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Hilary Cass: “Do I regret doing it? Absolutely not”

The Cass Review author on facing her critics, and how children’s gender identity services failed to “pause for thought”.

By Hannah Barnes

Dr Hilary Cass has achieved what many thought was impossible. She has brought about something close to consensus on one of the most toxic and divided issues of our time: how best to care for children who are questioning or distressed about their gender identity. She has done so with calm, compassionate and evidence-based writing and reasoning in the publication of the most comprehensive review ever undertaken into youth gender care.

Taking nearly four years to complete, the Cass Review was informed by meetings with more than 1,000 people, seven new evidence reviews, and a survey of 15 gender clinics across Europe. Her team says the final report has been downloaded more than 125,000 times, in 176 countries across all continents.

The mood in the country over transgender issues, Cass told me when we met recently at the New Statesman offices, became “more toxic and polarised” as the review went on. “But if people asked me, ‘Do I regret doing it?’ the answer is: absolutely not.” For someone who has been long immersed in such a hostile environment, Cass is upbeat, and proud of what she and her team have achieved.

When she was handed this unenviable task, Cass had no pre-conceived ideas. One of her friends was trans, but otherwise she was coming at it “pretty cold”. That was precisely what NHS England (NHSE) wanted. What she did understand, however, was children. Cass is one of the country’s most respected paediatricians, having served as president of the Royal College of Paediatrics and Child Health between 2012 and 2015. In a career spanning three decades, she worked at some of the country’s leading children’s hospitals, including Great Ormond Street Hospital (Gosh), where she was a consultant for 15 years. As well as establishing the UK’s first clinic for children with the neurodevelopmental disorder Rett syndrome, Cass specialised in autism (a group that is over-represented in referrals to NHS gender services), youth palliative care and treating children with multiple disabilities.

[See also: The Cass Review into children’s gender care should shame us all]

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Cass was initially asked by NHSE to form a policy group and to commission the National Institute for Health and Care Excellence to review the evidence surrounding puberty blockers and hormone treatments. But when they found there was “not enough evidence to support a policy position”, Cass agreed with NHSE that “a much broader review was needed, that would look at the very complex issues we were facing”. These included the increase in the number of young people seeking help, along with a shift in the demographics of referrals: from largely pre-pubescent boys with a lifelong sense of gender incongruence, to largely adolescent girls whose gender distress had arisen after the onset of puberty, and who were often contending with other difficulties too. “I was already hearing fairly broad-base concerns. And I was absolutely committed to wanting to do it,” Cass said.

Knowing how difficult the review would likely be, and faced with the alternative of retirement, with the opportunity finally to learn the saxophone, why did Cass take it on? “Because there was a whole group of young people who were just not being served well by the NHS. Even before we looked at the evidence, I knew that there was this large group of young people sitting on a very long waiting list, and that the polarisation was having a negative impact on them. And it felt like an injustice.”

Hilary Cass is no stranger to conflict within the medical profession. She raised patient safety concerns during her time at Gosh, and was demoted and received a gagging order as a result. I wondered if this made her more sympathetic to those who had blown the whistle about poor care at the now-closed Gender Identity Development Service (Gids), based at London’s Tavistock and Portman NHS Foundation Trust? No, Cass said: “I don’t think I did personalise it.” She recognises that for some, their negative experience at Gids had become all-consuming, and hopes the review now means they can move on. “But in terms of the content, no, I just focused on what they had to say, as much as I focused on what people who had a more positive perspective had to say, and tried to make sense of why there were these two very different views.”

It was the stories of the young people she met that made the most impact. One, who started on hormones at the age of 15 through a private provider, had suffered a series of traumatising events: their father had died, they had an eating disorder, an autism diagnosis and were self-harming. “I felt that so much wasn’t taken account of in that situation,” Cass said. Another was treated without their parents’ approval when social services became involved. Cass was troubled by several conversations with one person now in their early twenties. Initially, they were “very determined that they wanted to get on to testosterone as quickly as possible. And a year later, absolutely didn’t want to.” At first, they hadn’t been interested in having children; 12 months later, they wanted a family.

“Conversely, I have been really impressed seeing some young people thriving on the hormone pathway – very settled, really happy with the service that they received from Gids and [who] felt it had been life-saving and life-changing for them.”

Cass understood that there wouldn’t be one solution to gender-related distress that suited all. If there is one message underpinning her review, it is that young people seeking out gender identity services are a heterogeneous group, and each needs an individualised approach. “Within that group are going to be some for whom a medical pathway proves to be the right pathway, and some who need some other support to resolve their problems. I think the difficulty is that once a young person has committed to a medical pathway, it’s very difficult for them to change their mind, even if it was perhaps not the best decision.”

[See also: Inside the collapse of the Tavistock Centre]

For Cass, it was “fairly clear from the word go” that the evidence underpinning treatments was poor, as was the standard of research. But it was more than that: “I have still been surprised at the lack of curiosity among some professionals in this area to understand the change in the population, and the lack of adherence to normal clinical practice. I wasn’t expecting that.”

While the Cass Review was about looking forward, not going back over what had happened at Gids (until its closure in March, England’s only NHS children’s gender clinic), it was impossible to ignore the past. The review had to be “clear about where there was a departure from the evidence and how we remedy that”. Gids clinicians were practising in “very different ways”, Cass said; some in “ways that one would recognise as typical practice”, others not. Gaining access even to “basic information” from Gids was difficult. In some instances, that was because the service doesn’t appear to have even collected it. The Cass Review team struggled to obtain “robust data” on the number of children who went on to have medical interventions, or what other help was available to those who did not.

Cass did not criticise individual Gids staff, but there is one thing she will be drawn on: the 2011-14 Gids and University College London Hospitals (UCLH) study on the blocking of puberty in children with gender-related distress, and the decision to prescribe puberty blockers to children as young as nine as routine clinical practice. As Cass’s review acknowledged: “Preliminary results from the early intervention study in 2015-2016 did not demonstrate benefit… Despite this, from 2014 puberty blockers moved from a research-only protocol to being available in routine clinical practice and were given to a broader group of patients who would not have met the inclusion criteria of the original protocol.”

Had Cass ever seen anything like it in her career in medicine? “I can’t think of an example… And that’s why I think the single most generalisable message from the report is recommendation 32”, which stresses the importance of rules to prevent the creep into clinical practice of treatments that have no proven benefit, while also not stifling medical innovation. “If puberty blockers had been a new drug, they’d have gone through very strict controls before being prescribed. The weakness in this instance was that they were already licensed in children but for completely different use [the treatment of precocious or early puberty], for which they are totally safe… It should have been subject to greater scrutiny.”

Gids clinicians, the majority of whom were psychologists, did not have the authority to prescribe puberty blockers or hormones. Prescriptions were written by endocrinologists at either UCLH or Leeds General Infirmary (LGI). Cass is in no doubt about how endocrinologists, led by Professor Gary Butler, should have acted when data suggested the majority of children were not benefiting from blockers: “I would have expected them to pause for thought at that point and consider whether this was the best course of action.”

It is hard to explain why there wasn’t a change in direction. “[Clinicians] see some young people who seem to improve, and that encourages them to go on,” Cass said. “But they were also aware that some young people were actually getting worse. And so yes, I would have expected at that point that the team might have questioned whether this was the right treatment for that wider group.”

Cass told me the review also found that a small number of teenagers were prescribed hormones without having been on puberty blockers beforehand – a condition stipulated in the Gids service specification, agreed with NHSE. It’s not so much that this was an “unreasonable” treatment path to try, Cass said, “but again, you would expect that to be done in a formal audit or research”. Gids, UCLH or LGI have never made this public. “They were off spec in a number of respects.” A spokesperson for both UCLH and LGI said they fully supported Dr Cass’s recommendations and they are working with new services “to ensure patients receive the care they need”.

Since its publication on 10 April, some have attempted to discredit the Cass Review. The review team has published an official response to the most egregious claims, including the false assertion that the new systematic evidence reviews threw out all but two studies on the effects of puberty blockers and hormones on young people. Stonewall has since apologised for briefing politicians and other public figures that this was the case. The Labour MP Dawn Butler corrected the parliamentary record having parroted the initial Stonewall line.

During our conversation, Cass took the opportunity to dispel some other myths that have emerged. “We were absolutely clear from the opening sentence of the review that it was not for us to define what a trans identity is, to question anyone’s identity, or roll back in any way on healthcare for people who have a clear trans identity,” she said. Nor does the review imply that a non-trans outcome is “preferable” to a trans one. “For those young people who are thriving having gone through a medical transition, in some ways the medical costs are trivial compared to the ability to live their lives in the only way that is going to make them feel comfortable and fulfilled,” Cass said. She does worry about “young people commit[ting] to a medical pathway that does have potential costs: in terms of ability to have children, in terms of sexual function, in terms of osteoporosis, in terms of lifelong medication… when it ends up being the wrong thing, because then the cost-benefit ratio is the wrong way around. So, it’s not about being trans, it’s about the costs of medical intervention, and whether that’s the right thing for that individual.”

The review does not discriminate against people with autism, Cass said. No one questions that a child with autism can also be trans. Rather, it’s important to recognise “the experiences that that young person is having of their gender may be influenced by their autism spectrum disorder”. Nor is the review focused on preventing detransition, Cass told me. “It’s predicated on trying to look holistically at a young person and make sense of where their gender identity fits with their broader needs. It’s very easy to give people drugs and send them away and find that they’re still not able to get out of their bedroom… because you’ve not looked at the big picture.” While some argue that the number who detransition or regret their treatment is tiny, Cass replies that we simply “have no idea”. It’s also very hard to measure. “I spoke to a young adult who’s living a very successful life as a trans woman, but with hindsight feels that she was a gay boy with internalised homophobia and, given time again, she might have made a different decision. She won’t appear in stats on detransition.”

The review’s loudest critics are concerned by its views on medical intervention. In March NHSE ended the routine prescription of puberty blockers to treat gender-related distress, largely based on Cass’s interim findings. Going forward, children will have to partake in research to access them. The final review recommends “extreme caution” when considering prescribing hormones to under-18s. Scotland has suspended new prescriptions of both blockers and hormones to under-18s following the review’s publication.

Cass said the review does not question young people’s capacity to consent to medical treatment. Rather, it explains that “consent is more than just capacity and competence”: the ability to make an informed judgement is “constrained by the available evidence”, Cass said.

Another allegation is that because children who are not trans can still access these drugs to treat early-onset puberty, trans children are being discriminated against. But you can’t extrapolate from one treatment to the other, Cass explained. “In precocious puberty… what the puberty blockers are doing is returning [abnormally high hormone levels] to normal.” But when puberty blockers are used to treat gender-related distress, doctors suppress the normal rise in sex hormones that takes place in adolescence. “It’s completely opposite.” What’s more, when used to treat gender-related distress, blockers are primarily given at a time when the brain is “developing quite complex decision-making abilities and your bones are also growing at pace. So, suppressing at that time is completely different from suppressing in younger children.”

The most virulent criticism of Cass and her review has come from those who claim to be gender experts working both in the NHS and the private sector. Perhaps that is not surprising considering their field has been roundly undermined by the report. The leadership of the British Association of Gender Identity Specialists said it was “deeply troubled by some of the content of the Cass Review”; the chair of the British Psychological Society’s Sexualities Section, Rob Agnew, has made several criticisms of Cass’s work, branding it “bad news for our trans youth” and “out of step with better quality, more comprehensive reviews”. Walter Bouman, a consultant psychiatrist at the NHS’s Nottingham Centre for Transgender Health and former president of the World Professional Association for Transgender Health, was more personal in his criticism: “Hillary [sic] has never treated trans youth, nor is she a researcher of any significance, yet her ‘expert’ review provides supposedly ‘evidence based’ recommendations… There is a fine line between naivety, narcissism, and psychopathy,” he wrote on social media.

“Clearly, what he says is unprofessional,” Cass responded. “The thing I would pick up is his suggestion that I haven’t treated trans youth. This review is not about trans youth. This is about children with a complex range of conditions, of which gender questioning is one part, and how we provide a holistic service to support their well-being.”

The former Gids senior clinician Lorna Hobbs has written a four-page critique of the Cass Review, calling it “anti-trans”. Hobbs alleges that “known gender-critical clinicians and researchers, some with links to anti-trans organisations and proponents of conversion therapy, were working across the different areas of the review”. Again, Cass is measured in her response. “[The critique] is full of inaccuracies,” she said, stressing that no one the review engaged with supports conversion therapy. “Although I’ve received aggressive and vitriolic emails and online abuse, that doesn’t particularly concern me. What concerns me is professionals spreading misinformation about this review, because that’s failing the interests of children and young people.”

If we know what poor-quality care and studies look like, what could be done better? Strong arguments are made from opposite ends of the spectrum that further research into the impact of puberty blockers on gender-distressed children is unethical. Some insist no more children should be put at risk of harm; others stress that children should not be “coerced” into participating in research in order to access medical treatment. But the latter criticism is misplaced, Cass said. It is not what is being proposed now that is exceptional, but rather what has taken place in the past. It is “very common” for people to only have access to a drug if they participate in research, Cass stressed. “Cancer drugs, for example – there are some cancer drugs that you won’t be able to have unless it’s in a trial.”

The immediate future will be difficult. There are thousands of gender-questioning children waiting for help from the NHS, and recruitment to the services that replaced Gids is proving tricky. But Cass remains optimistic: “I’m really happy with the model of care and the leadership in the new centres. There are some excellent people working in them.”

But Cass is a realist, too. There will be no “overnight fix”. “Telling young people there’s a magic wand to fix things is disrespecting them.” But she wants to say to children and young people struggling that things will get better, and that it is not as urgent to transition now as it may feel. “Although the young adults [I spoke to] say they wouldn’t have listened to that when they were younger, some of them are really pleased that they did take time; that there are more ways to be trans than whether you are on a medical pathway or not; that you can express your gender identity in many different ways.” And medical interventions will still be an option in the future.

Hilary Cass refused to be drawn on whether there should be a public inquiry into what took place at Gids. But surely, given what the review concluded about the mistakes of rolling out puberty blockers without evidence of their widespread benefit, someone should take responsibility for that failure? “I think it’s a shared responsibility,” Cass said. “It partly sits with the Trusts [the Tavistock and Portman, UCLH, Leeds Teaching Hospitals] that were seeing the young people, [and] to some degree with NHS England, but also professional leadership. I think that some professional organisations have ducked their responsibility in ensuring that everyone working in this field… including in secondary care, treated these young people as they would any other.”

What do we do now to ensure we take a better path? “I think it is about having informed conversations,” Cass reflected. “There are some young people who are going to go on and have an enduring trans identity and will ultimately benefit from medical transition, and there are some people whose distress will be resolved in other ways. And these are not black and white answers. The situation’s grey and people have to come together in the middle and talk about this openly, without name calling.”

Hear the full interview with Hilary Cass on the New Statesman Podcast from 13 May.

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This article appears in the 08 May 2024 issue of the New Statesman, Doom Scroll