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)

 

Provisional English Protocol for Gender Reassignment, 2013-2014

NHS England Interim Gender Protocol CPAG Approved 12-7-13 (released 15th July 2013)

Key changes to current treatment, and other points of interest:

  • GPs may refer patients directly to Gender Identity Clinics (GICs). It is not necessary for GPs to first refer patients to another specialist service (e.g. a psychiatrist). This is important because until now most GICs in England have required patients to be referred by a mental health specialist.
  • Facial hair removal will be available on the NHS. The Interim Protocol describes facial hair removal as “essential treatment for MtF patients” (p.10). It is funded by NHS England, rather than CCGs (Clinical Commissioning Groups: these replace Primary Care Trusts). Patients are (in theory) guaranteed nine facial hair removal treatments: one test patch, and nine sessions. Funding can be sought for further treatments but is not guaranteed.
  • Hair removal prior to genital surgery will be available on the NHS. Funding for this service is provided through NHS England in a similar manner to facial hair removal for MtF patients.
  • Adult treatment is available to trans people from the age of 17. The Gender Identity Development Service at the Tavistock and Portman NHS Foundation Trust will continue to provide services in London, Exeter and Leeds for trans people under the age of 18, according to its own guidelines. This means that trans people aged 17 may choose between “adult” and “young people’s” services.
  • Breast augementation, facial feminisation surgery, lipoplasty and sperm/egg storage may be funded. Breast augementation will only be funded if “there is a clear failure of breast growth in response to adequate hormone treatment”. All of these procedures are funded by CCGs rather than centrally through NHS England, which means that GICs must apply to CCGs for funding. They will be funded (or not) according to CCG policy, which may vary.
  • Patients require only one assessment from a GIC team member in order to be referred for psychotherapy or speech therapy. This is important as it has the potential to speed up access to speech therapy and additional psychotherapeutic support.
  • Patients must recieve assessment from two GIC team members in order to recieve hormone therapy. This is important because until now, some GICs in England have required assessment from more than two team members. Conversely, it reinforces the position of those clinicians who argue that two opinions is necessary before treatment can begin.
  • 12-24 months of “real life experience” is required prior to the provision of genital reassignment surgery. This is important because it means that patients can (in theory) access genital surgery within a year, in line with WPATH guidance. However, it is likely that clinics will continue to demand at least 2 years of “real life experience” prior to surgery.
  • A wait of at least 6 months is necessary prior to the provision of chest surgery for FtM patients. The guidance on this is somewhat vague, which should allow flexibility but may be exploited by more conservative GICs. The Interim Protocol states that patients who qualify for chest surgeries “may have engaged in a social role transition” (emphasis mine), and that a referral will “typically” be offered “around 9-12 months, but no less than 6 months, after the patient’s first consultation”.
  • Surgical providers are supposed to inform primary care staff (i.e. GPs and nurses) of procedural details and post-operative needs. We’ll see how this one pans out in practice!

Overall, this Protocol should result in a broad improvement in transition-related services for trans people living in England and Wales. If all goes to plan, more services will be available to more people, who will have to do less waiting for them! I offer a more in-depth discussion of these changes – and comparisons to the Scottish Protocol – here (please note that there have been changes since I wrote that post – e.g. GPs should now be able to directly refer to GICs, and facial hair removal should be provided on the NHS in England and Wales, just like Scotland) .

However, GICs may yet resist some of the measures in this document. The protocol was meant to come into force for all trans patients access transition-related services from 1 October 2013, so now is the time to hold medical providers to account.

Scotland hands unprecedented power to trans patients

The big news from Scotland today is all about gay marriage. But last week, the Scottish government quietly unveiled an equally important move.

The new NHS Scotland Gender Reassignment Protocol will have a massive impact upon those who seek a medical transition. It dramatically cuts the time required for “real life experience” prior to surgery, confirms the necessity of contested interventions such as hair removal for trans women and chest surgery for trans men, enables teenagers to begin transition from 16, and – crucially – reinforces the right of trans people to refer themselves to Gender Clinics.

Some background
Last year saw the publication of the latest edition of the World Professional Association for Transgender Health (WPATH) Standards of Care (SOC). This seventh edition of the SOC saw a number of important changes that acknowledged critiques from trans communities as well as clinicians, leading to a focus upon gender variant identities and experiences in terms of diversity, rather than pathology.

Treatment is individualized. What helps one person alleviate gender dysphoria might be very different from what helps another person. This process may or may not involve a change in gender expression or body modifications. Medical treatment options include, for example, feminization or masculinization of the body through hormone therapy and/or surgery, which are effective in alleviating gender dysphoria and are medically necessary for many people. Gender identities and expressions are diverse, and hormones and surgery are just two of many options available to assist people with achieving comfort with self and identity. (p.5)

Thus, transsexual, transgender and gender non-conforming individuals are not inherently disordered. Rather, the distress of gender dysphoria, when present, is the concern that might be diagnosable and for which various treatments are available. (p.6)

This emphasis upon individual difference and patient agency differentiates this seventh edition of the SOC from previous editions published by both WPATH and its predecessor, the Harry Benjamin International Gender Dysphoria Association. The change follows decades of lobbying from trans activists, academics and progressive professionals. We’ve gone from a world where post-doctoral researchers who happened to be trans – such as Virginia Prince – could publish research only with the approval of cis clinicians, to a world in which trans professionals like Stephen Whittle are setting the agenda.

WPATH are still far from perfect: see, for instance, the fact that they seem to think they are qualified to speak for intersex people. But, broadly speaking, the latest SOC is a definite step in the right direction.

Competing guidance
When WPATH speaks, medical providers don’t necessarily listen. Trans people are often diagnosed according to criteria set out guidance such as the American Psychological Association’s Diagnostical Statistical Manual of Mental Disorders (DSM), which treats us as mentally ill. Gender clinics in the UK often follow previous editions of the SOC, which encourage a patronising, controlling approach in practitioners.

For instance, a recent Freedom of Information request revealed that Leeds GIC “…follows the stages laid down within The Harry Benjamin International Standards of Care (this differs from the WPATH guidance), as we believe that hormone treatment is best undertaken after real life experience has begun…“: i.e. the clinic is relying upon outdated guidance, under which patients are forced to go “full-time” for some time before they are prescribed hormones. This will clearly cause difficulties for individuals who have trouble passing as cis without hormone therapy, and may leave them open to harassment or violence.

Even less regressive GICs in the UK currently do not comply with with the most recent edition of the SOC. This can be seen in the imposition of binary ideals of gender, the absence of treatment protocols for most trans adolescents, and a “real life test” of at least two years before requests for surgery are considered (as opposed to the 12 months recommended in the new SOC).

Of course, any revision of national medical practice takes time, particularly within a public body such as the NHS. Changes to the NHS care pathway in England and Wales are currently under discussion. Moreover, hormone regimes for teenagers are currently being trialled in London. I don’t know enough about the situation in Northern Ireland to write about what’s happening there.

It is against this backdrop that the new Scottish protocol has been introduced.

NHS Scotland Gender Reassignment Protocol: the headlines
The new Scottish guidance has been shaped by trans activists working with key figures within Scottish equality bodies and NHS Scotland. It won’t have an immediate impact upon the availability of services, with implementation being a long, complicated process. However, it is historic in that the published care pathway clearly empowers trans patients in a number of ways.

The Scottish Transgender Alliance highlight a number of important points from the protocol (emphasis mine):

  • people can self-refer to NHS Gender Identity Clinics (GICs) in Scotland.
  • that psychotherapy/counselling, support and information should be made available to people seeking gender reassignment and their families where needed.
  • that two gender specialist assessments and 12-months experience living in accordance with desired gender role are needed for referral for NHS funded genital surgeries and that arrangements for delivering agreed procedures are under review with the objective of ensuring that an effective, equitable and sustainable service is implemented.
  • only one gender specialist assessment is needed for referral for hair removal, speech therapy, hormone treatment and FtM chest reconstruction surgery and that these can take place in an individualised patient-centred order either prior to starting the 12-month experience or concurrently to the 12-month experience.
  • that, in addition to access to genital surgeries, access to hair removal is regarded as essential to provide for trans women and access to FtM chest reconstruction is regarded as essential to provide for trans men.
  • that surgeries which are not exclusive to gender reassignment, such as breast augmentation and facial surgeries, continue to need to be accessed via the Adult Exceptional Aesthetic Referral Protocol but there will be a more transparent and equitable panel process for making funding decisions in such cases.
  • that young people aged 16 are entitled to be assessed and treated in the same manner as adults in terms of access to hormones and surgeries.
  • that children and young people under age 16 are entitled to child and adolescent specialist assessment and treatment as per the relevant section of the WPATH Standards of Care. NOTE: at the time the protocol was created the staffing of a specialist Under 16s service at the Sandyford GIC in Glasgow was uncertain but it now looks likely that there will be a sustainable Under 16s service provided at the Sandyford GIC in Glasgow and this part of the protocol will soon be updated.

As the Scottish Transgender Alliance note, this protocol isn’t perfect, but it does represent an important step forward. If the protocol is properly implemented, trans people will no longer be forced to spend months (or even years) fighting for a referral, before waiting even longer for treatment as a GIC patient. Trans people will be able to access vital interventions such as hair removal on the NHS, and should be able to access proper counselling and therapy services.

A personal perspective
If a protocol such as this had been in place in England when I came out as a teenager, I could have gained a referral (or even referred myself!) to a GIC at the age of 16. Even with the massive waiting list for the GIC, I might have been on hormones at 17, and had surgery at 18. I wouldn’t have had to undergo anything like so many painful laser hair removal sessions, and those that I did undergo would have been paid for by the NHS.

Instead, my first GIC appointment was at the age of 19. I didn’t go on hormones until I was 20 (causing all kinds of havoc with my university grades during my final year as I underwent a second puberty) and had surgery shortly before my 22nd birthday. I paid for several laser hair removal sessions privately. One day I hope to afford a few more, as I never finished that particular treatment.

And I’m one of the lucky ones.

The future
I can’t really understand why this isn’t already all over the LGBT press, let alone the trans blogosphere. It’s a deeply important development.

The progressive nature of the new Scottish protocol provides a positive precedent for the rest of the UK. We can only hope that NHS protocols for England and Wales and for Northern Ireland follow suit. In the meanwhile, trans activists throughout the UK could do well to pay close attention to the situation in Scotland. The success of organisations such as the Scottish Transgender Alliance provide important lessons for the rest of us.