Straight to the point

Tomorrow, it will be a year since the closure of the controversial Gender Identity Development Service (Gids) at the Tavistock and Portman NHS Foundation Trust was announced. Rated inadequate by the Care Quality Commission and overwhelmed by an exponential rise in referrals, the NHS’s only clinic for children with gender distress was deemed neither a safe nor viable long-term solution for the young patients who required the expertise of a multidisciplinary team to address their problems. However, the inadequacies at Gids extended well beyond a failure to keep on top of a spiralling demand.

Gids had been established in 1989, to help distressed teenagers navigate their feelings of gender dysphoria, but changes in leadership along the way led to a dramatic shift in its clinical approach. In recent years children routinely found themselves on a medical conveyor belt before the psychological effects of early adverse experiences were fully explored. Much has been written about the blanket application of an “affirmation-only” approach to a complex caseload, which too often put children on a single pathway to life-long medicalisation. 

In most academic discourse, a “no-debate” approach, such as the one described at Gids, will be stifling and unproductive — but in medicine, it will inevitably result in harm. All clinical practice should be centred around the careful consideration of competing possibilities. It is unsurprising that children were harmed at Gids when a single-minded certainty usurped clinical curiosity.

One year on, Gids remains open, although it no longer accepts new referrals. The plan is to replace the moribund service with regional hubs offering the holistic care required by young people struggling with their gender identity. The promised new services are still taking shape, but before they have even opened their doors to the ever-accumulating backlog of referrals — last rumoured to be upwards of 8,000 young people — concerns have been raised about history repeating itself. Some of the senior clinicians from Gids have seamlessly transferred into new leadership positions, despite appearing to have learned little from its terminal failings.

In April 2023, Prof Gary Butler, the lead endocrinologist at Gids and a clinician appointed to a leadership role in its replacement service, questioned any need to rethink the model. He told a conference audience that Gids was already working in “exactly” the way that Dr Hilary Cass had called for in her thorough review of services for children and young people with gender incongruence. It is difficult to see how anyone could reconcile the service described in Time to Think — BBC Newsnight reporter Hannah Barnes’s careful and balanced account of the failings reported by multiple Gids clinicians — with the holistic approach recommended by the Cass Review.

Its recommendations tear down the exceptionalism that allowed things to go so wrong at Gids; evidence-based practice will be the bedrock of the new service, just as it is in every other NHS clinic.  Those working within the new services will be contractually committed to follow Dr Cass’s recommendations, which place a new emphasis on integrated models of care and evidence-based treatments, recommendations that should be as uncontroversial as motherhood and apple pie.

But, then, motherhood and apple pie aren’t quite as uncontroversial as they used to be. And an evidence-based practice may not be quite the unifying foundation if the clinicians involved cannot agree on the evidence base.

Earlier this month, a group of 21 eminent clinicians working across nine countries in the field of gender distress wrote an excoriating open letter in response to a bold claim from Stephen Hammes, president of the Endocrine Society. In a letter to the Wall Street Journal, Hammes had stated that more than 2,000 studies had provided a clear picture that gender-affirming care improved the well-being of gender diverse people and reduced the risk of suicide; if that were true, it would be very reassuring and closer to certainty than we often get in many medical specialities. The authors of the response, who included Dr Anna Hutchinson and Dr Anastassis Spiliadis, two of the original whistleblowers at Gids, noted that this claim had been contradicted by every single systematic review of the evidence, not least one published by the Endocrine Society itself. They noted that recommendations for clinical practice should be aligned with the best available evidence, rather than a position that exaggerated the benefits and minimised the risks.

Not all evidence is equal. There are hierarchies of evidence in science, often represented as a pyramid. The lowest level is “expert consensus”, which is barely evidence at all. Who decides who is an expert? The process of reaching a consensus can result in a compromise where lots of people agree collectively what nobody actually believes individually. Consensus may have nothing to do with empirical truth. Expert medical consensus can be very wide of the mark, sometimes disastrously so: in the early 1900s, it was expert medical consensus that smoking cured asthma and other lung diseases. It is well within living memory that the expert consensus for treating back pain was bed rest and plenty of it. We now know this is likely to increase pain and prolong recovery.

The history of medicine is littered with these examples, and there are treatments we are recommending now with the full blessing of expert consensus that will eventually prove to be ineffectual at best, fatal at worst. But perhaps the biggest problem with consensus, particularly in the area of gender medicine is the chilling effect it has on debate. As Michael Crichton, the physician and author of Jurassic Park, said: “The claim of consensus has been the first refuge of scoundrels; it is a way to avoid debate by claiming that the matter is already settled.”

Fortunately, most branches of medicine now rely on more rigorous forms of evidence to inform their practice. Further up the “evidence pyramid” are case reports and studies that compare the outcomes in patient groups before and after treatment, with and without control groups. Close to the top of the evidence pyramid are the results from randomised controlled trials. All of these kinds of research can provide valuable information (some more than others) but no study is perfect and no study design can control for all of the biases that might have influenced the results. So sitting right at the top of the evidence pyramid are the meta-analyses and systematic reviews. These studies systematically evaluate the quality and quantity of all of the relevant evidence that has been published in peer-reviewed journals. These independent reviews summarise what we really know and how confident we can be in that knowledge. Bodies such as the National Institute for Health & Care Excellence (Nice) produce the gold standard in clinical practice guidelines based on these kinds of independent meta-analyses.

In 2020, Nice examined the evidence for puberty blockers. They concluded that “the results of the studies that reported impact on […] outcomes of gender dysphoria and mental health (depression, anger and anxiety), and […] body image and psychosocial impact (global and psychosocial functioning), in children and adolescents with gender dysphoria were of very low certainty”. In other words, there is no good quality evidence supporting the use of these drugs on these outcomes.

It seems likely in the heated debates that surround gender medicine that many people are confusing “expert consensus” — the evidence right at the bottom of the pyramid — for the gold standard in clinical practice guidelines, which are based on evidence and right at the top.

This conflation appears to have been responsible for the mutual bafflement in the heated exchange between Republican Dan Crenshaw and Dr Meredithe McNamara earlier this month, in a debate in the US House Committee on Energy and Commerce on gender-affirming care. While Dr McNamara insisted trans healthcare was based on “standards of care”, the senator countered with the stark lack of evidence from any systematic reviews. Both appeared exasperated with the failure of the other to grasp the importance of their incontrovertible evidence. Just as not all evidence is equal, neither are all clinical guidelines or standards of care. They can be developed from evidence at the top of the pyramid (as in Nice guidelines), but more often come from the bottom and simply represent expert consensus with all its inherent flaws and biases. The stamp of approval from a learned society does not trump the rigours of a Nice review.

The Gids clinicians themselves acknowledge that few high-quality studies have examined the effects of puberty blockers and cross sex hormones on mental health outcomes and that it is difficult to apportion positive effects to endocrine treatments alone. Their latest contribution to the scientific literature does nothing to change that.

Although purporting to present the data of 38 children on five questionnaire measures assessed at three time points (before treatment, one year after puberty blockers and one year after cross sex hormones), not one of the patients in their study actually completed all measures at all time points. The maximum number of patients who had data at all time points on any of the questionnaires was 21, representing fewer than 20% of the children who had taken this pathway. This paper is useful in confirming the very poor monitoring at Gids and could be exemplary as a “how not to do it” in an introduction to research methods course, but the results contribute nothing of clinical value. If an enquiry is ever launched into the Gids service, one of the key questions will be how a centralised NHS service, led by clinicians trained in research methods, failed so spectacularly to establish an evidence base for their practice.

Since no high-quality evidence for the benefits of puberty blockers has been found in systematic reviews, it is unsurprising that even the doctors who work in this field have described themselves as building the plane while flying it. With mounting concerns for the possible harms associated with medical pathway of puberty blockers and cross-sex hormones (including reduced bone density, disruptions to neurodevelopment, impaired sexual function and infertility) — not to mention the growing numbers of detransitioners for whom this was never an appropriate treatment pathway, one might extend their aviation metaphor as an attempt to build a plane while flying it while someone else throws out all the parachutes and sets an engine on fire.

Who would put any children on that plane? Or volunteer to pilot it?

The only rational response in such a situation would be to ground the plane immediately. The interim recommendations of the Cass Review combined with the upcoming closure of Gids effectively do this, but the pressures on a new service to immediately take to the metaphorical skies again will be significant.

However, there is another way. Practice guidelines based on expert consensus cannot be mistaken for those based on systematic reviews. Where the systematic reviews indicate little evidence for benefit and potential for significant harm, the service should proceed with the caution that would be applied in any other branch of medicine.

Cass has emphasised that just as there are many pathways into gender dysphoria for young people, so there could be many ways out. For some, that may still be a medical pathway, with its unevidenced outcomes and multiple inherent risks. The new teams will be tasked with explaining these uncertainties in uncompromising detail to ensure the truly informed consent of those who wish to embark on this experimental approach. Fortunately, the new service model means that other treatment pathways will now also be available.

Bringing gender distress firmly back into the fold of mainstream mental health services for children and adolescents means that these vulnerable children can finally begin to benefit from the therapeutic input and safeguards they have been denied for far too long. It can’t begin soon enough.

view 9 comments

Source: UnHerd Read the original article here: https://unherd.com/