England

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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.

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(Guest Post) Draft Protocol Review

A review of England’s draft protocol for gender dysphoria services by CL. You can read a copy of the draft protocol here, respond to the survey here, and read my own analysis here.

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Following the lead of an information note published by the department of health, the draft protocol confirms and compounds the problems of treating gender dysphoria on the NHS. It would at least mostly standardise treatment protocols across England, burdening everyone with the same problems: We’re all in this together, right?

The Gender Services Clinical Reference Group is aiming to implement standardised service provision by April 2013 and has given interested groups until September 30 to respond. GIRES has responded, as has Terrence Higgins Trust’s Trans* Women’s Sexual Health and Wellbeing Group, whose submission I contributed to. Our issues with the Department of Health’s Information Note are seen again here, and I’d like to focus on those in particular: the framing, tailoring and requirements of treatment.

Framing Gender Services Treatment

A problem in the protocol that has carried over from the information note and current practice, is the framing of gender dysphoria treatment as the property of psychiatric specialists. Even in updating the condition being treated to ‘gender dysphoria’ from Gender Identity Disorder, which explicitly frames the problem as one with our gender identities rather than our physical characteristics and the dysphoria resulting from them, the protocol places gender dysphoric people under the care of “a mental health professional (eg. psychiatrist or psychologist) who specialises in transsexualism/gender dysphoria and has general clinical competence in diagnosis and treatment of mental or emotional disorders.”

The logic behind this in the current protocol is not forthcoming. Perhaps it is because there’s a likelihood of additional mental health issues due to the stress of dysphoria. Realistically, it’s because dysphoric people have always been treated as mentally ill, and tradition has kept us under the exclusive care of psychiatrists.

Assessment is a large part of the GICs role: confirming that we have Gender Dysphoria and are not merely deluded about our gender identities. Gender Dysphoria strong enough to necessitate transition is rare, certainly, and doctors are warned to be warey of ‘Zebra diagnoses’ (as House of God, the inspiration for ‘Scrubs’ described them). That is, when you hear hooves, think horse, not zebra. That’s sensible advice, but if you’re in southern African plains, thinking Zebra first might not be so unreasonable. In this case, if someone is distressed by their assigned gender and sexed body, identifies strongly as another gender and feels relief when living as that gender, a diagnosis of ‘trans*’ is the most likely answer. Trusting this principle would rob the GICs of hours of questions about your childhood hobbies and masturbatory habits, but it would free up a lot of unnecessary appointments.

Scotland has already moved away from the complete ownership of Gender Services by mental health teams, allowing patients to self refer to a GIC. This saves an appointment with a GP, one with a community mental health team and allows direct access. For those who need a diagnosis, removing these two stages of waiting, where ignorance or prejudice can delay or waylay a patient, can get them that diagnosis quicker. Given the burden on admin staff and funding, a time, appointment and money saving move like that is far better than the protocol’s recommendations.

Tailoring Service

The introduction to the protocol claims that it is ‘informed by the 7th edition of the WPATH Standards of Care’ – sadly, it isn’t based on them. Some key recommendations from the 7th SOC were: HRT could be prescribed without RLE and one assessment, Lower Surgery required only one year of RLE (rather, one year of HRT). None of those recommendations are followed here, so the role of the 7th SOC’s ‘informing’ is not apparent. As Ruth points out, this is essentially just the existing Charing Cross treatment.

The protocol makes references to giving patients time to consider other options, other approaches, time to reflect and, of course, the RLE’s time to consolidate. There can be great value in this and many people seek the GIC to explore and understand their gender identity. Chances to really assess their history, feelings and situation can be very valuable. A friend in this situation said that her diagnosis brought her great relief and confirmation of her feelings.

For others though, this is unnecessary. Many others will have thought, reflected and considered extensively, almost exclusively at times, before seeking a GIC: they know who they are and what they need. For them, the numerous stages to access a GIC, double assessments and arbitrary RLE periods merely delay them, take up clinic time and appointments and cause additonal frustration as they wait for their treatment.

Clinics shouldn’t be forcing surgery on everyone at the first appointment, but the slowest common denominator approach is hardly ideal either, and unnecessary, arbitrary waiting is positively detrimental in many cases.

Requirements

Despite the 7th SOC’s ‘informing’ of the protocol (perhaps they were low on coasters?), RLE remains a key feature of the proposed gender services. The protocol is unclear about RLE requirements for HRT, but indicates that full HRT can be prescribed ‘Dependent on whether an individual has socially transitioned in the sense of living full time’ or is likely to ‘do so immanently’. Top surgery needs a year of RLE, lower surgery needs 2 years.

The problems with this are numerous:

  • It’s arbitrary. There are medical reasons for a year of HRT for lower surgery, but not for living full time in role.
  • Requirements of being employed have nothing to do with a stable, well founded gender identity.
  • Whilst individuals vary greatly, some people have considerably more difficulty being read as their gender prior to HRT, and AMAB people are more likely to recieve certain forms of harassment if people read them incorrectly. Forcing people into public facing roles to get the treatment they need puts them at direct risk of violence, harassment and discrimination.
  • What ‘real life’ is being experienced? From my own and others’ experience, I know that living full time as a woman pre HRT is vastly different to being full-time after a year on HRT. The near daily abuse and marginalisation, with incumbent stress, is not the real life I’m  experiencing now, but was a feature of living as a woman who was visibly trans*. The RLE required is entirely unrepresentative.
  • For all the regional variation and obfustication, the 2 years of RLE for surgery is well known, and patients work to it. The lengthy requirement can prompt patients to ‘start the clock’ running on RLE long before they are ready. Who knows how much suffering has come from that, or from knowing that no help will come before an arbitrary deadline?
  • Patients remain on the GIC’s book during this period: the aforementioned zebras get called in for appointments to needlessly check that they’re still serious, then sent away to wait another 5 months. This takes up appointments that could help patients who are less certain of their needs.

Overall, this protocol standardises existing Charing Cross treatment, which is already behind the times in not adjusting to WPATH’s SOC 7, and seems particularly inadequate when compared to the updated Scottish protocol. Most worryingly, its requirements standardise the appointments that add to the waiting times, administrative burden (which currently means Charing Cross are taking 2-3 months to send appointment summaries) and sense of disempowerment that service users experience. With multiple screenings, assessment and ‘time for reflection’, it is particularly unsuited to those who have a clear understanding of their identity and wish to proceed, and who have thought over their option extensively prior to seeking a referral. If this protocol is to last for any significant time, it will hold service users to standards that are already inadequate – If the next update will last, we need to fight for a protocol that truly moves treatment forward, so make sure to give your views in the protocol’s survey.

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Business as usual? A look at the draft English protocol for gender dysphoria

The main achievement of England’s new draft protocol for transition-related services is not to offer progress, but to codify certain elements of existing practice.

In this sense, it somewhat resembles Scotland’s new protocol, which was published a couple of weeks ago.

The Scottish protocol appears to have been based largely upon the services offered by Sandyford, the nation’s largest gender identity clinic. The English protocol seems rooted in current practice at Charing Cross, which plays a similar role within England and Wales. The differences between the documents hinge largely on the differences between the progressive policies instituted at Sandyford, and the more conservative attitude of Charing Cross.

In this article I’m going to examine some aspects of the draft English protocol that have really struck me, before discussing political elements of difference between the English and Scottish protocols. I also briefly talk about the survey that is being distributed alongside the draft guidance.

The Good

Language – The language used within the draft English protocol largely acknowledges the complexity and diversity of trans experience. It encourages a respect for patient identities in terms of correct name, pronoun usage etc. (regardless of legal status). There’s even an explicit acknowledgement of non-binary identities, although this is somewhat undermined by binary assumptions elsewhere in the document, and a focus upon transitions that follow the typical “female to male” or “male to female” routes.

Referrals – The document provides some important clarifications for referral to a gender clinic: that individuals do not have to have lived in their preferred gender role prior to referral, that neuro-diversity and mental/physical health issues should not be a barrier to referral, and that psychotherapy is not a necessary precursor to referral. However, these points are not made as strongly as they could be, leaving some room for (mis)interpretation.

Treatment process – The document states that two appointments should be sufficient for a diagnosis of gender dysphoria (to be diagnosed according to the ICD-10 criteria, as opposed to DSM-IV). The prescription of hormones should (if appropriate and desired) follow this diagnosis, and surgery should follow within approximately two years. This might all sound very familiar to Charing Cross patients, but may work to reign in some of the more eccentric practices of smaller gender clinics such as Nottingham.

Overall – It will be beneficial to have this protocol at hand to bring local referral practices and the actions of smaller GICs in line with national standards.

The Bad

Referrals – Referrals must come from a GP or specialist (psychiatrist or psychologist), with clinics able to insist upon referral from a specialist. This means that long-winded battles for referral look set to continue as normal. In contrast, the new Scottish system appears allows individuals or GPs to refer to any clinic.

Treatment process – The protocol states that it is informed by the most recent edition of the WPATH Standards of Care. However, it seems (again, contrary to the Scottish protocol) to ignore large parts of the Standards of Care in favour of current Charing Cross practice.

For instance, FtM spectrum individuals must have been on hormones for at least six months and full-time for at least a year before top surgery is considered, and patients must wait at least two years before being offered genital surgery (although a referral appointment for surgery may take place after 18 months under some circumstances). This last point in particular is justified with reference to ICD-10. Interesting here that guidance for diagnosis from 1992 is given precedence over guidance for care from 2011.

Trans youth– There is an acknowledgement of the benefits of hormone blockers for under-18s, but (unlike the Scottish protocol) no real engagement with the possibility of hormones and surgery for trans people aged between 16 and 18. The protocol continues to relegate all young people to specialised – and limited! – youth services.

Overall – The document pays lip service to the WPATH Standards of Care but does not really live up to the spirit of those guidelines. This is particularly evident when the draft document is compared to the Scottish protocol. Patients are expected to put up with a long-winded, complex system in which treatment is spread out over many years.

The Ugly

Get a job – Patients are still expected to be in education or employment in order to gain a referral for genital surgery. If you don’t have a job or you’re not on a course, you’re expected to be involved in some volunteering role. It’s all about demonstrating your ability to move through the world in your “new” gender prior to irreversible surgery.

This requirement is patronising, stupid, and fetishises trans genitals. What other surgery requires that those who undergo it are in work? Why is it that genital reconstruction is seen such a massive step, but the permanent changes that come with long-term hormone therapy is not? Yes, surgery is a big deal, but it’s clear that clinicians regard this surgery as something else entirely.

I can’t understand how this can possibly be acceptable at the best of times, but at a time of recession and mass unemployment it strikes me as particularly cruel and unreasonable. How to account for individuals who cannot find a volunteering role in their local area? Individuals with anxiety issues? Individuals who are told by the Job Centre not to volunteer, with the threat of benefit withdrawal hanging over this order? And how can this possibly be acceptable when trans people face considerable inequalities in the job market (with trans unemployment estimated at 50% in some European countries).

Physical examination – GPs are apparently “expected” to perform a physical examination of trans patients. Why? No reason is given. The document simply states that: “The GP will be required to carry out a basic physical examination and investigations, as a precursor to those physical treatments which may later be recommended.”

I simply cannot comprehend where this idea comes from. For many trans people – particularly those contemplating physical transition – the very idea of a physical examination is extremely unpleasant and can cause severe distress. There are times when pre-operative trans people might require a physical examination: such as immediately prior to surgery, or during a sexual health check-up. These experiences can be deeply unpleasant, but at least they’re necessary.

GPs are not trained to understand the complexities of trans people’s relationships with their bodies. In fact, most GPs don’t receive any training on trans issues whatsoever. What are they meant to be looking out for during such an examination, and how are they supposed to know? An invasive examination such as this should only be performed when necessary, by someone who knows exactly what they’re doing.

Discussion: England vs Scotland

The headlines from the Scottish protocol included a number of moves to bring treatment more in line with the most recent edition of the WPATH Standards of Care. These included provisions for self-referral and referral by GP, less waiting time for surgeries, access to a wider range of treatments (e.g. hair removal) and full access to treatment for individuals aged between 16 and 18.

Whilst representatives from groups such as the Scottish Transgender Network played a vital role in putting provisions such as these on the national agenda, it’s important to recognise that many of them had already been implemented by Sandyford GIC.

The message seems to be that the English clinics – who are almost entirely responsible for the development of this draft protocol – are not interested in developing new practice, let alone conforming with the seventh edition of the WPATH Standards of Care. Instead, they seem keen to maintain a tight control over the processing of patients, an approach that renders the draft protocol even more strict than a new national commissioning policy that is being simultaneously developed.

Survey

The survey that accompanies the draft protocol is extremely short. This makes it quick and easy to fill in, but the form also seems to have been designed to shut down unwanted criticism. The Department of Health appears interested only in how current experiences match up to the proposed protocol, and seems keen to avoid any kind of critical feedback on the document.

It is, however, possible to offer you opinion on the nature of the protocol itself. Here are some tips for doing so:

  • Where your experiences differ from the protocol in a positive manner (e.g. you didn’t receive a physical examination from your GP), emphasise how your experience was more positive than would be the case should the protocol be implemented as-is.
  • Where your experiences differ from the protocol in a negative way, emphasise any manner in which you think the protocol could go further to ensure better treatment.
  • If you have sought care outside of the NHS for necessary treatments (e.g. hair removal for trans women) explain why this treatment should be a necessary part of the protocol

Final thoughts

The introductory text to the survey suggests that current political and financial pressures on the NHS prohibit the introduction of any real changes within the draft protocol:

DH wants the final document to outline the current position for transgender people seeking gender reassignment services through the NHS. The document should outline what support and services a transgender person can expect to receive in the tight financial constraints currently placed on the NHS.

This doesn’t really make a huge amount of sense. Yes, if more trans people have access to services (e.g. laser hair removal), this will cost money. But surely there is a lot more money to be saved through progressive reform?

Insisting on longer real-life tests, longer waits for surgery and so on won’t save a lot of money in the long term. A similar amount of trans people will be accessing services: they’ll just have to wait longer as individuals in order to access the a services. The money will still be spent. So why have such long waiting times?

Insisting on referral through a specialist (i.e. psychiatrist or psychologist) won’t save money. How does the NHS possibly benefit financially from insisting that trans people see more specialists rather than having them directly referred to a gender clinic by their GP? This is particularly the case when specialists decide that they need to assess people over multiple appointments before referring them to a gender clinic. The individuals concerned experience a frustrating delay, and it costs more money because the NHS is paying for all these extra appointments.

This isn’t really about the money. It’s about gatekeepers maintaining a certain level of control over patients, and putting certain ideologies into practice. It’s about picking and choosing which parts of ICD-10 and WPATH SOC 7 fit best with their pre-existing ideas, and using those elements to justify existing practice. It’s about conservativism over progression: a wasted opportunity.