Gender Identity Services Clinical Reference Group

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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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Scottish protocol for Gender Services (largely) adopted in England

It appears that much of the widely-lauded NHS Scotland Gender Reassignment Protocol will be adopted in England from 1st June 2013.

This will be a temporary measure, taken as the result of “inconclusive feedback through the consultation exercise on specifications and policies” for the English Protocol. Last year, the draft English Protocol was criticised by many trans people for failing to live up to the progressive standard set by the Scottish Protocol. I wrote about this here.

This information comes from a letter written to stakeholders in the Gender Identity Services Clinical Reference Group.


What will this mean for English patients in the short term?

As the Scottish Transgender Alliance noted in July 2012, the Scottish Protocol “is not perfect but it is an important step forward for trans people in Scotland“. It incorporates a number of clauses that ensure relatively swift access to services (including hormone therapy and surgeries) for those already “in the system” and on the books of a Gender Identity Clinic (GIC).

Key features of the temporary Protocol for England would therefore include:

  • 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
  • only one gender specialist assessment is needed for referral for 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.

(Bullet points from the Scottish Transgender Alliance. Emphasis mine.)

All of these provisions should (in theory!) entail a more rapid, efficient access to services for patients at many English GICs.


Exceptions

Unfortunately, several particularly progressive aspects of the Scottish Protocol will not be adopted in England. According to the letter sent out to stakeholders, these include:

  • Referral to Gender Identity Clinics (access)
  • Facial hair removal
  • Breast augmentation

“Discussion on these areas” is being “deferred” because “it is recognised these need further discussion and also because England’s health service is structured differently and therefore a slightly different approach will be necessary”

The first point (“referral to Gender Identity Clinics”) is somewhat ambiguous, but appears to mean that provisions made in Scotland for self-referral and referral by GP to GICs will not be implemented in England, at least in the short term. Most English GICs currently only accept referrals from mental health specialist such as psychiatrists, so this looks set to continue.

The letter further states that:

“[…] decisions relating to direct access, facial hair removal and breast augmentation being deferred by all NHS England Area Teams until after the June meeting when further work can be undertaken to reach the interim NHS England Policy and Specification for adoption. Where an individual has already had agreement for any of these procedures then these would go ahead, the deferment relates to decisions not yet made.”

This would appear to imply that no new referrals will be provided for facial hair removal and breast augmentation on the NHS in England, at least for the time being. In most parts of the country this is the norm, but in some areas this will effectively be a step backward.


What about young people?

A final significant aspect of the Scottish Protocol is that it provided for the provision of better services young trans people:

  • 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.

(Bullet points from the Scottish Transgender Alliance. Emphasis mine.)

It’s not clear whether or not this part of the Protocol will come into play in England, but I suspect that this counts as “access to Gender Identity Clinics”, meaning that nothing will change – in the short term at least.


Analysis

I would suggest that this development is, on the whole, a positive one for the majority of trans patients in England. It will hopefully ensure a number of improvements in access to treatment, particularly for individuals seeking hormone therapy and individuals on the transmasculine spectrum seeking chest surgery (including for individuals seeking chest surgery prior to hormone therapy, or chest surgery without any accompanying hormone therapy). It should encourage GICs to acknowledge trans diversity and provide treatment more adequately tailored to individual circumstance.

Moreover, the implementation of this Protocol means that some of the more regressive elements of the draft English Protocol (such as the requirement for GPs to undertake a “physical examination” ) will hopefully not see the light of day.

Of course, there will continue to be resistance from some of the more conservative GICs. However, the existence of the temporary protocol should empower patients who wish to make the case for better services from these bodies.

It is important to note once again that this is a temporary measure, and that the new English Protocol that is eventually implemented may not necessarily reflect the Scottish Protocol to such a great extent. A meeting will be held in June for members of the Clinical Reference Group to discuss what might happen next. We can only hope that the outcome will be a positive one for trans patients.

However, this move sets an important precedent. A set of relatively progressive new rules are being put in place, meaning that it should be harder for GICs to justify inadequate service provision. This is a new benchmark which health campaigners can use as a starting point for future campaigns.

Finally, the “inconclusive feedback” from “consultation” suggests that pressure from trans health advocates is actually having an effect, particularly as many GICs will no doubt have been pushing for a continuation of the status quo. Credit is due to all those individuals and organisations that responded to the consultation on the draft English protocol a year ago, and members of the Clinical Reference Group who are pushing for positive change.