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10 April 2024

The Cass Review into children’s gender care should shame us all

Why was the prescription of puberty blockers to distressed children allowed to continue for so long?

By Hannah Barnes

Three and a half years after it began, we finally have the findings of Dr Hilary Cass’s review into NHS youth gender identity services. It is a damning indictment of how badly we, as a society, have let down a group of vulnerable and highly distressed children.

“Some practitioners abandoned normal clinical approaches” to the assessment of young people with complex lives, Cass concludes. “They deserve very much better.”

Commissioned by NHS England in 2020, the review’s interim findings led to the closure of the Tavistock Gender Identity Development Service (Gids) last month, and the ending of the routine prescribing of puberty blockers to children with gender-related distress. For those who have closely observed the care provided to this group of youngsters, there are few surprises in the report. But it is devastating to see it all laid out in one place.

“This is an area of remarkably weak evidence,” Cass writes, “and yet results of studies are exaggerated or misrepresented by people on all sides of the debate to support their viewpoint.” The reality, she says, is that there is “no good evidence on the long-term outcomes of interventions to manage gender-related distress.”

And yet the NHS has allowed the routine prescribing of puberty blocking drugs to children with gender dysphoria – a purpose for which they are not licensed – for a decade, without any robust data to support that decision. Many children’s medications are off-label; they’re not specifically licensed for use in children. We often don’t test drugs on children for safety reasons. But it’s usually a question of using a drug licensed for use in adults at smaller doses; not for use in a completely different way. 

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In this case, Cass told me, it went “beyond the usual level of permissiveness”. It reflects a “weakness in the system”, and she suggests the need for new guidance on how to prevent this kind of “practice creep”, in which drugs come to be used for an entirely different purpose to the one they’re approved for.

Gids also did not wait for any data to emerge from a trial it had conducted on 44 children between 2011 and 2014 into the use of puberty-blocking drugs in younger children before rolling the treatment out. When the results did come back in 2016, it didn’t show children benefiting. “It is unusual to have actually done the trial, and then not publish the results, and proceed in a way that the evidence that they had didn’t dictate,” Cass told the New Statesman.

Why did this happen? “The UK wasn’t alone,” Cass explained. “There was a patient group who were very keen for this treatment to be available. And it is usual in the NHS to listen to the voice of service users, but obviously not to the point where you’re not following the evidence. All the people I’ve spoken to felt that they were doing the best thing for the patients in front of them. But I think there’s a particular problem when you’re the only organisation in the country that is doing something, there’s no peer review. And so, you can carry on a track that you gradually believe to be the right one.”

This hasn’t just led to around 2,000 children receiving a drug for which there is little evidence it is safe or clinically effective; the focus on medical transition at the expense of anything else has also “arguably meant that other treatments (and medications) have not been studied/developed to support this group, doing the children and young people a further disservice”, Cass writes. Studies should now look at whether simpler measures such as “stopping periods with the contraceptive pill have the potential to manage immediate distress” along with “other more conventional evidence-based techniques for managing depression, anxiety and dysphoria”.

Data collection at Gids has been woefully inadequate. “It has been evident that there has been a failure to reliably collect even the most basic data and information in a consistent and comprehensive manner,” Cass writes. “Data have often not been shared or have been unavailable.” This means it’s difficult to fully understand this patient cohort, she explains. But more importantly, “This has been to the detriment of young people and their families being able to make informed decisions.” In short, these children have been failed.

Gids was open for 35 years. That it did not collect decent data during that period is extraordinary. As is the fact that NHS England seemingly did not demand 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. “Gids reports that only a minority of children and young people go on to an endocrine pathway,” the final report says. “However, despite a number of discussions and a focus group with Gids staff on this topic, it has not been possible to obtain any clear information about the range of options offered.”

When it comes to the actual number of young people who have been prescribed puberty blockers or hormones, there is still no official confirmation. Based on all the information available in the public domain and several freedom of information requests, my own estimate is that around 2,000 children under 18 have been referred to endocrinologists. Most would have started treatment. The review team looked through the records of those discharged from Gids between 1 April 2018 and 31 December 2022, which showed 27 per cent of patients were referred to endocrinology – a total of 892 children. This will obviously exclude those who were discharged before 2018 and those who remain under the care of the service. Gids itself has said it referred 1,261 young people to endocrinology between 2009 and autumn 2017 alone.

The report confirms that the majority of children referred to Gids had complex needs, and alongside their gender-related distress were often contending with other difficulties: anxiety, depression, eating disorder and autism were all over-represented when compared with what you would see in the general children’s population.

It also vindicates what so many former Gids staff have been saying for years: that there was no consistency in its clinical approach; that some assessments – prior to referral for puberty blockers – could be just one or two sessions long; that there was wide variation between clinicians; that “sexuality was not consistently discussed”; that assessments lacked structure; and that “there was a lack of evidence of professional curiosity” as to how a child’s specific circumstances may impact on their gender identity and decisions.

This final report is far more comprehensive than Cass Review’s interim findings published more than two years ago. It incorporates several new systematic evidence reviews, and Cass has called on the NHS to “ensure there is provision for people considering detransition, recognising that they may not wish to re-engage with the services they were previously under”. These people need to be “carefully monitored in a supportive setting, particularly when coming off hormone treatments”.

Cass describes how several staff in adult gender clinics have “contacted the Review in confidence with concerns about their experiences working in adult gender services”. These clinicians, from NHS gender clinics across the country, describe how a large proportion of patients have “various combinations of confusion about sexuality, psychosis, neurodevelopmental disorders, trauma and deprivation… and a range of other undiagnosed conditions”, yet there was an expectation that they would be started on hormones by their second appointment.

This might be why the review calls for new follow-through services to be established for those aged between 17 and 25, “to ensure continuity of care and support at a potentially vulnerable stage in their journey”. At the moment, young people can move to adult services at 17, but these offer little or no mental health support, and are largely geared towards the prescribing of hormones. “Young people presenting later may therefore not have access to the same holistic care as described in this report.”

Perhaps the most shameful thing detailed in the final Cass Review is the revelation that NHS adult gender services – paid for by the tax-payer – have refused to cooperate in sharing data that would improve the evidence base for this group of people. The review had aimed to track what happened to the 9,000 young people who had gone through Gids, with the government even changing the law to help researchers do this. But the gender clinics refused to help. Follow-up is standard practice in the NHS, Cass explains, but “has not been the case for gender-questioning children and young people”. Finding out how thousands of young people had fared after receiving different help represented “a unique opportunity” to provide more evidence to help gender-questioning young people and their families make informed decisions about what might be the right treatment pathway for them.

It is baffling that those working in services purportedly aiming to help these same people have refused to help make their care better, safer and more evidence-based. “I don’t understand the reasons why they wouldn’t cooperate,” Cass told me. Some of the clinics raised issues about ethics – yet the research design had been granted official ethical approval; others raised issues about it requiring extra resources, but NHS England said it would pay for it. “So, it is mystifying to me,” Cass said. “Particularly when you would expect that they would be curious about outcomes for the patient cohort going through, and if they are confident in the management approach, they would want to be able to demonstrate that.”

Cass has done an incredible, and important, job. The report is clear, compassionate, and decisive. But why has recognition of how bad things have got with respect to gender identity healthcare taken so long?

Staff from Gids have been making these points for almost a decade. Two decades if you go back to the very first whistle-blower who raised concerns before puberty blockers were given to under 16s. Some in the media have amplified those concerns, too, as have women’s rights activists, former Gids service users, and parents. Those who have spoken out should be applauded. But, we should be asking the question: where has everyone else been?

What about all the others who have not spoken out? Those who were told what was going on, who saw what was going on, and did nothing. The NHS, the government and political classes, the media.

Take the Guardian, which received a letter from two worried clinicians in the summer of 2017, setting out their concerns. “Everyone I see is in pain and in distress,” they wrote. “Gender dysphoria is real and painful and sometimes hellish. There are multiple reasons for it, and there will be different ways of managing it. One such meaning and ‘solution’ might be to transition, but these are children not adults. These are young people for whom complex and profound confusion and turmoil is being collapsed into a one size fits all concrete explanation.” The clinicians voiced their fear that these children were “too young” to be making decisions that would affect them for the rest of their lives. “You should know that there is no unequivocally shared consensus on what you are undertaking; and the evidence, such as it is, suggests no greater health or happiness.”

No one from the newspaper responded.

Take the politicians who sat on the Women and Equalities Committee in 2015, listening to the Gids executive member Bernadette Wren explain how she worked in a service where “a lot of the young people – and anybody who wants it – have physical intervention” and which had “no record of turning people down for physical intervention”. The committee read the evidence of the Gids director Polly Carmichael, who described how Gids offered puberty blockers “to those who have a range of psychosocial and psychiatric difficulties, including young people with autism and learning disabilities, and young people who are looked after”. These were never the young people for whom puberty blockers were designed for; indeed, they were ruled out of the treatment according to the conditions of a team in the Netherlands that pioneered this approach.

The MPs’ response? Not to question whether this was sensible or to ask what safeguards were put in place, what research was being undertaken to monitor the outcomes, but to question why Gids was so cautious. Weren’t they “looking at and considering” making cross-sex hormones available to children at young ages, the committee chair Maria Miller asked.

And what about the Care Quality Commission (CQC), the healthcare regulator. It rated Gids “good” in 2016, judging there to be a “very strong focus on research and using evidence based practice”? Despite personal caseloads in excess of 100 for individual clinicians and the service buckling under the weight of referrals, the healthcare watchdog judged the service to be safe. And at a time when, in a small number of cases, clinicians were making decisions to refer children to endocrinology after just one or two hours, the CQC said that Gids “carried out comprehensive assessments of young people including families”.

The mistakes of the past cannot be undone. But Hilary Cass’s vision for new services offer the chance to improve the future of care for gender-questioning young people; to finally provide them with a standard of care that they deserve, and which is comparable to that received by those who do not have gender identity difficulties. But Cass is well aware that there will be “no overnight fixes”. It will take several years for services to be fully rolled out across the country. Recruitment to the first of two new regional gender identity hubs has so far proved challenging. Some of the toxicity must be taken out of this discussion if staff with the right skills and attitude are to be tempted to work in the field. Currently, they are “fearful” of doing so, Cass says.

There will need to be far better oversight of services, and Cass told me that she has relayed to NHS England that the services must have board-level scrutiny. She believes that they will respond positively to that and there will be “very intense scrutiny” from now on. Cass is optimistic about the leadership in place at both new services, too. However, as she writes in her final report: “There are clearly lessons to be learned by everyone in relation to how and why the care of these children and young people came to deviate from usual NHS practice, how clinical practice became disconnected from the clinical evidence base, and why warning signs that the service delivery model was struggling to meet demand were not acted on sooner.”

Lessons must be learned. Because this story teaches us that bad things can happen when good people do, and say, nothing.

[See also: Universities are in crisis]

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This article appears in the 17 Apr 2024 issue of the New Statesman, Israel vs Iran