gender dysphoria

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Understanding Trans Health – book launch and mini conference

Understanding trans healthMy research monograph Understanding Trans Health will be published in just over a month! To celebrate, I will be holding an event on Tuesday 5th June at the University of Leeds, where I will be discussing the book and the findings it reports. I have also invited a number of people I admire enormously to talk about what they’re working on at the moment.

The event is FREE but places are limited, so please do register if you want to come!

Register a place here.

 
Talks will include:

‘The Gender Experts’: Clinical Discourse and Becoming Trans
Dr Ruth Pearce (University of Leeds)
https://ruthpearce.net/about/

What is Gender Dysphoria? – at least, in the Literature
Dr Zowie Davy (De Montfort University) and Dr Michael Toze (University of Lincoln)
https://zowiedavy.wordpress.com/about/

Body Parts in Trans Erotica
Dr Kat Gupta (University of Sussex)
http://mixosaurus.co.uk/about-me/

Accessing trans healthcare: what role for medical law?
Dr Chris Dietz (University of Leeds)
http://www.law.leeds.ac.uk/people/staff/dietz

Trans healthcare at Clinic T
Dr Kate Nambiar (Clinic T, Brighton)
https://www.stonewall.org.uk/people/dr-kate-nambiar

The event will be chaired by my colleague Professor Sally Hines.

There will also be plenty of time for questions and discussion. The event will be followed by a reception with free drinks and nibbles.

I hope to see you there!

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Understanding Trans Health – available to pre-order!

Last month I finished writing my first book, Understanding Trans Health: Discourse, Power and Possibility.

This book reports on the wide-ranging research project I undertook from 2010 to 2017, looking at trans discourses and experiences of healthcare services in the UK. It will be of interest to academics, students, health practitioners and activists working and studying in the field of trans health, and will be published by Policy Press in June 2018.

Understanding Trans Health is available for pre-order it for £21.59 (paperback) or £60.00 (hardback) from the Policy Press website. E-book and Kindle versions will also be available soon. If you work or study at a university or college, it would be really great if you could encourage your library to order in a copy!

If you live in the Americas, you can buy it through University of Chicago Press.

I’ll be writing more about the book as the release date approaches. In the meantime, feast your eyes upon the stunning cover commissioned by Policy Press: an image that reflects continuing inequalities of access, the pain of waiting, and patient experiences of anticipation.

Understanding trans health

In other book news, myself and Igi Moon are still working hard on our co-edited volume, The Emergence of Trans: Essays on Politics, Culture and Everyday Life. We’ve had some really fantastic chapter submissions and I can’t wait to share more about this too in the coming months.

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Tickbox diagnosis: can you measure trans feeling?

Nottingham Centre for Transgender Health are currently developing a “Gender Dissonance Severity Scale”.

Gender Dissonance Severity Scale

I can see why some practitioner-researchers might think this is a good idea. The clinical protocols at GICs such as Nottingham currently require trans patients to demonstrate that they can cope with living a “trans” life in order to access “irreversible” treatments such as hormone therapy. At present, this is demonstrated through patients’ adherance to the “Real Life Test”.

“[I]t is the view of many clinicians working in the field – including some of whom are transgender themselves – that living as their experienced gender allows individuals to test their gender identity in the real world before the initiation of potentially irreversible treatments […] transgender people who have poor social and interpersonal skills may be more likely to encounter difficulties when socially transitioning.. […] In order for an individual to be accepted for treatment, they need to socially transition first, which includes not only living as their experienced gender but also changing their name and most legal documents.

(Arcelus et al., 2017)

Wouldn’t it make life easier for clinicians though, if they could also ascertain whether or not their patients feel sufficiently trans?

Enter the Gender Dissonance Severity Scale, which aims to explore “how people feel about their gender, body and quality of life”.


What is being measured?

There are a number of problems with the concept of the Gender Dissonance Severity Scale. The most fundamental is the question of how far you can adequately and consistently measure feeling.

This is a particularly a problem for nebulous concepts such as “gender dysphoria” and “gender dissonance”. That these phenomena exist is not in doubt – many trans and non-binary people across the world can attest to the reality of dysphoric feelings in relation to our bodies and/or gender roles. But these experiences vary greatly from individual to individual, mediated by collective factors such as social context and culture as well as individual differences.

Moreover, dysphoria varies within people as well as between people. A person might feel less dysphoric one day, and more on dysphoric another – depending on factors such as where they’re going, who they’re seeing, how their bodies look, how their bodies feel. A person might feel more dysphoric, for instance, if their facial hair looks particularly thick, if they’re having their period, or if they’re about to attend an appointment at a clinic that assesses their transness. Or they might feel less dysphoric, for instance, if their hair looks great today, if their gender identity feels more aligned with their body, or if they’re about to attend an appointment at a clinic that might grant them access to hormones.

So any attempt to measure gender dysphoria or dissonance may be thwarted by the ever-shifting nature of the thing that is supposed to be measured. One person’s dysphoria can be another person’s euphoria. And a measurement that is “accurate” for a patient on one day might be “inaccurate” on the next.


Who is doing the measuring?

In recruiting participants to assist them in developing the scale, researchers based at Nottingham GIC have argued that the scale will help measure the “effectiveness” of treatment: i.e. how interventions such as hormone therapy and surgeries improve patients’ quality of life. This is no doubt an admirable goal, and will expand upon existing evidence that trans people benefit from having transitioned.

However, there is another proposed use for the scale, as described in the following excerpt from a request for research participants.

From the findings, we hope to develop a new outcome measure that could be used by GP’s to make referrals to transgender health services.

This is a very troubling proposal. It suggests that the Gender Dissonance Severity Scale could perhaps be used as a form of screening mechanism before trans patients are even referred to a gender clinic. Patients could perhaps be refused treatment altogether if they don’t appear to be “dissonant enough” according to the blunt measure of the scale.

Pre-prepared questionnaires are already being used to assess patient distress for those needing to access NHS mental health services through IAPT. Patients are often invited to answer questions on the phone, with access to services depending on how well they meet the questionnaire criteria.

It seems therefore that the Gender Dissonance Severity Scale could potentially be used as an additional layer of gatekeeping, reducing referrals to gender clinics (which are currently seeing a record number of patients) at the expense of those in need of care who happen not to meet the specific criteria of the test.


Subverting measurement

Of course, trans patients have a long-standing approach to dealing with barriers to care: we share information amongst ourselves, learning the “right answers” to give in clinical contexts. This is great for the individual trans person who wants to jump through the necessary hoops in order to access care, but an awful situation for clinical research, where supposedly firm findings might be built upon the decidedly shaky foundation of trans people making up the answers that they think clinicians want to hear.


Towards collaboration?

There is already a lot of mistrust between many trans patients and gender identity specialists. The development of flawed measures such as the Gender Dissonance Severity Scale may only compound this.

While Nottingham GIC does have at least one trans clinician involved in developing their research programme, they have yet to engage more widely with the trans research community. Moreover, few opportunities exist for clinicians to learn about their patients’ desires and interests outside of a context where they have a great deal of power over said patients’ healthcare. But these are issues that can be addressed: through better community outreach, communication, and collaboration, as well as reflexivity and humility on the part of researchers.

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WPATH 2016: the activist fringe

I’m currently in Amsterdam for the World Professional Association for Transgender Health (WPATH) biennial symposium. It’ll be the largest such conference that has ever been run, with 800 participants from across the globe. This will hopefully be the first of several posts exploring my experences at the conference (no promises, though!) – and I’m also planning to occasionally livetweet.

WPATH is an international body best known for publishing the Standards of Care, which offer guidance for practitioners supporting patients seeking to transition. The organisation has undergone a great deal of change over the years, reflecting wider shifts in understanding around trans people and our experiences. At present, the organisation’s wide scope incorporates a considerable range of views on how transition should and could be managed.

I’m here partly to present a poster detailing some of my research findings around patient experiences of waiting in the UK. However, as a sociologist with an interest in the evolution and negotiation of discourse and activism around trans health, I’ve been interested to see that at least two fringe conferences have been organised in Amsterdam to coincide with WPATH. I also thought it would be beneficial to share what’s going on with a wider audience – so, here goes!


GATE pre-conference

Global Action for Trans* Equality (GATE) is a loosely-organised international trans rights organisation: a genuinely diverse multinational network of activists with strong representation from the Global South. One of their key priorities has been to campaign for the depathologisation of trans, although members have also been involved in activism around other issues, such as access to care.

Over the past two days GATE held their own conference in Amsterdam to discuss trans health. The event both stood alone as an independent conference, and provided activists with an opportunity to discuss WPATH. I wasn’t able to attend in person, but have heard that a broad consensus was reached on a couple of issues related to the classification of trans in the World Health Organisation’s International Classification of Diseases (ICD).

The current version of the document – ICD-10, published back in 1992 – classifies ‘Gender Identity Disorder’ and ‘Gender Identity Disorder of Childhood’ as mental health issues. These diagnoses are widely used in gender clinics in countries such as the UK (note: these differ from the diagnosis of ‘Gender Dysphoria’ present in the American Psychiatric Association’s DSM). Recent statements from the World Health Organisation indicate that the long-awaited ICD-11 will replace diagnoses of ‘Gender Identity Disorder’ with ‘Gender Incongruence’, and move these to the sexual health section of the document.

Whilst GATE’s long-term goal is depathologisation, at present they have decided to focus upon pushing for this move from classifying trans diagnoses as mental health issues to regarding them as sexual health issues, as a compromise that should ensure continued funding for transition from insurance companies and public health organisations. In addition, they are arguing against the existence of the category ‘Gender Identity Disorder of Childhood’, on the grounds that this is an unnecessary medicalisation of gender diversity in young children, whilst the ‘adult’ category is sufficient to guide medical interventions for adolescents. This perspective feeds into a wider discussion around the category that is also recognised in the WPATH programme, with time set aside for a formal debate.

GATE activists will be attending WPATH to argue these points, and also to advocate more widely for trans-affirming approaches to treatment.


FREE PATHH

FREE PATHH is an event that will take place this Saturday (18th), concurrently with the first day of the WPATH symposium proper (a handful of formal pre-conferences are taking place on Friday). Hosted by Dutch trans activists, it is a free event that anyone can attend. FREE PATHH organisers argue that the high fees for the WPATH event mean that ordinary Dutch trans people are unable to attend this event held in their own country to learn more about their own health. As such, there is little interaction between WPATH and local Dutch trans communities.

The few transgender people who can afford to be present at this important symposium, are exceptions. They can go, because they have to be present for work or because they have enough personal financial means. (FREE PATHH)

As one of those few trans people who can attend the WPATH symposium (in my case, because I was lucky enough to gain a grant in order to do so), I feel this is a really important point. WPATH undoubtedly exists to share information amongst professionals in a formal setting; at the same time, the issues at hand require input from the very people who are directly impacted. With trans people disproportionately likely to be on low incomes, even early career professionals might find themselves effectively frozen out.

The FREE PATHH programme includes talks and workshops in Dutch and English on a range of issues related to trans health, and will be filmed for later disseminaton. At the end of the day, a panel with individuals who have attended both WPATH and FREE PATHH will summarise both events. This should be a valuable opportunity to share insights from both international and Dutch work on trans health, from professional and community perspectives.

You can read the FREE PATHH programme 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.