Earlier this month, NHS England confirmed its plans to end the ‘routine’ prescription of puberty blockers to trans kids. To most former GIDS patients, the idea that the use of puberty blockers was ever routine is laughable.
While some former clinicians have complained that practically everyone under the care of GIDS was prescribed puberty blockers, the available data tells a different story. Freedom of Information Act requests by the anti-trans journalist Hannah Barnes reveal that of the over 9,000 children seen by GIDS since its inception, fewer than 1,300 were ever referred for a prescription for blockers.
Despite 99% of young people who had been through GIDS opposing the direction of the service that will replace it, NHS England is pressing ahead with the plans to further restrict the use of puberty blockers, and integrate assessments of autistic traits into the service.
A 2014 study carried out at GIDS tested the use of puberty blockers in early teens, who were then allowed to progress onto cross-sex hormones at age 16. On the basis of the study and other studies in the US and the Netherlands, GIDS opted to continue prescribing puberty blockers.
However, there were some important changes to prescribing practices. Over three quarters of the people given puberty blockers were 16 or older when they started using them. This both made the treatment ineffective at suppressing a puberty that had begun years before, and created potentially serious risks to patients’ bone density.
The use of hormone blockers without cross-sex hormones for trans people in their late teens has never been studied, but it was the de facto medical route taken at GIDS for the minority of patients offered medication of any kind.
Elliot learned at his first GIDS appointment, when he was 16, that he was unlikely to ever get blockers before he was old enough to be referred to an adult Gender Identity Clinic. “I’ll be like an adult. I don’t really see a point of going on hormone blockers when I’ve gone through the majority of my puberty,” he said.
The idea of waiting was devastating for him, “I don’t know if I’d be able to survive that,” he recalled thinking. “The process takes so long that by the point where I’d get on to [cross-sex] hormones, I’d be about 19 or 20. Hearing that at the age of like 16 when you’ve already waited so long, it’s just really hard to swallow.”
The use of puberty blockers is meant to create space for reflection and ensure transition is the right choice for them at a later date. Many trans advocates argue that medically competent people should be able to access cross-sex hormones before age 16, but NHS trans healthcare presumes incompetence up to age 18, and, arguably, into adulthood.
Puberty blockers at GIDS could not be accessed without at least six assessment sessions. The sessions were typically months apart, meaning that this process could take two to three years from first appointment. While in some cases the six-session requirement may have been waived, extending the assessment period beyond six sessions was common.
Grace*, whose mother was supportive throughout her time at GIDS, says it felt like excuses were made to lengthen the assessment process. “Because I was very hesitant about talking about stuff with them, they determined that this was an issue with my communication style with my family, and referred me to family therapy at CAHMS,” she said.
She and her mother were told by GIDS clinicians, “We will continue with assessments, but we will not refer you for anything until the family therapy is complete.” Delays like this were common according to Grace. “A lot of [the clinicians] were doing it absolutely by the book, which was a very, very strict, harsh, pathway,” she said. “Some people were stricter than that, and never ever referred for anything.”
As referrals to GIDS increased and the service did not expand to meet demand, most people would not be offered a first appointment before turning 18, never mind make it through the lengthy assessment process.
Questions asked in these appointments – which patients had to attend with their parents even if they were over 16 – were frequently invasive and humiliating, including detailed interrogations about if and how patients masturbate.
Even when the questions were less humiliating, many patients were hesitant to be honest with clinicians, fearful that a ‘wrong’ answer in could prolong the assessment period and delay treatment.
Elliot was suffering from an eating disorder during his time at GIDS, but “I was terrified to mention this to the gender clinic because then there’s a huge possibility that they would have stalled my treatment,” he said.
Patients who were not out at school were regarded suspiciously. Clinicians believed that social transition must precede medical transition, even in social contexts that would make that unsafe. Anna*, who attended a college where the only out trans student was horribly bullied, was frustrated when clinicians suggested she wear girls’ clothes to school. “It felt like the ask of me to do that was essentially like asking me to commit self-harm,” she said.
Assessments sometimes involved even greater breaches of privacy. Grace recalls encountering a “distraught” woman in the waiting room, who had stepped out of her daughter’s appointment when “the clinicians had “asked for her daughter’s phone so they could go through it and check if she was in any trans groups on social media”.
For those who made it through the assessments, a common final hurdle to accessing medication via GIDS was an examination of breast or genital development. Routine genital exams in order to access hormones are forbidden (but still sometimes happen) in adult trans healthcare. However, they remain a core part of child trans healthcare. The Endocrine Society recommends the examination to ensure that puberty has begun before prescribing blockers, which assumes correct prescription of blockers near the onset of puberty.
John*, the father of a former GIDS patient and trans healthcare advocate, said “I know young people who’ve been unable to access care because they would not go through that process.”
Anna and Elliot both had these exams, which involved clinicians touching intimate body parts. Elliot, who has since written about his experience at GIDS, says his assessment “was handled very badly”. He remembers the paediatrician who assessed him saying “You’ve got a really good body. It would be a shame if you got surgery.” He was suffering from an eating disorder at the time, and remembers thinking, “I’m dying. Why are you saying this to me?”
Anna, whose doctor also made comments about her body, resented being forced to undergo the examination. “I don’t think it was medically necessary. I don’t think it was justified, she said. “I think that the amount of distress it caused me has traumatised me. I’ve had trauma responses to subsequent examinations of a similar nature for that reason.”
The protocol was not applied universally – Grace was able to access blockers without the examination when she was 17 – but it was generally considered a prerequisite to receiving medication.
Hormone blockers wouldn’t have been her first choice, but “it is the fastest way of accessing [cross-sex] hormones on the NHS,” said Grace. She was ultimately allowed to take cross-sex hormones while waiting nearly two years for an adult gender clinic appointment, after her endocrinology team agreed it was “medically irresponsible” to continue using blockers with no hormone replacement therapy.
Anna wasn’t so lucky. A scan she had before she started blockers revealed she already had low bone density for her age, but blockers were the only thing on offer, so she opted to take them. “I was feeling quite acute distress because I was going through the late stages of puberty,” she said.
Anna later developed osteoporosis. The blockers are one of several possible contributing factors, another being that she was underweight at the time. “What I regret is that I was just put in this situation,” she says. “I felt that what was deprioritised was my needs, both medical and psychological, and what was prioritised was their caution.”
Reflecting on the position she was placed in, she said, “I did not have as much concern for my bone density as I do now, because there is a recklessness that comes with being a teenager.”
However, her lack of trust in her clinicians generally also contributed to her lack of caution. “It’s very difficult for me to feel that they have my best interests in mind,” she said. “That doesn’t actually prepare you well to make informed decisions about your healthcare.”
The new children’s gender service promises to replicate many of the problems of GIDS, including the lack of trust between patients and clinicians, while offering far less possibility of accessing medication.
The NHS did not respond to my requests for comment about the service’s clinical trial for puberty blockers, so we cannot know if the service will still require invasive medical exams, or what age cohort will be included in the study.
What is clear is that the needs of the vast majority of trans youth will not be met by this service, just as they were not met by GIDS. Kids need tailored support, harm-reduction and empathy, none of which will be found in NHS gender care.