Health

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Family Planning workshop at Trans Health Matters (23 October)

In a couple of weeks I will be attending the Trans Health Matters conference, which is held at Resource for London on Tuesday 23 October.

You can read about and book tickets for Trans Health Matters 2018 here.

Co-hosted by holistic sexual health centres cliniQ (London) and Clinic T (Brighton), this event offers an insight into cutting edge practice and research, particularly with regards to sexual and mental health.

I will be speaking at a workshop entitled Trans Family Planning: Contraception, Fertility, Pregnancy and Childbirth, alongside Kate Nambiar, Michael Toze and Francis Ray White.

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Resource for London, Holloway Road

Trans people often find there is a lack of information available on their own fertility, or that they have been misinformed about the reproductive capacity of their own bodies. Similarly, trans people wishing to form families continue to face social, legal and medical barriers to parenthood. The workshop will comprise three short interventions, reflecting on current challenges and opportunities for trans reproductive autonomy, and an opportunity for attendees to reflect on how this might relate to their own work.

Kate Nambiar is a medical doctor and researcher who works at Clinic T. She will be discussing issues around contraception for trans people.

Michael Toze is a Research Fellow in the School of Health and Social Care at the University of Lincoln. He will talk about UK medical practice and law with regards to trans fertility, parenthood, and sterilisation procedures.

Francis Ray White is a Senior Lecturer in Sociology at the University of Westminster, and I am a Research Fellow in the School of Sociology and Social Policy at the University of Leeds. We will be discussing intial findings from the Trans Pregnancy Project.

 

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Forthcoming talk: The Transgender Moral Panic

I’ve been invited to give a guest lecture at the University of Warwick next week, on Thursday 8th February.

This will be part of the “Hidden Histories” alternative lecture series, organised by Warwick Students’ Union with support from a number of academic departments.

The talk will take place from 7pm in S0.21 (Social Science Building), and is open to all. I will speak for around an hour and there will be time for questions and discussions.

Here’s the blurb from the Facebook event page:

The Transgender Moral Panic: A Brief Social History

Over the last few months, there has been an enormous upsurge in media commentary that expresses concern about the role of trans people in public life. Gendered changing rooms, non-binary people, trans children and notions of self-definition have all come under intense scrutiny, with psychologist Meg-John Barker describing 2017 as “the year of the transgender moral panic”.

For the 2nd lecture in our Hidden Histories series, Ruth Pearce will explore the background to the recent wave of media interest, taking in radical feminist theories, scientific racism and proposed changes to UK law. She will show how the transgender moral panic has been shaped by deep-seated cultural anxieties around sex and gender, brought to the fore by the precarious successes of the trans liberation movement.

Ruth Pearce is a trans feminist scholar. Her research primarily examines discourses, practices and experiences of trans health. Her PhD was awarded by the University of Warwick in 2016. Her thesis looked at how trans health is differently understood within trans communities, activist groups and professional literatures, with a range of meanings and practices contested within and between these spaces.

Come along for what is set to be a fascinating event exploring a topic which is generally erased from mainstream curricula. Refreshments will be provided!

Hidden Histories banner

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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.

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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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CPATH: diversity, inclusion and decolonisation in trans health

I’m currently attending the CPATH (Canadian Professional Association for Transgender Health) conference in Vancouver. It’s a fascinating event which I’m hoping to write about more in the coming days. I’ll also be livetweeting whenever possible.

The first two days of the event are a “pre-conference” training session aimed largely at healthcare professionals, followed by a more standard three-day conference over the weekend. I’m fortunate enough to be attending the whole thing, funded through the ESRC-sponsored Trans Pregnancy project. I’m here to learn about how gender-affirming care is being practiced in North America, and to connect with people working in reproductive health and in supporting transition.

What’s really struck me so far is how much more intersectional and inclusive of actual trans people this event is when compared to professional events in Western Europe, particularly last year’s WPATH conference.

I was struck at the how the first pre-conference session I attended – billed as an introduction to gender-affirming care – had questions of diversity, power, and consent absolutely embedded into the presentations. Attendees were encouraged to reflect critically on their own privilege and social position, and that of key writers and trend-setters in the field. We discussed how social determinants of health (such as wealth, education, citizenship etc) play a huge role in determining inequalities within trans populations as well as between trans people and the cis majority.

These are pretty standard topics within sociology, but even so I felt the session was very well-presented and I learned a lot from the informative but open and deeply self-aware approach taken by the two presenters, Gwen Haworth and Jenn Matsui De Roo. It was immensely refreshing to see this kind of conversation take place in an event attended largely by healthcare providers. Too often, I feel clinical providers and researchers in the UK find themselves at loggerheads with trans patients. Often this may be because they haven’t thought to take a step back and consider the cultural context of their patient’s life and the systemic issues that this person might have encountered, let alone the deeply unequal power dynamic of the clinical encounter.

It was also really important for me as a non-clinician to take the time to listen to the stories and experiences of healthcare professionals, and learn more about the energy and care they put into the vital work that they do. I fear too many sociologists looking into issues around healthcare don’t actually attend medical conferences, and as such miss out from directly hearing about professional views and experiences.

I was also delighted to see that the space is pretty trans-friendly. People are generally sensitive around language, there are gender-neutral toilet blocks, pronoun stickers, and there’s also a “safer space” quiet room. At the WPATH conference last year, a number of trans attendees were attempting to make all of these things happen through forms of quiet guerilla disruption, for instance through putting holographic stickers on the toilets that switched between “male” and “female” images. At CPATH, trans language, trans culture and trans needs feel like part of the fabric of the event.

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My CPATH 2017 Conference name badge.
Under my name is a sticker reading “preferred pronoun: she/her”.

Finally, it’s good to see that there’s a serious decolonial agenda at CPATH. The conference booklet acknowledges that Vancouver is built on unceded lands; there are numerous sessions led by indigenous practitioners, researchers and activists; indigenous perspectives and issues are regularly discussed by non-indigenous attendees; and the introductory plenary for the conference proper on Friday will feature an opening speech and talks from indigenous activists and healthcare providers.

Of course, while all of this looks good for CPATH, the progressive appearance of the conference can hide the struggles that make real inclusion and recognition possible. I’ve heard that the opening plenary was the outcome of a struggle over indigenous representation after a number of papers were rejected. So, however good CPATH looks to me as a (white, British) outsider, it’s important to acknowledge the ongoing, silent (silenced) work that so often takes place behind the scenes to make this happen.

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Some reflections on Trans Health Matters 2017

Last week I joined over a hundred other attendees at the Trans Health Matters conference in London. The event (which takes place on a mostly annual basis) was organised by cliniQ, the city’s holistic trans sexual health clinic.

For impressions of the day, you can visit the Twitter hashtag for the event here.

When I attended the first cliniQ Trans Health Matters conference in 2013, I found it to be immensely valuable and informative, but left with a feeling of deep-seated distress that persisted pretty much ever since. For at that event, I gained a better understanding of the scale of the problems that plague trans healthcare provision.

These include widespread ignorance and often also active discrimination from practitioners, plus enormous (and growing) waiting lists for gender clinics. All things I already knew about, but swapping notes with other researchers and activists helped me realise just how common and severe the issues were. My impressions from the conference were also reflected in the initial findings from my PhD fieldwork, which I was undertaking at the time.

By contrast, I left this year’s event with a greater sense of optimism and hope.

That’s not to say that trans health isn’t still a disaster area. It really is. However, I feel that since 2013, there has been a real growth in community health initiatives, and also in cis practitioners’ active engagement in the issues. This was actively reflected in the conference programme, which focused largely on what is being done and what we can do to make things better.


What is “trans health”?

Interestingly, another positive aspect of the conference for me was that gender clinics and transition processes were barely discussed at Trans Health Matters 2017.

That isn’t to say that these aren’t important things to talk about – they absolutely are – but one of my observations over the last few years has been that discussions of “trans health” focus so overwhelmingly on gender identity services that an outside observer would be forgiven for thinking that transition is the only healthcare issue that really exists for trans people.

Which, of course, would be completely wrong. Trans people face extremely high rates of discrimination, harassment, internalised stigma, poverty, physical violence and domestic abuse. These challenges can be be linked to endemic mental health problems, suicidality, substance abuse, “risky” sexual practices and disability within trans populations. Moreover, there is the matter of everyday transphobia and cisgenderism in everyday encounters with healthcare practitioners.

So it was genuinely refreshing to attend a trans health conference that focused largely on sexual health (particularly HIV prevention, reflecting cliniQ’s role as a sexual health clinic), with some additional discussion of matters such as therapy, sex work, data collection, and intersectionality. These are all deeply important issues that really deserve the attention they received on the day.

Of course, the absence of discussion on gender identity services would be a real issue if these conversations weren’t already happening elsewhere. But they are. This year alone, I’ve attended two UK trans health conferences which centred issues of transition, and I know there have been plenty of other such events that I haven’t been able to go to. This is another cause for optimism: a great increase in activist, academic and professional events looking at trans health from a range of angles, reflecting the rapid growth and increasing visibility of our communities.


Towards inclusive care

While there are a growing number of trans-specific sexual health services available in UK cities, it was really good to see a lot of discussion around how trans people can be included in services (and the promotion of these services) more generally. A great example of this was a short film that’s been made about PrEP, from which extracts were shown at the conference.

I was also really heartened to see that Trans Health Matters was a somewhat more intersectional affair this year. Two of the four speakers on the keynote panel were trans women of colour. We got to hear a particularly inspiring speech from Mexican/US activist Alexandra Rodríguez, who explained how she created a pioneering HIV prevention service for trans Latinas in California after realising there were no existing services, and reflected on the importance of providing care and support for trans migrants.

I also attended an afternoon session on barriers to access and strategies for inclusion for some of the most vulnerable trans populations in the UK: black and minority ethnic trans people, non-British trans people, and economically marginalised trans people (these are, of course, groups that frequently intersect!)

Barriers to healthcare access for BAME and/or non-British trans people.
Photos taken with permission during breakout session.

One of the most important lessons from this session was the importance of reaching out for service providers, rather than expecting that the most marginalised people will feel that a service is necessarily for them. This is particularly the case if a service is normally primarily attended by and promoted to a relatively privileged demographic.

The work of reaching out may involve an element of discomfort for white and/or middle class providers; it can involve sensitively negotiating access to new spaces (e.g. club nights and community groups run by and for people of colour and/or working class people), learning from mistakes and being open to listen and learn with humility. But it is vital to ensure that community services are truly inclusive.


Reproductive health survey

The importance of the work of inclusion really came to the fore in a plenary session where we were shown initial findings from a trans reproductive health survey undertaken by Public Health England.

The survey is still open: you can take it here.

This is the first major stastical study looking at trans people’s reproductive health and experience of services in the UK. As the survey hasn’t yet closed and the data still requires some additional processing, we were asked not to report on specific figures. However, what I can say is that (unsurprisingly) there were generally high levels of dissatisfaction with existing service providers and sexual health education, reflecting an urgent need for improvement and trans inclusion.

The aspect of the survey that inspired the most discussion and debate amongst conference attendees, however, was the lack of diversity among existing survey respondents. A majority of respondents had received a university education, and an overwhelming number were white. This reflects a wider trend in trans community responses to online surveys: it is the most privileged individuals who are more likely have access to these.

I asked the speaker if there had been a paper version of the survey produced: these can help obtain a greater number of responses from individuals less likely to access an Internet survey, including trans people of colour, working class trans people, and older trans people. He noted that unfortunately the research team (which I believe consists just of himself and a single support worker) are underfunded and are trying to do their best with the resources they have. However, other audience members noted that there were still things that could have been done to increase the response rate from underrepresented groups. For instance, the research team could have reached out to UK Black Pride and asked for help with dissemination.

To me, this conversation really brings home the importance of active inclusion, which was the main thing I have been thinking about since attending Trans Health Matters. We can’t just assume that all members of our communities will be able to access services and research: rather, we need to make the effort to ensure that they are accessible. This can involve additional work, but the real challenge is overcoming the ignorance that can arise from our own privilege, even if we are ourselves marginalised in different ways.

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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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New job at the University of Leeds

I’m delighted to announce that I’ve just begun Research Fellowship in the School of Sociology and Social Policy at the University of Leeds. I’ll be working as part of an international team on the ESRC-sponsored projected Pregnant Men: An International Exploration of Trans Male Practices of Reproduction, which is being led by Sally Hines. This study will explore the sociological, health care and policy implications of trans men’s reproductive practices.

Some initial information on the scope and plans for this research are currently available on the project website. I’ll be writing more about the project there (and here!) as it progresses.

 

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Forthcoming books!

I’m delighted to announce that I have recently signed not one, but two book contracts. Both books are scheduled for publication in 2018.

My first monograph, provisionally entitled Understanding Trans Health, will be published with Policy Press. This book will draw upon extensive qualitative fieldwork in the UK to examine how trans identities, experiences and healthcare needs are differently understood within community, activist and professional contexts. It shall explore how these different understandings can lead to conflict and mistrust within medical settings, and propose means by which more collaborative relationships might be fostered in the future.

An edited collection, provisionally entitled The Emergence of Trans: Essays on Healthcare, Culture and the Politics of Everyday Life will be published with Routledge. Assembled in collaboration with Dr Iggi Moon and the late Professor Deborah Lynn Steinberg, this book builds on the success of our 2012-2014 seminar series Retheorising Gender and Sexuality: The Emergence of Trans. It will feature international contributions from a range of authors based in different academic disciplines.

Academic books are often unaffordable to lay readers, and unavailable outside of academic libraries. I was therefore really keen that both books would be available in paperback and ebook format as well as the traditional hardback. I’m really pleased to say that both publishers have agreed to print paperback editions in the first run, in recognition of how the book topics are relevant to ordinary people within trans communities.

I’ll be sharing more details on these books as the publication dates approach.

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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.