young’
The mother, known only as Mrs A, has a 15-year-old with autism who is on the waiting list for treatment at the Gids.
She told BBC News her child presents to the outside world as a boy but, while she is happy to allow that, she is extremely concerned about the possibility of drugs that are not fully understood being prescribed.
“I’m worried that they will look at her age and say, ‘Well, she still says this is what she wants and therefore we will put her on to a medical pathway,'” Mrs A told BBC News.
“And given her communication of what she feels internally is slightly different because of her autism spectrum, I worry that what she says and what she means are often two different things.”
What are puberty blockers?
They are drugs which can pause the development of things like breasts, periods, facial hair and voice breaking
They can be prescribed to children with gender dysphoria who feel their sex at birth doesn’t match up with their gender.
This is meant to give them more time to weigh up their options before they go through the physical changes of puberty.
Although puberty blockers are described by the NHS as reversible, Gids acknowledges that their impact on brain development and psychological health is not fully known.
Mrs A said her child was too young to really assess the potential impact of puberty blockers on the rest of their life, including such things as fertility.
“As an adolescent, what we think will make us happy is not necessarily what will make us happy,” she told BBC News.
“It might help us in the short term – but it might not help us in the long term.”
‘Rated good’
A Tavistock and Portman NHS Foundation Trust official said: “It is not appropriate for us to comment in detail in advance of any proposed legal proceedings.
“The Gids is one of the longest-established services of its type in the world with an international reputation for being cautious and considered.
“Our clinical interventions are laid out in nationally set service specifications.
“NHS England monitors our service very closely.
“The service has a high level of reported satisfaction and was rated good by the Care Quality Commission.”
What are puberty blockers?
BBC News, January 8, 2020
Puberty blocker drugs are prescribed to some children who are experiencing gender dysphoria, to temporarily stop their bodies developing.
The NHS describes gender dysphoria as “a condition where a person experiences discomfort or distress because there’s a mismatch between their biological sex and gender identity”.
The drugs suppress the release of the hormones oestrogen and testosterone, which start being produced in much bigger quantities during puberty.
The hormones tell your body to develop things like breasts, periods, facial hair or a deeper voice.
Suppressing oestrogen and testosterone slows or stops these things developing. The blockers are also used to treat conditions which cause premature puberty in much younger children.
Legal action is being launched against the NHS over the prescribing of the drugs.
Why are they used?
The Gender Identity Development Service (Gids), based in London and Leeds, says that pausing puberty is designed to give a young person with gender dysphoria more time to consider their options – while not having to go through the additional distress of their body changing in a way they do not want.
When someone stops taking blockers, their puberty should resume.
The limited evidence that exists suggests that most young people taking puberty blockers for gender dysphoria do not stop taking them, though, and many go on to take cross-sex hormones.
Cross-sex hormone therapy involves taking either oestrogen or testosterone and is a treatment only available to over-16s on the NHS in England.
By pausing puberty and the development of things like breasts or facial hair, someone who goes on to have cross-sex hormone therapy may avoid having more invasive surgical treatment like having their breasts removed (mastectomy) later on.
Why have they been controversial?
Legal action being launched against the Tavistock and Portman NHS Trust, which runs the gender identity clinic, focuses on whether children can give informed consent to treatment with puberty blockers.
Puberty hormones are linked to changes not just in the body but also in the brain.
Gids says that it is not yet known whether puberty blocker treatment “alters the course of adolescent brain development”.
It also says that the full psychological effects of the blocker are not yet known.
Some early data from one study showed some taking the drugs reported an increase in thoughts of suicide and self-harm but it was unable to say whether it was the drugs or something else causing the increase.
Experts on clinical trials criticised the design of the study but said the data warranted further investigation.
NHS England says, in its clinical guidelines, that research evidence around the long-term impacts of puberty blockers is “limited and still developing”.
Although they are considered by the NHS to to be a “fully reversible” treatment, since puberty can be restarted, the blockers may also have longer-term health consequences.
For example, the National Institute for Health and Care Excellence (NICE) lists a decrease in bone density as a possible side effect of triptorelin, the drug used by Gids.
The court case against the Tavistock and Portman NHS Trust will also claim puberty blockers may effect someone’s fertility and sexual functioning, although the evidence around this is limited.
One of the people bringing the court case, known as Mrs A, is the mother of a 15-year-old with autism who is on the waiting list for treatment at the Gids.
Gids says that there seems to be a “higher prevalence of autistic spectrum conditions in clinically referred, gender dysphoric adolescents than in the general adolescent population”.
Increase in referrals
There has been a large increase in children being referred to Gids in recent years.
Gender Identity Development Service annual referrals
Source: Tavistock and Portman NHS foundation Trust
While there is no clear explanation for this increase in referrals, Gids puts it down to greater awareness.
Large increases in referrals have also been seen at gender identity clinics elsewhere, for example in the US and Canada.
There has also been a shift in the past few years, with people assigned female at birth making up the bulk of the increase in young people wanting to transition.
Referrals by sex assigned at birth
Includes referrals that were not acceptedSource: Tavistock and Portman NHS foundation Trust
Who can they be prescribed to?
Puberty blockers when used to treat gender dysphoria can only be initially prescribed by a specialist, rather than a GP.
They are prescribed by the NHS to children or young people who have already started puberty. This process begins often years before any physical signs of puberty appear and has to be assessed by a hormone specialist.
Source: BBC News
