Trans health in Canada: reflections and resources from CPATH

At the end of October I attended the CPATH 2017 (Canadian Professional Association for Transgender Health) conference in Vancouver. It was a fascinating event from which I learned a great deal. I’m keen to share some of my thoughts and experiences with others, as I feel there is a great deal that trans health researchers, practitioners and activists can learn from the progress that’s been made in Canada, as well as the limitations of that progress.

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Poster: “In Our Dream B.C….”, by Drawing Change. Based on Trans Care BC consultation with gender creative, trans, and two-spirit youth and their families..

In this post, I reflect briefly on my impressions of the conference, and link to Twitter threads I wrote during various sessions. You can also read my initial thoughts on the conference here.


CPATH took a broadly holistic approach to trans health

Over 300 people took part in the three-day CPATH 2017 conference and two-day pre-conference. In attendance were GPs, nurses, endocrinologists, psychologists, psychiatrists, therapists and counsellors, social workers, healthcare administrators, peer and parent support group facilitators, academic researchers, lawyers, politicians, and various trans campaigners.

CPATH 2017 treated “health” as a social phenomenon as well as a purely embodied matter, and this made for some very productive conversations. For example, numerous sessions explored how trans healthcare might best be provided in the context of primary health. Gender identity services are frequently provided by GPs with support from external specialists, a model of care that is currently under consideration for England. In some Canadian Provinces, organisations such as Trans Care BC help to connect providers in primary care to relevant specialists, and support trans people in obtaining interventions such as hormone therapy and surgeries.

This approach enables continuity of care in a local context, with family doctors enabled to provide trans-specific care for their patients alongside everyday services. It reduces barriers to access such as waiting times and the necessity of long-distance travel. It also enables GPs to help their trans patients access a wider range of specialist services: for instance, trans people with mental health issues might benefit from a referral to a peer support group as well as or instead of formal therapy (depending on patient desire and need). Many practitioners provide services on the basis of informed consent, rather than using mental health assessments as gatekeeping measures. It was heartening to see generalist and specialist healthcare professionals, social workers, trans activists and others engaged in open discussions about how best to manage care through this kind of system.

I was also particularly struck (and moved) by a session entitled Trans and Two Spirit Youth Speak Back! The 40 or so adults in attendance – mostly healthcare professionals or researchers of one stripe or another – were asked not to speak at all during this workshop. We were instead invited to listen to the stories and experiences of trans and two-spirit young people, who sat dotted around the room and answered pre-prepared questions delivered by a youth group facilitator. This session structurally prioritised the voices of young trans people who are so often silenced, and also offered an opportunity for us to hear how the healthcare needs and challenges faced by these individuals were shaped by their cultural heritage, family life, schools and peer groups.


CPATH took intersectional trans voices seriously

Trans and Two Spirit Youth Speak Back! was just one example of how trans voices were frequently centred at CPATH 2017. As an attendee from the UK, I was very impressed by this! Our trans healthcare conferences, seminars and workshops tend to be organised by and for community groups, researchers or healthcare providers, with relatively little overlap between attendees at these events. Very few practitioners are (openly) trans, meaning that trans people tend to talk to one another at community and research events, but are heard less often at healthcare conferences for doctors, nurses and mental health specialists. Moreover, the speaker line-ups at all these events tend to overwhelmingly prioritise the most privileged individuals, such as white people and men. The only possible exception is cliniQ’s Trans Health Matters conference, and that event too feels like it’s taking the first steps towards something better.

During the opening plenary of the CPATH conference proper, we were informed that around one third of speakers at the event were trans, and around a tenth were Indigenous (i.e. of First Nations heritage). I’m not sure how many people of colour were represented at the event more generally, but the all-white panels which are a norm at UK events seemed few and far between.

Importantly, the trans women, trans men, non-binary and two-spirit platformed as speakers and workshop facilitators were usually also professionals. We weren’t simply present at CPATH to represent a “patient perspective”: rather, we were the experts. This reflects the hard work of individuals in pursuing a career, and the collective work of CPATH in supporting trans professionals; it also reflects the actions of local providers in various parts of Canada who have made an active effort to employ trans people, or secure funding for partnerships with trans-led organisations.

In my previous post I noted that the opening plenary of the conference proper centred Indigenous voices. This included a formal welcome from Musqueam Elder Jewel Thomas, and talks by trans and two-spirit Indigenous educators from different parts of North America. I was happy to see that the plenary session on the second day of the conference continued to centre the voices of individuals who tend to be marginalised within even trans spaces. Two-spirit physician Dr James Makokis and Latina trans activist Betty Iglesias – who discussed issues faced by trans sex workers and migrants – were platformed alongside an Member of Parliament from Canada’s ruling Liberal Party, resulting in a thoughtful and challenging debate.


CPATH (and the rest of us) still have a lot of work still to do

I left CPATH with a very positive impression, but Canada is by no means the promised land for trans health. Professionals and patient representatives alike frequently discussed the challenges they faced in providing gender-affirming services. Transphobia and cisgenderism are still very much prevalent within healthcare provision and legal frameworks, particularly outside of urban areas: there is therefore a great need for better education among trainees and further reform of laws and guidelines. Limited funding and different approaches across the country’s Provinces and Territories also mean that not everyone has the same access to treatment, and waiting lists persist for publicly-funded care. These are challenges that exist across the world, and may benefit from greater international collaboration and strategy-sharing.

At the end of the first day of the conference proper, there was a reception specifically for trans people attending the conference. I later reflected on the experience of attending this reception in conversation with a genderqueer colleague; both of us felt ourselves relaxing enormously upon entering the trans-only space. For all the positives of CPATH, it was a huge relief to step away from cisgenderist expectations and microaggressions that quietly persisted throughout the conference proper. These included a range of unspoken ideas about how we should dress, act, and talk “professionally”, limitations on our ability to name transphobia within healthcare settings without fearing repercussions, and the occasional terrible intervention from self-righteous cis professionals.

As ever, facing down these challenges is hardest for the most marginalised trans people, including (for instance) disabled individuals, sex workers, migrants, and people of colour. I was aware that while CPATH 2017 took a broadly intersectional approach, instances of ableism, racism, sexism and so on persisted: and this could take the form of unexamined prejudices on the part of more privileged trans people too. Moreover, white people were still heavily overrepresented among conference attendees; a phenomenon that was particularly noticeable at an event held in a city as diverse as Vancouver.

What I’m taking from this is a reminder that equality work is never “done”; rather, it is something that we should strive to always “do”. We should aim constant improvement in our relations to one another rather than assuming that solidarity and equality are things that we can simply achieve. It is in this spirit that I’ve attempted to use my own privilege as an academic to bring back lessons from Canada for the UK and beyond.

So, I’ll end this post with a serious of links to Twitter threads from the event. I livetweeted extensively from CPATH 2017, sharing summaries of the numerous talks and workshops I attended. This is by no means a comprehensive summary of any of the sessions I was at, let alone the wider conference (as numerous parallel sessions took place simultaneously). However, I hope the ideas and approaches will be as useful and interesting to you as they are to me.


Pre-conference (training) Twitter threads

Day 1:

Introduction to Gender-Affirming Practice

Pre-puberty/Puberty: Addressing On-coming Puberty

 

Day 2:

Adolescence: Moving Forward With Gender-affirming Care for Youth

Cross Country Health Clinic Practice Panel: Models of Care and Clinical Practices

 

Conference Twitter threads

Day 1:

Plenary: Centering Indigeneity and Decolonizing Gender

Interpersonal Communication Needs of Transgender People

Ethical Guidelines for Research Involving Trans People: Launch of a New Resource

Investigating the Medicalization of Trans Identity

Primary Care Approaches to Caring for Trans Youth

 

Day 2:

Plenary: Fostering Safety and Inclusion in Service Provision, Systems and Sectors

Non-binary Inclusion in Systems of Care

Trans Data Collection and Privacy

Legal, Ethical, Clinical Challenges: Youth Consent to Gender Affirming Medical Care

 

Day 3:

Pregnancy and Birth

Plenary: Supporting Older Trans People

 

 

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)