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)

 

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.

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.

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.

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.

 

THT publish sexual health guides for trans people

The Terrence Higgins Trust (THT) has published two groundbreaking booklets on sexual health for trans people. Each one contains basic – yet valuable – information on trans bodies and health needs.

Each booklet tackles a whole bunch of common questions, such as: do post-op trans women still need prostate examinations? and: can trans guys get pregnant after going on T? There’s some trans specific information on HIV prevention, and also some more general health advice.

The language is broadly respectful and acknowledges the great range of trans identities. There isn’t as much of a binary division as might appear to be the case from the titles, with each booklet noting that the information contained within is also relevant to queer or non-binary individuals:

Words matter and in this introduction we are using the term ‘trans* women’ to indicate that this guide is not exclusive and is intended to speak in a  non-evaluative and non-judgemental way. It is aimed at people across the whole spectrum of trans* feminine-identified presentations and behaviours; by this we mean anyone on the gender variant spectrum who was labelled ‘male’ at birth and who identifies as female – including gender queer or otherwise non-binary people labelled ‘male’ at birth.

It’s really great that these booklets have been created – there’s a lot of confusion and misinformation about trans health needs, so this kind of intervention from a respected community organisation is really welcome.

The booklets are available online in PDF format:

Trans Women: Trans Health Matters

Transmen: Trans Health Matters

They’re also both available in physical form via mail order for the very reasonable price of 40p each (to cover postage costs).

A note on the “space” issue

I’ve noticed a lot of questions in social networking spaces about the fact that there’s a space in “trans women” but not in “transmen”. People wonder why there is discrepancy between the two guides, and wonder if a mistake has been made.

A friend of mine was involved in the production of the guides and offered some explanation. Apparently each one was produced by THT with a great deal of input from two steering groups, one for each guide. The “trans women” group was very insistent on having a space between “trans” and “women”, presumably for political reasons. The “transmen” group didn’t want a space.

There will inevitably be arguments over this, and complaints sent to THT. Some favour the space because “trans” stands separately from one’s gender: e.g. I am a “trans woman” because I am trans and a woman. My womanhood is not defined by my transhood. Others favour not having a space because they argue that we should be proud of being trans, and that it is inevitably part of our gender.

We’re never all going to agree on this. I use “trans women” very deliberately within my writing because I broadly subscribe to the first argument, but I recognise that there are plenty of people who have good personal reasons for preferring “transwomen”.

THT aren’t going to please everyone. As such, I think it’s a pity that people are complaining to them about this, particularly as the language came from trans steering groups on this occasion. We should be all means continue to have these conversations about language, because language is important, but there are far more important things to campaign about than a space on a sexual health booklet.

Ruth Pearce at TRED 2011

My talk at the Trans* Education and Determination teach-in.

Part 1:
– Introduction to the teach-in
– My decision to undertake social research
– A brief history of trans academia
– Gender pluralism

Part 2:
– Introduction to my research on experiences of primary health
– Existing research on trans health in the UK
– The role of the internet in trans community
– Methodology and research ethics

Transcription available below.

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