Making Medicine More Inclusive

On this episode of the GenderGP podcast Marianne is joined by Cleo Madeleine, our podcast producer, and special guest Dr Alison Berner. Dr Berner is a research fellow in oncology and specialist in gender identity whose research addresses barriers to accessing cervical screening for transmasculine people. Together they discuss the challenges facing trans and non-binary people in healthcare, and how we can change things for the better.

If you have been affected by any of the topics discussed in our podcast, and would like to get in touch, please contact us via the Help Centre. You can also contact us on social media where you will find us at @GenderGP on Twitter, Facebook and Instagram.

We are always happy to accept ideas for future shows, so if there is something in particular you would like us to discuss, or a specific guest you would love to hear from, let us know. Your feedback is really important to us. If you could take a minute or two to leave us a review and rating for the podcast on your favourite podcast app, it will help others to discover us.

 
Links:
 You can find your nearest NHS Patient and Liaison Service (PALS) office here.

NHS Population Screening: information for transgender people | Public Health England

I’m trans or non-binary, does this affect my cancer screening? | Cancer Research UK
 
The GenderGP Podcast
Making Medicine More Inclusive
 
Hello, this is Dr Helen Webberley. Welcome to our GenderGP Podcast, where we will be discussing some of the issues affecting the trans and non-binary community in the world today, together with my co-host Marianne Oakes, a trans woman herself, and our head of therapy.
 

Cleo Madeleine:

Hi everybody, and welcome to this episode of the GenderGP Podcast. As you can probably tell, Dr. Webberley isn't here today. My name is Cleo Madeleine, she/her, and I'll be standing in for her and with us are Marianne as always, our head of therapies, and Dr. Alison Berner. Alison, could you tell us a little bit about yourself and the work that you do?

Dr Alison Berner:

Absolutely. So I am a specialist trainee in medical oncology, which means I'm a cancer doctor. But I'm also a part-time gender identity specialist, seeing adults at the Gender Identity Clinic in London. As part of medical oncology side of my work, I'm a clinical research fellow, which means I do cancer research, and I also take the time out to do research at the intersection of gender identity and cancer care with the goal of improving cancer care for trans and non binary people, and also LGBTQ people more broadly.

Cleo Madeleine:

Thank you so much. It's really great to have you here because, and I don't know if this is something you want to speak to Marianne, we are committed to improving trans health care in the field of gender affirming care, but I guess one of the things that your work really shines a spotlight on is that actually trans health care is all health care that happens to transgender people.

Dr Alison Berner:

Yeah, absolutely. I think I was first inspired to work in this area absolutely because of that. So, as a junior doctor, there were a couple of instances where we had trans patients on the wards and I was, was really concerned that they were getting the same quality of care as everybody else. I felt like sometimes the discussions were a bit around kind of nuances of, you know, male versus female [inaudible] and things like that, and kind of less around the medical issues. And that was really what first drew my attention, and then being interested in the specialty of cancer and seeing that there wasn't as much going on in cancer research at that time as I thought they should be in the, in this area, I felt like something that would be really important to focus on.

Marianne Oakes:

One of the things I just found interesting when you were talking there,

On this episode of the GenderGP podcast Marianne is joined by Cleo Madeleine, our podcast producer, and special guest Dr Alison Berner. Dr Berner is a research fellow in oncology and specialist in gender identity whose research addresses barriers to accessing cervical screening for transmasculine people. Together they discuss the challenges facing trans and non-binary people in healthcare, and how we can change things for the better.

If you have been affected by any of the topics discussed in our podcast, and would like to get in touch, please contact us via the Help Centre. You can also contact us on social media where you will find us at @GenderGP on Twitter, Facebook and Instagram.

We are always happy to accept ideas for future shows, so if there is something in particular you would like us to discuss, or a specific guest you would love to hear from, let us know. Your feedback is really important to us. If you could take a minute or two to leave us a review and rating for the podcast on your favourite podcast app, it will help others to discover us.

 

Links:

 You can find your nearest NHS Patient and Liaison Service (PALS) office here.

NHS Population Screening: information for transgender people | Public Health England

I’m trans or non-binary, does this affect my cancer screening? | Cancer Research UK

 

The GenderGP Podcast
Making Medicine More Inclusive

 

Hello, this is Dr Helen Webberley. Welcome to our GenderGP Podcast, where we will be discussing some of the issues affecting the trans and non-binary community in the world today, together with my co-host Marianne Oakes, a trans woman herself, and our head of therapy.

 

Cleo Madeleine:

Hi everybody, and welcome to this episode of the GenderGP Podcast. As you can probably tell, Dr. Webberley isn’t here today. My name is Cleo Madeleine, she/her, and I’ll be standing in for her and with us are Marianne as always, our head of therapies, and Dr. Alison Berner. Alison, could you tell us a little bit about yourself and the work that you do?

Dr Alison Berner:

Absolutely. So I am a specialist trainee in medical oncology, which means I’m a cancer doctor. But I’m also a part-time gender identity specialist, seeing adults at the Gender Identity Clinic in London. As part of medical oncology side of my work, I’m a clinical research fellow, which means I do cancer research, and I also take the time out to do research at the intersection of gender identity and cancer care with the goal of improving cancer care for trans and non binary people, and also LGBTQ people more broadly.

Cleo Madeleine:

Thank you so much. It’s really great to have you here because, and I don’t know if this is something you want to speak to Marianne, we are committed to improving trans health care in the field of gender affirming care, but I guess one of the things that your work really shines a spotlight on is that actually trans health care is all health care that happens to transgender people.

Dr Alison Berner:

Yeah, absolutely. I think I was first inspired to work in this area absolutely because of that. So, as a junior doctor, there were a couple of instances where we had trans patients on the wards and I was, was really concerned that they were getting the same quality of care as everybody else. I felt like sometimes the discussions were a bit around kind of nuances of, you know, male versus female [inaudible] and things like that, and kind of less around the medical issues. And that was really what first drew my attention, and then being interested in the specialty of cancer and seeing that there wasn’t as much going on in cancer research at that time as I thought they should be in the, in this area, I felt like something that would be really important to focus on.

Marianne Oakes:

One of the things I just found interesting when you were talking there, cause I was just going through my experience. Nobody spoke to me about health care outside of being trans when I was under the gender clinic. And the first time it came into my awareness was when I went to see my GP and I went to speak to them about prescribing, I took my letter, the GIC, they put me on a, a blocker for a month and then I had to have a follow-up appointment. And in that time, it all credit to my doctor, she’d gone and thought, what else do we need to think about? And she started talking about mammograms. And she was explaining how they work out, that where my birthday is, I’ll probably miss the next round, but, you know, in a few, and I thought, I hadn’t even thought about that. You know, I hadn’t thought about other areas of health care, where there’s going to be a compromise and cancer in particular for me, because nearly everybody in my family has died historically you know, of one cancer or another, so it really is important. So it was nice to hear. The other thing that I thought about when you were talking is we did a podcast with Freddy McConnell. He made a documentary when he was pregnant and had this baby, and actually how the health care professionals treated him. And I was quite shocked, you know, I just thought, a quite high profile person, you know, they would be on their best behavior, but actually he got treated quite bad and I’m thinking, God, if I have to go for cancer screening, how am I going to be treated? So I don’t know if that’s part of what you deal with?

Dr Alison Berner:

Firstly yeah, very sorry to hear about the history of cancer in the family. I know, I know what that’s like from personal experience as well. I’m actually even sat in a room with a dog with cancer currently, I can’t seem to escape it in my personal and professional life. And it is a scary thing. And how much more so when you’re actually anticipating stigma or discrimination, when you were going for that appointment or assessment, all on top of the stress. I think that the focus on other areas of health care is improving, certainly from advice given from gender clinics, but it’s still not where it should be from other healthcare professionals. And I think there’s, there’s fear on two sides really. There’s, there’s something around, oh, well we better just treat everybody equally, which isn’t really equitable care. And so sometimes there’s a kind of ignoring of the fact that someone might be trans and have specific health care needs.

And yet on the other side, there’s the fear of, which I’m sure the term has been used on here before that, you know, the trans “broken arm, “oh gosh, so-and-so’s come in and it must be something to do with their hormones”, and finding the balance in the middle of that is really hard. And I think people making mistakes is sometimes outright discrimination and sometimes it’s just, rabbit in the headlights, “gosh, I don’t know what I’m doing. I don’t want to feel stupid”. And yet somehow that gets people’s backs up and they behave in this way that they would just never normally do with a human being. You know, it’s, it’s so strange to see, and I’ve witnessed it, even teaching people about specific health care needs for trans people let alone when I actually see patients and so it’s, it’s not a straightforward things to tackle at all, is it? It’s, unless there’s a huge variation in quality of care. And that, that must be so scary coming in as a patient. And certainly that’s what patients are telling me as well.

Marianne Oakes:

I think there’s a lot in the media as well, isn’t the, that, you know, I’m just going to use my own experience, that I had a bit of a COVID scare last year. And we thought, God, if I got taken into hospital, you know, how am I going to be treated? Not that I don’t think it would be about being treated lesser. You know, I think, you know, if there was, if I needed a ventilator I’d had gotten a ventilator, but how the staff would have coped with it and what ward would I have been put on, And just because of what I read in the media. And then you just think, do you know if somebody finds a lump, are they going to delay going to get that looked at because of them same fears? You know, there was a part of me thinking, how far would it push it before I admitted I got COVID? I didn’t have by the way, but it was a genuine concern, but yeah. Do you know how far would it push it, so people must be delaying accessing treatment because of them, them, same fears as well.

Dr Alison Berner:

I think that could be the case. And what’s really scary is we don’t actually know if people are delaying it because, and this is due to change this year hopefully, we don’t monitor trans status as part of health care. And this is one of those reasons that we need better data monitoring, because as scary as it is for someone to feel like I’m, my identity is being counted in some way, actually we can’t tackle those inequalities unless we’ve got the numbers, even in the US, they’ve only just started monitoring these factors in health care data sets in any kind of useful way. So a study came out just this year, the lead author with Sarah Jackson and they looked in a database in the US. And they were able to see some kind of increased stage of diagnosis and some worse outcomes in certain cancers. But what made it really difficult to [inaudible] that data apart is, those patients had a diagnosis quote, unquote of, of being trans on their records and label put on there record. But the way it was recorded was like any other diagnosis. So they, what, what wasn’t recorded, was a sex assigned at birth. So for sex-related cancer, they couldn’t teethe anything out and they just didn’t have the quality of data to work out whether the reasons were a delayed presentation for example. Now that data is slowly starting to be generated. I’m hoping it will be generated in the UK because actually if we do find that that is a big barrier, then that’s really important to tackle. And secondly, actually it may be that there are worse outcomes in certain cancers, and we find it’s not a delayed diagnosis. It’s not that the cancer’s worse when the patient arrives, but they do worse for a different reason. And then how much more do we need to say, well, okay, well, what is the reason then if it’s not this obvious reason? But I agree with you that there will certainly, I think still in this, particularly in the climate, in the media at the moment, be this fear of coming forward, even if it’s not the experience of, of the majority, I’ve witnessed some fantastic care in my general oncology work, I was redeployed for COVID. I did COVID wards for two months and I did oncology and I met trans patients just in passing in my clinical work and actually all their care I felt was exemplary. And actually it didn’t come up once that they were trans for any particular reason, it was just never discussed. And that was such a contrast to my clinical experience when I was first training. So some things are improving.

Marianne Oakes:

You know, despite the fears, I’ve never felt disrespected, shall we say, but there is a degree of ignorance. So, you know, having to educate your GP, which is the entry point for the NHS and actually, so even educating the oncology departments will be great, but it’s kind of got to [inaudible] right down through the NHS so that the care follows right through and is more inclusive, I think. And I think that is equally the challenge, isn’t it? That if the entry point isn’t quite right, then the fears will transmit through the rest of the NHS.

Cleo Madeleine:

One of my brushes with trans broken arm syndrome was also my own brush with COVID early in 2020. This was before we had widespread testing in the UK. I went to the walk-in center with severe shortness of breath, heavy cough, really early days before things like the isolation protocols have been put through. Otherwise I probably would have stayed at home rather than bringing my potential COVID case into the walk-in center, but I was sort of explaining these symptoms and then the clinician, who was so respectful and so wonderful, but they sat down and they Googled the estradiol I was on. I remember thinking at that point in time like, oh God, I can’t breathe, but I’m pretty, I’m pretty sure it’s not me [inaudible], like fairly certain. It wasn’t a conduct problem or a respect problem at all. Just like fundamentally quite a straightforward educational problem. I mean, I, I, one of the things I wanted to ask you, Alison, and I don’t know if this has anything to do with what you were going to say was like, how do you think we can start incorporating that education around trans healthcare into healthcare providers?

Dr Alison Berner:

Well, thank you for sharing that experience. And you’re not the first person to sort of tell me about a similar, a similar incident. I was going to say that education is absolutely key and it needs to come in at multiple levels because we’ve got generations of doctors left behind. So I know that the LGBT foundation is working very hard on better integration into undergraduate curriculums. And I’m part of it kind of a task force on that. And there are some great universities already doing good work, UCL, Manchester, for example, because they’re in cities where there’s a significant population, you can have patient representatives come in and help as part of that education in a, in a better way, rather than having to be the educator in their own consultation, which is, you know, not procreate and a big burden. But then also there’s very specific information that needs to come in what we call postgraduate levels. So, you know, specific to each specialty. So in oncology, for example, I actually was involved in a piece of work, which surveyed oncologists in the UK on their knowledge, attitudes and behaviors to treating LGBTQ patients more broadly, and that mirrored work that had been done in the states. And as a result on the 20th of June, a joint statement was published across a number of the Royal colleges that governed the sort of education of professionals working in oncology, and also a number of charities were signed on, basically committing to improve education on the specific needs of LGBTQ patients in accessing oncology, as well as a number of other areas like good collection of data like we spoke about, inclusion in clinical trials, really trying to improve care overall. And the plan is to work with the Royal College of Radiologists on some educational resources, also myself and Stewart O’Callaghan, who’s part of the Live Through This charity. So I’m a trustee of them, they provide cancer support for LGBTQ patients. We’re working with the UK Oncology Nurses Society on educational resources because it’s not just doctors, it’s every single member of staff and healthcare professionals. It’s not just education alone. You can tell people all you like, you will send your people to have a level of cultural humility and to appreciate what their patients might have been through. But education is the starting point of that. And that that really needs to be really high quality co-produced education. Not just that, you know, not just me giving a lecture, but you know, actual patients speaking. And I tried to hand the mic as much as I possibly can in order to do that. We’re hoping [inaudible] Live Through This to kind of do some sort of patient stories and patient videos so we can act out just the sort of situations that you both have spoken about and say, well actually, how would you have handled this better? Like a sort of, yeah, role-playing, choose your own adventure sort of thing. So those are the sort of approaches that we need. So I think it’s coming, but it’s a slow, it’s a slow process. And it’s making sure that it’s everywhere and freely accessible for people.

Marianne Oakes:

It feels like everything trans at the moment that demand’s growing far faster than the education and the services. I get frustrated when people say, well, you know, you’re not been faced with this before. And there is a little part of me that just thinks, you must be really deaf and blind to not realize that this is going to grow and that you should be prepared for it, not waiting for it to happen.

Dr Alison Berner:

Absolutely, this is exactly what I said when I arrived at the door of the GIC five years ago now, saying I would like to get some experience because I think I want to do research in this. And I was lucky enough that he said, actually, we quite like you would you like a job. Because they said, we don’t want you to just be researching because we want you to be actively working in this. And I said, but I couldn’t agree more because that’s the best way to do good, translational research to be involved, you know? And there they really recognize yes, actually, we’re seeing a cohort of people who will get to the peak age for cancer, and then what are we going to do? And I was listening to a journal club by Ruth Walsh, who’s done a lot of work in cancer genetics consultations and how better to do those for the, the gender diverse community enough, we’re working with them on a paper. I was listening to them and, and Ruth said, and I absolutely loved it, they said, “they’re coming, they’re coming, the trans people are coming”. As if like there was going to be this critical mass arriving in people’s clinics, you know, it really got my mind, you know, it was a great kind of almost infographic in my mind about my own [inaudible]. Yes, this is entirely right. There’s a wave of people that need to access medical services, and it’s only going to grow. And you need to have your background knowledge there. As you would for any patient group.

Marianne Oakes:

There’s a bit of a backlash about how we frame the services as well. So for example, I think in Brighton, they were kind of removing some of the gender markers for pregnant people. And there’s this big backlash. And I think there’s some misinformation around that, that this isn’t about removing the word mother, and it’s just making the services more inclusive so that we don’t just take it for granted that every person that’s coming in who’s pregnant is going to identify as a woman. And I think that it’s, it’s just making it inclusive for them without excluding other people. I think surely that, you know, it’s got to be the same for all departments. And the reason I was mentioned, this is things like, you know, mammograms, but also is it cervical screening?

Dr Alison Berner:

Absolutely. Yeah. So that’s the big piece of research that we’ve done looking at barriers to cervical screening for trans men and non binary people. And that’s the, that’s the obvious thing this dysphoria of engaging with a part of the body that you might, you know, you might not identify with depending on your own kind of identity and your own comfort with different parts of your body, but there are things around, you know, the way that the letter arrives, if it’s a letter, is it going to out you to anybody, you know, ensuring that that’s made neutral, ensuring the information feels both neutral and inclusive, and that piece of work we worked with Jo’s cervical cancer trust who’s been fantastic. So they’ve produced neutral information to their website and also bespoke information, so there’s a separate section that you can access if you have further questions and need to go into detail, having that kind of paired information. And that is important because we do know that different people have different levels of health care literacy. So as well as there being these fears over erasure words like mother, and being able to use these female terms in association with the process, there’s also a fear of alienating people who might not understand some of the language that’s being used. I have mixed feelings on this. Obviously we need to make all information as you know, as accessible for everyone as, as we possibly can, but we do also need to improve the health literacy of that whole population because the whole population really understand what cis and trans are because they’re living in a world where that’s just another aspect of diversity. It’s walking that line, isn’t it? It’s so difficult to quote unquote please everyone.

Marianne Oakes:

It seems so simple to me that there are loads of departments within the NHS that are for men and women without question, and that their protocols and their systems of communication, you know, you might be going in for a broken arm, but they’re not going to mis-gender you because of that. It’s, as soon as we’re walking to certain specifics that have not been inclusive historically, and that’s where the backlash seems to come from, that we want to own cervical screening. Do you know what I mean? That, that actually, but we can’t do. It’s got to be inclusive for everyone. I think that’s the difficulty. There was just one of the points I wanted to kind of make, cause I spoke to a mother yesterday, interestingly enough, whose child was born in Scotland. So they’ve been able to change the birth certificate and the name and everything in Scotland, but they’ve been under the care of the Tavistock in Leeds. And they send all the letters in their old name of the child. The child has been socially transitioned since they were eight. They’re now 13 and still the letters are coming. And the mother said, can we not just fix this? And they said, no, not unless you get a deed poll. So, but you’ve got a birth certificate, you’ve got everything. And there is a little apartment feels that the computer systems, even at some gender identity clinics needs updating to go with the way society is changing. And I wonder whether that’s another thing that’s kind of holding the NHS back. Their systems and protocols are so difficult to change that it’s like trying to stop a freight train.

Dr Alison Berner:

It is, it really is. And the computer systems are old, they don’t talk to one another, the huge amount of IT infrastructure is, is massive. I agree with you, to me, some of these things just do not sound that difficult and yet somehow they are, again, going back to the cervical screening work, one of the major barriers has been a call and recall system that it could only cope with recalling people who had a female gender marker. So we were automatically meaning that trans men and non binary people who had an M next to their name, and don’t even get me started on the fact that we can’t have an N of non binary next to someone’s name or, or whatever, we’ll leave that one for another day. But having that M there meant we couldn’t automatically call people. And this is, this is creating a two tier system where that responsibility falls between the GP and the patients who organize that screening. Now I’m told that that is going to be updated and we will be able to allow those identifying as masculine or transmasculine, nonbinary, and registered in such a way to be able to be called by the system, which is brilliant. But there are certainly things around, around name change and what document is required for what and how the systems talk to each other on what’s called the NHS fine. It does just need a little bit more thought and a little bit more flexibility built into it for the 21st century. And that when they’re doing this, isn’t because it is expensive and, and it’s costly and it’s time consuming. But that actually that is done in concert with the populations that are needing the change. So actually when you’re going to change an IT system, talk to the trans and non binary people, that being disadvantaged by the it system, if there were other people that are being disadvantaged by the IT system, so that, you know, I always make the point that being more inclusive will increase health care for a lot of people, it’s not just necessarily for one population, you know, talk to those who, you know, have difficult housing situations and therefore GP registration all goes awry, is there a fix for that group of people? You know, it, all of these things, you know, we could really benefit everybody by, by improving, by improving access and improving the way that these things work.

Cleo Madeleine:

One of the statistics that always really strikes me when it comes to, I suppose, the compartmentalization of these issues as trans and nonbinary issues that everybody affects anyone else is there are more cis-gender women in the UK without cervixes for one reason or another than there are trans masculine people. And they are affected in the same way by things like, you know, our inability to calibrate cervical screenings. You know, these might be people who’ve had a traumatic hysterectomy for instance, and really don’t want to keep being sent a letter saying, come for your cervical screening. You know, it’s quite funny when it happens to me because I’m, I’m 30 and for the past five years, I’ve been getting letters that say, come for your cervical screening. And then I say, you know, I don’t have a cervix and get taken off. And then I get a call saying, we’re so sorry we left you off the cervical screening register. And you know, it’s funny for me, but that’s because I don’t have personally have a traumatic relationship with it, but there are lots of people who are, who aren’t trans masculine people, but it’s still affected by these issues.

Dr Alison Berner:

At that point about traumatic hysterectomy is one I make all the time. So I, I completely agree with you. It’s true. You can opt out, but it’s not, they’re not making the opt-out straightforward and robust either. That’s also an issue. And what’s an issue as well, is that if we’re calling the wrong people and recording the wrong people as having not attended, we’re also mucking up our data massively and misallocating our resources to improve the reach for the communities that most need it, because we might be thinking that we’re under screening or over screening, not over screening, but getting better at screening particular, particular areas, country, particular groups, and actually what that information is inaccurate. So yeah, we don’t allocate specific schemes to improve inclusion to the right places. So it forms a wider set of barriers. I think one of the conclusions that we took from the piece of research that we did is that it’s not a one size fits all and it would help screening for everyone if we could improve the opt-in opt-out, improve the way reminders come. Is it better if a reminder comes on a different health care contact as an in-person reminder? Actually, would a text message be better than a letter arriving on your door mat for you personally? What’s least likely to, to out somebody? What’s less likely to trigger this boy or another kind of trauma, if that’s what that person has, has been through? You know, we banned about particularly in the oncology world all the time, personalized medicine, and people think that personalized medicine means genomics and stuff that I work on in my PhD, well actually we can’t what we need to get Right are the personal aspects of personalized medicine. And if we can’t, if we can’t do sex, gender, sexual orientation, you know, these very basic things right, and personal preferences in care right, what hope have we got of getting the molecular aspects of someone’s cancer, right. Surely those, those major factors a much more important.

Marianne Oakes:

I’m wondering, I think what we’re talking about on some level is computer systems that are inflexible. So, you know, you get assigned female at birth, you get on this conveyor belt of cervical screening, whether you need it or not, and they don’t know how to take you off it. Whereas at one time you’d have dealt with a doctor that knew you personally, and I just wonder what the professionals get. So if somebody does go into, you know, for some kind of cancer treatment or, you know, exploration, what, what information are the doctors getting? What, what would help them to, you know, at least when they read your file, that the come to you and speak to you and have an understanding of who you are. Is it the system that’s holding that back or is it purely clinician ignorance? Does that make sense?

Dr Alison Berner:

Yeah. So the model of care is, is, is very, it’s been the same for very long time. So when you get referred in to a specialist for anything, you get a sort of brief type summary from a GP plus a print out record, which sort of has a little diagnostic [inaudible] against anything you’ve ever been in to the GP for, and anything you’re currently or previously been prescribed. And it’s just sort of a generic readout. And really the way we’re taught in medicine is to take all of that information again. So repeated, you know, take a history from the patient from scratch to make sure that nothing is missed. And so every time you need a different healthcare professional, you end up going over some of the same information. And that’s partly because it ensures that nothing is missed because the previous person’s mistake, because for each one of us seeing a patient, the onus is on us and the risk is on us each time we make a decision. But equally, the systems don’t talk to one another in a kind of automated push way so that GP record is held entirely separately to the specialist record and actually been seen by a specialist at different hospital. You won’t have access to that different hospitals record. If you’ve been seen by a mental health trust, you won’t have access to that. The GP gets summaries of all of that. And some of the hospital systems now allow you to look into that GP summary, but none of these sorts of systems talk to one another. So if I have a patient arrive in my oncology clinic with a, with a cervical cancer, for example, I don’t have a record of every time that person’s gone for screening and what their result has been. I have to take that information from the patient. And the reason behind that was because many years ago, the public was asked if they wanted that data to be shared across systems.

And they decided that they didn’t want it to be shared across systems. And there are advantages to that. And there may be things in your records that you don’t want to talk about, but there are equally things that may be, that may be relevant. So I guess there’s a kind of, quite a round about way of sort of, sort of answering your question. It, it does mean that it, it, it means that whatever treatment, the patient accesses is kind of almost depending on their memory of their own record and saying the right things, which is a lot of pressure for the patient. And it would be nice to have some sort of happy medium to kind of save repetition and to speed things up. There are issues there about disposure, particularly around transitioning and what identity might feel comfortable at any, any given time. And so that might need to be solved, but having a more connected set of healthcare records that joins everything up, again, would allow us better healthcare data overall, and would improve kind of research and data collection and things like that, which might, you know, help improve population health care. It’s not an easy sale as you can hear, it’s really not an easy sale, but I’m sure there are tweaks that we could make on so many levels to make it easier.

Marianne Oakes:

I suppose the challenge that I would fear is that I go in with something that potentially quite serious and life-threatening, and somewhere that the clinicians a bit confused and thrown by my gender history and do you know, not focusing on the problem. And I just wondered where the, when it comes to the, if it was just all female, but with a, you know, assigned male at birth sign, it would just make everything a lot easier. It would give more time to dealing with the problem and not explaining the gender situation. I don’t know. It just, just feels a bit.

Dr Alison Berner:

Yeah, I think that’s what would be helpful. So I think that the new data monitoring it’s due to be announced on the 12th of July by the NHS and LGBT team, how that’s going to happen. And certainly there should be a kind of thing you can tick to say, my gender identity is not the same as my sex assigned at birth. What I always teach technicians. And I often do quite a lot of basic teaching physicians and medical students along with Kate Nambiar, who you might be familiar with. And what we always teach is, you know, taking a medical history, as you always would of what medication someone is on and what surgical procedures they’ve had. Now, gender finding interventions will come up as part of that. But the reason for taking them is merely to stratify what might be the risk of something. So someone’s coming in as, as you mentioned, Cleo, for example, with shortness of breath and chest pain, actually [inaudible] might be relevant because that could be a pulmonary embolism, but that factor needs to be taken in with everything else that’s going on in the time. And what is the likelihood of that? Well, in the case of a COVID-19 pandemic, probably the COVID-19 is more, you know, it’s more likely than the pulmonary embolism, but it’s just part of a bigger picture. So yeah, so that’s exactly, really would be a better way for it to come, rather than there’s some sorts of strange diagrams or label or being left off entirely or needing to be mentioned every time someone’s GP writes a letter, you know, you don’t need to say for someone to say this trans woman every time they’re writing a referral letter you know, it’s not relevant, unless it’s coming from a gender clinic.

Cleo Madeleine:

Referral letters are so funny like that, I’m lucky now that I’ve got a really good primary care provider, but I know so many trans people who get referral letters and there’ll be for things like, you know, like chronic pain or something, but they’ll say like “this, you know, man, formerly living as a woman” or something, you know. I think one of the things that’s really made me think about is how dangerous the pathologization of trans identity can be. Because, you know, we’re talking about what an enormous change bringing in this straightforward data point of assigned sex at birth and gender identity, and whether there’s a difference between the two and like, I love this already because I’m a massive data wonk, but we’re talking about things like improving access to cervical screening, like improving, you know, you mentioned the pulmonary embolism, this is literally lifesaving work that can be done just by implementing better data collection. And by stopping and saying, you know, you’ve got a diagnosis of transgender or gender incongruence or whatever.

Dr Alison Berner:

It’s that balancing between depathologizing and recognizing that there are medical consequences of accessing gender affirming interventions, but there are also medical consequences of accessing contraception or, you know, any other myriad things that we don’t pathologize. The whole thing that we’re taught in medical school, how, when you see a pregnant person, you don’t call them a patient, you call them a client because we shouldn’t be pathologizing pregnancy. There are myriads of medical consequences of pregnancy. We do not say someone is unwell. But it’s that balance, and it’s about that we’re moving towards a consent model of accessing gender affirming treatments, but doing that in such a way of saying, okay, there are aspects of life that need to be dealt with to minimize any risks or those gender affirming interventions, but not, we’re not putting this in the same box as we do the rest of medical care. There are, there are closer, there are closer analogies than, than kind of pathologization.

Marianne Oakes:

I suppose the thing that we need to acknowledge is that we cannot hide from our history. And I think, you know, trans people , trans community education as well for us that, you know, we can’t deny our biology and it could be life-threatening to deny it. But what we also need is to be safe going into the environments where we’re going to be looked after, and that we’re not going to be treated as, as, as others, I suppose. My question to you now, Alison, if you don’t mind, is, is there any advice you could give to our listeners to help them to make sure they do get the right health care that they need given the current climate? What can we be doing to make sure that we do get the care that we need, or the checks that we need?

Dr Alison Berner:

It’s funny, you should ask that because I was asked the self same question yesterday on a, on an interview, I did for a magazine articles. I’m going to try to remember all the things that I said. So I think as you say, if you feel safe and trusting in the healthcare professional, that’s the first thing, you don’t feel safe, find another healthcare professional, find someone rainbow or contact PALS, find someone you can trust in that situation. Don’t leave that situation entirely, probably you need to be there, but find someone who you can talk to so that you’re able to get the best care. And then we’ve got that trusting relationship, you know, I would encourage you to disclose about your identity and gender affirming treatments you have accessed or are accessing currently. So that person is in the full picture of what might be relevant to your, you know, your current healthcare situation, to make sure when you are visiting a GIC or other clinic to ask them what other medical things you need to be aware of, what other screening you should be accessing, what are the risks of the treatments that you’re accessing, and that you’ll be given information and documentation on that. Keep it to hand, keep it in a folder, even if it’s in a locked box, but know where it is so that if you get a symptom, you can go back to it. And then if you go to a medical equipment, whether it is someone that’s not as well-informed, and you can take that information with you in say well, actually, this is what GIC gave me, and if you’re confused, get that healthcare professional to seek reliable information from somewhere. So not just Google, that person could contact your GIC, they can contact even a different GIC. GIC is not going to turn you away and not give advice. The London GIC has a great website. Some of the other ones do. There’s a really good module for GP’s on the RCGP website that GP’s can access to get kind of background information about overall health care. It’s actually LGBTQ health care, not just trans health care.

So to kind of ensure that, that the information that’s been dealt with is, you know, reliable. If you find someone, you know, is, you fear, treating you with the trans broken arm syndrome, then get a second opinion from somewhere and again, contact PALS if you’re having difficulties, and don’t be, try not to be, it’s easy for me to say, but, you know, ensure that you are asking for people to accept your identity, making sure they’re using the correct name and pronouns for you, making sure you correct people because people’s failure to, to respond to that might be a marker of other things. And again, it might prompt you to seek a second opinion or to say, to move your care to, to somewhere else. I think in the main people will find kind of trusting relationships. I think it’s more common that the patient’s [inaudible] expected to be slightly the educator, then is treated with absolute ignorance or anything like that. But if you as the patient feel you are needing to be the educator and you feel out of your depth looking for information or to provide information, try to link that person in with, with a way for them to, to educate themselves. There are other great resources produced by trans people for trans people. They provide enough background info, so I think the Gender Toolkit, for example, there’s a lot of US based information, which is not all applicable to the UK, but one really good starting place is the UCSF website, which, which has a really comprehensive list of kind of just background information. And I always find that helpful, even though it’s not UK based. And there are some great UK based resources at the moment. So Public Health England has produced a booklet on screening for trans people and an adapted version of that from the female cancer specifics is now on the cancer research UK website.

So that’s available. Yeah. It’s really difficult to find that balance of knowing if someone’s putting something down to your treatments when they shouldn’t be, and one wrong bit of communication can make the whole thing feel wrong. But I think everybody’s, seems to be approaching it as a learning experience and wanting to help and you develop that two-way communication. Then also don’t be afraid to challenge that person say, well, are you sure about this? And they might then explain to you, “well, actually, yes. I looked that up, and actually this could be related.” If everybody’s approaching it as a learning conversation. I think that’s a sign that, that the interaction is going to go well. Yeah. I think that’s everything.

Marianne Oakes:

Fairly comprehensive. I have to say.

Cleo Madeleine:

I was just going to say for the listeners, we’ll put links to all of that in our blog. So we will have the resources there because those are brilliant. But anyway, sorry, Marianne carry on.

Marianne Oakes:

We did a podcast with some nuance and they made a statement. I thought it was too, you know, all trans people at times need a good advocate. If you can find somebody that can go in there and just explain all that, so you don’t have to live through it, that can be helpful. And also we’re imagining here everybody’s an adult, you know, that information you’ve just given there, I assume it will be really useful to parents and allies and support workers that will be involved as well because not everybody is an adult. So any support would be useful. So anybody listening can use that information.

Dr Alison Berner:

That’s a great point, Marianne. In one of the case studies that we worked out with the Jo’s Trust information on cervical screening, the guy going to the screening, his girlfriend went to the screening before he did and explained the background situation, what he was comfortable with what he wasn’t comfortable with. He had met a person that was going to be doing screening that was just transformative for that healthcare interaction. So actually for any healthcare professionals listening, think a little bit outside the box, you know, do you need to speak to an ally for this person? Do you need to book their appointment at a different time? Would they be more comfortable if they’re in a less gendered waiting room, could you do a bit of rescheduling? Tiny things or what seemed like tiny things can make a massive difference and just a little bit more forethought just to completely turn around a clinical interaction. And I guess the same for allies, if you think of something, if you were speaking to someone who’s about to go for something and you have a good idea of what might improve their, their healthcare interaction, then yeah. Tell them.

Marianne Oakes:

We can’t undervalue the usefulness of advocates and allies as well. I spoke to one mother that described herself as the bulldozer. I go and clear the way for my child, you know, and I just thought, that’s great. The child never has to see any of this or experience any of it. They can just get the care they need, which I thought was lovely.

Cleo Madeleine:

If we can take one thing away from this podcast, we can go away and say, when you go back to your healthcare practice, be the bulldozer.

Marianne Oakes:

On a, a slightly separate note. You know, I worked with an array of clients and one of them happens to be in the same GP practice that I’m with and their experience is completely different than mine. And it’s made me realize that I can go in and speak to the practice. And I think that’s, again, just remember whether you’re an advocate, whether you’re an ally or whether you are a trans person, that the changes that they’re making to accommodate you and your needs actually means that the next people that come in don’t have to go through the same battles. So yeah, it’s really important that that there’s nothing that we do. And even if it’s painful, even if it’s a little bit arduous, actually the net result should be, at least my primary care provider is better educated now because of me. And there’ll be better educated by the people that followed me as well. So it is moving in the right direction, I think.

Dr Alison Berner:

Yeah. And we can’t underestimate the progress. I think that has been made. I know, we’re not there yet, but that has been made by those fantastic allies and advocates and trans people bulldozing to date because it’s tangible, even in the five years I’ve been working in this area, it feels tangible to me and to the stories that I hear. So yeah, thanks to all those that are doing it and to further improvement.

Marianne Oakes:

Thank you to people like you, Alison as well. We shouldn’t underestimate your input in this as well.

Cleo Madeleine:

Absolutely. Allies and advocates and trans people bulldozing is going to look so good as the strap line of this episode. We kind of pull that out just a little soundbite.

Dr Alison Berner:

Please can we have a cartoon of that?

Cleo Madeleine:

We’ll see if we can hire an animator. I’m going to pivot into a whole new visual medium. I’m so sorry. That is all we’ve got time for. I’m sorry. On behalf of myself. Cause I felt like I could talk to you about this kind of work for a whole other hour. But no, this has been really, really insightful, informative, and also I think genuinely helpful both for the trans people who listen to our podcast, but also for the advocates and the healthcare professionals who listen, I think there’s so much to take away here. Is there anything you wanted to add at all Alison, before we wrap up?

Dr Alison Berner:

No, just to thank you both because every time I have any conversation, whether it’s informal or as part of something like this, I learned something and there are things that I take away the add to my clinical practice, my research and the education that I provide. I do this because I really believe in it, but I couldn’t do it if I didn’t have this fantastic network of the community around to draw on. Yeah. Thank you both for sharing what you’ve shared as well, because I will take it away and you’ll probably hear it on something else or, or, it’ll feed into another project or something like that in the future. Thank you very much for the opportunity. And thank you to anyone that’s listening who’s had an interaction with me and has added to that work.

Cleo Madeleine:

Is there anything you wanted to add Marianne before we sign off?

Marianne Oakes:

No, I’m feeling informed, I’m feeling a little bit humbled, to be in the presence of, I’m always humbled to be in the presence of our guests. And it always just reminds me that, you know, there’s great work going on out there, despite what we might read in the media and the, on social media. So thank you for joining us Alison it’s been great.

Cleo Madeleine:

Yeah, and for our little podcast, we get a lot of knowledge in one room. Thank you so much, Alison and Marianne for all of your contributions today. And thank you so much for having me here. If you’ve got any questions, thoughts, or experiences, particularly around accessing health care, and you’d like to talk to us about them, you can find us at GenderGP on Twitter, Facebook and Instagram. Thank you so much for listening and we’ll see you next time.

 

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