HRT

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Open letter to NHS Director for Specialised Services on trans youth hormone ban

I am one of the 85 signatories to an open letter to James Palmer, NHS England’s National Medical Director for Specialised Services. We are raising serious concerns about the recent NHS evidence reviews of hormone therapy for trans youth, and subsequent prescribing policy and public consultation.

The letter has been published and sent to Palmer by Trans Actual – you can read more about it on their site here. In my signature, I note that I was a 2023 recipient of the NHS England LGBT+ Advisor Award. Unfortunately, in subsequent years, NHS policy on LGBT+ healthcare seems increasingly shaped by ideology and political pressure, rather than patient experience, expert advice, and evidence. In meetings I attended with Palmer in the early 2020s, I personally heard him share various forms of disinformation about young trans people, such as the factually inaccurate claim that recent cohorts of adolescents presenting with gender dysphoria represent a distinct population from young people referred to the same clinics in earlier years.

For a longer and more detailed critique of the NHS evidence reviews, see this excellent analysis by Kim Hipwell: A Medical Mess: An Analysis Of The NHS’s Proposal To Ban Hormone Therapy For Trans Youth.

The public consultation is open until 7 June, and you can submit a response here.

Dear James Palmer,

We are a group of clinicians, researchers, and academics working in gender care, paediatrics, and related fields of healthcare, medicine, and science.

We are writing to lay out our serious concerns with NHS England’s recently-published evidence reviews into the use of gender-affirming hormone therapy (GAHT) by children and adolescents.


1. Lack of Clear Rationale

The Cass Independent Review previously commissioned a systematic evidence review into GAHT for under-18s.

Based on this peer-reviewed and published analysis, Dr. Cass recommended that “NHS England should review the policy on masculinising/feminising hormones. The option to provide masculinising/feminising hormones from age 16 is available, but the Review would recommend extreme caution.”

In 2024, NHS England reviewed and updated their GAHT policy accordingly.

A “living systematic review” – also recommended by Dr. Cass – is now underway, to consolidate the evidence base and keep it up-to-date. This work is being conducted by EPPI-Centre and others, funded by the National Health and Care Research Institute (NIHR), and includes an ongoing review of evidence for GAHT for under-18s.

Therefore, it remains entirely unclear why – having previously wholeheartedly accepted the Cass Report – NHS England has now launched a separate evidence review that was never recommended by Dr. Cass and which duplicates other research already commissioned and underway.


2. Lack of Peer Review

None of the NHS England evidence reviews have been peer reviewed or written to meet publication standards. Instead, NHS England released the reviews only as part of a public consultation process and has asked the general public to “check that draft policies are well evidenced” and to determine whether “all of the relevant evidence [has] been taken into account”.

Consultation is not a substitute for formal academic review, and risks conflating technical evaluation with public opinion.


3. Methodological Limitations and Risk of Bias

Rather than address a single, clinically meaningful research question, NHS England subdivided the GAHT for under-18s evidence review into 10 separate and extremely narrow PICOs (population, intervention, comparison and outcome search parameters).

We have confirmed that this methodological decision was made by NHS England’s “Policy Working Group”, prior to instructing the “independent” researchers, Solutions for Public Health (SPH).

This methodological approach explicitly goes against the gold-standard guidance outlined in the Cochrane Handbook, which cautions that fragmentation of PICOs is likely to result in “sparse” evidence and “could be chosen by review authors to produce a desired result.”

As a result of these overly-narrow search parameters, the researchers had to exclude some of the most significant studies on gender-affirming care for young people, such as Chen et al., 2023, the largest NIH-funded prospective study of trans youth ever conducted.

Ultimately, the researchers could find only 11 eligible studies across all 10 PICOs, with 0 (zero) studies found for 6 of the 10 reviews. In contrast, the University of York evidence review commissioned by Dr Cass found 53 studies, 34 of which were assessed as moderate- or high-quality.

As an example, studies were deemed “out of scope” if participants had received GnRH analogues in the context of puberty suppression prior to receiving gender-affirming hormones (despite the fact that this was the standard treatment protocol internationally for many years, including in the UK).

According to the published reviews, as a result of this methodological decision alone at least 38 studies were excluded that would otherwise have been eligible (and potentially many more at title/abstract stage). These studies could, at the very least, have provided information on the risk profile of GAHT, a factor which NHS England claims to be central to their policy decision making.

NHS England has published no rationale at all for this – and other– methodological decisions. In response to an FOI request, NHS England indicated that studies involving GnRHa puberty suppression “cannot be included” in the PICOs because of “legal issues”, an “ongoing research trial in this area” and “lack of new evidence” – reasons that we find scientifically unsound.

Additionally, in contexts where limited evidence is available for a paediatric intervention, it would be typical for researchers to consider extrapolating data from research into adults, something that NHS England again chose not to do.

In effect, NHS England has adopted a methodological approach that predictably minimises the available evidence base, then cites this manufactured scarcity as a justification for restrictive policy conclusions.


4. Misreporting and Misapplication of Findings

Especially in paediatrics, clinical policy and decision-making is commonly based on evidence considered limited and/or “low-quality” as recognised under the GRADE system. There is therefore no reason why the purported lack of evidence reported in these reviews should automatically lead to the policy position that gender-affirming hormones are so unsafe and/or ineffective for 16- and 17 year olds that they must be immediately withdrawn.

Even when looking only at the 11 studies included in this NHS England evidence review, we believe the overall pattern of evidence suggests that the benefits of GAHT for under-18s outweigh any harms. We believe this is also the case in the University of York review.

We have also found that at least one of the studies included in the SPH reviews that apparently found evidence of “harm” (Grannis et al., 2003) was entirely misreported. The evidence review states that those taking oestrogen had significantly higher depression, suicidality and social anxiety scores than those not on hormones. In fact, Grannis et al. found no statistically-significant differences on these measures.


5. Impacts of Treatment Withdrawal

As far as we are aware, NHS England has no plan to monitor the impact of this withdrawal of gender-affirming healthcare on patient outcomes. This is despite evidence that removal of gender-affirming care is associated with adverse mental health outcomes, including increased suicidality among trans youth.

A decision to withdraw a treatment must consider what alternatives will be provided. Psychotherapy or psychosocial support alone – all that is currently available via the NHS – has not been demonstrated to be an effective treatment for those with a diagnosis of gender dysphoria. Nonetheless, as far as we know, NHS England has no plans to conduct a similar evidence review of
this intervention.


6. Conclusion

In summary, a drastic and potentially devastating policy change that runs counter to international standards of care has been advanced:

  • without any clear rationale,
  • on the basis of a methodologically-flawed process,
  • in the absence of peer review,
  • and without plans for monitoring impact or mitigating harm.

We therefore urge NHS England to:

  1. pause and reverse implementation of any policy changes arising from this flawed review process,
  2. publicly acknowledge and take into consideration the existing University of York systematic review into gender-affirming hormones and the existing EPPI-Centre study,
  3. ensure any clinical commissioning policy on gender affirming hormones for under-18s reflects established international best practice,
  4. and incorporate patient and clinician consensus and testimony into any decision about transgender healthcare.

A full list of signatories can be found here.

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(Guest Post) Draft Protocol Review

A review of England’s draft protocol for gender dysphoria services by CL. You can read a copy of the draft protocol here, respond to the survey here, and read my own analysis here.

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Following the lead of an information note published by the department of health, the draft protocol confirms and compounds the problems of treating gender dysphoria on the NHS. It would at least mostly standardise treatment protocols across England, burdening everyone with the same problems: We’re all in this together, right?

The Gender Services Clinical Reference Group is aiming to implement standardised service provision by April 2013 and has given interested groups until September 30 to respond. GIRES has responded, as has Terrence Higgins Trust’s Trans* Women’s Sexual Health and Wellbeing Group, whose submission I contributed to. Our issues with the Department of Health’s Information Note are seen again here, and I’d like to focus on those in particular: the framing, tailoring and requirements of treatment.

Framing Gender Services Treatment

A problem in the protocol that has carried over from the information note and current practice, is the framing of gender dysphoria treatment as the property of psychiatric specialists. Even in updating the condition being treated to ‘gender dysphoria’ from Gender Identity Disorder, which explicitly frames the problem as one with our gender identities rather than our physical characteristics and the dysphoria resulting from them, the protocol places gender dysphoric people under the care of “a mental health professional (eg. psychiatrist or psychologist) who specialises in transsexualism/gender dysphoria and has general clinical competence in diagnosis and treatment of mental or emotional disorders.”

The logic behind this in the current protocol is not forthcoming. Perhaps it is because there’s a likelihood of additional mental health issues due to the stress of dysphoria. Realistically, it’s because dysphoric people have always been treated as mentally ill, and tradition has kept us under the exclusive care of psychiatrists.

Assessment is a large part of the GICs role: confirming that we have Gender Dysphoria and are not merely deluded about our gender identities. Gender Dysphoria strong enough to necessitate transition is rare, certainly, and doctors are warned to be warey of ‘Zebra diagnoses’ (as House of God, the inspiration for ‘Scrubs’ described them). That is, when you hear hooves, think horse, not zebra. That’s sensible advice, but if you’re in southern African plains, thinking Zebra first might not be so unreasonable. In this case, if someone is distressed by their assigned gender and sexed body, identifies strongly as another gender and feels relief when living as that gender, a diagnosis of ‘trans*’ is the most likely answer. Trusting this principle would rob the GICs of hours of questions about your childhood hobbies and masturbatory habits, but it would free up a lot of unnecessary appointments.

Scotland has already moved away from the complete ownership of Gender Services by mental health teams, allowing patients to self refer to a GIC. This saves an appointment with a GP, one with a community mental health team and allows direct access. For those who need a diagnosis, removing these two stages of waiting, where ignorance or prejudice can delay or waylay a patient, can get them that diagnosis quicker. Given the burden on admin staff and funding, a time, appointment and money saving move like that is far better than the protocol’s recommendations.

Tailoring Service

The introduction to the protocol claims that it is ‘informed by the 7th edition of the WPATH Standards of Care’ – sadly, it isn’t based on them. Some key recommendations from the 7th SOC were: HRT could be prescribed without RLE and one assessment, Lower Surgery required only one year of RLE (rather, one year of HRT). None of those recommendations are followed here, so the role of the 7th SOC’s ‘informing’ is not apparent. As Ruth points out, this is essentially just the existing Charing Cross treatment.

The protocol makes references to giving patients time to consider other options, other approaches, time to reflect and, of course, the RLE’s time to consolidate. There can be great value in this and many people seek the GIC to explore and understand their gender identity. Chances to really assess their history, feelings and situation can be very valuable. A friend in this situation said that her diagnosis brought her great relief and confirmation of her feelings.

For others though, this is unnecessary. Many others will have thought, reflected and considered extensively, almost exclusively at times, before seeking a GIC: they know who they are and what they need. For them, the numerous stages to access a GIC, double assessments and arbitrary RLE periods merely delay them, take up clinic time and appointments and cause additonal frustration as they wait for their treatment.

Clinics shouldn’t be forcing surgery on everyone at the first appointment, but the slowest common denominator approach is hardly ideal either, and unnecessary, arbitrary waiting is positively detrimental in many cases.

Requirements

Despite the 7th SOC’s ‘informing’ of the protocol (perhaps they were low on coasters?), RLE remains a key feature of the proposed gender services. The protocol is unclear about RLE requirements for HRT, but indicates that full HRT can be prescribed ‘Dependent on whether an individual has socially transitioned in the sense of living full time’ or is likely to ‘do so immanently’. Top surgery needs a year of RLE, lower surgery needs 2 years.

The problems with this are numerous:

  • It’s arbitrary. There are medical reasons for a year of HRT for lower surgery, but not for living full time in role.
  • Requirements of being employed have nothing to do with a stable, well founded gender identity.
  • Whilst individuals vary greatly, some people have considerably more difficulty being read as their gender prior to HRT, and AMAB people are more likely to recieve certain forms of harassment if people read them incorrectly. Forcing people into public facing roles to get the treatment they need puts them at direct risk of violence, harassment and discrimination.
  • What ‘real life’ is being experienced? From my own and others’ experience, I know that living full time as a woman pre HRT is vastly different to being full-time after a year on HRT. The near daily abuse and marginalisation, with incumbent stress, is not the real life I’m  experiencing now, but was a feature of living as a woman who was visibly trans*. The RLE required is entirely unrepresentative.
  • For all the regional variation and obfustication, the 2 years of RLE for surgery is well known, and patients work to it. The lengthy requirement can prompt patients to ‘start the clock’ running on RLE long before they are ready. Who knows how much suffering has come from that, or from knowing that no help will come before an arbitrary deadline?
  • Patients remain on the GIC’s book during this period: the aforementioned zebras get called in for appointments to needlessly check that they’re still serious, then sent away to wait another 5 months. This takes up appointments that could help patients who are less certain of their needs.

Overall, this protocol standardises existing Charing Cross treatment, which is already behind the times in not adjusting to WPATH’s SOC 7, and seems particularly inadequate when compared to the updated Scottish protocol. Most worryingly, its requirements standardise the appointments that add to the waiting times, administrative burden (which currently means Charing Cross are taking 2-3 months to send appointment summaries) and sense of disempowerment that service users experience. With multiple screenings, assessment and ‘time for reflection’, it is particularly unsuited to those who have a clear understanding of their identity and wish to proceed, and who have thought over their option extensively prior to seeking a referral. If this protocol is to last for any significant time, it will hold service users to standards that are already inadequate – If the next update will last, we need to fight for a protocol that truly moves treatment forward, so make sure to give your views in the protocol’s survey.