GP knowledge, process and referrals
- Knowledge and understanding
- Training
- Referrals
- Wrong information
- Acting as your own practitioner
Knowledge and understanding
Young people said that a GP’s knowledge, understanding and training was important in understanding their care. Many said their GP’s knowledge of trans healthcare was often poor or inadequate. G described their GP’s knowledge as "non-existent" and their general attitude as "apathetic". Charke said, "I don’t think [my GP] really knew anything at all… his knowledge was non-existent". Reuben described his experience of GPs knowledge of trans healthcare as "awful, I mean [the GP] even said that he had no idea what he was doing." Sally felt that "there’s no real understanding of just like what the process even is to begin with. Some GPs, they don’t even have that basic knowledge." Bailey said "they're a bit like, 'What? I don't know that, I'm just gonna leave that to the professional', 'cause they're not in that field". Begam said her GP’s knowledge was "very limited, very poor but he does signpost me to different providers, like trans sexual health [service]…but his knowledge was very limited."Henry says, “A lot of healthcare professionals can hide behind a mask of general ignorance and unwillingness to educate themselves.”
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I would say from my experiences with, with GP’s hasn’t been great, I think some of the reasons that they’ve used that I’ve touched on briefly to validate them not prescribing hormones, have been borderline prejudice, I think there’s been a lot of I think, the healthcare professionals can hide behind a mask sometimes of not being a specialist, which, so and that mask then hides just general ignorance, and a general unwillingness to educate themselves about trans people, about their experiences and about their role supporting their access to healthcare.
So yeah, I think I’ve come across a lot of those masks, I don’t know if they’re masks for sure, because again to be a GP and to feel out of your depth with prescribing someone a medication is something that, that, that needs to be talked more about, and is a valid thing to say, and to feel, so I don’t know if they’re masks, but sometimes given the language that people have used, I feel like they, yeah, sometimes a professional will say, Oh I can’t prescribe you this medication what they, what I hear and what they’re actually saying is, I don’t want to prescribe you this medication
And I feel like given the amount of research which I didn’t know at the start of this journey, and I do now, which suggests that hormones are very safe to be prescribed, given the guidance that is now produced by the specialist clinics for GP’s, that’s not really an excuse. I don’t think a GP can turn around and say that they don’t want to do that, on, on ethical grounds because that’s, yeah, I don’t think that’s valid. So I think I’ve, to be honest probably given the experiences that other trans people have I think I’ve gotten off quite lightly, but I think I have experienced a little bit of, of how frustrating that can be, and how that can make you feel.
Training
People discussed a number of reasons why their GP’s knowledge could be poor. For some it was a lack of experience working with trans patients. Jaz felt that "a lot of it just depends on the number of trans patients they’ve seen". People often felt awareness training could be improved. 'H' said that when he raised healthcare needs with his GP "[the GP] was like, 'No, no,' he was like 'No I can’t do it 'cos I’m not trained in this’" Jay said, "I think [my GP] was a bit uncomfortable with it. It seemed like she hadn’t really had any training on the topic." Michelle said, "There needs to be more training because the [GP] didn’t know what he was doing". In her view GP training should involve "getting some folks in, diversity role models… from a trans organisation somewhere, for over a lunchtime talk about trans stuff, to train a lot of NHS staff". Ezio said, "It would be nice if there was a [mandatory] course".Shash describes the racism in medical training: “A lot of [people of colour] learn to hide pain”.
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Yeah, I think medical racism, especially, I think one could possibly put more emphasis on that in a way, especially with the way of our current culture, but like it is a genuine thing like, like you know these archaic text books as well, that kind of thing, but also just the understanding of like that there is differences in the sense of what ethnicity means, and like risk factors and stuff like that.
But there’s also like things which are just not true or like, and it’s kind of it’s tricky especially, like I just, especially like there’s the issue of like I haven’t really experienced it myself but I know other PoC women have, and it’s kind of like where their pain is not taken as seriously and it’s a serious issue of like I can’t, oh, it’s happen, it happens in America, or there’s so many documented cases now, but like it happens here too.
But like I said, like a cis black woman will go into a surgery or something and they’ll, she’ll say like I’m having crippling like abdominal pain or something like that and they’ll be like, Oh it’s just your period but, and then it’ll be like they’ll go home and then it’ll still continue, days and it’s like well the doctor said it was my period so I’ve got to, like what else am I going to do at this point? And like it’ll turn out to be something very serious, and it’s kind of like, it’s taking that pain seriously I guess, and like really asking about what, what issues, like what, what, like taking to an extent, because there is like a, and it’s partially due to how, like society works on the fence of, because we live in a society that benefits white people. It just is.
And so a lot of PoC learn to hide pain, if that makes sense. They learn to like minimise the pain they’re feeling. So, a lot of the time it is kind of understanding about like when they’re saying they’re in pain, they are in pain. Because a lot of the time like, so I think it’s, the thing that best explains it, trying to explain this is like white people will, if they get ill with just almost anything, a lot of the time they will just rush to the doctor, like straight up, and that’s because they feel comfortable and confident doing so.
But whereas PoC on the other hand tend not to, and that’s pure, that’s due to like the issues of racism and and it’s because it’s become a weird cycle. And it’s kind, to kind of break that cycle essentially is like for doctors to understand and, like empathise with us that, and also kind of like just like take the kind of pain seriously, and stuff like that. Like I know I’ve been bad for it, I’ve minimised my own pain, even though like I should go to the doctor for something, like you know, and I’m terrible for it in the sense of like I’ll tell other people to go to the doctor for it, but when it comes to myself I’ll minimise it for myself because like I don’t want to put, I don’t want to be a burden essentially, that’s the issue, and like a lot of, it’s kind of an entrenched kind of, well I don’t know, maybe it’s a thing within, I guess it is, it is a thing within like PoC communities where like the sense of being a burden is an, a worry, especially on like, because like on your family or something. Like you don’t want to add more cost or anything like that, or like cause more issues and that’s, that’s the thing that you kind of want to avoid.
But yeah medical racism is something that’s, needs to be taken seriously, especially when it’s, especially now, with not only the Black Lives Matter’ movement, but also Covid, it’s terrible. it’s like so many of like the front, like we don’t know quite why, we know to an extent, but obviously studies are gonna be, there’s still going to be ongoing way after this but like as preliminary stuff shows that like BAME people are more effected by Covid, and the theory is that it’s because that BAME people seem more expendable as front line workers, and I really hope that isn’t the case, but it seems more and more likely. But I also want to like people to understand, especially with the word BAME, because that’s the way that it’s, that they using an acronym, and it’s like, the, it means, it’s a meaningless word in medicine really, it really is, because like in medicine, like BAME covers too many ethnicities for it to actually matter.
Like it’s not, like we talked about it on the panel but something like DVT affects people with more melanin differently to from people with less, you know like and so it is very much like a complete useless word in term of medicine, so when people like, so like yeah it’s, and want like skin conditions and things appear differently on like and people like it’s a common, a common thing that PoC people will minimise, like heart attacks, like pain from heart attacks. And say that it’s like less, and like you know and that can cause a risk factor. So it’s like trying to, it’s a hard, it’s a hard thing, especially for something like pain, to understand that like it is, because it is very subjective in a sense, but like it’s too, it’s trying to make it a bit more relatable to your own pain scale, if that makes sense. And try and say like, when we’re doing like the one to ten pain scale, like when, when you say like, Oh ten is like crippling pain,’ is the same kind of crippling pain that they’re feeling in a way, like is that what they mean? But yeah, that’s about it really.
Referrals
For young people under the age of 17, referrals are accepted by the Gender Identity Development Service (GIDS) through a number of routes including a local Child and Adolescent Mental Health Service (CAMHS), as well as other health, social care, and education professionals, and commonly through GPs. More information can be found at GIDS. For trans people over the age of 17 referrals are accepted at Gender Identity Services (GIS) by GPs and other health professionals. For more information see GIC [London]. Some people reported experiences where their GPs didn’t understand the process of referral. Some said GPs relied outdated information. A psychiatric assessment is not required for trans patients over the age of 17 asking for a referral*.Ari talks about the change in guidelines for referral of trans people [over 17] to the gender identity services.
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So, first of all there was a lot of trying to talk me out of it or kind of talk me out of a referral and the things that I wanted out of a referral. And then there was some kind of almost wilfully misinformed. So things like the GPs don’t have to send you to for a, for a mental health assessment before they refer you. They can now refer you directly to a gender identity clinic, it’s been like that since 2011. So despite the fact that I was going there in 2015 yeah, they were still pushing for that and even when I was going to them saying, No, it’s changed. Here are the guidelines and blah, blah, blah. Presenting with all this, this correct information they were very much kind of, Oh well, you know I know best.
So very set in their ways and reverting to old practice even when it’s not for, even when its four years out of date. So that was very frustrating. And I also, there was some kind of, sort of administrative errors that went on with my referral the first two times I tried. There were, took four attempts to get a referral. The first two times I think were my GP’s fault in that things like she didn’t tell me that I needed to get a blood test, so never sent the referral. And so, you know, I’d ring back a couple of months later going, Was it sent to be accepted? She went, Oh no. Never did it, cos you need a blood test. Well you didn’t tell me that. So there was, yeah, that kind of very much wilful blocking was very disheartening to deal with.
‘M’ says, “Information related to trans healthcare is difficult [because] you have to be your own healthcare advisor”.
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Information related to trans healthcare is difficult you have to be your own healthcare advisor, your own GP, your own everything. So with my GP – she’s lovely, [laughter] however – she had never had like a trans patient so she was erring on the side of caution just quite worried about giving me the things I needed and so when I went to her to, I’d been going to her about my mental health for a little while and then I went to her to kind of explain like I think something that’s quite central in all of this is like my gender so can you refer me to Gender Identity Clinic. And she did, however I’m still waiting and that was two years ago, over two years ago that I was referred to the Gender Identity Clinic in [city] and yeah I’m still waiting to hear a peep from them. So in that kind of wait I decided that I needed to like take things into my own hands and so thank God there’s like a lot of information online, there’s people that run like Tumblrs and stuff that, I never really used Tumblr except for to find like trans information but it’s been so helpful in terms of the healthcare information that they give you, I think like people run it as almost a, like anyone can write a question and then they’re quite trained, they’re either healthcare professionals that are trans or like just trans people that are really committed to helping other trans people with healthcare. And so they write back your response and then you can read through everyone else’s questions everyone else’s responses and people do YouTubes and that kind of stuff and so that has been the main way that I’ve gotten information about trans healthcare and how to go about obtaining the things that you need.
Wrong information
Some young people talked about their GPs relating gender identity distress solely to a mental health disorder*. Max said his GP "was gonna put me through counselling at first [which] just made me think that all of this is like a disorder thing." Ezio went to his GP "about getting referred to the gender clinic… and [his GP] kept looking through my notes and bringing up the fact that I had depression". Ezio said, "[The GP kept trying to prescribe anti-depressants and it took me a good 20 minutes [to say] I just want you to refer me to the clinic." People also felt GPs conflated gender identity distress with general body dissatisfaction. CJ said, "I went to my GP and I went, 'I think I’m trans.' And she said, 'Oh. Are you sure you don’t just want to lose some weight?' And I said, 'No, no, I’m pretty, pretty confident that my issues with my body aren’t weight-related, but thanks for that'." Some people experienced GPs relying on media coverage. Jay said his GP refused to prescribe hormones; "I felt like everything was just crashing down on me". He said his GP "said that the doctors had been reading articles on the BBC and places like that about detransitioners. They had then decided for me that I might change my mind and they didn’t want that. So, that was why they decided not to prescribe". He said, "It was just awful to hear."Henry says its “exhausting” always having to “assert your own power in order to get the support that you need”.
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As a trans person who has to come into contact with healthcare professionals a lot, just because of the nature of the journey, some, I think you get, I think on one hand you almost get used to speaking to professionals, so on one level you kind of get used to walking into a room, having already educated yourself a little bit, and knowing that you might be questioned a bit so, not that you go into a room in a defensive way but you kind of almost go into a room knowing that you’re going to have to assert your own power in order to I guess get the support that you need sometimes.
So, and I don’t think that’s something that’s obviously you know, it’s, it’s not just an experience that trans people have, but I think that it’s, it’s something that as trans people you just get used to doing every time you walk into a room with a healthcare professional in one. I think that being said though, it can be very easy then to go into a room with this sense of power, and this purpose, and to then be disempowered very quickly when that professional for whatever reason, it’s not, you know if the professional has a reason, I think, for not supporting you for whatever reason, then sometimes that’s valid, and sometimes I think there is room for challenge, because as a patient you’re the expert in terms of yourself, but you’re not an expert when it comes to that, you know medication, and diagnoses all the time.
So that being said, you know I think it can be, yeah you can be disempowered quite quickly and sometimes it happens, like I say sometimes it happens for a reason and sometimes that’s okay, sometimes it happens and it’s not okay. So sometimes you can be challenged by a professional, like I was on illegitimate grounds, and in a way that then invalidates not only what you went in there to say, but also you as a person, and that can stay with you for quite a while. So, going into a room with a healthcare professional and having a conversation with, with a professional can be a very scary thing.
And I guess what terrifies me I think is that, for me, having a Mum that’s a healthcare professional, and being a healthcare professional myself, you know I’m going into these spaces and I’m coming away exhausted, having had that experience on the other side and, and being in a position where I’m, you know relatively I guess in a good place mentally, to manage those power relations. When you’re a young person or somebody who is not in that place then it’s an even scarier thing.
‘G’ talks about their wish for healthcare professionals to be experts in trans healthcare rather than relying on the patient.
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I wanna know what’s gonna happen to me. I think there’s this narrative that trans people need to educate their medical staff, which is great. it’s fantastic. It’s like yeah, yeah, like they need to learn. They don’t know what they’re doing. Often, I find myself doing that like I’ll be telling my doctor what’s up. I want like my doctor to just not assume that I’m an expert on my own body. Like I want a doctor to do some doctoring. You know to be like, this is what’s going to happen. Do you understand? It sounds pathetic, but like I kind of want to be shown some yeah. It’s like, you know, someone, who just has confidence. I don’t think GPs have enough confidence. That isn’t me empathising with their ignorance, that’s me empathising with their genuine inability to have been educated about it [Laughs]. It’s very strange that there aren’t trans GPs doing this. You would think that more trans people would have gotten out of medical school and started practicing by now. But no and that’s what’s really strange as well is it’s so disparate.
And I also think that, you know, the first informed consent clinic in London is about to be set up. Which is gonna absolutely change the game in terms of access. But what’s that gonna do in terms of like GPs feeling like they have the impetus to learn things. They’ll be like oh well that’s fine, they can get it wherever they need to now. Like as opposed to being like, wait, this is gonna to increase precarity and it’s going to reduce the amount of people applying to GIC which will overall effect statistics in the way the government isn’t taking it seriously enough and they won’t get any funding. The whole thing is going to collapse, like putting a band aid on the problem. GPs need to have the power to like examine people and help people and diagnose people with dysphoria if that’s what they need. And prescribe hormones if that’s what they need. It just feels, it feels like the whole thing about like you need to educate your GPs. It’s like, well, I shouldn’t. They should be good enough doctors to know [Laughs] I am sorry. It feels a bit like I don’t take much joy in having to construct my own transition. I want there to be a framework. I want there to be people who have some expertise. I feel like trans people, the whole thing about like trans people being experts of their own bodies. It’s like, ‘Well yes, but I’m not an expert of my own liver function. I’m not an expert of my own like my own spermatozoa production. I’m not an expert of my sleep cycle and my muscle to body mass ratio’, and these things are things that I want, I want an endocrinologist to talk to me about or a GP who knows something about endocrinology and trans people to talk to me about it.
Acting as your own practitioner
Many people felt they had to provide knowledge and information to GPs. PJ said that usually GPs "don’t really know what they’re doing, and you have to kind of explain it to ’em." Sally said that her GP asked questions such as "'I hope I’m doing the right thing. Am I doing the right thing? Is this what I’m supposed to be doing?'" She said, "it’s always a bit concerning". People felt this was often the case when a young person was a GP’s first trans patient. Declan said, "I was very unfortunate to be [his GP’s] first [trans patient]." He said, "It showed because you had to like tell them everything. They didn’t really get it and you kind of had to come out and tell your story every single time you went in." Ari said, "For both of my GPs, I was their first trans patient." Ari said they felt it was their responsibility "to bring [the GPs] up to date on treatment pathways and terminology and all that sort of stuff." They said it was "quite a lot of emotional labour." Noelle said she "did a quick search [online] before going into the GP appointment". She said "I had read all the [trans healthcare] documents… and that only took me like a couple of hours… It wasn’t that hard."Ezio says about trans healthcare, “We haven’t been told this by a medical professional… We’ve had to go out and research ourselves”.
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I think like again it’s just another GP who hasn’t been trained in sort of like transgender people but it’s annoying because like as a GP the internet is right there you can just look, that’s what we’re all doing we’re all just looking stuff up, you know. We haven’t been told this by like a general like medical professional it’s all been stuff that we’ve had to go out and research ourselves. So I kind of, I guess it’s a little bit infuriating that a lot of GP’s sort of play the whole naivety card like well, you know, I don’t know about this, this is all so new and it’s like there’s been transgender people about for like hundreds of years, like, you know, there’s something you can quite easily look into yourself just get a few terms right and just learn what people sort of want to get out of that. And like 9 times out of 10 if somebody is coming to you with sort of like gender queries, you know, they’re questioning their gender you can just say to them would you like me to refer you to like to the clinic or there are trans groups about, like probably if there was more stuff in GP waiting rooms, you know, there’s loads of stuff about, you know, like ‘Oh get help’, you know, like ‘prostate checked’, you know, cancer screenings and stuff but there’s not, I didn’t see a single thing about being trans it’s all very like not like hidden but it’s not advertised, so I guess it’s sort of this idea that, you know, that you’re not gonna know a lot about it unless you research it yourself.
Patrick feels that when visiting the GP he always has to do the explaining.
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So I think in terms of visiting GPs when it comes to visiting regarding gender issues or trans stuff I feel like I’ve always had to go in doing more of the explaining, so I can’t go in and be like I have this problem help me,’ it’s more I have this problem and this is how I need to fix it can you just please do this one thing for me so that I can access this service?’ So in terms of getting referred to gender services I couldn’t, I went into my GP and was like I would like to be referred’ and they were like No we can’t do that and we don’t know how to do that like we’re just, like we don’t understand’ that’s why actually I ended up having to go back several times and in the end I took, I literally took the pieces of paper and was like Fill these in, send them to this address please like this is what you need to do’ because they just weren’t able to help me. And then I found in terms of accessing GP’s for other medical stuff they always try and blame it on trans issues so like for physical health reasons going to GPs and they’re always like Oh it’s like the testosterone you’re taking, it’s the hormones’ it’s like No, no I’m pretty sure it’s not the hormones doing this like there is a lot more to my health than just being trans’ So I’ve always found it a really challenging experience going to GPs.
CJ shares an awkward conversation about the effects of hormone therapy on their body due to a lack of knowledge.
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I think the, one of the things that I’m so grateful that my GP knew and I didn’t know going in, was that he could prescribe me testosterone, off the back of the recommendation from the gender clinics. Gender clinics make recommendations, but GP’s can actually make prescriptions. It would be great in general if, and I don’t know how you would even do it, but, if GP’s could particularly, no any GP’s. I was going to say particularly if they know that they’re dealing with a trans person, but there is so little knowledge available there for GP’s, and so much of the time they don’t know what they’re looking for or why they’re looking for it, or why it might be a problem. An example: I got a, I had some blood tests, I got a panicked telephone call from my doctor at the GP, being like we’ve got your blood results back and we need you to come in. And I was like, Oh okay. This doesn’t sound good And I went, Can I ask why And she said, Your testosterone levels are through the roof And I was like, Yeah That’s because I take testosterone daily. And there was a pause on the end of the phone, and she was like, Well why would you do that And I was like, Because I’m trans Those kinds of things I think GP’s need to be aware of before they sort of do the, this is just a normal kind of investigation. It would also be great if GP’s understood that being trans is part of my body, but also my body runs in different ways, like when I say I can’t sleep, or if I have tonsillitis or if I’ve broken my arm, or if I’ve fallen over, there are so many things that I do that are not, they are only trans because it happens to be me that’s doing it. And I think GP’s tend to jump to, Oh you’ve got the trans flu and you’re like, No, just the regular old kind and it sucks So like both information and less reliance on it, all at the same time I think would be great.