IIn autumn 2019, leading pediatrician Hilary Cass agreed to conduct a review of international research into puberty blockers for NHS England. She expected it to be a short, simple task.
“I thought it would be a few afternoons a month for six months and then I could go home and get on with my retirement,” she said, laughing wryly the morning before the publication of her review of gender identity services, a project that has become one of the most controversial evidence review projects in recent medical history.
The work has developed into “a 24-hour obsession with helping to make things better” and has placed her in the vortex of a debate she describes as toxic, politicized and ideological.
Cass’s review is written in a calm, clinical tone, but there are moments when her anger at the way NHS England has cared for a generation of vulnerable children is barely disguised.
Doctors have become ‘anxious’. The available evidence is ‘poor’. Her attempts to conduct a vital and comprehensive review of the outcomes of all 9,000 children and adolescents treated at Tavistock and Portman’s Gender Identity Development Clinic (Guide) between 2009 and 2020 were “thwarted”.
Cass knows her recommendations will be hugely controversial and that some children waiting for treatment will be upset by her conclusions, but she is adamant about putting the interests of young people first.
“We let them down because the research isn’t good enough and we don’t have good data,” she said.
“The toxicity of the debate is perpetuated by adults, and that in itself is unfair to the children caught in the middle. The children are being used as football and this is a group we need to show more compassion for.”
The scope of her review is enormous; she has set out to review all the available evidence on which gender medicine is based worldwide, and has attempted to answer the puzzling question of why the number of children referred to gender clinics in Britain and other developed countries began to rise exponentially. increase around 2014, and why so many more girls sought treatment. (In 2011-2012 there were just under 250 referrals to the service; by 2021-2022 this had increased to over 5,000 referrals.)
She is also charged with making clear recommendations on how services can be improved, following the closure of the Tavistock clinic last month, a closure that came about as a result of her interim review. In the future, she wants services to offer a wide range of interventions, rather than having a ‘tunnel vision’ on gender.
She isn’t even sure that future clinics should have gender in the name, noting that we need to “move away from just naming these gender services, because young people are not defined solely by their gender.”
Cass says it is not her place to comment on whether some professionals should face disciplinary proceedings for their role in what went wrong.
“I don’t think you can point the finger at anyone in particular; it was a system failure,” she said.
“The toxicity of the debate has been so great that people have become afraid to work in this field.”
Medical professionals experienced a sense of fear “of being called transphobic if you proceed more cautiously,” she said.
Others worried that they could be accused of using ‘conversion therapy if, again, they take a cautious or exploratory approach’ and some doctors expressed ‘fear about what colleagues would say if they spoke up and expressed an opinion that is inconsistent with theirs. ”.
The consequence of this increasing nervousness among doctors over the past fifteen years is that many children exploring their gender (which Cass describes as ‘a normal process’ in adolescence, which does not necessarily require any NHS input) have been prematurely diverted to chronic oversubscribed specialist clinics. , and remained on waiting lists for years without any support.
“There are many more young people now questioning their gender; What’s really important is that they have a space where they can talk to someone about it and work it out. The problem is that even though they were on a waiting list, they simply didn’t get that help. They have only had the internet to help them and that is not always helpful.
‘Sometimes they have jumped to conclusions and ruled out options when there might have been many different ways to solve their problems. The aim – and I have no illusions that this will happen anytime soon – is that they should have someone to talk to much sooner before they limit their options.”
Cass believes that for a minority of young people, a medical transition will be the right option, but she is clear that there is no solid evidence base to justify the use of hormones in children and adolescents.
Her previous research led to a decision by NHS England to stop prescribing puberty blockers to children and the new research recommends “extreme caution” before prescribing masculinising and feminising hormones to children under 18.
“We anchored it in this focus on medical interventions. And certainly some young adults said to us, they wish they had known when they were younger that there were more ways to be trans than just a binary medical transition,” she said.
A lengthy section of her report looks at whether nature, nurture or other factors can best help explain the rising number of referrals to gender clinics. Cass’s conclusions are nuanced, but she acknowledges that Generation Z faces unprecedented exposure to social media and the internet.
“It’s a social experiment – we don’t know what that has done for the generation that’s coming up now – what’s been good and what’s been bad,” she said. “Biology hasn’t changed in recent years, so it’s not like that’s changed things… We need to think very seriously about the impact of social media, not just in terms of influencers, but also the effect of long hours on social media. .”
She added: ‘There was a very dangerous influence. Some of them give them very unbalanced information. Some were told that parents would not understand, so they had to actively divorce or distance themselves from their parents; “All the evidence shows that family support really is key to people’s well-being,” she said.
She acknowledged that some children may have been harmed by being incorrectly prescribed hormone treatments, but she said it was impossible to say how much. “We really don’t know how many children have benefited and how many children and young people have been harmed because we don’t have adequate follow-up data. We urgently need that information.”
It was “incredibly disappointing” that the research she had hoped to conduct into the outcomes of 9,000 former Tavistock patients had been blocked by the adult gender clinics, which refused to contact former patients on her behalf to seek consent.
Former health secretary Sajid Javid had amended the legislation to allow researchers to link NHS numbers from before and after the transition, but the study had to be halted when all but one adult clinics refused to cooperate, Cass said.
“I do think it was coordinated. It seemed to me that it was ideologically driven,” she said. “There was no substantive reason for it. So I can only conclude that this was because they did not feel that it was the right decision to retrieve this data.”
Cass said she had a distant relative who had a trans identity, but her perspective was not influenced by this connection. “They were from a different generation and made the transition late in life; I don’t think there were really any transferable messages for this group of young people,” she said.