In the autumn of 2019, leading consultant paediatrician Hilary Cass agreed to conduct a review of international research into puberty blockers for NHS England. She expected it to be a short, straightforward task.
“I thought it would be couple of afternoons a month for six months and then I could go home and get on with my retirement,” she said, laughing wryly, on the morning before the publication of her review into 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 a day obsession to try to help improve things” and has placed her at the vortex of a debate she describes as toxic, politicised and ideological.
Cass’s review is written in a calmly clinical tone but there are moments when her anger about how NHS England has cared for a generation of vulnerable children is barely disguised.
Clinicians have become “fearful”. The available evidence is “poor”. Her efforts to conduct a vital and comprehensive study into the outcomes of all 9,000 children and adolescents treated at the Tavistock and Portman gender identity development service (Gids) clinic between 2009 and 2020 were “thwarted”.
Cass knows her recommendations will be hugely controversial and that some children waiting for treatment will be dismayed by her conclusions but she is adamant that she has young people’s best interests at heart.
“We’ve let them down because the research isn’t good enough and we haven’t got good data,” she said.
“The toxicity of the debate is perpetuated by adults, and that itself is unfair to the children who are caught in the middle of it. The children are being used as a football and this is a group that we should be showing more compassion to.”
The scope of her review is huge; she has set out to review all the available evidence on which gender medicine has been based globally, as well as trying to answer the puzzling question of why the numbers of children seeking referrals to gender clinics in the UK and in other developed countries began an exponential rise in around 2014, and why so many more girls began seeking treatment. (In 2011-12 there were just under 250 referrals to the service; in 2021-22 this had risen to more than 5,000 referrals.)
She has also been charged with making clear recommendations about how services can be improved, in the wake of the closure of the Tavistock clinic’s Gids clinic last month, a closure which came about as a result of her interim research. In the future she wants services to offer a broad range of interventions, rather that having “tunnel vision” on gender.
She is not even sure that future clinics should have gender in the name, noting that we should “move away from just calling these gender services because young people are not just defined by their gender”.
Cass says it is not her job to comment on whether some professionals should face disciplinary proceedings for their role in what has gone wrong.
“I don’t think you can point a finger at anyone in particular; it’s been a system failure,” she said.
“The toxicity of the debate has been so great that people have become afraid to work in this area.”
Medical professionals experienced a sense of fear “of being called transphobic if you take a more cautious approach”, she said.
Others were worried that they might be accused of conducting “conversion therapy if, again, they take a cautious or exploratory approach” and some clinicians expressed “fearfulness about what colleagues might say if they speak up and express an opinion that is not consistent with theirs”.
The consequence of this rising nervousness among clinicians over the past 15 years has been that many children exploring their gender (which Cass describes as “a normal process” in adolescence, not necessarily requiring any NHS input) have been prematurely diverted towards chronically oversubscribed specialist clinics, and left sitting on waiting lists for years, without any support.
“There are many more young people now who question their gender; what’s really important is they have a space to be able to talk to somebody about that and to work that through.
“The problem has been that whilst they’ve sat on a waiting list, they just haven’t had that help. They’ve just had the internet to help them and that’s not always helpful.
“Sometimes they’ve come to a premature conclusion and foreclosed options, when there might have been many different ways of resolving their distress. The aspiration – and I’m under no illusions this is going to happen quickly – is that they should have someone to talk to much earlier on before they narrow their options.”
Cass believes that for a minority of young people medical transition will be the right option, but she is clear that there is no solid evidence basis justifying the use of hormones for children and adolescents.
Her earlier research has 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 under-18s.
“We’ve got it locked into this focus on medical interventions. And certainly some of the young adults said to us, they wish they’d known when they were younger, that there were more ways of being trans than just a binary medical transition,” she said.
A long section of her report looks at whether nature, nurture or other factors best help explain the soaring numbers of referrals to gender clinics. Cass’s conclusions are nuanced, but she acknowledges that Generation Z are facing unprecedented exposure to social media and the internet.
“It’s a social experiment – we don’t know what that’s done for the generation that’s coming through – what has been good and what is bad,” she said.
“Biology hasn’t changed in the last few years so it’s not that that’s changed things … we do have to think very seriously about the impact of social media, not just in terms of influencers, but about the effect of long hours on social media.”
She added: “There was some very dangerous influencing going on. Some of them give them very unbalanced information. Some were told parents would not understand so that they had to actively separate from their parents or distance their parents; all the evidence shows that that family support is really key to people’s wellbeing,” she said.
She acknowledged that some children may have been harmed by being misprescribed hormone treatments, but she said it was impossible to say how many. “We really don’t know how many children have benefited versus how many children and young people have been harmed because we haven’t got the adequate follow-through data. We urgently need to get that information.”
It was “unbelievably disappointing” that the research study she had hoped to conduct to look at the outcomes of 9,000 former Tavistock patients had been blocked by the adult gender clinics, who refused to contact former patients for permission on her behalf.
The former health secretary Sajid Javid had changed legislation to allow researchers to link pre- and post-transition NHS numbers, but the research had to be abandoned when all but one of the adult clinics refused to cooperate, Cass said.
“I do think it was coordinated. It seemed to me to be ideologically driven,” she said. “There was no substantive reason for it. So I can only really conclude that it was because they didn’t feel that it was the right thing to do to try and nail down this data.”
Cass said she had a distant relative who had had a trans identity, but that her outlook had not been influenced by this connection.
“They were of a different generation and transitioned very late in life; I don’t think there were any transferrable messages really, to sort of this group of young people,” she said.