trans health

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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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Forthcoming talk: Hysterical Bodies

event posterWednesday 28 February
7pm – 9pm
Birmingham LGBT Centre
Free entry and food provided.

Bread and Roses for All, and Hormones Too!
A panel discussion with Aquila Edwards and Luke Dukinfield, facilitated by Robin Lynch and hosted by Birmingham Women’s Strike Assembly.

I will be giving a short talk about intersections between trans health and women’s health, focusing on how our bodies have historically been pathologised and disciplined in medical settings.

There will then be a facilitated discussion. I’m honoured to be sharing the panel with some fantastic speakers so it’s sure to be a really interesting event.

Register to attend for free on Eventbrite.

Facebook event page.

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Of memory and mourning: the hidden origins of an academic editorial

Experiences of co-authorship often remain strangely silent, oddly invisible.

In academic publishing, co-authorship is common; and yet, how often do we think about whose voice we are reading, and how a collaborative narrative emerged? How often do we teach students to write together rather than apart? What visions do we have of co-authorship?

I don’t think we talk enough about these experiences and issues.

This week, an editorial I co-authored for the forthcoming Sexualities special issue ‘Trans Genealogies’ was published online. For me, this short piece carries a great deal of emotional weight. It was written under pretty unique circumstances, with my fellow author and former PhD supervisor Deborah Lynn Steinberg close to death. In this sense, it was hardly a standard experience of collaborative writing.

Screenshot of the editorial article "Introduction: The Emergence of Trans". The three authors' names are listed underneath the title.

However, in discussing my experiences of this article and others, I hope to offer some insight into an oft-hidden process of co-authorship, while encouraging readers to maybe reflect on their own experiences of collaboration.

~

Some co-authored articles owe their existence primarily to one of their authors. We might hope that this is the lead author, although this is not always the case.

Last year, I contributed to an article on research ethics for the journal Transgender Health. This was an exciting collaboration and a very interesting experience, with an international team of authors working remotely through the Internet to pool our ideas and expertise. It was an honour and a privilege to work with Jaimie Veale, Asa Radix, Danielle Castro, Amrita Sarkar and Kai Cheng Thom, and I learned a great deal from their considerable expertise in doing so. However, at the core of the writing project was lead author Noah Adams. While myself and the other authors did put a great deal of work into the article, Noah initiated the collaboration, produced the original article draft, oversaw the integration of our respective contributions into the piece, and acted as the primary point of contact for our communications with the Transgender Health editorial team. It was only right that he was credited as lead author.

On other occasions, I have seen how this kind of collaboration might be an exploitative one. During my time as a PhD student, I witnessed other postgraduates put this kind of effort into supposedly joint projects with their supervisors, only for the said supervisors to be credited as lead authors (or, on a depressing number of occasions, as the sole author). This was particularly disappointing in the context of social science subjects, where the presumption tends to be that the lead author did the majority of the work.

I had a very different experience of collaboration with Kirsty Lohman. Our article on de/constructive trans DIY music scenes will also be included in the ‘Trans Genealogies’ special issue. We wrote together, in the same room; sometimes taking turns to tackle individual paragraphs, other times constructing sentences together with one of us sat at the keyboard and the two of us almost competing to find the next word. It was a real joint effort in which we both put an equal amount of energy into the work. I am named as lead author only because one of us had to be; at the time the article was accepted, we agreed that it was more beneficial to my career at that point in time than it was to Kirsty’s.

Deborah related a similar history of writing collaborations with a close colleague and friend. She vividly described how she would furiously lay ideas down onto a Word document while her colleague paced the room impatiently, bursting with ideas of her own, before the two would swap places. Whole afternoons, whole days could be spent in fruitful (if sometimes fiery) joint authorship.

~

There was no such option for the ‘Trans Genealogies’ editorial. The special issue was originally Deborah’s idea, a follow-up to our 2012-14 seminar series Retheorising Gender and Sexuality: The Emergence of ‘Trans’. She pitched the series to the editors of Sexualities, wrote the Call For Papers, and provided extensive advice and support to authors who made contact prior to the January 2016 deadline. At the time I was happy for her to take the lead, as I had finished the majority of the data collection for my PhD and was focusing on writing up my thesis.

The deadline came and went, but myself and fellow co-editor Igi Moon didn’t hear from Deborah for weeks, then months. As her cancer advanced, she was increasingly ill and unable to continue leading the editorial work for the journal. Eventually, Igi and I took over the editorial process, overseeing peer review and seeking to ensure that Deborah’s vision could be fulfilled.

By January 2017 we had identified the seven research articles that would comprise the special issue, most of which were provisionally accepted or near completion. Unfortunately, it was also apparent that Deborah would not live to see the publication of the special issue. She was first house-bound, and then bed-bound. We visited her as often as we could, sharing stories from our lives and updating her on the progress of the issue.

I had originally envisaged that Deborah would take the lead on writing the editorial, just as she originally took the lead on editing the issue more generally. By the time we had a firm idea of the issue’s contents, however, it was painfully apparent that this would be impossible.

As it become increasingly clear that Deborah had just weeks (if not days) to live, I became obsessed with writing the editorial while she was still alive. I wanted it to be a true collective work, but how to do this when my collaborator could barely speak, let alone write – when this woman who had dedicated herself utterly to her work was finally unable to enjoy the intellectual pursuits that had been such a driving force in her life?

In the end, I decided to revisit Deborah’s previous writings and reflections, the ones that had inspired and galvanised the editorial project in the first place. I poured over her notes from the Emergence of Trans series, the agendas and essays she wrote for individual events, her introductory talk for the ‘Trans in Popular Culture’ seminar.

I met with Igi to discuss the contents of the special issue: the contributions of the individual articles, and their thematic place in the wider context of the issue and of the wider literatures to which they speak. We listed key ideas and phrases we want to incorporate into the editorial.

I re-immersed myself in the literatures of transgender studies, thinking about recent trends and emerging concerns as well as longstanding debates and histories. I also thought about Sara Ahmed’s comments on the politics of citation, and committed to a centring of insights from trans scholars and/or scholars of colour.

And then I sat down. And I wrote.

~

After finishing the editorial, I visited Deborah one last time. I was excited to tell her that it was completed, and to explain how inspired I had been by working with her ideas, working with her words.

But by this point she was no longer with us. Her body fought on for just a few more days while she restlessly slept.

~

In retrospect, it’s a somewhat flawed piece. The editorial offers a very brief, broad summary of the context in which specifically ‘trans’ discourses have emerged and been contested. It was, in a sense, constrained through the need to address a set of themes originally outlined by Deborah, now a simultaneously absent and ever-present co-author.

When I re-read the editorial, I do what perhaps every author does. I notice every awkward turn of phrase, every moment of repetition, every missing references (perhaps most prominent of these is Stryker, Currah and Moore’s piece ‘Trans-, Trans, or Transgender?‘, which I was unable to access through my institution at the time). Following Deborah’s death, neither Igi nor I had any appetite for further revisions. We sent it off to Sexualities, and thought little more about it.

Yet, perhaps the brief, intense process by which the editorial finally came into being is one of its greatest strengths. I wrote it in a fit of passion, pulling together our collective ideas with a sense of deep love and purpose. In this sense, my commitment to the field, and to the wider promise of trans liberation, was one with my commitment to my fellow authors, my collaborators.

And I feel it is a better piece of writing for that.

~

You can read the special issue editorial ‘Introduction: The Emergence of “Trans”‘ in the following locations:

Sexualities [with institutional access]

My website [free pre-proof version]


I will be writing a follow-up piece about the broader contents of the special issue next week.

 

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Ethical guidance on studying trans health, for researchers and ethics boards

I recently co-authored an article on research ethics for the journal Transgender Health. It’s based on an extensive review of literature on the topic, and written by an international team of scholars and health practitioners with extensive experience of conducting research in this field.

Transgender Health is an open access journal, so the article is freely available for anyone to read and share.

I’ve copied the abstract out below: please click on the title for full access.


Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research

The purpose of this review is to create a set of provisional criteria for Institutional Review Boards (IRBs) to refer to when assessing the ethical orientation of transgender health research proposals. We began by searching for literature on this topic using databases and the reference lists of key articles, resulting in a preliminary set of criteria. We then collaborated to develop the following nine guidelines:

(1) Whenever possible, research should be grounded, from inception to dissemination, in a meaningful collaboration with community stakeholders;

(2) language and framing of transgender health research should be non-stigmatizing;

(3) research should be disseminated back to the community;

(4) the diversity of the transgender and gender diverse (TGGD) community should be accurately reflected and sensitively reflected;

(5) informed consent must be meaningful, without coercion or undue influence;

(6) the protection of participant confidentiality should be paramount;

(7) alternative consent procedures should be considered for TGGD minors;

(8) research should align with current professional standards that refute conversion, reorientation, or reparative therapy; and

(9) IRBs should guard against the temptation to avoid, limit, or delay research on this subject.

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Trans health in Canada: reflections and resources from CPATH

At the end of October I attended the CPATH 2017 (Canadian Professional Association for Transgender Health) conference in Vancouver. It was a fascinating event from which I learned a great deal. I’m keen to share some of my thoughts and experiences with others, as I feel there is a great deal that trans health researchers, practitioners and activists can learn from the progress that’s been made in Canada, as well as the limitations of that progress.

DNF13PxV4AEw4K-.jpg large

Poster: “In Our Dream B.C….”, by Drawing Change. Based on Trans Care BC consultation with gender creative, trans, and two-spirit youth and their families..

In this post, I reflect briefly on my impressions of the conference, and link to Twitter threads I wrote during various sessions. You can also read my initial thoughts on the conference here.


CPATH took a broadly holistic approach to trans health

Over 300 people took part in the three-day CPATH 2017 conference and two-day pre-conference. In attendance were GPs, nurses, endocrinologists, psychologists, psychiatrists, therapists and counsellors, social workers, healthcare administrators, peer and parent support group facilitators, academic researchers, lawyers, politicians, and various trans campaigners.

CPATH 2017 treated “health” as a social phenomenon as well as a purely embodied matter, and this made for some very productive conversations. For example, numerous sessions explored how trans healthcare might best be provided in the context of primary health. Gender identity services are frequently provided by GPs with support from external specialists, a model of care that is currently under consideration for England. In some Canadian Provinces, organisations such as Trans Care BC help to connect providers in primary care to relevant specialists, and support trans people in obtaining interventions such as hormone therapy and surgeries.

This approach enables continuity of care in a local context, with family doctors enabled to provide trans-specific care for their patients alongside everyday services. It reduces barriers to access such as waiting times and the necessity of long-distance travel. It also enables GPs to help their trans patients access a wider range of specialist services: for instance, trans people with mental health issues might benefit from a referral to a peer support group as well as or instead of formal therapy (depending on patient desire and need). Many practitioners provide services on the basis of informed consent, rather than using mental health assessments as gatekeeping measures. It was heartening to see generalist and specialist healthcare professionals, social workers, trans activists and others engaged in open discussions about how best to manage care through this kind of system.

I was also particularly struck (and moved) by a session entitled Trans and Two Spirit Youth Speak Back! The 40 or so adults in attendance – mostly healthcare professionals or researchers of one stripe or another – were asked not to speak at all during this workshop. We were instead invited to listen to the stories and experiences of trans and two-spirit young people, who sat dotted around the room and answered pre-prepared questions delivered by a youth group facilitator. This session structurally prioritised the voices of young trans people who are so often silenced, and also offered an opportunity for us to hear how the healthcare needs and challenges faced by these individuals were shaped by their cultural heritage, family life, schools and peer groups.


CPATH took intersectional trans voices seriously

Trans and Two Spirit Youth Speak Back! was just one example of how trans voices were frequently centred at CPATH 2017. As an attendee from the UK, I was very impressed by this! Our trans healthcare conferences, seminars and workshops tend to be organised by and for community groups, researchers or healthcare providers, with relatively little overlap between attendees at these events. Very few practitioners are (openly) trans, meaning that trans people tend to talk to one another at community and research events, but are heard less often at healthcare conferences for doctors, nurses and mental health specialists. Moreover, the speaker line-ups at all these events tend to overwhelmingly prioritise the most privileged individuals, such as white people and men. The only possible exception is cliniQ’s Trans Health Matters conference, and that event too feels like it’s taking the first steps towards something better.

During the opening plenary of the CPATH conference proper, we were informed that around one third of speakers at the event were trans, and around a tenth were Indigenous (i.e. of First Nations heritage). I’m not sure how many people of colour were represented at the event more generally, but the all-white panels which are a norm at UK events seemed few and far between.

Importantly, the trans women, trans men, non-binary and two-spirit platformed as speakers and workshop facilitators were usually also professionals. We weren’t simply present at CPATH to represent a “patient perspective”: rather, we were the experts. This reflects the hard work of individuals in pursuing a career, and the collective work of CPATH in supporting trans professionals; it also reflects the actions of local providers in various parts of Canada who have made an active effort to employ trans people, or secure funding for partnerships with trans-led organisations.

In my previous post I noted that the opening plenary of the conference proper centred Indigenous voices. This included a formal welcome from Musqueam Elder Jewel Thomas, and talks by trans and two-spirit Indigenous educators from different parts of North America. I was happy to see that the plenary session on the second day of the conference continued to centre the voices of individuals who tend to be marginalised within even trans spaces. Two-spirit physician Dr James Makokis and Latina trans activist Betty Iglesias – who discussed issues faced by trans sex workers and migrants – were platformed alongside an Member of Parliament from Canada’s ruling Liberal Party, resulting in a thoughtful and challenging debate.


CPATH (and the rest of us) still have a lot of work still to do

I left CPATH with a very positive impression, but Canada is by no means the promised land for trans health. Professionals and patient representatives alike frequently discussed the challenges they faced in providing gender-affirming services. Transphobia and cisgenderism are still very much prevalent within healthcare provision and legal frameworks, particularly outside of urban areas: there is therefore a great need for better education among trainees and further reform of laws and guidelines. Limited funding and different approaches across the country’s Provinces and Territories also mean that not everyone has the same access to treatment, and waiting lists persist for publicly-funded care. These are challenges that exist across the world, and may benefit from greater international collaboration and strategy-sharing.

At the end of the first day of the conference proper, there was a reception specifically for trans people attending the conference. I later reflected on the experience of attending this reception in conversation with a genderqueer colleague; both of us felt ourselves relaxing enormously upon entering the trans-only space. For all the positives of CPATH, it was a huge relief to step away from cisgenderist expectations and microaggressions that quietly persisted throughout the conference proper. These included a range of unspoken ideas about how we should dress, act, and talk “professionally”, limitations on our ability to name transphobia within healthcare settings without fearing repercussions, and the occasional terrible intervention from self-righteous cis professionals.

As ever, facing down these challenges is hardest for the most marginalised trans people, including (for instance) disabled individuals, sex workers, migrants, and people of colour. I was aware that while CPATH 2017 took a broadly intersectional approach, instances of ableism, racism, sexism and so on persisted: and this could take the form of unexamined prejudices on the part of more privileged trans people too. Moreover, white people were still heavily overrepresented among conference attendees; a phenomenon that was particularly noticeable at an event held in a city as diverse as Vancouver.

What I’m taking from this is a reminder that equality work is never “done”; rather, it is something that we should strive to always “do”. We should aim constant improvement in our relations to one another rather than assuming that solidarity and equality are things that we can simply achieve. It is in this spirit that I’ve attempted to use my own privilege as an academic to bring back lessons from Canada for the UK and beyond.

So, I’ll end this post with a serious of links to Twitter threads from the event. I livetweeted extensively from CPATH 2017, sharing summaries of the numerous talks and workshops I attended. This is by no means a comprehensive summary of any of the sessions I was at, let alone the wider conference (as numerous parallel sessions took place simultaneously). However, I hope the ideas and approaches will be as useful and interesting to you as they are to me.


Pre-conference (training) Twitter threads

Day 1:

Introduction to Gender-Affirming Practice

Pre-puberty/Puberty: Addressing On-coming Puberty

 

Day 2:

Adolescence: Moving Forward With Gender-affirming Care for Youth

Cross Country Health Clinic Practice Panel: Models of Care and Clinical Practices

 

Conference Twitter threads

Day 1:

Plenary: Centering Indigeneity and Decolonizing Gender

Interpersonal Communication Needs of Transgender People

Ethical Guidelines for Research Involving Trans People: Launch of a New Resource

Investigating the Medicalization of Trans Identity

Primary Care Approaches to Caring for Trans Youth

 

Day 2:

Plenary: Fostering Safety and Inclusion in Service Provision, Systems and Sectors

Non-binary Inclusion in Systems of Care

Trans Data Collection and Privacy

Legal, Ethical, Clinical Challenges: Youth Consent to Gender Affirming Medical Care

 

Day 3:

Pregnancy and Birth

Plenary: Supporting Older Trans People

 

 

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NHS Gender Identity Services consultation: it’s really important, and you can take part

 

For the past few months, NHS England have been running a consultation on Gender Identity Services for Adults (i.e. services typically provided through a Gender Identity Clinic, or GIC).

There’s still just over a week to respond: the consultation is open until Monday 16th October, and you can respond here.

Unfortunately, NHS England have not made the consultation process particularly clear. The documents are quite long and the whole thing can appear unnecessarily complex. So in this blog post, I explain what the consultation is about, why it matters, and how you can participate. I also outline some key issues within the consultation.

 

What is this all about?

NHS England have prepared two draft service specification documents: one for surgical services (including genital and chest surgeries), and one for non-surgical services (basically everything else, including assessment and diagnosis, hormones, counselling, voice therapy etc.

These draft documents are currently under consultation, with stakeholders (i.e. trans people, medical professionals and other interested parties) invited to comment on them.

 

Who is affected?

Basically everyone who is accessing (or intends to access) a GIC or surgery through the NHS in England, and every medical professional and NHS worker involved in delivering these services. This includes all patients based at England GICs. It will also indirectly affect patients in Wales who access treatment through Charing Cross, and patients across the whole of the UK who access surgical services in England. In time, Wales should get its own GIC, but this isn’t due to happen yet for some time.

 

What will this consultation do?

Following the consultation, the service specification documents will be used to commission services. That means: a GIC will need to meet the requirements of the service specification in order for NHS England to commission them.

If the GIC does not meet the requirements of the service specification, they may lose their right to provide services through the NHS.

So, in the future the service specification documents can (in theory) be used to hold GICs to account. If certain inappropriate or discriminatory practices at a GIC are seen to contravene the service specification, then they might effectively have their funding pulled.

There are a lot of clauses in the new service specification documents that would effectively ban a range of potentially harmful practices that currently exist in some GICs. For example, some GICs require that patients undergo unnecessary genital examinations prior to hormone therapy, while others insist that family members attend assessment meetings in order to corroborate patients’ accounts of gender dysphoria. Both of these practices are explicitly prohibited in the draft guidelines.

At the same time, there are some really questionable elements that remain in the service specification, such as the requirement for GIC patients to be registered with a GP. This can discriminate against people of no fixed abode, such as asylum seekers, homeless people, Travellers and many sex workers.

In responding to the consultation, you get a say on what the new guidelines should look like – the bits you think are good, and the bits you think need re-thinking.

 

What will this consultation not do?

An issue I have with this consultation is that it doesn’t address the fundamental power imbalance that currently exists between GIC gatekeepers and trans patients.

The consultation also doesn’t directly address the commissioning of new services; instead, it focuses on existing services. So, interventions that aren’t already currently funded as standard by NHS England (such as breast augmentation and facial feminisation surgeries) are not included.

These are things you may wish to comment on in your response (I have done so). However, you should bear in mind that this consultation is primarily about improving existing practice, rather than undertaking fundamental reform. So, by responding you should definitely be able to help improve people’s lives in the short term, but we also need to continue being proactive with trans health activism in order to bring about bigger changes in the long term.


But wait, haven’t we been here before?

Yes. NHS England previously consulted on draft commissioning documents in 2013 and 2015. On both occasions, a considerable number of trans stakeholders indicated that the documents weren’t fit for purpose: they were too strict, too binary, and pathologised trans people too much. Each time, NHS England went back to the drawing board.

I studied these documents for my PhD. One of the really interesting things about them, is that each time they’re revised and come back to consultation, they’re more progressive, reflecting interventions from trans health advocates. For example, non-binary and genderqueer identities and experiences were barely mentioned in the 2013 document. There was some level of inclusion in 2015, and then the current non-surgical specification makes a real effort to avoid binary language altogether.

From the lessons I’ve learned in my work, I also think that this time around, the service specification will be implemented. This is a bigger and more wide-ranging consultation from before, and at events NHS England representatives have given a strong indication that they’re very keen to re-commission services during 2017-18. So, this is our major chance to bring about change in some areas.

 

Okay, so how do I take part?

There are three documents to read. There are the two service specification documents:

Surgical specification.

Non-surgical specification.

There is also a third document: the consultation guide. This one’s a bit of a mess.

The consultation guide provides information on the background to the consultation (pages 5-8), and includes some questions for respondents to consider (pages 9-12).

Four options are outlines for how hormone prescriptions might be managed in the future (pages 13-20).

Finally, there’s an equality impact assessment, which summarises the impact (both positive and negative) that NHS England thinks the document will have upon particular marginalised groups, including older and younger trans people, disabled trans people, trans people of different genders and sexualities, married trans people, trans people of colour, and trans people of faith (pages 21-32).

Once you’ve read the documents, you can email your thoughts about what you think is good and what needs changing to NHS England: england.scengagement@nhs.net.

You can also take part in an online survey: https://www.engage.england.nhs.uk/survey/gender-identity-services-for-adults/consultation/.

The survey refers to the three main consultation documents at various points, so have these handy when you take it.

Altogether, reading the documents and responding to the survey took me about four hours. If that feels like a really long time, bear in mind that you don’t have to respond to everything in the documents in order to take part in the consultation. You can choose to respond just to particular key issues (see below for two examples), or do it a bit at a time.

In particular, it’s worth bearing in mind that the online survey allows you to save your response and come back to it later.


Key issues

Since this is such a big consultation, there’s a lot to talk about. I’m trying to keep this post relatively concise, so I can’t cover it all (although I do link to some further reading at the end if you want look into this further).

So, here’s a couple of things that I feel are particularly worth focusing on.

  1. Prescribing arrangementsUnder the current system, patients are referred by their GP to a GIC. At the GIC they are assessed for gender dysphoria. Upon receiving a diagnosis, the GIC instructs the patient’s GP to prescribe hormones, if this is something the patient wants.The consultation proposes that this approach potentially be changed. It offers four options for different systems, which are outlined in the consultation guide, on pages 13-20. Option A is the status quo, as described above.

    Options B and C offer variations on this: in Option B, the GIC provides the first prescription and then the GP provides prescriptions thereafter. This would mean that patients can pick up their first prescription pretty much immediately. Option C requires prescriptions to be provided by the GIC for the first year. This would mean that patients would approach the GIC for a repeat prescription during this time.

    Option D proposes a major change: the appointment of a local specialist by each Clinical Commissioning Group, which means (in theory) there is a GP specialising in trans hormones in each local area. It is not entirely clear whether or not these GPs would continue to rely on GICs for assessments, nor if other GPs will be able to prescribe hormones still as they do at present.

    Option D is the most interesting option here in part because it offers the most radical change. There are some serious potential benefits and drawbacks. For example, this approach might lead to a decentralisation of care, whereby patients might access hormones (and potentially other services) from a specialist GP working in collaboration with an endocrinologist. On the other hand, it might lead to less GPs providing basic services as they do at present, which might be a problem particularly in rural areas.

    Ultimately, none of these options are perfect. Personally, I feel some combination of A and D could be beneficial: but I recommend reading through the options yourself and having a think.

  2. Referral to GICs
    At present, English patients are generally referred to GICs by their GP, although they can also be referred by a local mental health provider. This contrasts with Wales, where at present patients are referred first to a local mental health provider who then refers on to the GIC, and Scotland, where some providers accept self-referral.The draft service specification for non-surgical services currently insists that all patients be registered with a GP, who provides the referral to a GIC. The rationale for this is that – under the existing system – patients require a co-operative GP in order to provide hormone prescriptions.However, not all NHS patients are registered with a GP. This is acknowledged in the equality impact assessment included in the consultation guide, which states that people of no fixed abode might not have access to gender identity services as a result. Moreover, trans patients sometimes have to search for a long time for a GP who will provide them with a referral.

    I propose that NHS England follow the existing NHS Scotland guidelines in allowing for self-referral. This means that patients have the opportunity to find a supportive GP while they are on a waiting list and/or undergoing assessment. Moreover, it would be beneficial if some arrangement can be made to support patients who are still without a GP following diagnosis (perhaps some variant on Option C for hormone prescriptions).

 

Further reading

The above two issues are by no means the only pressing matters in the consultation: just two that I feel are particularly important. You may feel otherwise!

For more information, thoughts, reflections and ideas for responding to the consultation, here is a range of further reading.

My response to the consultation (Twitter thread)

My summary of a consultation event in Leeds (Twitter thread)

Response from UK Trans Info

Response from the National LGB&T Partnership

Thoughts from Michael Toze (general)

Response from Michael Toze (hysterectomies)

Response from Edinburgh Action for Trans Health (Trans Health Manifesto)

 

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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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LGBT+ History Month Talks

I’ll be discussing my research at two public events this month.

16473316_204490776693175_8365624470453169582_nThursday 16th February
Condition or Movement? A Century of Trans Identities
University of Warwick

6:30pm, OC0.02, Oculus Building.

I will be giving a talk about the role of medical discourse and social movements in the emergence of ‘trans’ identities during the 20th and 21st Centuries.

 

16602955_10210179504518384_1245278100974843955_nTuesday 21st February
Trans experiences of health care panel
Pembroke College, University of Cambridge

6pm, Nihon Room.

I will be taking part in an LGBT+ History Month panel on the British health care system, alongside Morgan Potts, Amy Clark, Ray Filar and Tschan Andrews. Our respective talks will be followed by a Q&A session.

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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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Video: (Mis)understanding Transgender Health

Regular readers (hi!) will have noticed that I’ve not been posting on this blog much at all over the past year or so. Between part-time jobs and my PhD thesis, I’ve been pretty busy – however, I’m nearing the end of thesis writing, so hopefully that might change in the near future. We’ll see!

One thing I’m hoping to do after I hand in the thesis is to talk about my findings in the public domain as much as possible. So, here’s an initial step towards that – a video from the re:publica TEN conference on Internet and society, where I was invited to talk about trans health.

The talk was aimed at a very general audience, many of whom weren’t familiar with trans issues, so there’s an extensive introduction to some of the basics as well as a discussion of one small area of findings and some related studies.