Transvox - Trans Cancer Screening Services Wrap up

[00:00:07] Hi and welcome back to Transvox. And it seems only a couple of months ago that I was talking to Virginia Quiney and Katie Monday about all sorts of things to do with cancer screening and the sort of technical side of that.

[00:00:22] And we thought we'd get back together again and sort of catch up again, answer some questions, talk a little about systems and having the chance to have a very kind and caring doctor sitting in the room with us.

[00:00:35] Maybe to Katie and I might pose a few extra questions that might be on our minds at the moment around the community.

[00:00:42] So maybe if we just start by reacquainting everybody with each other. So Katie, do you want to start the ball rolling? Remind us who you are, what it is that you do.

[00:00:51] I think this is your third or fourth appearance now in this podcast. You're going to be getting an award soon.

[00:00:56] Oh my goodness. So hi everyone, my name's Katie Monday, use they them pronouns.

[00:01:04] I, what do I do? What do I not do? I'm a community researcher in trans plus experiences of cancer services

[00:01:14] and also just healthcare accessibility in general around kind of autistic people's experiences of substance use services, trans autistic people's experiences of health and social care.

[00:01:25] So accessibility is my main, main area of interest.

[00:01:30] It's like a lived interest and academic interest and work interest. It's kind of a bit sinked over into everything.

[00:01:35] I'm, um, yeah.

[00:01:38] Brilliant. Virginia.

[00:01:40] I am Dr. Virginia Quiney. I am a locum GP and I also, um, work for the Wessex Cancer Alliance, um, as a sort of GP advisor.

[00:01:54] So I sort of come with both hats today. Um, I've been involved, um, in the trans plus cancer, um, awareness, um, cancer care project.

[00:02:05] Um, and that's how I've come to be on this podcast.

[00:02:10] Well, okay then, uh, Katie, is it worth just reminding everybody exactly the project we've been involved with and maybe kick us off with the first question?

[00:02:17] Yeah, please. Yeah. Um, so trans aware cancer care has been going as a project, uh, which is community based.

[00:02:26] Um, I'm one of the community researchers on there. We've got three other amazing community researchers.

[00:02:31] Um, so trans plus people with lived experiences of cancer services and we've been going out and talking to wonderful trans people and our allies about, I think when you walk into a room and you say cancer,

[00:02:46] I think sometimes that can be, well, it's, it's amazingly emotive, but sometimes that can be a bit scary and a bit intimidating.

[00:02:52] I think some people think, oh, I don't know if I've got anything to say about this or, you know, I've never had cancer personally, so I don't know, you know, if I've got anything to share about this.

[00:03:01] So we kind of widened it out to healthcare. Um, and yeah, so that's, that's why I'm here today.

[00:03:07] Just, um, trying to, um, do work with NHS professionals. Virginia is one of those fantastic professionals who's working alongside with us.

[00:03:15] To say, okay, if this is what the trans plus community has said to us, how can we actually affect change in cancer services in the UK for people?

[00:03:25] That's sick.

[00:03:26] Yeah.

[00:03:27] Right. Well, I mean, the thing I always find with these bits of research is that they often don't translate into action.

[00:03:32] So is this going to be something that will affect practice? Do you think, down the line?

[00:03:39] Is that a question to me?

[00:03:41] Well, either of you. I think it was Zoom, isn't it? I'm just looking into a camera.

[00:03:45] I'm like a vampire. I need to be invited in.

[00:03:48] No, I think Virginia actually might be better place to answer this.

[00:03:51] Come on, I'm looking over at you now, Virginia.

[00:03:53] Yeah.

[00:03:55] Um, the short answer is I hope so.

[00:03:57] Um, when we, so we had the face to face, um, celebration event.

[00:04:04] I'm trying to remember when that was.

[00:04:06] It was the end of the month.

[00:04:08] Uh, was it end of September maybe?

[00:04:09] 25th of September we had it.

[00:04:11] Ah, fantastic.

[00:04:12] And there were quite a few different healthcare professionals in the room from, um, lots of different areas of, of healthcare.

[00:04:20] And the sense I got, um, and, and Katie would be interested on to hear your views is that actually loads of people were interested and loads of people were, I think, saddened at the experiences of, um, the trans plus community and looking at, um,

[00:04:40] um, the, the, the, the bits of, um, trying to remember what they're called, the, the squares, that's it.

[00:04:48] The squares that people had done, um, to kind of depict their view and their experience.

[00:04:54] Some of them were very emotive.

[00:04:56] Um, and it was, I think people were, yeah, saddened and upset that people, that, um, this was happening and really keen and wanting to make a difference.

[00:05:08] And so having that engagement and that, um, awareness that there are these issues and what some of those issues are, I think is, is a really good first step.

[00:05:19] Um, and at our last meeting before the, um, awareness event for the celebration event, one of the things we had to think about as healthcare professionals was, well, what are you going to do?

[00:05:31] You know, we've, we've presented you with all of this information.

[00:05:35] What are you personally going to go away and do about it?

[00:05:38] And, um, so I think people are, um, thinking about it.

[00:05:44] Uh, I have contacted some of my colleagues, uh, to get a group together to think about cervical screening and how we can improve that side of things.

[00:05:54] And whether we can do any training to, with smear takers, um, to make it easier and more accessible, um, to the trans plus community.

[00:06:05] So that's something that we're considering.

[00:06:10] Um, and then it's probably going to be having ripple effects through lots of other departments for people that were there at the event and speaking to other people and saying, okay, what can we do?

[00:06:20] Um, I think there does need to be wider system change.

[00:06:23] I'm starting to see little bits creeping in now from the top down.

[00:06:30] So, um, for example, um, Cancer Research UK have, um, sent some information to, uh, practices about survival screening.

[00:06:42] And one of the things that seems to be on the horizon is that they, people might be, um, so if you're not registered female, that you might be able to opt into the service at some point.

[00:06:54] It's not in England.

[00:06:55] That's not available right now, but it does look like that's maybe on the horizon.

[00:06:59] So I suppose I'm hoping for some top down changes and some local changes as well.

[00:07:06] Um, I think there's a second phase planned of the project if funding can be found again, Katie, you may know more than me about this.

[00:07:15] So, uh, again, that will hopefully allow, yeah, more, more to happen in this area.

[00:07:21] Yeah.

[00:07:23] Um, so we've started doing work with University, um, Hospital Southampton, um, around there's another, um, cancer project that I'm involved with for disabled people, neurodivergent people and University Hospital Southampton specifically within their cervical screening are very interested in how do we like a, like a, almost like a two pronged effect.

[00:07:48] Like, how do we make this more trans inclusive, but also how do we make this more physically accessible, um, and accessible to, to more people.

[00:07:58] Um, so that's really, that's really quite exciting.

[00:08:01] Um, and possibly some work with University, Hospital, Dorset as well.

[00:08:09] Um, so I think it's, I think it's, uh, yeah, gonna, gonna enact some change and phase two.

[00:08:16] If, um, I think when that happens, I don't think there's an if about it.

[00:08:20] There's when that happens, um, will be much more on the side of, okay, so now what do we do?

[00:08:26] Um, and I think that will be on a greater scale than it has the first time.

[00:08:32] Um, yeah.

[00:08:35] Good.

[00:08:36] Okay.

[00:08:37] That's a good question.

[00:08:38] It always seems very frustrating how long these things take, isn't it?

[00:08:41] Anything around healthcare takes a long time.

[00:08:44] It's, it's often the case that also it takes five years of research to come up with this statement of the bleeding obvious as well.

[00:08:50] So I just wonder, you know, it sounds quite easy how to make our care available to, there's a very old famous phrase from Monty Python, isn't it?

[00:08:59] You know, how, how do you, how do you create water out of wine?

[00:09:01] You just create water out of wine.

[00:09:02] And it's like, you know, how do you create access to, um, this sort of care?

[00:09:07] Well, you just do it.

[00:09:08] And it's sort of, it's, it's quite frustrating, don't you think?

[00:09:11] But of course, there's a huge degree of complexity and issues and risk and all sorts of things that go around behind the scenes.

[00:09:17] And I don't think people really understand that, do they?

[00:09:19] So Virginia, I mean, can you give us a bit of an interest, a sort of a, a peek under the lid of what might be sitting behind these sorts of decisions?

[00:09:26] Because I'm sure most people really, like me, wouldn't understand it.

[00:09:31] Um, I'm not sure I know the answer to that.

[00:09:35] Um, I suppose generally it can be hard to make change in a system that is so big.

[00:09:43] Um, and so wide when there's lots of different factors involved.

[00:09:47] Um, and, but I don't know the ins and outs of, of it.

[00:09:52] Um, but it just trying to get any change sometimes, um, can be hard.

[00:09:57] Um, and sometimes even when it's, as you say, a really obvious change that could be really sensible to make, it depends whether it's something that's possible to make or whether there are sort of constraints and barriers in place that stop those changes from happening.

[00:10:13] Um, sometimes it can be system factors.

[00:10:16] So, or, or I suppose IT factors as in, have you got, um, the systems that will allow the changes you want to make, um, or, or are you constantly having to do work arounds?

[00:10:27] Um, the NHS doesn't necessarily have the most up-to-date IT, uh, in the world.

[00:10:32] So that could be, uh, another issue, but I honestly don't know all the complexities, um, that are involved, but I suspect there are many.

[00:10:43] Well, I think that almost answers the question.

[00:10:45] When you're part of it, you don't know the degree of complexity as well.

[00:10:48] That's, that's quite a challenge.

[00:10:50] You mentioned systems a couple of times.

[00:10:51] I know, Katie, you had some sort of thoughts around that or questions.

[00:10:54] Yeah, I think when, when we have been working with, uh, trans aware cancer care with NHS professionals over the last year or so, um, the systems comes up all the time.

[00:11:05] Like, I think the word archaic system has been used, you know, antique, all of this kind of thing.

[00:11:11] Um, so I think I appreciate on a base level how frustrating that must be for practitioners to have to work within like a really confined, um,

[00:11:24] way, I suppose.

[00:11:25] But I wonder what that is there, are there tips and tricks for having, you know, um, for trans plus patients to, you know, be able to change their records, being able to change pronouns, names, kind of stuff like that.

[00:11:42] How, how is the best or easiest way for, for that to happen?

[00:11:48] That is a good question.

[00:11:50] And I, I think the difficulty is there isn't a straightforward answer.

[00:11:56] Um, and if there was, then we'd probably be doing it.

[00:12:01] I think, um, yeah.

[00:12:05] So the systems are, um, such that you can change your, you can change your name, for example, um, at, at a GP surgery.

[00:12:17] It depends how you do it.

[00:12:19] So if you, if you change your, I think it's called your given name, and I, I can't remember the specifics.

[00:12:25] Um, then that changes your name on, on all of the records.

[00:12:29] And if we send out, so practices have a way of, uh, uh, communicating with, with people, almost like a sort of text message system that automatically populates certain areas.

[00:12:43] And that will put in the name that's on the computer system that, that you're, that you've given the practice.

[00:12:51] If you want to be known by a different name to the name you're registered with, um, then, and that can be in the system as well.

[00:13:00] And that can say known as, and, and that means that people, uh, the clinicians will look at that and that's what they'll call you.

[00:13:07] Um, that can be different to the, the name on your record, for example.

[00:13:12] Um, and that can just be known as.

[00:13:15] The problem with that is that if you then get sent messages, it will use your given name, as in the name you're registered with, not known as.

[00:13:24] And therefore it will potentially not be a great solution because you'll go into the practice and be called by one name and then you'll get a message from the practice calling you the other name, which you might not want to use.

[00:13:37] Um, so it's probably a case of talking to your practice about the best way for you.

[00:13:49] Um, some patients I think are quite happy to say, okay, you know, I just want to be called this name.

[00:13:55] I understand that the system is such at the moment that if I get messages, it will be the other name.

[00:13:59] I know that's not people ignoring my request.

[00:14:01] That's just how the system works and I'm fine with it.

[00:14:04] I think part of it is just having an agreement of what works for an individual person and what they would prefer.

[00:14:12] Um, my hope is that there will be some changes in the future that will allow,

[00:14:19] um, the computer systems to be a lot more flexible, um, and to incorporate this, um, a lot more diversity that we're seeing now.

[00:14:29] But I think as it stands, it's still a little bit clunky in that respect.

[00:14:35] Um, there are, there are definitely ways of doing it, but I don't think there's a clear, simple, yes, this is going to sort everything out.

[00:14:43] Yeah.

[00:14:44] If that makes any sense.

[00:14:46] Yeah.

[00:14:47] A hundred percent.

[00:14:47] A hundred percent.

[00:14:49] It does make you wonder, doesn't it?

[00:14:50] Because you've got people who are, I'm just thinking if, you know, Reginald Dwight pops in and known as Elton John and all his records are in Reginald Dwight.

[00:15:00] I mean, it doesn't take long to be able to fix, to fix that, does it?

[00:15:03] It's, I don't know, is it a uniquely trans issue and, or is it just a general NHS thing about this, this idea of not being able to easily change your name?

[00:15:13] Oh, I mean, you can change your name.

[00:15:18] Oh, I mean, you can change your name.

[00:15:31] That's, that's not a problem.

[00:15:33] It's more that, um, whether you want to be known as a different name to that's on your records.

[00:15:39] Um, so some people are known by their middle name or known by a nickname or known by shortening of their name that they would rather people call them.

[00:15:47] It's just, um, it depends on how much you want to change your, in what context you want to change your name and how that, that all works.

[00:15:57] But yeah, you can definitely change your name if, if everything is, you're completely changed your name and you're not using the other name anymore for any reason.

[00:16:04] And there's no reason to keep it then.

[00:16:06] Yeah, that's fine.

[00:16:08] And that's not a trans issue.

[00:16:09] That's, yeah, that's relatively easy to do, actually, I think, isn't it?

[00:16:15] How about, so I'm always intrigued by, and I think probably you're going to ask this question, Katie, so forgive me.

[00:16:21] So I whipped in first about the sort of non-binary experience, because it always strikes me that.

[00:16:29] Non-binary folks seem to fall into the middle of everything, which means that they're outside of everything.

[00:16:34] And how, how, how is their, how is their experience sort of managed?

[00:16:38] How is their documentation managed?

[00:16:40] How does that work?

[00:16:43] I mean, generally the records are gendered as male and female or females.

[00:16:49] So you kind of fit into one of those two categories and that can then transfer through in terms of what, yeah, what screening lists you're on and potentially, depending on which area of the country or, yeah, which area you're registered in, what, what tests you might be eligible to, to have or be ordered.

[00:17:15] So I think it's very difficult to get a semen analysis done on someone registered as female, even though you might need to.

[00:17:26] So it's, it can have an impact in that.

[00:17:28] I know that I've spoken to some practices and asked this question as to, well, if you've got someone who's non-binary and they don't want to be known as either male or female, there is a, I think there's something called MX rather than, you know, that you can be registered as.

[00:17:44] So, but I, as far as I'm aware, I think you still sort of in terms of the, the other side of it, you sort of still either male or female.

[00:17:56] Yeah.

[00:17:58] And therefore, yeah, because that's how the system is currently set up.

[00:18:05] And I think it's fair to say that however well-meaning, however much an ally, however much a GP's on our side, that there's something, there's nothing really you can, anyone can do about that.

[00:18:16] Is that this is, and I guess that must be a frustration for you as much as us.

[00:18:21] I think, I mean, generally speaking, healthcare professionals, GPs, general practice want to do the best thing for their patients.

[00:18:32] And, and I don't think people set out to make things difficult for people.

[00:18:38] It's just that I think when, when you don't quite fit into an existing system, it, therefore things become a bit more difficult.

[00:18:48] And it's how, how much flexibility have we got in that, how, what workarounds have we got.

[00:18:56] And, and I suppose as much as possible, making everybody in the practice aware as to what people's preferences are within, within the existing system.

[00:19:06] And, and perhaps that just comes down to communication again.

[00:19:11] I think if you're somebody who maybe falls outside of the sort of traditional way the systems are set up, if someone can explain it to you and just say, well, look, you know, this is how it is at the moment.

[00:19:28] These are the options.

[00:19:29] You know, what would you, how would, what do you want to do here?

[00:19:33] You know, how would you prefer it to be set up for you personally?

[00:19:37] Maybe that's the best way.

[00:19:38] I think when decisions are made or things happen that, that you then think, oh, why has that happened?

[00:19:44] And why have I been labeled as this?

[00:19:46] And why am I now called this?

[00:19:47] And what's going on?

[00:19:49] I think perhaps that's where the, some of the difficulties and frustrations come in.

[00:19:56] And yeah.

[00:19:59] Yeah.

[00:20:00] Makes a lot of sense.

[00:20:01] Can I add something here?

[00:20:03] Um, I, so I went to, I spoke at the LGBTIQ plus cancer conference that outpatients put on, oh, a couple of weeks ago now.

[00:20:17] It was fantastic.

[00:20:17] But one of the questions there, and I was there on a neurodivergent, um, panel or fireside chat.

[00:20:24] And one of the questions was around, um, do you find, um, as a trans plus patient, do you find that there is a resistance, um, to you being you and being openly trans, uh, within healthcare?

[00:20:42] Um, and my answer was, I don't know because I don't, I don't, um, what did I say?

[00:20:52] I don't push back or something like that.

[00:20:54] Um, so I'm, I've been knowingly, I say non-binary, but it's a bit more complex than that, non-binary for probably four or five years now.

[00:21:04] Um, and I've never told my healthcare practitioners, none of them.

[00:21:10] Um, and I, because I don't know what it would look like if I did.

[00:21:17] Um, so I don't have anything to add to that, but I just wanted to put that there because there is, um, yeah, there is miscommunication and there's things going on behind the scenes that if you're South Virginia, you don't know quite what's going on behind the scenes as well as a practitioner.

[00:21:35] Um, things become very murky very quickly.

[00:21:41] Um, so it's not something I've, I've, I'd be interested to know how many trans plus people in the UK are actually out within their healthcare settings.

[00:21:50] It would be really interesting to see.

[00:21:53] Yeah.

[00:21:56] Am I, sorry, sorry, go on, Gillian.

[00:21:58] Go for it, go for it.

[00:22:00] So, Katie, is this because you, is this just because it's easier for you not to do that?

[00:22:09] Do you, do you feel actually, um, it's easier for you to just not, not mention any of it and just not go down that pathway?

[00:22:18] Um, because you, do you think it would be just easier to, to stay as it is kind of thing?

[00:22:26] Uh, yeah, I think so.

[00:22:27] Obviously that's very personal to me.

[00:22:29] I'm just, I just feel like that if there does seem to be any resistance to me,

[00:22:35] I know that that way heavier than on me than me just thinking, well, of course they're going to get my pronouns wrong.

[00:22:41] Or of course they're going to, um, talk about my body and various other things in the way that I don't prefer because I've not told them I prefer that.

[00:22:49] So it's just almost easier to stick my head in the sand.

[00:22:53] And, um, you know, but also on the other side of that is that I don't currently want gender, any kind of gender affirming care.

[00:23:00] Um, so there's this weird, uh, I sit in this weird space of being privileged enough to being able to access healthcare first off and being able to access with, um, and being comfortable enough, not comfortable, but comfortable enough to be able to do that whilst I'm being misgendered constantly.

[00:23:28] Um, I can't remember the point I was getting at, um, I can't remember the point I was getting at.

[00:23:34] I was getting at such a good point as well.

[00:23:36] That was brilliant.

[00:23:37] We were all poised waiting for that, the final bit of that sentence.

[00:23:41] Um, so yeah, just trying to, to work out if and when I will tell practitioners because I just, I'm just exhausted by just generally existing in the UK at the moment as, you know, fat, mad, trans, disabled person.

[00:24:00] Like it's, um, and if I could just bury my head in the sand for the few times I've got to go to the doctors in the hospital during the year, then I'm, I'm just going to do that.

[00:24:12] I'm just going to kind of save, um, my energy and, and kind of do that.

[00:24:18] And I'd be very interested to see how many other people engage with that as well.

[00:24:23] That's it. But that in a way is a very pragmatic and actually at one level, quite a healthy strategy, isn't it?

[00:24:31] Because actually what you're not doing is ducking the screening and lots of our community don't have the screening because they don't have the, they don't save up their resources and energy to actually deploy it when it needs to be deployed.

[00:24:43] Therefore they don't get screened.

[00:24:46] Medical situations get more extreme or more advanced and then things are much more concerning.

[00:24:51] So, I mean, I think that's a very pragmatic way of looking at the world.

[00:24:55] What, what, what do you think?

[00:25:00] Um, yeah, I guess like Katie said it, it's, it's a very personal thing.

[00:25:05] Um, and it's a very personal choice.

[00:25:08] I wonder, um, whether it, whether, whether Katie, you feel if, if you told them, um, what your pronouns were and how you would like to be,

[00:25:23] addressed and, and that side of things.

[00:25:26] And then people got it wrong, whether that would be, whether that would be worse than them getting it wrong.

[00:25:34] And, and you thinking, well, I haven't actually told them.

[00:25:37] So of course they're getting it wrong.

[00:25:39] Yeah.

[00:25:39] So every time you get misgendered, it's because you haven't told them it.

[00:25:45] So I suppose in some ways you get that control back because you think that's my choice.

[00:25:49] I haven't told them.

[00:25:50] Of course they're getting it wrong rather than, oh goodness.

[00:25:53] How many times do I have to tell people?

[00:25:55] And they're constantly getting it wrong.

[00:25:57] And that's much more exhausting perhaps than you just maybe letting it, it almost like it sort of flies off you a bit better because it's your choice not to tell them.

[00:26:08] Is there something in that?

[00:26:10] Yeah.

[00:26:10] I would say that's entirely accurate.

[00:26:13] Yeah.

[00:26:14] And it's weird.

[00:26:15] And the point I was going to say at the end of that sentence, I've now just remembered is, is, it's such a strange place to be in because I am privileged to be able to access the care that I do access.

[00:26:27] And as a chronically ill person as well, sometimes that can be quite a lot, but also quite erasive in a lot of ways, but also kind of self, self administrative, self administered.

[00:26:43] Erasure?

[00:26:45] Like almost like, oh.

[00:26:48] Yeah.

[00:26:49] Preemptive.

[00:26:49] Preemptive erasure I think is the word I'm actually looking for.

[00:26:52] So like, just in case there is resistance.

[00:26:57] Yeah.

[00:26:57] No.

[00:26:58] Just lots of swear words.

[00:26:59] I would put lots of swear words in there instead.

[00:27:02] Like, yeah, just stick it up your ass basically.

[00:27:03] Like, I will decide whether I'm going to be erased or not and I should do that myself and then I should get the care I want and then I should scuttle off.

[00:27:11] That's very pragmatic.

[00:27:13] Yeah.

[00:27:14] And I guess it's your choice to be able to say, well, this way I get the health care I need.

[00:27:21] I know I'm going to get the health care I need and it's easier.

[00:27:26] And I'm, and it gives you the control back rather than letting me, letting other people get it wrong.

[00:27:33] Yeah.

[00:27:34] In some ways.

[00:27:35] And, and as Gillian said, actually, if that's working for you, then.

[00:27:42] Yeah.

[00:27:43] Yeah.

[00:27:44] It, it, it's sad that it, that it has to be that way for you at the moment.

[00:27:50] But I suppose.

[00:27:54] yeah the difficulty with not having a sort of agenda that matches the sort of screening side

[00:28:01] of things can be potentially create more um well more hurdles because you have to then opt into

[00:28:08] the screening programs and your practice has to sort of refer you for them and it's it's doable

[00:28:12] but it takes a little bit more work um and um but i do wonder as you've said how many other people

[00:28:20] are sitting in that position how many other people are thinking oh it's just too much just too

[00:28:24] exhausting just to um i don't want to i don't want to have that conversation i don't want to

[00:28:29] have to deal with all of that it's a feature isn't it of any large system uh that its ability to handle

[00:28:37] minorities is really the the the critical point of failure for most organizations but i was talking

[00:28:44] at a conference quite recently and we were talking about trans people we're talking about actually

[00:28:49] how few there are of there are of us and actually you know i i spoke to my gp and that was the first

[00:28:55] time they'd ever met ever and and and therefore they don't know what they're doing why would they

[00:29:00] be trained because they've they've bumped into someone after 46 years of practice and it's it's

[00:29:06] and i do think sometimes we have to recognize on our side of the fence that part of what we're doing is

[00:29:11] is trying to educate people to help us and i sometimes think we can we can start with an

[00:29:17] adversarial position which means that we don't educate then they don't help us because actually

[00:29:21] why would they because it's actually quite hard to help someone who is quite adversarial they don't

[00:29:26] realize that we spent you know many many years of fighting system and and such like but i do wonder

[00:29:32] whether i do whether wonder wonder whether we should think more in our own community about

[00:29:37] understanding the complexities of a gp's life as well because i do suspect that you're fighting a

[00:29:42] massive system you've got what is it eight minutes to see someone that includes you know getting a

[00:29:48] full history and whatever it might be and and sometimes that the you know you're patient after

[00:29:52] patient after patient after patient and that tiredness and duty of care sometimes just leeches

[00:29:57] out of you and then you have i mean i remember one doctor saying to me it's quite interesting

[00:30:01] talking to you because you're different and then another person saying oh blammy something else

[00:30:06] to worry about sort of thing you know so but i do think sometimes we've got to and i like

[00:30:10] katie's approach you have to think to yourself what's the way what's the way i can manage my

[00:30:15] own situation that's right for me and get the treatment i need in the most efficient way possible

[00:30:19] so i can get out of this system as quickly as possible and um and i wonder whether we think

[00:30:25] enough about that or we sit and think they should be giving me everything i want i'm entitled you know

[00:30:30] um i'm a tiny minority they might have met me but they should know everything about me as i begin

[00:30:35] so i just wondered if there's there are this education needed on both sides of the offense

[00:30:43] virginia i think that's i mean education on both sides is is definitely going to be the way forward

[00:30:50] isn't it um there are there is education um from the healthcare professional standpoint um there's

[00:30:57] definitely a lot more awareness um i don't know how far it's filtering through to everybody but

[00:31:02] there's definitely education and awareness um that's much more available than it used to be

[00:31:07] um within the cancer alliance and there's been some training um put on for healthcare professionals

[00:31:13] um in the cancer world and i think slightly more widely as well so i i think it's there i think it's

[00:31:21] it's on its way and actually um we do learn from patients um not just in terms of the transgender

[00:31:29] side of things but we learn from patients who are who have certain conditions that perhaps are quite rare

[00:31:36] um we learn from patients who have had certain conditions for a long time and almost we sort of

[00:31:42] call them expert patients they become expert in managing their own condition and they have a lot to teach

[00:31:48] us sometimes if we are on a training course um we won't just be taught by other healthcare professionals

[00:31:56] we might be taught by expert patients who come along and bring their views and their understanding

[00:32:01] because that's sometimes just as valuable is to understand it from the patient's perspective so

[00:32:08] actually um jillian as you say if you can provide a little bit of education and come and say look

[00:32:14] this is my experience i'm maybe you know i might be coming across perhaps quite demanding here but

[00:32:20] this is because of this i'm carrying with me this background or all of the things i've had to go

[00:32:27] through to get where i am um and i suppose from the gp side of it i think i mentioned this last time

[00:32:32] sometimes it's just it can be difficult but for us to always put ourselves in our patient's shoes um

[00:32:42] if that's the aim we try um and and perhaps you you if you see your healthcare professional

[00:32:48] and in the on a monday morning um you may get a slightly different reception too if you see them

[00:32:54] on a friday afternoon because they might be potentially fresher um you know anybody can get tired and worn out and

[00:33:02] you can end up with a little bit of compassion fatigue sometimes uh whereby you might

[00:33:09] your healthcare professional might not give you as good a response as you would like um

[00:33:15] so it probably is a bit of understanding on both sides um

[00:33:20] for for it sometimes in training sessions for things we we do this exercise whereby

[00:33:28] you stand up and and literally swap chairs with the other person so um you think what what would it be

[00:33:34] when you when you do that physically it puts you in the mental headspace as well what what's it like

[00:33:39] sitting in that other chair how would i feel if i was the patient and vice versa how would i feel

[00:33:45] if i were the healthcare professional and yeah it it perhaps it is that sharing um and the communication

[00:33:54] and we don't always get that right it's it's an interesting exercise i've worked to the corporate

[00:33:59] world most of my life and i always think that if you're not getting what you want from a doctor a

[00:34:04] healthcare provider it's because you haven't figured out the right way to communicate or influence that

[00:34:07] person and often it's because you haven't seen it from their side of the fence and i often think as

[00:34:12] people are going to get treatment we have the need so actually we should be influencing them to give us

[00:34:18] what to you know fulfill our need it's not the other way around it's because otherwise you get this

[00:34:23] very strange thing that the doctor has to second guess what you're doing it's such like and

[00:34:27] you know influence you to be the right sort of patient actually i want to go in and get what i

[00:34:32] need you know often i say to my doctor what do i need to give you to get what i need to tell you or

[00:34:36] give you or help you with in order to get the service that i need from you and they're so astonished

[00:34:41] that anyone be bothered enough to ask i mean my doctor myself but not of medicine and you know it's

[00:34:46] quite a novel idea to have someone who's wants to be a partner in their own healthcare and i think

[00:34:51] that's really important isn't it i think there's a there's always when you go into healthcare settings

[00:34:58] there's always this power dynamic and i think it's very or at least i feel this anyways personally i'd

[00:35:05] been interested to see what both of you think but that you almost feel like sometimes a bit powerless

[00:35:10] with your own health um and i especially take that from a from a chronically ill person as well like

[00:35:18] feel you know sometimes you have bad pain days sometimes you have good pain days but you're

[00:35:23] still in pain um and a lot with fatigue and various other things and migraines and stuff that i have so

[00:35:29] sometimes you feel like your body isn't yours and i think the policing of gendered bodies and sexed

[00:35:41] bodies by which i mean absolutely everybody with under kind of like the ideas of kind of eurocentric

[00:35:48] ideas of the gender binary um yeah it's it's hard to feel like in control when you go into a healthcare

[00:35:56] setting so that confidence to just go yeah look this is what i need or this is what i think i need or i'm

[00:36:04] not too sure what i need what are my options it's actually something that sounds so simple but isn't

[00:36:14] i don't know it's something that a lot of people do maybe that's supposed to maybe that's because

[00:36:20] they don't know they can yeah and ask your doctors people ask your doctors for what you need exactly

[00:36:28] tell them tell them i mean here's an old idea virginia we tell the doctor the symptoms and

[00:36:32] the doctor tells us what they think the prognosis might do in the treatment regime and it's it's that

[00:36:37] thing isn't it you know sometimes i think we i mean i've met people like this myself they march to

[00:36:41] the door and say i want this and i want this and i want this and i'll say hang on a second

[00:36:45] how do we know and i sometimes think we because there's a power imbalance that we try and

[00:36:51] we jump the wrong bit of power and instead of giving giving the doctor the ability to do their job

[00:36:57] we sort of demand the answer that we've already decided is the right answer so uh well i mean we're

[00:37:02] chatting about this katie without actually discussing it this with a medical professional in the room but

[00:37:08] what do you think i mean there is a balance of an imbalance of power isn't there just inherently um

[00:37:16] and i don't know is that and i think sometimes um and that can be more marked in some sometimes than

[00:37:25] others i mean i i like to have the approach that it's a partnership because actually

[00:37:31] at the end of the day the patient it's all about the patient isn't it um it's all about them because

[00:37:39] they're the ones who have to live with their health and they have to live with their bodies they have to

[00:37:43] live with their symptoms and i'm just helping them to do that um and i hope you know it depends what

[00:37:51] the consultation's about it might be someone's come in because they've got something new they want to

[00:37:56] know what it is or it could be they've got something that they want me to sort of get rid of and cure

[00:38:02] make go away etc it might be they want me to refer to a specialist or but ultimately it's about finding

[00:38:09] out why that person sat in front of me uh what's brought them in and what what i can do with them

[00:38:16] to have the best outcome of course then there will be potentially restrictions it's it would be lovely

[00:38:24] if i could do everything that everybody wanted me to do for everybody um sometimes that's not possible

[00:38:33] just because it isn't medically scientifically possible sometimes it's not possible because

[00:38:37] of the systems because of what's available on the nhs because of the problems of waiting times so

[00:38:45] um it's almost in an ideal consultation i would know i would understand what that person in front of me

[00:38:55] has come in with what they're experiencing what they're concerned about what they would like doing

[00:39:01] about it um and then they would understand from me what what my options are for them you know what what

[00:39:10] do i have the ability to do um and and what's possible and therefore we choose together what option

[00:39:18] we will take um it doesn't always work like that some people don't some people don't like that some

[00:39:27] people almost prefer the imbalance of power to remain and don't want to be partners they want me

[00:39:34] well you're the doctor i want you to tell me what's wrong with me or i want you to tell me what i need

[00:39:39] to do or i want you to give me some medicine please and and they they don't want that responsibility for

[00:39:46] their own health they want me to almost take that off them and be responsible for it um other people

[00:39:54] are very keen other people want to take ownership so it's about finding out that level it's about finding

[00:40:00] out what what the person's comfortable with um and that's again it's all down to communication but

[00:40:08] sometimes i agree with you katie you pay patients won't always be able to come in and have that

[00:40:14] confidence to have that self-assurance or or even know what they do want um and and so perhaps part of

[00:40:22] it is having that discussion together to help them find out what they do want or how they want to

[00:40:26] manage things or how they want to go forward all i can say is virginia i'd like you to affect an

[00:40:34] immediate transfer to my surgery in newcastle please i guess you sound lovely and uh a lot less

[00:40:40] adversarial than my doctor but then there you go look it's been absolutely fascinating and we could

[00:40:46] chat for hours and i'm conscious that we should perhaps chat for hours uh but we have to draw a veil

[00:40:51] over today's episode um thank you for so much for spending time with us today and um anyone has

[00:40:57] questions they can always send them in to me as always at jillian at transwarks.co.uk more than

[00:41:02] welcome to ask answer any questions and it's wonderful to have katie with us as always to bring

[00:41:08] every single intersectionality in the pie to the to the conversation in one place because uh katie is a

[00:41:14] magnificent person and uh virginia it's been a joy to listen to your medical expertise and that and to

[00:41:19] hear the other side of the story i think that's that's fascinating i think we sometimes forget that

[00:41:23] ourselves so thank you both thank you thank you

[00:41:30] thanks for listening to this episode of transvox it's been a joy to have you with us

[00:41:35] if you want to make contact with us you can contact us at jillian at transvox.co.uk

[00:41:42] and all of our money goes to our nominated charity and jen you've chosen the charity for the next

[00:41:49] number of episodes which you want to be chosen our charity is called beyond reflections which is a

[00:41:54] charity that provides support and counseling to trans people non-binary people and their friends

[00:42:00] and their families across the uk an amazing charity doing some amazing work really important so

[00:42:06] please if you can give great and if you want to go and have a look at beyond reflections it's

[00:42:11] beyond-reflections.org.uk and uh but as i say if you'd like to make a contribution to what we're

[00:42:17] doing because we love to help the people who help us again if you've got ideas for um the show things

[00:42:22] you'd like to ask us questions comments applause or um brick baths feel free to send it all in to

[00:42:29] jillian at francevox.co.uk until the next time goodbye bye bye