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)

 

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.

 

Report: “Certifying Equality? A critical reflection on Athena SWAN”

Certifying EqualityEarlier this year I organised an event on Athena SWAN and equality accreditation for the Centre for the Study of Women and Gender at the University of Warwick. It was a really great opportunity for attendees from a range of HE institutions to reflect on the benefits and limitations of equality accreditation schemes, and share thoughts on our experiences of Athena SWAN.

I’ve now completed a report on the event, which I hope will be helpful for galvanising discussions in universities that participate in the Athena SWAN charter mark.

You can download the report here.

It includes reflections and insights from the Certifying Equality event, including:

  • Background to Athena SWAN
  • Athena SWAN as a catalyst for change
  • The contradictions of equality accreditation
  • Proposals for change
  • Presentation summaries

If you find this document helpful and interesting, please do help distribute it by sharing with your colleagues!

 

 

Concerts in Coventry: 24th June, 29th July

I’m involved in organising two exciting events at Coventry’s Tin Music and Arts over the coming month.

This coming Saturday sees the return of feminist club night Revolt, complete with bands, DJs, spoken word, zines and our Feminist Library. I’ll be opening the night with my band Dispute Settlement Mechanism.

For tickets and more info, click here.

Revolt #10
On Saturday 29th July we’ll be treated to a performance by CN Lester, who will be performing songs from their new album Come Home and reading from their great new book Trans Like Me.

For tickets and more info, click here.

CN Lester.png
Entry will also be available on the door on a donations basis (suggested donation £5, but no-one will be turned away for lack of funds).

 

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.

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.

Of conduct and controversy: trans health activism at EPATH

Here in the UK, health is a key priority for many trans activists. While progress is sometimes painfully slow, numerous debates, protests and consultations have informed gradual change within a range of healthcare settings, and a growing number of health professionals are prepared to actively support trans peoples’ access to affirmative care. However, discussion of trans healthcare in the UK has remained focused largely on the specifics of the UK context, even as important events that influence gender identity services in particular are increasingly taking place on the world stage.

In this post, I look at recent activism at “PATH” (Professional Association for Transgender Health) conferences in Amsterdam and Los Angeles, as background to unfolding events at this week’s EPATH conference in Belgrade.


WPATH Symposium 2016

Last year I wrote briefly about international activism taking place at the World Professional Association for Transgender Health (WPATH) symposium in Amsterdam, the Netherlands. This included two unofficial fringe events: a Global Action for Trans* Equality (GATE) pre-conference, organised primarily by trans activists from the Global South, and the FreePATHH event, run by Dutch trans people living locally who couldn’t afford to attend the expensive WPATH event.

I myself experienced the WPATH symposium as exhausting, inspiring and frustrating. A myriad of positions on trans health care represented amongst the researchers, practitioners and activists present at the event, which is as it should be at any good conference. However, amongst the thought-provoking and challenging interventions, and numerous examples of progressive approaches and good practice, I also found myself overwhelmed by microaggressions from cis attendees, and thrown by the cognitive dissonance of experiences such as emerging from a session on trans-affirmative care only to find myself attempting to retain a professional demeanour whilst walking past individuas such as Kenneth Zucker. Zucker has been accused of subjecting gender questioning children to reparative therapy, and will also be known to UK readers for his participation in a recent BBC documentary (“Transgender Kids: Who Knows Best?”), to which Trans Media Watch responded with an extensively researched letter of complaint.

It was in this context that numerous interventions – both formal and informal – were organised by trans attendees at WPATH. GATE held sessions on depathologisation for trans and intersex people. FreePATHH created a range of notes with “free advice for better transgender care”, which were distributed in a social area for conference attendees to read. Someone gender-neutralised the (binary gendered) toilets with holographic signs. I also heard informally about South African trans women confronting a racist presenter on a panel.

ClTZLM9VEAASI-e.jpg large

In this way, the WPATH symposium felt like a sometimes discouraging, sometimes productive site for real debate and contestation, both professional and political. My impression was that the the interventions that took place there would probably have a gradual impact on how trans health is understand and practised in the years of come, particularly following the creation of TPATH, a group for trans people working in trans health.  What I didn’t realise was the extent to which events would accelerate in the coming months.


USPATH Conference 2017

In February the first USPATH (United States Professional Association for Transgender Health) conference took place in Los Angeles, USA. At this event, tensions over the place of pathologising forms of care in general – and Kenneth Zucker’s ideas and practices in particular – came to a head.

In a Twitter thread written during the event, health researcher Zoé Samudzi describes how a number of academics and health practitioners, led by trans women of colour, spoke out against the inclusion of Zucker on the conference programme. One session (the first of two at which Zucker was due to speak) was briefly interrupted by an impromptu speech and later quietly picketed, after which hotel security threatened to call the police on a number of attendees.

The next day, community representatives – again led by trans women of colour – met with USPATH and WPATH organisers to read a list of demands. In the wake of this intervention, Zucker’s second talk was cancelled, and a formal apology for the initial heavy-handed response to protesters was posted to the WPATH website. This post, which also promised action to better involve trans communities in general and trans people of colour in particular in the work of WPATH, was removed from the website just two weeks later.


EPATH Conference 2017

Today (6th April) the EPATH (European Professional Association for Transgender Health) conference will begin in Belgrade, Serbia. This event is likely to be a somewhat more conservative affair than the USPATH conference due to disciplinary differences between trans health practitioners in the US and Europe: however, like the WPATH symposium, the conference programme incorporates a wide range of perspectives.

There will once again be an associated FreePATHH event on Saturday 8th/Sunday 9th, which is being organised by Serbian trans activists in collaboration with some of the Dutch individuals behind last year’s FreePATHH. It will include free talks and panels on trans and intersex issues in the former Yugoslav region, as well as arts performances and a football match. At the EPATH conference itself, TPATH will have a presence, seeking to bring together trans people working in the field.

One point of potential contention at EPATH is a code of conduct which has been drawn up for the event. In many ways, this document reflects standard conference etiquette, through (for instance) condemning individual harassment of attendees. However, there are also a number of points that appear to have been written specifically in response to recent events.

We expect all conference participants to be respectful in person and online towards other delegates, speakers, organisers, staff and volunteers.

We are committed to providing a harassment-free conference and training experience for everyone, regardless of gender, gender identity and expression, sexual orientation, disability, physical appearance, body size, race, or religion.  Harassment of participants, speakers, staff or volunteers in any form will not be tolerated.

 Harassment includes offensive verbal comments, and other forms of using disrespectful and pathologising language inconsistent with human rights standards, deliberate intimidation, stalking, following, harassing, photography or recording without explicit consent, sustained disruption of talks or other events, inappropriate physical contact, and unwelcome sexual attention. Conference participants asked to stop any harassing behaviour are expected to comply immediately.

Upon reading the code of conduct, I was immediately reminded of accounts written by trans woman who have accused controversial practitioners of inappropriately photographing them at past events. This is particularly interesting given that he’s been confirmed to speak at the conference. The reference to “pathologising language” also appears to be a nod to some of the practices at previous conferences that have distressed trans attendees.

However, the question remains about what counts as “offensive verbal comments”, “sustained disruption of talks or events”, or “recording without consent”. If a similarly filmed disruptive event occurs at EPATH as took place at USPATH, it could conceivably be framed as “harassing behaviour” within the context of the of the code of conduct, leading to protesters being ejected from the event. This is concerning because the participation of controversial clinicians such as Zucker is typically defended on the grounds of enabling “free speech” within the context of the conference: however, on these grounds, we might expect that conference attendees wishing to peaceably protest or strongly critique bad science might also be afforded freedom of speech.

I won’t be attending EPATH myself this year; like the FreePATH attendees, I simply can’t afford the expensive conference fees. However, I will be following events with great interest, and encourage other non-attendees with a personal or professional interest in trans health and/or trans activism to do the same.