Supporting trans kids

The discussion about trans children, young people and their family in the media at the moment is incredibly unfair.

A lot of us in the trans community and our allies have pointed out the similarity to section 28. When we do, we are told we are being ridiculous, that no-one wants anything of the sort, that all these keyboard commentators want is to be sure gender dysphoric young people are receiving the ‘right support’.

None of them seem to be prepared to say what the ‘right support’ might be. However, there has been vocal and sustained criticism of:

  • Children and young people being referred to specialised NHS services (e.g. periodic hysterical headlines over rising referrals)
  • Children and young people using private health services
  • Parents who support their trans children
  • Schools introducing policies and training on supporting trans children
  • The establishment of trans-specific youth groups by charities
  • The inclusion of trans young people in general provision youth activities
  • Trans young people seeking out other trans young people, either in friendship groups at school, or online.

That seems to me to rule out every remotely feasible approach for a child or teenager to be able to discuss and express their feelings with other people and to feel that their feelings are being listened to and respected. The only options it implicitly leaves on the table are some form of conversion therapy (now rejected as harmful by NHS England, NHS Scotland and most reputable therapy bodies), or some form of section 28, don’t ask don’t tell kind of structure, where kids are expected to keep silent and hide who they are until they are 18. Virtually every queer person I know of my generation, brought up under section 28, will tell you that this is not a good option. It’s horrible to live through, and it seriously affects mental health.

A variant on this is to suggest that the commentator isn’t ruling these options out, they just want more evidence. Which is another sneaky tactic, especially when it is being applied to community activities such as peer support. In the first place, you can’t get evidence on anything until you try it. There is no way to measure the effectiveness of a youth group or an anti-bullying programme that doesn’t involve setting up such a project and collecting data. Saying you can’t set up support groups without evidence creates a catch-22 that is impossible to resolve, and leaves people who need support right now waiting indefinitely. Secondly, there have already been evidence reviews. I’m not going to list them all, but the American Academy of Pediatrics recently issued guidance recommending affirmative care, including support for the child to express their identity in schools and other social settings.  Australian guidelines published in the Lancet reach similar conclusions. The WPATH standards of care, which all gender clinics in the UK (and most other parts of the world) work to, specifically says that it is the role of professionals to help kids and their families access peer support and receive support in schools. This is upheld in the service protocol for the Gender Identity Development Service, which says the service aims to build children’s resilience in peer relationships and schools, including by offering peer support activities. The Tavistock and Portman website specifically encourages parents to seek out peer support for themselves and their children.

Ah, says the desk top commentator, but these recommendations aren’t based on good enough evidence. What we need is top quality evidence, preferably a gold-standard multi-site double-blind randomised control trials. Now, I’m all for high-quality research evidence. And yes, we do need more of it in trans health. But this line is disingenuous and unfair. Firstly, it is notoriously difficult to run RCTs of things like peer support groups. They’re never going to be double-blind: people know if they’ve gone to a support group or not. And there’s a notable tendency for the people in the control group, the ones who you haven’t offered peer support to… go out and find it for themselves. They may even find something better than the intervention you designed. In which case, your comparison between the two groups is useless. There are also serious ethical issues with withholding an intervention when the evidence already available suggests it is likely to be helpful. So in effect, research on support groups is always likely to be based around evaluating a programme, probably with strong weight on service user perspectives as to whether it was helpful, rather than a quasi-experimental design. Secondly, this insistence on data is holding support for trans kids to a much higher standard than anyone else. If a charity working with kids with epilepsy, or kids with cerebral palsy, or kids with anxiety said that they wanted to set up a support group for those kids and their families, would anyone be demanding to see their peer-reviewed evidence? Or would we all basically accept that if the charity thought it would be useful, and there was a clear demand from the kids and their parents, then it’s probably a nice idea. We accept that peer support is beneficial in every other area of health care, youth work and parenting support – why should this be an exception requiring a special level of proof?

There’s also a significant issue throughout discussions of trans healthcare – and especially for children – of conflating different aspects of support. News stories and social media commentators often jump around randomly from peer support to social transition to medical interventions, often deliberately obscuring what is being discussed and for what age of child. Hence proposals to run a coffee morning or a youth group get bundled up into discussions about medical interventions. And again, trans charities are consistently held to a much higher standard than anyone else. If an epilepsy charity pointed out that treatment protocols in the US and Canada and Australia were different to those in the UK, and seemed to be having better results, I doubt anyone would think it unreasonable for them to campaign for a review. They might or might not be successful – NHS resources are tight, there may be medical considerations the charities haven’t fully taken onboard – but we would accept their right to ask. And I also doubt anyone would think that such a campaign should be a bar to the charity also running support groups.

For those who are genuinely approaching this issue from a place of wanting better info on how to support kids: great. Do something proactive and positive, preferably following some respectful listening to the kids themselves about what they want and need. Lobby for more investment in health services and community services and yes, in research too. Encourage commissioners and providers and educators to learn from best practice around the world. Champion anti-bullying programmes in schools (we don’t need an RCT to agree bullying is bad, right?) But if all you are doing is making widespread, scattergun criticism, and your criticisms are solely directed towards resisting any provision of any kind of support, then take a long, hard look at yourself. Are you really wanting to help trans kids? Or, in your heart of hearts, are you really just wanting to make them go away, to stop yourself having to see or hear any more about a group of children whose distress you can’t empathise with and whose assertions of need contradict your worldview. And if you suspect that may be a bit of what you’re feeling, if in fact you can’t honestly imagine yourself getting behind any kind of model of support… step back from this. Or at least be honest enough to say that actually, you don’t want to support trans kids at all.

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Every trans media piece, ever

Kent Host: Hi, and welcome. Today, we’re discussing transgenderismology. We’ve got our experts, Miranda Nimby from Concerned Mums Who Have Never Met A Trans Person, and Professor Doctor Barry Scienceman (area of expertise: Astrophysics).

Miranda: Thanks, Kent,

Barry: Great to be here.

Kent Host: So, Miranda, why don’t you start by outlining your concerns?

Miranda: Well, Kent, I just think that all these things are moving too fast. When I was a child, I loved reading about George in the Famous Five. But did you know that if George existed today, she would be forcibly bundled off to a Gender Reassignment Camp, force-fed hormones, sterilised, have a beard superglued to her face, and then indoctrinated into the patriarchy?

Kent Host: Wow, that sounds dreadful. Barry, what’s your perspective?

Barry: Well, as an astrophysicist, this isn’t really a subject I’m qualified to comment on. But if I were to wildly speculate, I would assume that this is the end of civilisation as we know it, and a probable contributor to the heat death of the universe.

Kent Host: So if I understand you correctly, the existence of trans people could be the end of life on Earth?

Miranda: Absolutely.

Barry: That is a very strong possibility.

Kent: Fascinating. Now, on line one I have Katie from Basingstoke, who is currently supporting her child with gender identity issues.

Katie: Hi, Kent. I just want to say that this all seems a bit over-dramatic. My ten year-old daughter Beth has been absolutely clear for several years now that she sees herself as a girl. She’s well-adjusted at school, and all her friends and teachers are really supportive. We’ve spoken to our GP, and to a local adolescent counsellor. We’ve been on a waiting list for specialist gender identity support for nine months now, and we’re expecting that even when we get to the end of that, we’ll probably have to have a lot of family therapy. Hopefully, all being well, Beth may be offered blockers while she thinks things through, though we know there won’t be any substantial hormonal interventions until she’s sixteen. I don’t feel we’re being rushed into anything – on the contrary, the process seems pretty slow, and that’s making things harder for Beth. Really, what we’d like is more support, and perhaps a bit more flexibility in healthcare.

Barry: Disgraceful.

Miranda: Have you got Katie’s details there? I’m going to report her to social services.

Kent: Now, now. Katie, aren’t you concerned that you’re horrendously ruining your son’s life?

Katie: I am quite sure that my daughter Beth’s life is improved by knowing her parents love her. She’s been so much happier since we told her that we love her just as she is.

Barry: (tuts)

Miranda: It is quite clear that Katie is forcing some kind of agenda on her child. Probably she is refusing to accept that her child is a gay male.

Katie: Beth is only ten, so I think it’s a bit early to reach any definite conclusions about sexuality. And I have lots of gay friends and family members. I’d have no problem with a gay son – but Beth has been saying for years she is a girl. To be honest, I think the indications are more likely Beth is a lesbian – but that’s completely up to her. As I say, we’ll love her no matter what.

Miranda: Boys can like dolls too.

Katie: Yes, I know that. But Beth doesn’t like dolls. She’s a girl who likes football and science.

Miranda: Ah! Stereotypically male interests.

Katie: What? That’s completely inconsistent with what you already said…

Kent Host: I’m afraid we have no more time for this. Over to line 2, where Sarah wants to talk about her story.

Sarah: Hi, yes. I’m not trans. I’ve never thought I was trans. But I was depressed in my teens, so I decided to buy testosterone online, without any medical advice, and self-inject it. Now I think this was really stupid, and I regret it.

Kent Host: So would you say that this definitely means that trans teens should be denied any access to expert medical advice or support, Sarah?

Sarah: Absolutely! My own experience of illegally procuring inappropriate medicine through black market online sites, as someone who never thought she was trans, definitely means that all trans young people in contact with legitimate medical services should be entirely denied medical care.

Miranda: Couldn’t agree more.

Barry: Sounds about right to me.

Kent: I think there are some powerful narratives coming through here. Any final reflections?

Miranda: Well, I think this all goes to show that trans people are dangerous lunatics, who should be entirely denied any kind of social rights or recognition.

Barry: “Dangerous lunatics” is perhaps a strong phrase, but I would tend to agree that much more research is required to establish the exact mental illness which trans people have, and come up with a way of forcing them to meet repressive social norms.

(Trans caller on line 6: Hi, I’m actually trans. Am I allowed to express my views on my own identity and experiences?
Researcher: No. Please clear the line so we can talk to some religious crank who’s making it up as he goes along.)

Kent Host: Well, I hope you’ve valued this important balanced debate, which has comprehensively covered all the issues regarding trans people in society. (Cheerful jingle as programme fades out).

 

 

 

The problem of ignorance

I’ve been having a think recently about the problem of ignorance.

Eve Sedgwick points out in Epistemology of the Closet that the level and tone of a conversation is often set by the most ignorant. If two politicians are having a meeting, and the French politician speaks a bit of English, but the American politician speaks no French, the negotiations have to take place in English. Which means that the more ignorant person gets to speak elaborately in their own language, while making no effort to understand the other language, and the less ignorant person has to do all the work of trying to make themselves understood in a language that is not their own. Invariably, there will be times when such translations are imperfect: some French words and concepts don’t have a direct English equivalent, there may be cultural differences underpinning linguistic differences; and even a French person with excellent English may occasionally stumble over finding the correct word for what they are trying to say.

Speaking different languages is a very immediate example of ignorance, but clearly there are many other forms. If you’re at a party, and you’re introduced to a nuclear physicist and ask her about her work, she is probably going to have to do some work to explain what she does in terms you will understand. Again, the burden is on her, with her higher level of knowledge, to rework what she knows into something you can understand.

On any dimension of personal experience, people are experts in their own experiences. No-one knows more about what it is like to be me than I do, and no-one know more about what it is to be you than you do. I am more ignorant if we are talking about you, and you are more ignorant if we are talking about me. However, trans people invariably have some knowledge of cis people, cis experiences, the cis worldview. How can we not? We’ve lived all our lives in a society in which practically all information (including information about trans people) is produced by and for cis people. It is not entirely our own worldview. I am not cis. There are things about cis experience which do not speak to me, and do not resonate with my own experience, but which I have heard enough about to understand that they seem to be an important component of other people’s experiences. I am also familiar enough with the cis world to recognise that cis people are not all the same, and can have different opinions about things, even fundamental questions about identity and existence. Richard Dawkins and the Archbishop of Canterbury fundamentally disagree on many aspects of what it is to be human, but that does not mean that older white Oxbridge-educated cis men are not human. In contrast, many cis people are pretty ignorant about trans people. That’s not usually deliberate – up until relatively recently there was very limited media discussion, no information in schools, little or no specific guidance for professionals, and so on. Many cis people are actively and supportively trying to understand better. But there is still a backlog of ignorance, which includes a tendency to homogenise us, and to fail to recognise diversity of opinion within trans communities.

At the moment, particularly in the context of high levels of media scrutiny, this feels wearyingly restrictive on the conversations we as trans people want to have. Even the internal conversations we have amongst ourselves are prone to being hijacked by someone who blunders in and insists we explain ourselves and our experiences for them. To go back to the nuclear physicist at the party, imagine she and three of her colleagues are stood in the corner, quietly having a chat about their work, perhaps with a minor disagreement over some technicality and then someone else, with little understanding of the field, comes over and insists the physicists explain their work. Imagine the newcomer has had a couple of drinks, and is a bit belligerent, and takes overheard comments out of context, or misunderstands things. Imagine they insist that anything that can’t be explained to them in words of two syllables must be wrong or invalid. Imagine they keep going over and over the same trivial point, even though that has no relationship to what the physicists were actually trying to discuss. Imagine that they insist that the minor technical disagreement is proof that the entirety of modern nuclear physics is wrong and unproven. Imagine that the physicists’ attempts to simplify complex concepts for the sake of the outsider are seized upon, and then any further attempts to introduce nuance are pronounced to be inconsistent with what has already been said. Imagine that the physicists get bored of this, tell the newcomer to fuck off, and the newcomer spends the rest of the party complaining to everyone else present this is a violation of their free speech and they were only asking questions, and why are these physicists so hostile? That is what so many conversations about trans issues feel like at the moment.

As I say, many attempts to improve understanding are well-meaning. Reducing ignorance does require some work on the part of those with more knowledge. What is frustrating is when the dynamics are not recognised. If you are a cis person, asking a trans person to explain aspects of their experience to you, that is occurring because they understand their own experiences better than you do. If you do not understand what they are saying, that arises from your ignorance, or possibly from a difficulty in translating concepts, but not from their experience being invalid. And in asking someone to explain to you, you are asking someone to do work. People are allowed to say ‘no’ to that work. In social, informal contexts, such as parties, or the internet, people are allowed to say ‘Actually, I’ve come onto social media to chat with my friends, or to watch cat videos, or whatever else, and I don’t really want to spend my free time doing work for you.’ In professional or organisational settings (for example, you’ve asked a local trans organisation to come in and talk to staff, or to look over your equality policy),  you should be offering recompense for work, not expecting people to share their expertise for free. There also comes a point when ignorance is wilful. If you are asking questions and have made no attempt to discover whether those questions have been answered elsewhere, consider whether you’re asking someone to do unnecessary work, or work that you could and should do for yourself.

And finally: accept that trans people have diverse views and not every conversation about trans issues is a 101 for beginners. At the moment, it often doesn’t feel safe for trans people to have nuanced conversations and discussions about our own complex experiences. Even on our own blogs, or in social media chats with our friends, we are conscious that our words may be seized on, taken out of context, used as ‘proof’ of something we never said. Many trans people who want to improve social awareness are highly distrustful of the media, because there has been so much misrepresentation and wilful ignorance in the past. That atmosphere doesn’t further debate, it destroys it.

Hysterectomies – my additional response to draft NHS England protocol

Hysterectomies (with bilateral salpingo-oopherectomy)

 

Current situation and protocols

  1. Up until now, the Interim Protocol for Gender Dysphoria has listed hysterectomies + BSO as a core, commissioned procedure under the gender dysphoria pathway. It has also set standards for accessing hysterectomies on the grounds of gender dysphoria, derived from the WPATH standards (including requiring at least one signature from a gender clinic), and states a time frame in which hysterectomies should be undertaken (2-5 years from starting testosterone, on the grounds of possible risk of endometrial malignancy)
  2. In contrast, the good practice guide from the Royal College of Psychiatrists (2013) states that GPs can directly refer trans male patients for hysterectomies after a certain period of time living as male, without necessarily requiring specific endorsement from a gender clinic
  3. The new draft protocol does not propose to include hysterectomies + BSO as a core commissioned service, unless undertaken as part of a masculinising genitoplasty procedure. I assume that this is for reasons 4 and 5 below.

Considerations

  1. Hysterectomies with BSO in trans men and non-binary people are not a technically specialised procedure. As far as I am aware, any competent gynaecology unit should be able to conduct the procedure. There are some specific considerations (e.g. a laparoscopically-assisted procedure is usually preferred to preserve options for future phalloplasty), but again, most if not all gynaecology units should be technically capable of addressing these issues, provided that they know to do so.
  2. There are potential logistical/social difficulties in accommodating trans men and nonbinary people in gynaecological services, e.g. providing services sensitively, inpatient placement, use of correct name/title. However, making adaptations to address these issues would be covered under Equality Act 2010 requirements, and it does not seem reasonable to expect trans men to travel to a small number of specialist providers on the basis that local providers might unlawfully break the Equality Act.
  3. The clinical literature on trans masculine hysterectomies + BSO is very limited, and there seems to be little clear recognition of the fact that there are multiple reasons why hysterectomies and BSO are conducted in this population, including:
    • For some trans men, having ‘female’ internal anatomy is part of their experience of dysphoria. Accordingly, a hysterectomy and BSO is an important part of their gender dysphoria pathway, even if the procedure does not need to be conducted by a specialist provider.
    • Risk of malignancy due to unopposed testosterone. My understanding is that the clinical evidence on this is currently more theoretical than empirically established. Wesp (2017) and Feldman (2016) have recently reviewed the evidence and both do not recommend hysterectomy on prophylactic grounds for younger trans men unless there are specific concerns. In contrast, as noted at 1 above, NHS England currently does recommend hysterectomy on prophylactic grounds for all trans men within 5 years of starting testosterone, regardless of age or other risk factors. My perception from being in trans communities is that, many trans men are under the impression that having a hysterectomy is clinically urgent, and that they are at a direct and immediate risk, even at a relatively young age (e.g. early 20s) if they do not have one within the 5 year period. For some, this causes significant anxiety and distress.
    • Other gynaecological needs. It is already established that trans men and non-binary people should have access to a hysterectomy and/or BSO in situations where it would be clinically appropriate for a cis woman to have these procedures, and that this should never be delayed due to the gender dysphoria pathway.
    • Factors or combinations of factors which, in the cis female population, might not be deemed sufficient basis for a hysterectomy, but which, coupled with gender dysphoria, may be seen as sufficient basis for hysterectomy in trans men and non-binary people (e.g. unwillingness to undergo smear tests; painful or heavy menstrual cycles which do not stop on hormone therapy; a desire for permanent infertility). For some of these problems, it is possible that alternative procedures might be suitable – however, the evidence is again minimal.
    • There has been a historic assumption that trans men would never seek to become pregnant, and that testosterone leads quickly to permanent sterility. I suspect this has indirectly influenced attitudes to sterilising surgeries in this population, in that fertility preservation may not have always been taken into account in decisions about hysterectomies for people taking testosterone. It is becoming increasingly clear that this assumption is seriously flawed and that fertility preservation (including, in some cases, preservation of the ability to become pregnant) is important for many trans men and non-binary people, including those already taking testosterone.
  4. Anecdotally, it appears that GPs are often reluctant to refer a trans masculine patient for a hysterectomy without a signature from a gender clinic, and gynaecology units are often reluctant to accept such referrals without gender clinic approval. Occasionally this happens even where patients do have urgent gynaecological needs which would justify hysterectomy regardless of gender dysphoria, despite the fact that current protocols state that this should not happen.

Implications of the new protocol

  1. The new protocol will mean that the gender dysphoria pathway no longer specifies how trans men and nonbinary people can access hysterectomy and BSO on the NHS, unless they do so as part of another genitoplasty procedure. This will be the case even if (as above), they want to access hysterectomy purely as an intervention to address gender dysphoria. As a consequence, there may be a mismatch between their needs and local protocols, which may not currently recognise gender dysphoria as a grounds for hysterectomy.
  2. Gynaecology units, patients and GPs may not realise that a laparoscopic procedure would preserve future surgery options.
  3. The proposed ‘sign-off’ procedures for hysterectomy and BSO after the new protocol is adopted are unclear. Can the GP refer a trans masculine patient for hysterectomy without a signature from the gender clinic? Should a gynaecology unit accept such a referral? Are the gynaecology unit or the GP expected to establish for themselves whether the patient has persistent gender dysphoria, and are they capable of making this assessment? Do they have the correct information to discuss issues of risk (see below)? On the other hand, the new protocol does not state that gender service providers should issue signatures or advice regarding hysterectomies. Suppose a gender clinic adopts a policy of not signing off hysterectomies, but local GPs/gynaecology units refuse to provide them without a clinic signature?
  4. The new protocol will neither reiterate, nor revoke/amend the previous advice that trans men must have a hysterectomy within 2-5 years of starting testosterone. As noted above, my perception is that this belief is already thoroughly embedded in trans communities, and that unless NHS England specifically revokes or amends this guidance, trans men and non-binary people taking testosterone may continue to believe that they are at current direct risk unless they have a hysterectomy. GPs and local gynaecology services are unlikely to have up-to-date clinical knowledge on these issues. If NHS England does still consider that clinical risk is a valid basis for hysterectomy, this should be made clear in guidance, issued in a format to be taken into account by referrers/surgical providers locally. If NHS England considers that risk is no longer sufficient basis for recommending hysterectomy, this aspect of previous guidance should be explicitly revoked or amended in order to minimise confusion and distress (and to avoid potentially unnecessary surgeries).

Conclusions

  1. I broadly agree with the decision not to commission hysterectomies and oophorectomies as a specialised surgery. However, there needs to be much clearer information and guidance issued alongside the adoption of the new protocol. This needs to go beyond liaising with local gynaecology units about being more ‘trans-friendly’, and also include clear guidance on pathways and protocols, including an up-to-date clinical assessment of when hysterectomies should be considered or recommended for trans men and non-binary people, and any requirements that are in place. The service specification itself needs to clearly point to suitable guidance documents, and also to explicitly place a duty on gender identity non-surgical providers to issue advice, information and (if appropriate) ‘sign-off’ regarding hysterectomies conducted by local providers.

 

References:

Feldman, J. (2016). Preventative Care of the Transgender Patient: An Evidence-Based Approach. Principles of Transgender Medicine and Surgery. R. Ettner, S. Monstrey and E. Coleman. New York, Routledge.

Wesp, L. (2017). “Ovarian and endometrial cancer considerations in transgender men.”   Retrieved 3/2/2017, from http://transhealth.ucsf.edu/trans?page=guidelines-ovarian-cancer.

NHS England Trans Questionnaires Aug 2017

NHS England have today issued two questionnaires – one seeking trans people’s experiences of using gynaecology services in England in the last 5 years, and one seeking trans people’s experiences of using non-GIC speech and language therapy services in England in the last 5 years.

Under the draft NHS specialist gender identity services protocol (currently also out for consultation), these are both services where (some) trans people will access care from general hospital services, so presumably this feedback is intended to contribute to improving patient experiences.

For reasons best known to NHS England, this consultation runs for less than 2 weeks, in the middle of the holiday period (closing 27th August), and you have to reply by downloading a Word document, filling it out and emailing back to a named person (so not exactly super-anonymous for talking about gynaecology experiences). I have already provided feedback on this as a consultation mechanism

The surveys are here:

NHS Questionnaire Gynaecology


NHS Questionnaire Speech and Language Therapy

Survey responses should be sent to:

zuzana.bates@nhs.net

New GIC protocols – some initial thoughts

NHS England has now launched a consultation on adult gender identity services. This runs until 30th September 2017.

Overall, I think there’s a lot of positives in there, and it addresses a lot of the frustrating inconsistencies between clinics. There’s an underlying issue about resourcing and capacity to deliver, but as a statement of what clinics should be aiming to achieve, it’s pretty good.

Here’s my initial thoughts on the positives, and on what could be improved.

Positives

  • Explicit statement of equity for non-binary people
  • Explicit recognition that being trans is not a mental illness and that trans people should have autonomy with regard to gender identity and presentation
  • Commitment to meet waiting time standards
  • They will consider Skype and phone consultations where possible (hopefully avoiding the current situation where some people make a 4 hour round trip for a 15 min appointment)
  • Standardised assessment process, which in most cases is completed in 2 appointments
  • Standardising the age limits for service, with extra flexibility on transfers – 17+ go to adult services, <17 are referred to youth services (but can stay there till they’re 20 if appropriate).
  • Clear statement that physical exams should not be routinely performed.
  • Absolute rejection of conversion therapy
  • Everyone now gets a named professional, who is their point of contact., and who checks in with them regularly (can be by email or phone)
  • Clear recognition that not everyone will seek interventions in the same linear, sequential process. This could for example make it easier for trans masculine people who want top surgery but not testosterone.
  • Clear re-referral process for people who have deferred surgery, then come back to the service for their surgery referral.
  • Clear statement that therapy should be available for those who want/need it, but is not mandatory
  • Referrals are acknowledged within 14 days, and don’t get rejected for not being in quite the right format
  • There’s a clear process for transferring people from one GIC to another, without reassessing them
  • Clinics cannot require that family members attend appointments, and if patients refuse a suggestion that family members come along, this cannot affect their care.
  • Surgeons have to demonstrate that they are performing at least 20 procedures a year, and that they are engaging with peers, talking to them about outcomes and complications etc (this is aiming to avoid the situation where you get a surgeon doing a small number of procedures which they are not very skilled at).
  • Clear standards for what info should be made available at consent to surgery, including offering the patient options and talking about pros and cons.
  • Clear statement that if you’re unhappy with surgery and don’t want to be treated by the same surgeon, you have the right to be referred elsewhere.
  • Clear statement that if your BMI is over threshold, you should still be referred to the surgeon, and an individual discussion had about risk (also, BMI threshold for  top surgery is set at 40 – some clinics had been refusing to refer people for top surgery until their BMI was 30, even though many top surgeons are happy to operate on people in the 30-40 range)

Could be improved

  • The big one is that there is currently a dispute between NHS England and the British Medical Association over the role of GPs in prescribing hormones. The document therefore presents 4 options: GP initiates hormones on recommendation of gender clinic (status quo); gender clinic gives 1st prescription and GP continues; gender clinic prescribes for a year then GP continues; or CCG train a specialised GP who does all hormone prescriptions in that area.
    – I think the third and fourth options are very problematic. The GICs don’t currently have capacity to do blood tests and administer injections, and it would mean a long journey for patients. In particular, patients on sustanon or enanthate might be having to travel to their gender clinic every three or four weeks for an injection – clearly impractical for someone in full time work living a couple of hours away from their gender clinic.
    – A specialised GP sounds great, especially if they could do bridging prescriptions – but I don’t think it’s necessary or sensible to say that they should be the only person who can ever prescribe hormones.  There are patients currently in primary care who have been on hormones, managed by their GPs, for several decades. How does it benefit those patients to send them elsewhere in the CCG (possibly a different town) for prescriptions? Plus what happens when that GP is ill, or on maternity leave? Also, the service specification only says what specialised services will do – it can’t place requirements on CCGs. So if the specialised services specification is drawn up expecting CCGs to commission and recruit to these new roles, then what happens if they don’t? The document also makes it clear that the NHS does not know how many trans patients it already has, but it does know the numbers seeking help are increasing. The demand for the new role would therefore be unknown, and rising cumulatively (an unknown number of trans people already taking hormones would all now have to access this service, plus the increasing number of future patients). Realistically, this would be difficult to commission for, and almost certainly experience problems and bottlenecks.
    – I would prefer a model which encourages CCGs to have a GP specialist, and for that to be a point of support for other doctors – but which does not say that only that specialist can prescribe.
    Edited 26/9/17 to note – On re-reading, it does seem as if they are proposing patients should only use the specialist GP for the first 12 months, then return to their normal GP (though this is not wholly clear in the survey itself, only when you read the more detailed document). However, I still think there are potential problems with bottlenecks, what happens if there is no specialist etc.
  • Self-referral would have been nice. It seems to be working okay in Scotland. Although I understand the point about GP buy-in, the GP doesn’t have to be the one who refers the patient anyway.
  • The statement that they will not accept referrals of people with acute physical or mental health problems seems too categorical. In practice, waiting lists are currently 12 months or more – it is pretty likely that someone with an acute health problem at the time of referral will have resolved it by the time they get to an appointment. I think it would be better to say that such referrals will be accepted for the waiting list, but the situation reviewed before an appointment is offered
  • Specialised services won’t take responsibility for problems with surgery that are not picked up till after 18 months. Unfortunately, some people who’ve had bad surgical outcomes find that very difficult to talk about, and they do come forward some years down the line. In some cases, the surgeon has told them they’re making a fuss over nothing, and it may not be till they speak to others or see photos of others that they realise their result was very poor quality.
  • To get a second opinion on surgery that has gone wrong, you have to approach your original surgeon in the first instance and ask them to refer you to someone else. Some people may not want to face the surgeon they’re unhappy with again.
  • Edited 26/09/17 to add – In my final submission to this consultation, I gave a very full response regarding hysterectomy referral procedures. At present, NHS England recommends anyone taking testosterone has a hysterectomy after 2-5 years due to risk of malignancy. More recent reviews (e.g. Feldman, 2016; Wesp, 2017) suggest that actually, risk is largely unproven, and NHS England is recommending hysterectomy in situations where other trans health bodies do now. However, for some people, hysterectomy is an important part of addressing gender dysphoria, and/or helps to resolve other gynaecological problems, and therefore access is improtant. It is not a technically specialist operation – most gynae units can do it. However, if hysterectomy is being done because of gender dysphoria, sign off from a gender clinic is required. The new protocol does not specifically require gender clinics to give that sign-off. It also neither confirms nor denies whether NHS England still officially recommends hysterectomies on the basis of risk.

EPATH 2017

EPATH is the European Professional Association for Transgender Health. Between 6th and 8th April, it held its second conference in Belgrade. I was fortunate enough to be able to go because I am a PhD student whose university makes some funding available for events such as conferences – many people who could have productively contributed to the conference are not in such a position.

It was the first time I’d been to any PATH events – however, as a trans person, several aspects of my life and healthcare have been shaped by the guidelines and standards put in place by the World Professional Association for Transgender Health, and by the practices of its members.

One thing that was absolutely clear throughout the event was that every professional I spoke to or heard a presentation from was dedicated and enthusiastic about helping trans people. However, something that also came across very strongly was just how different the frames of reference for that were. Europe’s a diverse place, and indeed there was discussion of healthcare systems outside what would usually be considered Europe, such as countries in central Asia. During the course of the conference, we heard that that the European Court of Human Rights has ruled sterilisation of trans people as a condition of legal recognition is a violation of human rights. But many of those present had prepared their presentations in countries where this violation is still the law. Many professionals present worked in countries where there is limited social acceptance of LGBT people, and gender roles are relatively restricted. Several clinics were helping their patients navigate restrictive legal systems, or indeed legal systems which made little or no provision for trans people at all. Many medical professionals (perhaps all of them!) were also working in the context of trans health being seen as something of a suspect field by their colleagues, in which even the well-established basics of supporting trans people continue to be seen as controversial and requiring justification.

As a consequence, it perhaps isn’t surprising that there were points in some presentations where it was very clear that some professionals saw their role as involving a lot of gate-keeping, with a focus on creating heterosexual, gender-binary individuals, who would engage in penis-in-vagina sex and could be counted a success if they ‘passed’ for cis. In some cases, I’m sure this impression was heightened by translation issues – it can be hard to get trans terminology right even if English is your first language, and I can only imagine how difficult a task it must be to present on this subject in an additional language at an international conference which brings together such a diverse range of people and experiences. And of course, part of the point of such a conference is to bring  different viewpoints together for discussion. Nonetheless, it didn’t always make the conference feel particularly welcoming for me as a trans attendee

There was one incident during the conference which was particularly overt,  and which I found much more personally distressing than I would have anticipated. It was at the publicly open session of the conference, and one presenter showed multiple slides of naked trans people, which small black boxes over their face, showing their bodies before hormones and then at timed stages while on hormones, with close focus on breasts, chests and genitals. It was hugely pathologising, there was no discussion of consent, and the commentary was all about appearance to the cis gaze. (I understand of course that photographs may at times be appropriate to illustrate surgical techniques etc: this was not such a situation, and the poses complete with small black squares over faces felt like medical textbooks from fifty or sixty years ago). I found it difficult to believe that any trans person would volunteer to be photographed and have their body displayed in this way, unless they felt that doing so was required in order to access to treatment (which of course would not meet academic or medical standards of ‘consent’). I felt unable to continue to sit through that session, but my understanding was that the presentation continued to its end.

I want to stress that the EPATH organisers made a very full apology afterwards, and I do believe they were genuinely mortified. There was a discussion the following day about conference language policy, which also included statements about the use of images. I do think there remains an issue about how such guidance is enforced: I would lean towards every presenter using photos of individuals having to make an explicit statement that they have that individual’s free and informed consent to the display of those images. (Similar to declarations of participant consent for academic journals). I think there should also be consideration of under what circumstances a presentation should be interrupted by organisers/chairs if it does become clear that there is a substantial volume of inappropriate content (and perhaps especially if it is a session where there will be no opportunity for subsequent questions/comments from the floor, in which case there is not even the option for offering a counter perspective afterwards). This is particularly the case given that a code of conduct was issued asking attendees to commit to not disrupting presentations: if EPATH don’t want attendees to interrupt inappropriate presentations, we need confidence that organisers and chairs will.

It was particularly unfortunate this presentation preceded the TGEU presentation, which felt like the only point on the main conference floor where there was very direct consideration of trans people’s own views and lived experiences of healthcare systems  – but I missed the first part of that session because I had been unable to sit through the previous session, and was still too furious to focus for much of the TGEU session when I did come back in. Some of the year in review sessions on the final day of the conference, particularly the legal and social sciences ones, also gave weight to trans people’s lived, situated experiences. There were other trans professionals present at the conference, and several gave interesting presentations or chaired sessions, but these were mostly not on the main conference floor, and the streaming approach within the conference meant that trans experiences and perspectives were frequently discussed very separately to discussing medical interventions. Overall, the main conference sessions which brought everyone together, did quite often feel as if they were “about trans people, without trans people”, which certainly in the UK context is something healthcare is supposed to be moving away from.

Streaming

EPATH was predominantly arranged in different ‘streams’. In most time-slots, there was a surgery stream, an endocrinology stream, a couple of mental health streams, a child and adolescent stream, and a social science stream. There were a couple of sessions on issues like trans people’s perspectives on ICD changes – but again, those were often up against surgery sessions. Of course, streaming is common in academic and health conferences, and it’s important and beneficial that time is used sensibly and professionals attend sessions relevant to their interests and practices.

However, one thing that gets stressed a lot in trans healthcare is multidisciplinarity. Mental health professionals refer their patients for surgery. Surgeons take on patients who are having hormone therapy. Professionals working with children may be asked by children or their parents about what might be possible in terms of later medical interventions. Endocrinologists and mental health professionals should be making sure their patients understand fertility options and implications. And as I have outlined, one thing that really came across in this conference was how different the underpinning social frames were, and that it would have been beneficial to have some cross-conversations on people’s assumptions and beliefs.

My concern therefore is that if (for example) a masculining surgeon attended the conference, believing that sexual function for trans men was dependent on phalloplasty (and comments to this effect were made in at least one presentation that I saw) I’m not sure they would have necessarily have heard from professionals from other disciplines, who might have pointed out that there are other ways of thinking about sexual satisfaction and function. Greater awareness of different perspectives and considerations might be helpful to a surgeon who is talking through options with a patient. So while streaming is beneficial, I think the very hard delineations betwen the streams was not necessarily conducive to open discussion and multi-disciplinary, patient-centred practice, especially given that there was relatively little representation of trans lived experience of health on the main conference floor.

Overall, I want to stress that the event was interesting, the organisers had clearly put a lot of work into it, and the host venue were incredibly welcoming. The event ran pretty smoothly, and there was a lot of intelligent, interesting discussion. As I say, all professionals I spoke to were clearly enthusiastic, dedicated and well-meaning, and even the presentation which I found uncomfortable was clearly at heart motivated by a desire to help trans people, within a cultural context which is quite different to the UK. EPATH is a relatively new event, and I suspect EPATH may face quite different challenges in conference organising and reaching consensus on language compared to USPATH or CPATH, given the sheer diversity of countries involved, and that English was not the first language of the majority of attendees. The issues I have highlighted are therefore intended constructively to make improvements for the future, rather than as a criticism of this event.

Why TERFs don’t talk about trans men (and why cis men don’t either)

I quite often see discussions about why trans exclusionary radical feminists (TERFs) tend to discuss most of their vitriol towards trans women, and largely ignore trans men. Sometimes, this is presented as a sign that trans men are better socially accepted than trans women. Personally, I don’t think that’s the answer, and at some level, it’s fundamentally a response to entirely the wrong question.

TERFs are described specifically in terms of their focus on exclusion. They are fundamentally focused upon keeping people out. What are TERFs trying to keep people out of? What is the turf they are defending (bad pun, I know)? It’s their notion of womanhood, against those women who they think don’t belong. And that’s your answer to why they aren’t talking about trans men. They don’t need to defend their vision of womanhood against trans men, because according to them the situation is either (a) trans men are in their category of woman, like it or not, on the basis of our presumed chromosomes/presumed reproductive capacity (but we fail to recognis this due to being  poor, deluded, vulnerable fools, misled by modern medicine, or autism, or Tumblr, or Skeletor, or whatever their preferred villain of the week is) or (b) we’ve voluntarily ducked out of the fight, so we’re wusses or traitors, and they can turn their backs against us. Either way, we aren’t encroaching on their turf, we’re trying to escape it. Hence no effort is needed to exclude us. Some TERFs do make an attempt to coercively fence us in, but for the most part they’re more interested in doing that for those who they see as vulnerable and salvageable – kids – than worrying about what us dyed-in-the-wool sell-outs might be up to. Plus deep down, I suspect a lot of TERFs come from a place where they can sympathise with the fundamental desire to escape womanhood, even if they think we’re going about it all wrong.

So the real question with regard to trans men isn’t why TERFs aren’t talking about us, it’s why there isn’t a comparable movement of cis men rallying round to say that trans men aren’t men. Except that isn’t a question, because we all know why. Cis men with an exclusionary attitude don’t see trans men as any kind of a threat to their turf, because no cis-penis. That’s it. They don’t see a need to dress that up with theory, or discussing social constructs, or stuff about innate essences, or socialisation, or selectively-curated research papers, or anything else. Transphobic cis men might mock trans men, or be disgusted by us, or threaten us, but they don’t see any need to waste time arguing with us, let alone bother defending their borders against us. And you can’t spin: “You haven’t got [what I consider to be] a willy” out into a Sunday broadsheet editorial, even if you write it in really big letters.

As trans people who are feminists, I think we’re often particularly outraged by the TERFs, because we feel that they should get it. They’ve thought about gender. Some of them get paid to write about this stuff. And yes, what they write is often dismissive and cruel and harmful, and they should know better. But that doesn’t give transphobic cis men a free pass, just because they can’t even be arsed to try to explain their logic for dismissing trans people, or haven’t thought about it beyond “willies”.

Patrick Califia nailed this years ago. The general social attitude is: Of course women want to be men. And of course they never can be. But that’s not acceptance of trans men, it’s – at best – a pitying glance. And it’s an intersection between misogyny and transphobia. It may well frequently be a less aggressively policed one than transmisogyny, but it’s certainly not acceptance of trans men’s identities as real and valid. I don’t think this particular intersection has been well-mapped out yet, and perhaps at some stage I’ll have a better stab at it. But for the moment, I’d like to point out it’s there.

Scientific truths

It’s a fairly common occurrence that I see comments directed to trans people along the lines of “Trans people are denying science” “Science says penis= boy and vagina = girl” “Science says males have XY chromosomes and females have XX chromosomes”, “It’s basic biology, people”, and so on and so forth.

What do we mean by science? Well, my high school memory of what we were taught about science (from Karl Popper) is that the basic requirement is for a hypothesis which  is falsifiable. So for example, the statement that “All swans are white” is a hypothesis which can be proved false if I see a black swan. Seeing millions of white swans does not conclusively prove the hypothesis to be true (though may strongly support it, and in practice we sometimes have to work with the best theory we have), but the moment a black swan is observed, the hypothesis is proven false.

“All men have penises” is, on the face of it, a similar statement to the one about swans. It’s falsifiable if I can find a man without a penis. However, for this to work, we have to have a way of defining “man” which does not involve reference to penises. Otherwise, there is a logical fallacy. To go back to the swans, if I say “All swans are white”, and then I see a black swan and say “No, that is not a swan because swans are white, so that black thing cannot be a swan”, I have made a circular argument. If my definition of a swan requires it to be white, and I will not accept anything that is not white to be a swan, my premise is unfalsifiable. Therefore, it is not a scientific hypothesis, but simply a statement of how I am defining swans.

Now, I expect that if I got the leading world scientific experts on swans together, they’d probably all agree on what a swan is. They’d probably base their definition on a number of long-standing principles and conventions within biology and taxonomy about how to define a species. It would be possible to assess a definition of a species against those conventions. But all the same, that’s still only a convention of how biology goes about definition and classification, not scientific proof that those conventions are correct. And of course, scientific conventions are ultimately rooted within the society that scientists operate in. Why are swans also known as Cygnus, of the family Anatidae? It’s not because it is scientifically proven that Latin is the best way to describe birds. It’s because of the historic position of Latin within academia. This in turn can’t be entirely separated from social issues. Latin’s status as a language of learning derives from the role of religion in society. And throughout the last few hundred centuries, upper-class men have had far more access to Latin than working-class women. The definition swan = Cygnus is not a scientifically proven fact, it is a scientific convention, which arose within a particular social structure, and which is not neutral on issues of class, religion and gender.

Back to penises. There are scientific hypotheses which could be posited on the penis question which are falsifiable, and which do not contain circular logic. For example, the statement “Everyone with XY chromosomes has a penis” is clearly a testable, falsifiable hypothesis. So is “Everyone with testosterone levels between 8 and 30 nmol has a penis”. And “Everyone who self-identifies themselves with the social category man has a penis”. And “Everyone who is legally recognised under UK law as a man has a penis.” However, these hypotheses are not merely falsifiable – they have already been proven false. Remember, you only need one exception. One black swan proves that not all swans are white; one person with XY chromosomes and no penis proves that  XY chromosomes =/= penis. The scientific method does not allow you to  dismiss exceptions to your hypothesis on the grounds of being uncommon.

The problem here is with insisting upon a categoric statement about “All” or “Everyone”. Saying “Having XY chromosomes very strongly statistically correlates with having a penis” or “More than 98% of self-identified men have a penis” are falsifiable, scientific hypotheses which are very strongly supported by the evidence. But clearly they do NOT prove that penis = man.

The whole “science” argument gets even more unscientific when we get into practical implication. Biology has nothing to say about which bathroom trans people should use. I mean, we could derive a hypothesis and test it – “People with penises empty their bladder more efficiently if they are doing so behind a door showing a stick figure wearing trousers” – but I don’t think anyone would seriously expect anything other than a null result in a double-blind randomised controlled trial. Now, social science might well tell us a lot about social views about gender-segregated bathrooms, and why some people might feel upset or confused or threatened if their expectations about bathrooms are not met. But social science would explicitly recognise the role of social norms, and would not claim to have discovered an objective, eternal truth about where people should wee.

The problem is not that trans people are anti-science. The problem is that many of our critics don’t know what science is.

 

Tell your kids that being trans is okay.

There’s a lot in the media at the moment about trans kids. They report that more kids are getting referred to gender clinics, at a younger age. Schools are talking to young kids about being trans. Some kids socially transition, or are offered puberty blockers (blockers are the only intervention ever offered to trans kids under 16 in the UK). And we also have handwringing about sex and relationship education: should it be compulsory? At what age? Do schools really have to include LGBTQ+ issues? The media usually suggests that these issues are problematic, or concerning. They aren’t. Talking to kids about being LGBTQ+ is a good thing, and it should happen as early as possible.

I was born in 1985. Section 28 (a piece of UK legislation which prevented discussing homosexuality in schools) was passed in 1988, when I was three. It was repealed in 2003, after I had left school at the age of 18. For most of my school career, I didn’t even know that there was a controversial law against talking about LGBT issues in schools. Not talking about these things was just how things were.

I had liberal, progressive parents. I had some sex education in school from the age of nine or ten onwards. I grew up knowing where babies came from, and pretty much how they got there. But the mechanics of anal sex between men was explained to me in the school courtyard by Jonathan Pritchard, when we were both eleven. I suppose nowadays, he would probably just have shown me a porno on his smartphone. As a parent or a teacher, you don’t get to decide that kids won’t learn about these things. What you get to decide is whether it’s you that explains it, or whether kids learn about it through rumours and porn, as something whispered and naughty and dirty.

I suppose even at that age, issues around my gender were going on in the back of my head. But I became consciously aware of them when I started secondary school, at the age of twelve. This was before there was any discussion of trans kids in the media. It was before YouTube. Before Facebook. I had no access to words about someone like me. No way of finding out about it. The closest concept I had was ‘lesbian’, since – thanks to the fact that my knowledge about lesbians was also picked up through playground rumour – I was under the impression that lesbians wanted to be men. The only problem was that I was absolutely sure I fancied men.

Slowly, I gained some access to information about trans people. The Jerry Springer Show was sometimes shown on daytime TV during school holidays. But the portrayal of trans people on that was scarcely something I could easily relate to or take much positive from, and anyway, they always showed trans women. I was hazy about whether there was an opposite concept. I went to the school library, which had a couple of medical textbooks. Looked up ‘transsexual’ in the list of disorders. That gave me a paragraph of information – but still no definite word on whether it was something someone assigned female at birth could be.

At this time, I was having counselling for my crippling depression. I had no friends at school. I struggled to relate to anyone my age. But I didn’t tell anyone about the fact that these problems were related to my gender identity. I was still trying to work out if that was even possible. I did tell my counsellor I was unhappy about the way I looked. She told me I should smile more, because I had a nice smile. I decided counselling wasn’t going to help me.

I didn’t tell my parents at this stage either. Not because I thought they’d disown me – I always knew they’d love me no matter what. But the scanty information available to me made me think that being trans was a weird and very rare sexual disorder, and one that I still wasn’t entirely sure a “girl” could have. That’s something that it’s pretty hard to explain, perhaps especially to people you love, who you know are going to be worried and upset for you.

The turning point for me was the Channel 4 documentary, ‘Make me a Man’. It featured four trans men, and one of them was gay (I’ve met him since, and thanked him, and ironically probably neither of us would call ourselves gay men any more). It’s hard to describe that overwhelming sense of relief, to find that people like me existed. Moreover, he and the other trans men in the video were people I could relate to. They had lives. Jobs. Families. From there, I found an online group for trans men, and a magazine you could get through the post (run by another hero of mine, who was also in the documentary).

I’ve already pointed out that there are a lot of attacks on trans kids in the media. We’re told kids are too young. That they’re being swayed by parents, or social media, or doctors. That it’s confusing for young kids to hear about these things. That it’s all gone too far, that tomboys are getting marched off to the gender clinic for liking dinosaurs. That there’s a possibility they might regret it, and wouldn’t be better if we just didn’t talk about any of this stuff until they were adults?

Quite aside from the fact that most of what’s written in the media about trans kids is utter rubbish, I’ve lived the “don’t talk about it, don’t let kids know it’s possible” option. It wasn’t even all that long ago. And yes, I survived it. I never self-harmed, and I didn’t attempt suicide, which are often invoked as the big risks. But I spent five or six years of my adolescence lonely and frightened, with no words to describe who I was, and feeling utterly unable to confide in anyone. I had no idea what my future could look like, and whether it would ever be possible for me to live a happy life. I worked out who I was through fragments of bad quality, sensationalist, pathologised information. I didn’t have friends throughout my teenage years. I didn’t date till I was nineteen. I think those experiences have probably had a lasting impact upon me, and the way I relate to others.

A word that often gets used for LGBTQ+  young people is “confused”. It’s a way of patronising and dismissing their experiences and – bizarrely – it’s often used as an argument for not giving young people information. Often young people aren’t confused at all – but where they are, lack of good quality information is part of the problem, not the solution. You don’t confuse kids by telling them that different types of people exist, and are valued, and that it’s okay for them to grow up to be any type of person. Telling them that makes them feel reassured, and secure, and loved. Hiding information, or treating it as embarrassing or shameful, that’s what hurts kids.