Bayswater Support Group
Where do we recommend starting?
Guest post by the Bayswater Support Group
Thank you to Trust the Evidence for inviting Bayswater Support Group to introduce our work to TTE readers. This invitation came about by way of an apology for an uncharacteristic slip in their otherwise rigorous pursuit of the evidence. The error on their part was quickly corrected, and we are grateful for the series on gender medicine, which offers an overview of the key issues in this field and highlights concerns that Bayswater parents have been raising for years.
Bayswater Support Group: who we are and what we do
A small group of parents founded Bayswater in 2019 to provide peer-to-peer support for families of children and young adults who identify as trans or non-binary. Our families have seen that a transgender identity can be a manifestation of many underlying issues, so we believe our children are best supported through holistic exploration of how they have arrived at this understanding of themselves. As a result, we are cautious about presenting transition — whether social or medical — as the solution to a complex problem.
None of our parents set out to become experts in psychiatry, psychology, endocrinology, evidence-based medicine, child development, bioethics, research methods or diagnostic classification systems. Yet many of us have felt obliged to become exactly that in order to advocate for our children’s safety and well-being.
To put it bluntly: if experts had done their jobs, there would be no need for our group. But over the last 15 years, trans-identified children and young people have been subjected to life-changing medical interventions without a supporting evidence base. Although a belated course correction is underway (first on puberty blocking medication, more recently on cross-sex hormones), untold harm has already been caused.
While there are early signs of a safer approach in paediatric services, adult gender clinics continue to put a vulnerable patient demographic at risk through hormonal and surgical interventions that lack a robust evidence base and — perhaps most extraordinarily of all — without systems in place to track outcomes. In this environment, dangerous misinformation about gender medicine has proliferated. Unscrupulous private providers have profited, at times in collaboration with the NHS, and the problem of ‘DIY’ and unregulated hormone use has spiralled.
Sadly, the so-called ‘experts’ have not merely been asleep on the job. Too many have directly undermined child safeguarding through their actions.
Over the last seven years, Bayswater has supported more than 800 families, many of whom have had to battle medical professionals, teachers, CAMHS counsellors, social workers, local council safeguarding officers, and the police to try to protect their children from harm. In some cases, this has led to relationship breakdown within families.
Since two of our core values are optimism and empathy, we are always ready to reach out to those who are now playing catch-up.
So, where do we recommend starting?
For most Bayswater parents, the overriding question is the one raised in Part 6 of the TTE series: “What exactly are we treating?” Only once we have a meaningful answer to this question can we work out how best to support these children and young people.
This brings us to a thorny problem: the diagnostic frameworks. The inadequacies of the ICD-11 codes for ‘gender incongruence’ are extensive. This is a subjective, patient-led diagnosis with an unexplained aetiology and an unpredictable future trajectory. The absence of any requirement for distress (merely ‘dislikes’ and a ‘desire’ to transition) means this is a diagnosis driven by personal identity rather than medical criteria. Yet it is being used to justify highly consequential hormonal and surgical interventions.
Even the more medically inclined diagnosis of gender dysphoria in DSM-V comes with a significant problem: once you diagnose something as ‘gender’-related, there is an assumption about the underlying cause. In our experience, ‘gender issues’ are better conceptualised as symptoms that can arise for many different reasons. Both the ICD-11 and DSM-V diagnostic labels risk foreclosing proper exploration of these symptoms and perpetuating “diagnostic overshadowing”.
For those who might be new to this topic, a final point to understand is the way the public (and patients at gender services) have been led to believe that hormonal and surgical interventions are vital for patient well-being, while gender medicine advocates resort to claims about patient autonomy and choice, even questioning the “prevailing narrative” that assumes “transition should lead to improvement”.
We regard this sleight of hand as fraudulent and as an upending of standard ethical principles. Such dishonesty can only succeed if people are not paying attention, and the biggest change since Bayswater’s foundation is the level of scrutiny in this area. We are not afraid to discuss our perspective or have our views challenged, because we believe transparency and open discussion are essential.
Our ultimate goal is to retire from our unwanted roles as medical advocates, but we can only do so when policymakers and healthcare professionals get back to the job of regulating and upholding patient safety. In the meantime, if you’d like to support a small band of volunteer parents holding institutions and experts to account, visit our donate link.
Read the Series on Equipoise, Uncertainty and the Gender Medicine Dilemma series starting here:
Equipoise, Uncertainty and the Gender Medicine Dilemma - Part 1
By any ordinary standards of medicine, the debate over puberty blockers and hormones for adolescents with gender dysphoria should turn on the central question of whether there was genuine clinical equipoise.Thanks for reading Trust the Evidence! This post is public, so feel free to share it.
Thank you for this article. I applaud your quest for the best outcome for your children and hope for your sakes that the medical profession and politicians go back to ethical and evidence based policies.
Very interesting.
I've skimmed through your reference here:
"gender medicine advocates resort to claims about patient autonomy and choice, even questioning the “prevailing narrative” that assumes “transition should lead to improvement”." (https://link.springer.com/article/10.1186/s12910-024-01143-8)
I find it utterly baffling. The tactic reminds me of that used in Greenhalgh et al.'s work on mask effectiveness: if gold-standard medical evidence doesn't support your conclusion (or, in this case, is absent), then simply question the authority ascribed to this standard, and propose a different standard which produces an answer more to your liking.
In Greenhalgh's case this amounts to simply moving the goalposts on the demarcation problem ("what counts as Science?"). I think this contribution here is more nuanced, more interesting and less obviously self-serving of a particular agenda, but still very flawed.
The authors confront the evidence that, in many cases, GAMT does not result in "progress" or "improvement" in the patient's condition - or even puts them in a _worse_ condition; in doing so they come up with some interesting points - in particular, that prospective patients feel under pressure to intensify and exaggerate their pre-GAMT "distress" in order to attain a presented "distress-level" sufficient to access GAMT. This fascinating point, which must have contributed significantly to the stridency of arguments about the issue, is not followed up further, though.
There's nothing wrong with pointing out that people's life experience during and post-GAMT can be "nuanced" or "complex", as it undoubtedly can be. But sweeping up all the undoubted distress and regret some people feel after GAMT, only to then devalue it as merely the result of applying a faulty, "trans-negative" epistemology which can perceive only "progress from distress to well-being", in favour of an insufficiently-specified respect for "complexity" and "nuance", seems to me to be just as "epistemically oppressive" towards those people as the supposedly "trans-negative" narrative of "distress; GAMT; progress; well-being" the authors wish to displace is cast as being.
The authors don't seem to realise that in decoupling the value of GAMT from a criterion based on outcomes, in explicitly removing it from the ambit of the standard of beneficence and non-maleficence, they take on the onus to assert its value under a different criterion. But they fail to provide this different criterion. Reading between the author's lines, it's not hard to discern an underlying construction, on their part, of gender dysphoria (or whatever you like to call it) as a state of _continual_ difficulty, _continuously_-recurring distress (however "nuanced" and "complex"): a condition which is not actually amenable to "improvement" (or "deterioration" either) by GAMT at all.
In the face of such a phenomenon, evaluating GAMT in terms of "improvement" or "deterioration" would be pointless. But if this is the case, then the article provides no argument whatsoever for or against GAMT. If GAMT is not actually about improving someone's condition and life-experience, then what, actually, is it for? This is the burning question which this article leaves unanswered.
One thing seems certain: that if GAMT is not subject to criteria of beneficence and non-maleficence, if the outcomes resulting from it are not important in evaluating it, then medicine has to simply throw up its hands and say "I can't deal with or even engage with this". If this is the argument, then GAMT (whatever it actually is) is not a medical intervention. What is it supposed to be, then?