ICTA Research Project

Sometimes it’s hard when the whole world is in crisis to be able to talk about the specific ways members of our community might be affected differently. This blog is intended to acknowledge particular issues affecting the trans community during the pandemic, and signpost to advice and resources.

Disruption of healthcare

Our hearts go out to anyone whose needed healthcare is disrupted by the pandemic, whatever the reason. The news that all trans surgery was being halted was perhaps inevitable for safety reasons, but is still a huge blow to the community, especially given how long many trans people had already waited for surgery. At times like these the assumption that trans healthcare is “non-essential” can add to the burden trans people carry, although it is clear now that much essential healthcare is being halted by the scale of the crisis.

It is also possible that in the coming months there may be medicine supply issues. Guidelines for GPs on managing healthcare in that event can be found here and here.

There is an example letter for extending prescriptions here

Vulnerability and isolation

There are many reasons why members of our community may be more vulnerable and isolated just now, or at risk of violence. We are more likely to experience difficult family relationships leading to flimsier support networks, and there are many other ways in which our treatment in relationships, family, community, society and online spaces can compromise our mental health.

Also, trans people exist in a population cluster where other differences, such as autism, intersex conditions and joint hypermobility, co-occur more frequently. This means there are higher levels of physical ill health and disability in our community too.

Those of us who are part of a community of trans people may also feel there are a lot of vulnerable folk around us in need of support.

If you are a vulnerable person in terms of health, you can get assistance from the government here

Organisations that can help:

Mutual Aid support systems like Queercare (you can sign up with them to offer or receive help)

Galop the LGBT+ anti-violence charity can be contacted if you’ve experienced violence – they have also produced a useful trans resilience in isolation Powerpoint

What the Trans have a Discord Server you can join for mutual trans support

Mental health resources

You might like this somatic check-in from a community member to help promote better mental health.

Changes to the Mental Health Act – Rethink has a good summary here

Coping with stress during Covid-19 – a graphic from the World Health Organisation is here

For anyone feeling suicidal, there are resources at Staying Safe here and a video from Jack, a trans guy, about safety planning here

Sex work

Resources for sex workers can be found here

Chest binding

Please consider the impact of chest binding. To get some advice around chest binding and Covid-19, see this guide.

Other resources

There’s a whole Twitter thread from Dr Harry Josephine Giles here with some of the other issues facing the community at this time and listing resources

Stonewall list other sources of support here

COVID-19 is making a huge and extraordinary impact on all our lives including of course this research project. We will put out information soon about our plans for interviews.

In the meantime, we wanted to draw attention to precautions which are being recommended in the trans community for trans (including non-binary) people who bind. (We are not medically trained and cannot give medical advice but we pass on this information in case it is helpful.)

Information about binding and COVID-19 may be particularly important if you have asthma or a respiratory illness as you are at higher risk of complications.

All of these tips have been put together by Jack Metcalfe and Amelia Arnold, and the full post can be found here.

If you have a persistent cough, wearing a binder can make it harder to cough and breathe fully. If you can, avoid wearing your binder in this time. If this does not feel possible for you, consider:

• Using a worn-in binder or wearing a larger size if you have one.
• Wearing tight singlets or shirts in place of a binder.
• Taking regular breaks from binding, and spend 1 minute taking deep breathes.

By breathing more fully, it prevents a build-up of fluid in the lungs, and reduces risk of other infections and complications taking hold. Coughing can also help to clear your lungs and loosen your upper body after binding, so be sure to do this once you have taken your binder off. When coughing, try to keep your back straight, and avoid twisting, as this will help to prevent injury to your muscles.

There are also some suggested stretches which you should do frequently to help reduce back and neck strain.

Lastly, we want to acknowledge the importance of combatting loneliness whilst isolating. Trans people are more likely to experience mental health issues like depression due to the discrimination and barriers we face in day-to-day life just for being who we are. If you are feeling more depressed, anxious or just feel like you need someone to talk to about your mental health, there are a variety of helpline services on our website which you can access  (see here). And if you have a friend or family member who you think is struggling, reach out to them with a phone call, text message or some other means to let them know you are there.

My first introduction to the ICTA project was at my interview for the job of research fellow. As the last person to join the team most of my now colleagues were present for my interview, and I could tell from the start that something special was happening here. Of course I was already excited about the project from the job description, but when I got in that interview room and everyone introduced themselves with their name AND pronouns, I was sold. This simple act, one that I hope to someday take for granted, made me feel seen and safe in a way I have never felt in a work setting before. I wasn’t even the only person there who uses they/them pronouns. I wish I could describe to you the sense of relief, the full body exhale that happens when you realize that for this one rare occasion you won’t have to explain yourself or justify your existence. I could come into that space fully as myself which, for me at least, is rare enough in everyday life and even more so in a work context.

Once I joined the team, I got to work on the survey which was my main focus for my first six months at the OU. This involved seemingly endless drafts and redrafts, community piloting, and a whole lot of troubleshooting and in the end, I am incredibly proud of what we have put out. It was particularly important to us that, in addition to asking about transition-related healthcare, we leave space for participants to talk about other forms of healthcare. After all we are not only trans at the gender clinic, we are also trans at the GP, in A&E, at the podiatrist, etc. We will also be giving participants the opportunity to tell us about their experiences with about other aspects of healthcare, such as primary care, interactions with third sector organizations, and sexual health services, in the interviews.

Our initial goal with the survey was to reach 500 respondents over the several months the survey would be live which at the time, to be honest, I didn’t think was realistic. We hit our 500^th response on day six. As I am writing we have 1011 responses and 453 of those people have agreed to be interviewed. Suffice to say we are all blown away. This is truly a testament to the hard work of the research team and the strong community support we have received.

While the response has been overwhelming, this does not in any way mean that we are done with the survey. The majority of respondents so far have been young and white which of course does not reflect the diversity of trans communities. Factors like age, race, and migrant status will impact someone’s healthcare encounters so it is important that we have a diverse sample so we can capture a fuller range of experiences. Our focus now is on recruiting people from the most underrepresented groups which are currently BAME people/POC, older people (especially 70+ year olds), people living in Northern Ireland, and those with a religious affiliation. If any of these describe you and you are able to fill out our survey, we would very much appreciate it. If you are up for a longer form interview, you can enter your contact details at the end of the survey and we will be in touch. This project would greatly benefit from your voice and your story. With more perspectives we can amplify underrepresented trans voices and ensure that any outputs and recommendations that come from this research will benefit as many people as possible.

Thank you to everyone who has helped our project in any way, from sitting down with one of us for a couple hours to tell your story to retweeting our flyer, it all helps. I am unbelievably grateful to get to work on this project, it is truly my dream job and it would not be possible without all of you.

Trans healthcare research that matters

There are moments in life when you feel like you’re doing something that’s going to make a difference. Getting the role as Patient and Public Involvement (PPI) Lead for the Integrating Care for Trans Adults (ICTA) Project was one of those moments.

I do a lot of training, consultancy and engagement work on trans issues and at times I feel like that mythical guy pushing the boulder up the hill only for it to roll back down again (I know, I know, his name was Sisyphus). But I can feel change in the air regarding trans healthcare. Bleak as things are, I have hope.

On one side, we have an utterly broken system, with untold suffering and damage being done to trans people because of the over-two-years waits at gender clinics up and down the country, and a catalogue of worries and concerns about some practices when they get there.

On the other side, in spite of the anti-trans backlash we are undoubtedly in the midst of, there is a growing empowerment and knowledge base in our community.

In trans healthcare particularly, we are at a transformative moment. This was the year that the World Health Organisation decided to declassify transness as a mental illness by removing “Gender Identity Disorder” from their International Classification of Diseases 11 and replacing it with the term “Gender Incongruence” classified not under mental health but sexual health (which is still questionable, but better).

Bearing in mind they declassified homosexuality in 1990, trans folk had a long time to wait. (Sadly, asexuals are still waiting).

This declassification marks a shift in the way professionals see trans people. I think it may connect to another heartening change; the way in which trans people are increasingly sought for their knowledge and expertise on trans issues.

I remember years ago a colleague saying he’d been turned down for a research bid because as a trans person he was perceived as “biased”. For far too long the bias of cis people towards trans people has been ignored, the cultural cisgenderism as Natacha Kennedy calls it. Cis people’s perspectives over trans lives have been seen as neutral and objective, while trans people’s self-understanding and accumulated knowledge has been treated as suspect, untrustworthy and too subjective (of course it’s subjective – but then, all knowledge is, and we should be most suspicious of those who claim objectivity).

Last year I was excited by the arrival of two books – Dr Ruth Pearce’s Understanding trans health: Discourse, power and possibility and Dr Ben Vincent’s Transgender Health: A Practitioner’s Guide to Binary and Non-Binary Trans Patient Care. What stands out about these books is that not only do they come from trans researchers, they come from researchers who are embedded in the wider trans community, who are part of an ongoing community conversation and in touch with the experiences of trans people outside of a clinical setting.

Pearce in particular exposed a hard truth about the disconnect between trans people and cis researchers and clinicians: If trans people struggle to trust cis people to do right by them, how are they going to be anything but guarded in their interactions? How, then, can researchers and clinicians arrive at the truth, when there is so much distance (and perhaps mistrust) between them and the people they research?

So how was trans knowledge going to move forward? Well, by the clinics and the researchers having a better relationship with the community they are supposed to be serving. One way for that to happen is if they are embedded in those communities, like Vincent and Pearce.

That’s why the ICTA project is so exciting to me. There’s a lot of non-academic knowledge and experience in the research team alongside the relevant scholarship. There are trans researchers and knowledgeable cis allies. There are partner organisations that have frontline experience and wisdom. There are layers of accountability and consultation throughout the process.

And that’s where the PPI group comes in. Just one of the advisory groups, our job is to make sure the projects stays accountable to the full diversity of our community. It wasn’t enough to recruit the usual panel of white middle class professional trans people. Even though there are only seven of us, we made sure we had a span of ages, backgrounds, ethnicities and experiences. We wanted to ensure we held in mind the voices of trans people who often get forgotten, wanted to ensure as much diversity of experience was represented in our small group as we possibly could.

We also made sure that we had reps from Wales, Scotland and Northern Ireland, and started to learn about the complex healthcare situations beyond England’s borders. This regional knowledge has proved invaluable.

The ICTA research is just at its start, but it promises to inspect trans healthcare in the UK from many angles. It is certainly going to capture diverse trans voices in a multitude of ways and has structures in place to make sure those voices are not drowned out by the assumptions of cis researchers.

Often when I’m doing trans consultation and engagement work I feel dispirited, not listened to. Trans people are invited to comment, but researchers have often made up their minds already; engagement is just a tick-box exercise.

Listening takes a lot of energy because when you’ve got deadlines you don’t want some pesky trans person to send you back to the drawing board. But engagement and consultation when done right, when embedded, when arrived at early enough to be flexible, can help make research hit its mark and have a positive impact on the lives being researched.

This project is going to make a huge difference to trans healthcare, because it listens to trans people. And it’s about time.

Sam Hope is the ICTA PPI Lead and author of Person centred counselling for trans and gender diverse people: A practical guide published by Jessica Kingsley Publishers

Welcome to our research blog! This is the space which we will use to periodically give updates on our research project, and also to let you know what we are all getting up to, maybe giving some insight into a day in the life of a researcher on our project. 

For the time being, we have been getting the project up and running, and preparing for our screening survey and interviews. If you are interested in taking part, please make sure to check in every now and then at (URL for survey page). 

The bulk of the work I have been doing so far has been looking at national healthcare policies relating to trans people and the kinds of discussions healthcare providers are having about trans people. This is to look at instances of guidance and policy relating to the health of trans people, and look at what factors may be at play in these regions. We can then put this into practise to create useful advice and educational materials for doctors and commissioners. We aim to do this throughout our research, as we want this project to be one that makes a difference. We should hopefully have a report which will be available to download if you check back in later. 

I am very excited for my work within this research project, as you can see from my bio it is something I am interested in not just from a professional perspective, put also from a personal one. I know from my own experiences the struggle of changing GP and being asked to pick a gender from two options, and neither seems right. But equally, I know how great it feels when a healthcare professional gets it right without me having to tell them first. I want every trans person to have that experience of affirming healthcare, and to be able to get the healthcare they want and need without fear of prejudice or discrimination. 

I am hopeful that this research project will make these changes, and will show medical professionals that trans inclusion isn’t scary and isn’t difficult. I want it to put commissioners at ease and help them to write meaningful and effective policies which help trans people. All of us on the research project are hopeful to make effective change for trans people, and you can find out more about us if you visit our project group page (Link). We want to make sure we get things right, and that anything we do reflects the language and the needs of the trans community. Our research is focused on not just what I as a singular non-binary person may want, or what we as a team of trans and cis researchers may want, but on what the community as a whole wants and needs from our healthcare services. 

As I said at the start, we will periodically write updates on the blog and you can check back in on our blog page every now and then to find out about the progress of this research project.