standards of care

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New article: Transnormativity in the psy disciplines

Today sees the publication of the first full article from the Trans Pregnancy project team, in the journal American Psychologist:

Transnormativity in the psy disciplines: Constructing pathology in the Diagnostic and Statistical Manual of Mental Disorders and Standards of Care

[click here to read in American Psychologist]

[click here to read free open access version]

In this article we provide a brief history of how certain narratives and expectations around how trans people should behave and be treated have been constructed through the disciplines of psychology, psychiatry, psychotherapy, and psychoanalysis, especially in a US context.

It is part of a great new special issue on Histories of psychology after Stonewall, edited by Peter Hegarty and Alexandra Rutherford.

We examine how the interests of cisgender clinicians and transgender patients have variously been opposed and entwined, and contextualise this in relation to wider structures of racism, sexism, colonialism, and binary thinking around sex and gender. We focus especially on how guidance for diagnosing trans people and managing trans healthcare has been contested across various versions of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (the DSM) and the International Harry Benjamin Gender Dysphoria Association (HBIGDA, later WPATH) Standards of Care.

This article does not focus specifically on questions of fertility, pregnancy and childbirth (although we briefly touch very on this topic). Rather, it provides important historical background on the evolution of certain medical services which have help to shape how trans people are treated and percieved. We are also currently writing a number of articles that will report on specific research findings from the Trans Pregnancy project, and I am really looking forward to sharing them also when they are published!

 

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Rainbow resources from Aotearoa: accessibility, takatāpui, and healthcare

This is the second in a short series of posts on my recent trip to Aotearoa. See also:
Part 1: Trans health and rainbow futures.


During my April/May visit to Aotearoa (New Zealand) I picked up a lot of amazing resources. In this blog post, I share some brief reflections on three great documents which contain an enormous amount of interesting and useful material produced by and for Rainbow communities (takatāpui, lesbian, gay, bi, trans, intersex and queer people), on topics that include disability, Māori experiences of gender and sexuality, and affirmative care.

These documents will be of interest to people who want to know more about rainbow activism, communities and healthcare in Aotearoa, but also clearly have a wider relevance and importance. In writing about them, my intention is to highlight the expert contribution of the authors. As a UK-based scholar and activist, I learned a great deal and it is my hope that readers will too.


All of Us

59b7fa1e4a1c5a438395612258da“Imagine how engaged our communities would be if we were curious about our strengths and values, rather than our limitations.”

This beautifully illustrated guide addresses topics such as structural stigma, intersectionality, accountability, minority stress and (de)colonialism from the perspective of a queer disabled politics. It promotes a mode of solidarity and understanding that recognises and works with difference.

All of Us was created by Stace Robertson, a queer trans man of Pākehā (European or non-Māori) descent who lives with Cerebral Palsy.

Robertson explains that the project came about after he noticed that people are often not fully included even in minority communities if they experience multiple forms of marginalisation.

He therefore decided to create a resource that shared the perspective of people with these experiences, drawing on that advise of mentors, and advisory group and 14 people from a range of backgrounds who offered to share their stories in the document.

This resource will be of interest to people who want to learn more about experiences of multiple marginalisation. It will be useful to those who are new to this topic, as well as those who want to understand more about factors such as ableism or migrant status impact LGBTIQ experience and vice-versa.

There is also an excellent easy-read version of the guide available in the second half of the document.


Takatāpui: Part of the Whānau

Screen+Shot+2017-02-26+at+4.12.09+PM“Takatāpui is a traditional term meaning ‘intimate companion of the same sex.’ It has been reclaimed to embrace all Māori who identify with diverse genders and sexualities such as whakawāhine, whakawāhine, lesbian, gay, bisexual, trans, intersex and queer.”

The document was created to provide information and support for takatāpui and their whanau (family), but it will also be of interest to people wanting to learn more about mātauranga Māori (Māori knowledge or wisdom) with regards to sexual and gender diversity. It was written by Dr Elizabeth Kerekere, a renowned takatāpui activist, scholar, and founder/chair of the Tīwhanawhana Trust.

Through colonialism, Aotearoa inherited the sexism and homophobia of the British legal system. Takatāpui narrative were erased through pathologisation, colonial records, and the imposition of the nuclear family model. In light of this, Kerekere highlights the importance of pre-colonial histories, and of contemporary resilience and the importance of pride, family and community support.

In the UK, we have begun to talk more in recent years about how binary gender norms were imposed on many societies by British invaders through colonialism. These conversations can only become deeper and more nuanced through respectful engagement with knowledge produced by Indigenous peoples on this topic, rather than relying on the flawed work of colonial anthropologists. As a white trans woman who experiences both gender marginalisation and unearned privileges afforded by the legacy of colonialism, I am grateful for the opportunity to learn directly from takatāpui perspectives.


Guidelines for Gender Affirming Healthcare for Gender Diverse and Transgender Children, Young People and Adults in Aotearoa New Zealand

Guidelines for Gender Affirming Health low res.pdf“These guidelines are based on the principle of Te Mana Whakahaere; trans people’s autonomy of their own bodies, represented by healthcare provision based on informed consent.”

These guidelines were produced by a coalition of healthcare practitioners, academics and community members, with the support of the Northern Region Clinical and Consumer Advisory Group. They are intended to supplement the World Professional Association for Transgender Health Standards of Care, providing guidance relevant to District Health Boards in providing gender affirming healthcare throughout Aotearoa.

An important feature of the guidelines is the use of Māori health expert Professor Mason Durie’s health framework. The document highlights two key principles for health promotion development: Te Mana Whakahaere (autonomy) and Ngā Manukura (community leadership). There is therefore is an emphasis on trans and gender diverse people having collective control over their own destiny and decisions around healthcare.

Furthermore, Te Whare Tapa Whā, as described by Durie, conceptualises health and wellbeing as the four cornerstones of the wharenui (meeting house). As noted in the guidelines, this model recognises the equal importance of Taha Wairua (spiritual health), Taha Whānau (family health), Taha Hinengaro (mental health) and Taha Tinana (physical health). These four cornerstones provide the structure for the document.

Consequently, the guidelines highlight topics such as Māori and Pasifika genders, minority stress, social transition, health in the family and in schools, and mental health, positioning these as equally important a consideration as physical transition (for those who desire/require medical interventions). This strikes me as a really important move, de-centring hormones and surgery to instead provide a more holistic view on trans health needs.

Like many similar documents, the guidelines are not perfect. I met a number of clinical practitioners in Aotearoa who considered this document to be a good starting point for conversations around improving care, but with some limitations outside of the relatively well-resourced Northern region in which they were primarily written. I have my own concerns around the citation of somewhat inaccurate information produced by cis clinical researchers (for example, Table 5, based on the Endocrine Society Guidelines, underestimates how long it might take for certain bodily changes to take place). I also feel that the definition of “informed consent” used in the document could perhaps benefit from tightening to specify what does and does not constitute appropriate oversight in determining whether or not patients are “adequately prepared” for medical interventions.

Regardless, I am deeply grateful for the work from so many people that goes into producing guidelines such as this, and I hope they can contribute usefully to the ongoing depathologisation of trans health.

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“Living as a woman” – MPs take on the Real Life Test

I’m currently writing up a section of my thesis that describes trans people’s experiences of navigating the public health system in the UK. A large part of this is related to the “real life test”, a stage of treatment which patients are required to live for a period of time in their “acquired gender” in order to demonstrate that they are suitable candidates for hormone therapy and/or surgery.

This requirement (which, incidentally was absent from the latest version of the international World Professional Association for Transgender Health Standards of Care) has a lot of issues. These include the prioritisation of cisnormative standards, little-to-no recognition of non-binary identities, white-centric cultural insensitivity, and the frequent demand that patients hold down “an occupation” as part of the test (particularly pernicious in a time of high unemployment).

It was therefore very interesting to see MPs questioning the idea of the real life test during the fourth and final session of the UK Parliament Women & Equalities Committee’s inquiry into transgender equality earlier this week. The conversation, in which MPs quizzed Ministers and NHS England representative Will Huxter, went as follows:

Jess Phillips MP:
“I think I’d like to go back again to this idea of living in one gender identity: I wonder if you can tell me – clinically – what ‘living like a woman’ – or alternatively, man – actually means?”

Will Huxter:
“I’m not a clinician I can’t tell you what that’s – ”

Jess Phillips MP:
“Do you think that there is a clinical way to live as a woman? Or a man?”

Will Huxter:
“The point I am making is that we are guided by specialists who work in this area, the clinical consensus among gender identity specialists about how services should operate. We are absolutely open to looking at how that might change, but I’m not in a position to make a change to the way in which those services are commissioned without having gone through a clinical process”.

Maria Miller MP:
“Mr Huxter, sorry, I think we’re going to have to press you on that. Is – this is just factual, we have read that people have to ‘live like a woman’ or ‘live like a man’, we as a committee have struggled to know what that looks like in a day and age where men and women live in very similar ways. What do you – factually – what does that mean?”

Will Huxter:
“Well in terms of what is required by the clinic I’d be very happy to provide some details from clinical colleagues after this because it’s not – I don’t deliver the services nor am I a clinician. I feel I could give a better representation to the committee if I provided that outside.”

Maria Miller MP:
“Is the Minister comfortable with the fact that the government requires this information to be available, or that individuals have to live ‘like a man’ or ‘live like a woman’ in order to be able to change their identity?”

Jane Ellison MP:
“Well, I mean, put as you put it to us, I mean obviously you know it gives cause for concern in a sense that, you know, who wouldn’t have sympathy for someone put in that situation etc , clearly the committee has heard I know some really difficult evidence and I quite understand why you wish to reflect that. I mean I think that as Will has said you know there is actually currently a review going on anyway about this very issue, which is essentially about looking at the current guidelines, about understanding that represents current better practice, about giving some challenge to that. There are a number of – compared to even five years ago – there wasn’t a mechanism for the NHS to receive that sort of, you know, feedback from critical friends or otherwise. Those now exist, the transgender network has been set up, the various stakeholder groups that are, you know, really locked into the process. So I think what I’m saying is I don’t think there is ever, you know, clinical understanding of situations is rarely completely frozen in time, I mean this one particularly isn’t, because for a lot of people this is a very new speciality, and therefore I would imagine over the next ten years for example, the next few years, you will see an evolution. And that process is underway, which is exactly why the NHS is consulting and is looking at, particularly at its clinical, you know, specification. That process is actually going on at the moment and, as Will has said, very open to the committee’s recommendations being fed into that. But I know I’m not a clinician too, and I know from other areas of my portfolio perhaps better than this one because I’ve been doing it longer, I do know that you do need to test. Because once you commission to a standard, once you’ve got that, you know you do, you need to make sure you’ve tested your views, and that you actually capture a clinical consensus, because that’s the only way you can move forward. But that consensus will evolve.”

Jess Phillips MP:
“Okay, I just – from the Minister – just, I suppose, what I’m looking to hear, is that you recognise that there is not a single list of attributes that represents what it is to be a woman and/or a man; and therefore, there cannot be a clinical list of things that a person can be told to do by a doctor in order to tick those boxes. Do you recognise that fact?”

Jane Ellison MP:
“Well I understand what you’re saying and I think that it would be very helpful if we – subsequent to this hearing – write to the committee with some – with an example from a clinician operating in the field as to what they would mean by that, because obviously you know people are sitting down with individual people and saying, you know, requiring them to do that and they must have an idea of what that requirement is, what that looks like. So I think we should ask the question of clinicians and supply the committee with some, perhaps some examples, obviously anonymised, of where that’s already happening in clinical practice, and what that looks like.”

You can watch the footage here.

women and equalities

All of this is relevant to the law – in addition to clinical practice – because of the current functioning of the Gender Recognition Act. In order to gain “full” legal recognition as female or male (non-binary options aren’t available) people who have transitioned are required to apply for a Gender Recognition Certificate (GRC). In addition to £140, a whole load of paperwork and scrutiny from the national Gender Recognition Panel (no, really), individuals wishing to acquire a GRC need clinical approval. It’s no wonder that many trans people simply refuse to play along, leading to consequences such as the Tara Hudson case.

As it turns out, there is an answer to be found in the clinical literature. Charing Cross GIC clinical lead James Barrett has the following to say on the subject of the real life test in his book, Transsexual and Other Disorders of Gender Identity: A Practical Guide to Management:

“The question immediately arises of what constitutes ‘success’ in a chosen gender role. In essence, ‘success’ amounts to occupation, sexual, relationship and psychological stability. Of these, the first can be measured by whether or not the patient can manage to hold down a full-time (or equivalent part-time occupation in the chosen role for a year, in the course of the real life experience […] ‘Success’ in an occupation is achieved if the patient is treated by most others as if they are of the assumed sex. It is not necessarily that those around the patient believe that they are that sex […] Rather than being believed to be the assumed sex, the goal should be taken as an treated as that sex.”

[…]

“Some patients fiercely maintain that they do not care what others think of them, and that their own conviction of their gender is what matters. This position is at odds with the philosophy of a real life experience and if followed seems not to be predictive of a good longer-term outcome.”

Barrett further qualifies that “success cannot occur within a “purely transvestite or transsexual environment”, because “others may be supranormally accepting”.

So there you have it: “living as a woman” or “living as a man” means being taken as such within a cis environment. A very postmodern basis for clinical excellence!

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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.