NHS consultation on banning puberty blockers: what you need to know
This article is a collaborative effort, written by Luci Wilson, Milo from Glasgow and Rowan from Glasgow and edited by Shroomy. We’ve also released a podcast minisode about the consultation here.
The NHS is considering banning puberty blockers for trans kids outside of research purposes. While this plan has been known for a while, the latest public consultation round was poorly publicised, and thus missed by the trans community (us included) until a few days ago. We were alerted to it from a recent article by Abigail Thorn, which we also encourage you to read.
This is the link to the consultation. The deadline is November 1st.
Our article aims to help you fill in this consultation and give some ideas as to how.
Responding to the consultation
Public consultations are intended to gather evidence from stakeholders (ie. trans people), not just experts. So whether you’re a trans adult or child, a parent or an ally, a clinician or an ordinary person, you can respond.
The consultation documents are complex, and while it’s good to go over what you can, it’s not essential. You can use the information in this article and elsewhere to inform your responses, as well as your own experiences and knowledge.
Below we have a guide of what’s in the consultation and what may be of interest.
The document names are somewhat arcane, so here’s what they are. You don’t have to read all of these.
The guide is supposed to explain how to engage with the consultation, and expresses that they would like to hear from patients and parents, as well as clinicians etc. However, it also asks us to “familiarise ourselves” with a number of complicated documents which took our team days to dig through for this article. You don’t have to.
This is the policy which is being proposed. The name is misleading; while it is called “interim”, many of its decisions may be carried forward indefinitely. It outlines the policy to stop offering PSH to people under the age of 16.
A six-page report documenting the review process thus far, and its legal obligations. It tells us that so far they have heard from 23 stakeholders (medical professionals, other involved individuals, perhaps one or two trans people), which is why it’s important to give them more to work with.
Equalities and health inequalities impact assessment
This is the assessment of whether the new policy is discriminatory. It refers to the Equality Act and other laws and how NHS England believes this guidance meets them. The section referring to trans people is on page 10 – 21. It concludes… that there is no discrimination. It is wrong. It’s actually pretty interesting as, unlike the Evidence Review, it actually acknowledges that withdrawing the option of this treatment might be extremely bad for patients, yet still claims that it isn’t discriminatory.
Post-engagement evidence report
Supplemental evidence published or brought to the attention of the review team after the completion of the main Evidence Review.
Literature surveillance report
This is basically the bibliography and a list of everything that was searched to find it.
NHS would like you to “familiarise yourself” with this 131 page, highly technical document. You don’t have to. Most of that is the bibliography, which mainly consists of reasons why various studies weren’t included. The meat is on pages 13 – 15, where the discussion and conclusion of “we don’t have enough research” is stretched over a page and a half.
Key issues from the proposal
There is no clear rationale for removing this treatment option
It is rare for the NHS to make the decision to entirely withdraw an existing mode of treatment, except in circumstances of proven risk to patients or exorbitant cost, and in either case decisions are made with respect to potential impacts, positive or negative.
In our opinion, the proposal fails to present a solid case for the removal of puberty blockers as a routine option.
Puberty blockers (usually called Puberty Suppressing Hormones – “PSH” – by the NHS, or referred to specifically as “GnRHa”) delay the development of secondary sex characteristics. Such treatment is inherently temporary: it allows young people experiencing gender dysphoria more time to make an informed decision about how they want to live. For trans youth PSH can be an important precursor to further treatment such as HRT or surgery (both of which often remove the need for ongoing use of PSH), but desistance from treatment should not be considered a ‘failure’.
Neither the World Professional Association for Transgender Health (WPATH) Standards for Care Version 8, nor the National Institute for Health and Care Excellence (NICE) Evidence Review commissioned by NHS England found significant evidence of lasting impact from PSH on developmental factors such as bone density or cognitive function. Given this, an informed and supported decision to use PSH represents an opportunity for young people to make an unpressurised, meaningfully informed decision about ongoing care.
The withdrawal of puberty blockers as an option is likely to cause harm
The WPATH SoC v8 chapter on adolescent care (S43 – S66) cites at least one of the same studies as the NICE evidence review and yet, from a similar data pool analysed at around the same time, they draw a starkly contrasting conclusion.
Where NICE and the NHS draw the conclusion that the evidence generally showing “only minor improvements or stasis” on indicators such as mental health is a reason to dismiss the effectiveness of PSH, WPATH argue that “this emerging evidence base indicates a general improvement in the lives of transgender adolescents who, following careful assessment, receive medically necessary gender-affirming medical treatment. […] the data show early medical intervention—as part of broader combined assessment and treatment approaches focused on gender dysphoria and general well-being—can be effective and helpful for many transgender adolescents seeking these treatments.” (WPATH, 2022 S47).
This makes sense, as the main purpose of puberty blockers is to prevent dysphoria worsening and give “breathing room”. In our opinion, the lack of deterioration in itself should be seen as a positive.
The “off-label” argument is very weak
One of the arguments this proposal mentions for the withdrawal of puberty blockers outside of research is that they are used “off-label”, i.e. not officially approved for the treatment of gender dysphoria in the UK. However, that alone does not stand as an argument for no longer prescribing them for this purpose. Many medications are routinely prescribed off-label, for example metformin for PCOS or the contraceptive pill for period problems/PMS mood swings. This is not in itself a problem – the question is whether it’s safe and useful. The NHS claims it isn’t. WPATH and the trans community think it is.
A lot of important data is excluded from the evidence review
The NICE Evidence Review – on which the policy draft largely rests – excludes any sources that are not “primary research” (individual clinical studies of young people taking GnRH analogues). For example, it excludes:
- Studies of adult trans people’s experiences of taking puberty blockers as children
- Meta-analyses, which summarise multiple studies on the subject and draw conclusions
An example of such excluded research is Ristori et al (2023), which comes to the conclusion that “the use of GnRHa has so far proven to be a valuable medical option to be offered to TGD [transgender and gender diverse] adolescents” (Ristori et al. 2023, p.2).
- World Professional Association of Transgender Health (WPATH) research and standards of care
Despite the fact it was raised multiple times in the initial round of consultation earlier this year, the NHS have explicitly chosen to exclude the WPATH care standards from consideration on the grounds that it does not fall within their standard methodology to assess the quality of research (Engagement Report pg. 3-4). However, WPATH guidelines are the nearest thing to an internationally recognised standard of transgender care. As of writing, the organisation consists of over 4000 professionals in the field of transgender medicine and bases its recommendations on the latest evidence and clinical practice. And yet, rather than working together, the NHS consistently ignores and seeks to diverge from WPATH’s wealth of expertise.
While this may be an attempt to remove the bias of external analysis, it succeeds only in isolating bias to the NHS’ own review board: an institution which routinely fails trans patients in many ways, and which many in our community hold as institutionally transphobic.
The bizarre exclusion of these studies and the entirety of WPATH’s work is inexplicable. This leaves us to ask: why has the NHS come to different conclusions than those found by healthcare boards elsewhere, and why do they explicitly refuse to take into account the clinical practice employed by other comparable services around the world? It makes the guidance feel as if it is driven by political hostility to trans life in the UK more than actual clinical evidence.
The obvious discrimination is glossed over
The equalities impact assessment says the following:
“NHS England has concluded that no direct discrimination occurs. NHS England has also concluded that no indirect discrimination arises by virtue of the fact that the proposal will exclusively impact individuals who share this protected characteristic. The fact that a proposal will exclusively impact a specific group does not, in itself, render the proposal discriminatory.”
To us, the discrimination involved is obvious. We elaborate further down in the “specific questions” section.
Moreover, you can’t coerce people to participate in research. We have talked about this before and we will say it again: gatekeeping blockers behind a “research protocol” is unethical. Participation in research should be voluntary, not coerced through withdrawing treatment otherwise.
The proposal undermines Gillick competency and bodily autonomy
Young people in the UK have a right to make a decision to consent to medical care – even care which might pose some risks or be non-urgent – under a principle called Gillick competency. “Gillick” refers to the 1986 ruling that under 16s can consent to various kinds of medical care. Historically this has been instrumental in securing access to contraception and abortion for young people, and is an important bulwark against undue parental interference with young people’s ability to seek and receive medical care.
A move to restrict patient autonomy should worry us all, cis or trans. If this draft is allowed to become NHS policy, it will set a dangerous precedent for blatantly political policy decisions based on little to no evidence to not only block new treatments but remove patients’ access to existing, well-recognised treatment pathways. Who is to say that this won’t have a knock-on effect on adolescents’ access to other types of healthcare?
General advice for filling the consultation
- We encourage that you do not answer “yes” to any of the questions. As we have shown in this article, there is something to criticise for each of them.
- We also believe it’s important not to imply endorsement of any part of the proposed changes. The only good change compared to the last consultation is the caveat that people currently on blockers will continue to receive them. But that is a pale shade of comfort for those currently awaiting treatment.
- Do use this article and other sources as a reference, but try to use your own words.
- Do make it clear how the proposed changes would impact you, people you know, or trans people in general. You don’t have to be an expert to respond: your lived experience is just as important.
Here are some examples you can build on:
- “I’m not a scientist but I have been informed that important evidence has been ignored, such as WPATH guidelines, meta-analyses and studies on adults who have previously taken blockers. Why?”
- “I have taken puberty blockers as a child and they definitely helped my mental health.”
- “I didn’t have access to puberty blockers as a child, and I wish I had, because going through the wrong puberty brought me great mental distress.” (Elaborate as much as you are comfortable with.)
- “This feels like an ideological decision rather than a medical one.”
- “This proposal ignores the obvious discrimination and harm that it will cause.”
- “I’m not a scientist but I have been informed that important evidence has been ignored, such as WPATH guidelines, meta-analyses and studies on adults who have previously taken blockers. Why?”
- If you feel confident enough, do talk about the scientific evidence in detail.
- Find excuses to be heard, to fit in stuff relevant to the decision but not listed in the questions, or just to show that you disagree with the change as a member of our community.
- You may want to emphasise the concepts of informed consent and bodily autonomy: the right to decide what happens to your body and consent to treatment even if it may pose risks. Gillick competency ties into this.
- Avoid being abusive or offensive in your wording. While our anger is justified, being aggressive will just give the NHS an easy excuse to ignore your points.
Specific questions
1 and 2 are about who you are. While the responses are anonymous, what you report here may be associated with your response.
3. Has all the relevant evidence been taken into account?
On this count we think the answer is clearly “no”.
- The criteria used by the evidence review are overly narrow and exclude a range of clearly relevant data as highlighted above. The NHS has also inexplicably refused to take into account clinical experience and best practice from comparable settings around the world – information readily available through summative reports and the WPATH care standards.
- The arguments for why the current research isn’t good enough are somewhat absurd. For example, a lack of placebo trials is mentioned, even though it would be blatantly unethical to conduct such a trial. Not to mention that it would soon be obvious to patients if they’re getting a placebo, because puberty would not be stopped.
- The number of stakeholders consulted is profoundly low. Of only 23 consulted, a mere 6 were “individuals or carers/family members” – which means that it’s possible that zero trans people have been consulted in this process. This phase is structured in a way which discourages responses from lay people and patients, and was poorly publicised. The sheer lack of any active attempt to include our community in this decision-making process is shocking and negligent.
There are many options for this question; really anything you can think of, you can put in. “Lack of evidence” doesn’t just mean scientific papers. The community this service serves is a source of significant evidence which has been completely ignored, so get it in there!
4. Does the equality and health inequalities impact assessment reflect the potential impact that might arise as a result of the proposed changes?
This question is asking whether the equalities assessment is successful in assessing the impact of the changes. It absolutely is not.
- It’s worth reading over the assessment’s pages 10 – 21. The fact that no adequate community consultancy has been done as part of this decision which affects only trans people renders the statement “NHS England has concluded that no direct discrimination occurs” absurd.
- There is a lack of acknowledgement of psychological harm caused to those awaiting treatment, even though it is acknowledged that funding crisis hotlines would be a good solution. Why is this risk obfuscated, but not listed as a primary consequence?
- There are other comorbid issues which are entirely unaddressed. For example, this decision will absolutely disproportionately affect those on low income, because they don’t have the option of a private alternative.
There may be other things you can think of to bring up and challenge.
5. Are there any changes or additions you think need to be made to this policy?
Within the scope of this policy, the only reasonable change to make is to revert to the previous policy.
Some demands that we would personally put forth are:
- A full rewrite of this policy taking into account a wider range of evidence, including clinical practice, a broader range of literature and stakeholder engagement.
- Nothing about us without us. Demand that the NHS fully and actively includes trans people in these decisions. This could be achieved via consulting trans advocacy groups, inviting an external arbitration group and/or starting a Patient and Public Involvement programme specifically for this issue.
- If such a call to action occurs, it should also be widely publicised and actively shared with the community, unlike this consultation that most of us didn’t know was happening.
- A more radical proposal: desegregate trans healthcare.
- If you want to go further, this could be an opportunity to make the case for better models of care.
- Part of the reason there is so little data on PSH use is that access to PSH has been so sorely restricted by the NHS’ insistence on segregating trans healthcare wholly from other care pathways.
- If, for example, it were possible for a GP or local endocrinology department to issue a prescription for PSH (as it is with a variety of comparable hormone treatments used by cis patients, including elective adolescent medication such as contraceptives), we would have far more information and experience with PSH use and less strain on one underfunded specialist gender service. It would also decrease waiting times, which are currently about 3.5 years (an eternity in puberty).
Our conclusions
If you choose to take the ten minutes or so that it takes to respond to the consultation, thank you. Let your friends know about it too; share this and other articles to make it easier for them to engage. This goes double if they are medical professionals or work for the NHS in other capacities, as their responses will likely be given greater weight.
There is a possibility that our responses will affect the outcome of this consultation, or create challenges and obstacles to its decision. It is also possible that they will be completely ignored as the NHS confirms its commitment to a transphobic agenda, or merely its own systematic carelessness.
Regardless, it is essential that we make sure that this decision is not allowed to slip by under the radar and that it is made clear that this policy goes against the needs and desires of its most direct stakeholders. To show at every turn that we do not accept this.
Many of us don’t know how decisions are made about our healthcare. The NHS is opaque and inconsistently accountable, and currently is where much of the power over the lives of trans people in the UK is consolidated. It’s valuable to engage with, understand, and challenge its structure and policies, especially in its ongoing state of privatisation and change.
Dealing with the constant attacks on our rights and wellbeing is exhausting. Doing what we can is important and that’s why we wrote this article. Sharing and publicly responding to opportunities to be counted, seen, heard, and to fight for ourselves is valuable, even though it’s hard.
It can also help us understand which organisations and individuals are simply complicit in ignorance, and which are actively hostile to our existence. If all we achieve is learning who we can and can’t trust, that’s still something.
Remember that you matter and you are loved. The trans community stands together.
By Luci, Milo, Rowan & Shroomy
Bibliography
All of the material used to create this article can be viewed here.
