Experiences of trans and gender diverse young people
Gender Identity Clinics
Gender Identity Clinics (GIC) provide specialist services in England and Wales for adults* seeking support with their gender identity. Staff are part of an administrative and clinical team which includes psychologists, psychiatrists, endocrinologists, speech and language therapists, and nurses. They aim to provide holistic gender care focusing on the biological/medical, psychological and social aspects of gender*2.
There are a number of services across England and Wales including London, Sheffield, Leeds, Daventry, Nottingham, Exeter and Cardiff. The waiting time for the first appointment varies across the services but can take a long time (measured in years). See ‘Experiences of Gender Identity Development Service (GIDS)’ for more on how young people moved from GIDS to GICs.
Young people we spoke to talked about their experiences with gender identity services across the UK. They talked about:
- Waiting and the impact of COVID-19
- Experience of assessment and NHS processes
- Communication and correspondence with NHS services
- Concerns about power and gatekeeping
Waiting and the impact of COVID-19
Freya said she had been on the waiting list for 16 months and thought this was not even half way there: ‘[if] I think of everything I’ve done in that time [so far], I can do it all again and still probably not get there.’ Jack talked about making his referral to an NHS service in mid-2017 when he was told the wait would likely be 22 months. Over 2 ½ years later he hadn’t heard anything. Cassie had been waiting nearly a year with no contact from the service. Reuben said, ‘It’s just sort of an ongoing joke in the trans community about how long the waiting times actually are.’
Bay talks about being on the waiting list and the lack of contact causing them to panic.
Bay talks about being on the waiting list and the lack of contact causing them to panic.
So the waiting list for the NHS was essentially that there was no, no contact between the point of getting the letter to say your referral has been received, to the point of receiving a letter to say your first appointment will be on this day. In those two and a, two years and a bit there was, there was no contact whatsoever. And I guess it kind of left me at moments sort of sitting there, sometimes I’d be like, okay, it’s, I knew it was going to take over two years, the process is slow, the letter will come eventually. As soon as it hit the two-year mark that was when I started to panic. Every sort of day that passed, or maybe my, maybe my names slipped off the list somehow, and how do I know if I’m still, how do I know that I’m still moving towards it? Should I ring them? Can I ring them? You know and I, it may just be me but the, the outward sense I get from the clinics is that they, you know, they, they’re short on resources, they’re short on time, they don’t want people ringing up all the time to say, “When’s my appointment going to be? Do you know yet?” So, I was very shy in thinking okay maybe I should, you know just ring and just check that I’m still on the list somewhere, that it’s still moving. So I never actually did that.
But in, yeah in the first two years, I didn’t really think much about that at all, it was only once it got over that, past that two year mark, because my initial letter had said, “In excess of two years,” so I thought well it could be any day now. So it was, it was in that period that I was sort of worrying like, oh you know, cos I think it was probably about two years and three or four months before I got the letter, so in those three or four months I was, that was when the panic sort of set in. But I, yeah I guess, I guess for me it’s, the, my thoughts around that are just that there is nothing you know even if it’s just a letter to say that halfway through or something, to say you are still on the list, don’t worry. Or something like that, and you know even before you start to think about the, that there’s no real other support offered in the meantime while you’re waiting. I think that’s a, you know obviously a, an even bigger thing. But yeah, just something simple as a letter just to reassure us that you know things are still moving in some sense, but for me anyway there was absolutely nothing from, from the point of referral to being offered the first appointment.
People described the experience of waiting for their first appointment frustrating, confusing and distressing. PJ described it as ‘very soul crushing, just overall lonely and you just feel like you’re not going to get anywhere.’ Noelle, who waited two years for her first appointment described the wait as ‘miserable, absolutely miserable.’ She said ‘in that entire time, I had to do everything on my own, transition related because I didn’t have the support of my GP’. Noelle decided, as a result, to self-medicate.
Erion describes his ‘super frustrating’ experience of being on the waiting list ‘a long radio silence.’
Erion describes his ‘super frustrating’ experience of being on the waiting list ‘a long radio silence.’
How would you describe the waiting list?
Awful. Awful. Shocking. A long radio silence. Like they and there's a lot of like I don't know what the word is. There is a word for it. Let's say it's like different depending on where you look. On like the letter I initially got it was like, our waiting times exceed 18 months. I was like, oh, alright. And then on their website it says 28 months, right? Then you know, I kind of I was part of like a trans Facebook group like trans masc people and I said, okay, has anybody got a referral for [city]? and someone was like, yeah, I've been on it for three years. [Laugh] Like, great. Like it's just, I would much rather have known up front that it could have been that long. Yeah and I know it changes all the time as well. But even though at the time of that letter you know, their website is saying, 24 and yet their letter is saying 18 or 28 even. And you know the letter saying 18 —it's just like what’s the point in saying that?
Because even adding in excess yeah, that can be any length of time. But it's so frustrating if you’re, you know if you've got these people that have taken that step and then you are not even giving them a clear indication of how long or signposting them to the information that says, you know, how long you are expected to wait. But also obviously, because of how many people are on the waiting list, they can't tell you how long you are expected to be there for as well, which is super frustrating.
And the issue I’ve came across with [city] as well was when I was trying to find my information about their waiting list, they don't have their own website, it's part of like the you know, [city] Care Commission Group thing. And then it's like in a tab, in a tab, in a embedded page sort of thing. If you don't know how to get there, you are not gonna find the information you need. It's not where you expect it to be and then finally it says like in a very small bit at the bottom like, we have recently invited people who are on the waiting list or like who had referrals sent out in, you know, 20-whatever. We've invited those people. But then that didn't change for like 8 months. So it's like, well, how accurate is that? Are you updating that? Like what is going on but then you obviously can't call them to be like sorry, is that right, or is it? [Laugh] What’s going? So yeah it's long and arduous and super frustrating.
People would have liked some contact while waiting, as Bay says, ‘even if it’s just a letter to say that halfway through or something, to say you are still on the list, don’t worry.’
Finding sources of support was important while on the waiting list. Declan said, ‘They should offer like resources to help you cope’. He also suggested to ‘advertise youth groups and support networks and online communities and stuff because that can really get you through a waiting list and help a lot.’
People spoke about how they tried to support themselves during the waiting time. PJ said, ‘You’ve just got to think of other things, like for me going to uni helped a lot, cos that made me think of looking forward to something else’. He said ‘my friends at the minute are like my family, and really, really helpful, and keeping me grounded when I’m really stressed out or really depressed that I’m not being seen yet.’ (See Experiences of mental health).
Anderson feels there should be support and contact offered to people while on the long waiting list for GIC.
Anderson feels there should be support and contact offered to people while on the long waiting list for GIC.
There isn’t any other words for that. It’s long as fuck, like it’s disgustingly long. I think I asked my GP to message them the other week, and I got, they got back to me and said I was 30 months away from the end of the list, I don’t even know how long 30 months is, but I’m pretty sure you can gestate an entire child in that space of time. So, I’m good, like that’s a long time. That’s a long time. You can have a baby in that time, that’s a long time. I’m okay. Innit, multiple children, like, I just can’t with these people. It’s really bad. To leave people in that situation, like if this was a spinal injury, if it was a bump on the head, like would they leave it this long? Never. They would have people out there, and I don’t understand why it’s not happening, why trans people are not being trained in this kind of healthcare, like why are we not just working for these people? I could do this job. I could do their job. I could probably do their job. If I, if they tried to train me I could probably do their job, you know, and it would be much nicer for trans people to meet someone like me than whoever the, they have in those services. It’s just such a weird space, like, I dunno. So yeah, their waiting list is long, and they don’t give enough information about where you are on the list, they don’t give you any hope. One of the things I really appreciated about MarketPlace and their counselling is that even though you’re on the waiting list for maybe a year and a half, they offer you Yoga classes, they offer you mindfulness sessions, they offer you support in that interim period before you get the counselling. So that you are being checked in on, like for no-one to have messaged me from May 2018 until now, to check that I’m even still alive is awful. I’ve got to go and find these people and do that. I just worry about all the people who are out there without the support, without the communities that I have, stuck with this crap.
People also talked about how the Coronavirus pandemic had impacted waiting times. Young people tried to come to terms with the realisation that the waiting times were very likely to increase further. Tyra said she was given an appointment which ‘didn’t end up happening.’ Pj said that before the pandemic he had been told he had his appointment booked but then, ‘the Coronavirus happened, and it got pushed back’.
Jack talks about the impact of COVID-19 on his wait for the NHS service ‘coronavirus has put everything on hold.’
Jack talks about the impact of COVID-19 on his wait for the NHS service ‘coronavirus has put everything on hold.’
It’s quite demoralising to know I’m so far away and because I mean so Coronavirus and all that has put everything completely on hold so, but even without factoring that in you know, it’s kind of knowing that I’m still about two years away at least from getting my first appointment where the they kind of talk to me and do the interview and decide that yes I really am Trans which I’ve already been through once and that I’m already on hormones and they kind of go yes that’s fine and then with [GIC] particularly then have another waiting list you go on once you’ve had your first appointment besides whether they say yeah you’re Trans enough you then go on another waiting list to see someone who will then either refer you for hormones or for in my case it would be top surgery because I will not be able to afford top surgery privately, it’s about £7/8000 which is not money I have unfortunately so I now have to wait, have to wait two years at least plus another one year or more, it’s getting longer by the day obviously to then speak to the person who can give me my referral for top surgery and then I’d have to wait again for another referral, I believe they want two referrals so another years wait in theory for the next appointment so that’s four years and then by the time I’ve got my two referrals for top surgery I need a I need to wait for the top surgeon and all the top surgeons in the UK have like I think at least 8 month long waiting lists. So it’s kind of the knowledge that it’s gonna be another five years at least until I’m able to access surgery.
Shash describes the impact of COVID-19 on gender services ‘they had to put a pause on things’ but were still trying to do video call appointments.
Shash describes the impact of COVID-19 on gender services ‘they had to put a pause on things’ but were still trying to do video call appointments.
So, it’s at the moment it’s about the same as Charing Cross, which is about twenty, twenty-six months I want to say, something like round about two years. The hope is that it will ramp up, the issue was obviously Covid happened, so they were going to start ramping it up before the lockdown and stuff happened, obviously they had to kind of put a pause on things to get, because figuring out what’s gonna happen, so they’ve kind of figured out to, like they’d, things have started to get opened up and get rolling again, but also they were still trying to do appointments they could, so those were through Zoom, like Zoom appointments and stuff like that, so they were still trying to see people.
I’m, like I’m happy to say like the people who are working in the Gender Service do really care about their patients, and do really want to see, like I, are actively trying to make it better for their patients, their care and stuff so like they feel like there’s trans people working in the service too, and stuff like that. So it’s, like it’s lovely to see and like having seen it, so like yeah, the hope is that eventually it’ll ramp up and the waiting list will get smaller. Because like this was, there was like, this is, this service has been in the talks for like years, like, and I mean years. Like I’ve not been, like I’m like I’ve been involved but nowhere near the one of the people, like it’s been two decades at least, and talking to the, some, some of the trans people involved in the fighting of this, for this, it’s like, it was a slow process and the hope is that like now that we’ve shown to an extent that this is working, and it’s benefitting trans people, that we can get more things moving essentially.
Experience of assessment and NHS process
People talked about their experience at the Gender Identity Clinic (GIC) including the assessment sessions and process. Summer said, ‘This first appointment was half of my assessment. I have the second appointment in a year and that’s when I get the [gender dysphoria] diagnosis and that is when the [NHS service] write my prescription [for oestrogen]. That is when they take over my hormone care. Even though…I’ve been living full time as a woman for two years now.’
Rahul talks about his experience of the sequence of sessions at GIC and what he spoke about.
Rahul talks about his experience of the sequence of sessions at GIC and what he spoke about.
I did three appointments. The first one I was mainly talking about my childhood again, like really fabricating this narrative that I was very focused on having a trans identity from the beginning. I think the second one was more focused on my relationship with my parents. It had very little to do about gender identity in general. It was about my personal relationship with my family and friends and predominantly with my parents. That one was cut short because I was stuck in traffic. At the end of it, she told me she didn’t feel comfortable basically allowing me hormones yet, even though what I’d said was sufficient because she didn’t personally feel comfortable giving anyone hormones after just two meetings. I don’t really think is a good excuse. We waited another month and the last one was the one where she asked me about my general mental health and we talked a little bit about it.
I ended up lying about how I felt and then that conversation was mostly because we knew that I was probably gonna get green lit for hormones so that conversation was supposed to be about [coughs] life after hormones and how my family and friends would react and what expectations I had about my life and then she was very stuck on the fact that I had not come out to my parents yet and insisted that I give her some sort of verbal promise that I come out to them before starting hormones because she, even though I was financially independent of them and lived in a different country and had been identifying and living as trans for more than a year at this point, she didn’t feel comfortable signing the papers until I guaranteed her that I would come out to them that following month because I was going home for Christmas [coughs] because she was essentially convinced that if someone’s parents have a very, someone’s close relatives or friends have a very bad reaction to them coming out as trans then that can put them off transitioning essentially or getting hormone treatment for it. So, she didn’t want to put me in a position where I no longer wanted to transition, but was on hormones even though I assured her several times that that would not be the case. But those were the three.
CJ talks about their experience of answering questions at their first and second NHS GIC appointment.
CJ talks about their experience of answering questions at their first and second NHS GIC appointment.
My first appointment was great. My first appointment was with Doctor [name], on, and he was, he was very understanding, for essentially one of the most invasive areas of my life, when you go to the clinic they want to know everything from jump, and that involves talking about your childhood in incredible detail, talking about everything from, from how you felt as a child to how frequently do you masturbate. It was, it was the levels of, of information to give a stranger in a room while also worrying that somehow you were going to give the wrong answer. And I found that really difficult. I thought he did great, I thought that the situation, it was one of those difficult bits of, I didn’t judge him for it, I understood what he had to do, and he was very open and frank about how uncomfortable it was going to be, and he understood that and apologised for it. So, there was a very sort of human interaction there, which was really great, but in general, no. I mean I’d rather have a root canal than go through any of that again.
So, after the first appointment, I then had to wait for my second appointment, and my second appointment was horrendous from start to finish. My second appointment was horrendous from start to finish. I cannot remember the name of the doctor, I feel like I’ve actually blocked out the name of the doctor, he was an older gentleman and it started going wrong when I realised that I’d been in the room for about twenty five minutes and I hadn’t said anything, but he had talked a lot about his theories of genders and names and expressions and how people do things, and it, I remember there being, a, I’m one of those people where I’ll make a lazy joke to make someone laugh in a situation because it’s easier for to me to get through it, that’s just who I am as a person. I am a walking “Dad joke” in most cases. And I remember him asking me why I didn’t use men’s rest rooms. And I said because they smell worse. And he told me that I wasn’t taking it seriously. And there was a minute where I was like, “I don’t think I understand what’s happening here.”
He also had very strong opinions on what trans people should or shouldn’t name themselves, and the names that they should pick and whether or not it outs you as being trans. And I think in a lot of ways, I suspect what he was trying to do was do that like, the notion of passing for a trans person, the idea of being in society and instantly being seen as cisgender, for some people is the absolute aim. I have always been another or some variety, and I’m very comfortable in that way. So, if someone wants to ask questions and, again I’m, I’m, these are not things I have not considered. He was very certain that, you know, calling myself [name] would be inappropriate, I should pick a different version of a name. Here are the names that I should and shouldn’t do. And it just got very, his opinions that I didn’t agree with, and also, I felt like that had very little bearing on me.
The end result, I mean the, the bit that, and of course at this point he is the, the person between me and testosterone, so he is the person between me, and as far as I understood it as well, it was I wasn’t sure if medical transition was going to be the right thing for me. But I knew that I needed to give it a go because nothing else had worked. If it didn’t work, it was then going to have to be further exploring about like what’s going on with me. I never really had the trans identity that the, my trans, knowing about my transness has fixed things. I think partly because I was just so much older when it really occurred to me, and doubt is one of my natural sort of states of being. I doubt everything. So, this is, he was also this person that’s standing between me and testosterone, I mean and being able to work out if this is going to help or not. And so I found it incredibly challenging but at the end he was like, “You can go on testosterone, but I want you to change your name.” And a stipulation for me going on testosterone was the legal name change. Which I refused to do. And I still refuse to do because I’m a grown-up. But also, it’s my name, it’s my, and nobody has the right to tell me where I should feel dysphoric or where I should feel bad about something.
A few young people described the frustration of needing multiple diagnoses of gender dysphoria from different clinicians. Ari was annoyed NHS services ‘had to diagnose me with gender dysphoria again which I’d already been diagnosed with’. They said ‘I’d seen four psychiatrists, diagnosed with the same thing at this point so that was really a hassle.’ Declan was also frustrated he needed another diagnosis of gender dysphoria after previously being seen by the GIDS. He said, ‘they didn’t believe that I’d been to The Tavistock before or had a diagnosis yet so I had to get diagnosed again despite me bringing all my evidence.’
H shares his experience of the process of NHS GIC appointments and trying to get signed off for hormones.
H shares his experience of the process of NHS GIC appointments and trying to get signed off for hormones.
Ok so experiences of gender clinic, not been very great to be honest. As we all know, it takes a long long time to be seen. I think it took 4 years maybe 3 and half to 4 years from when I first ever went to the doctor's, from then till when I was first seen. Obviously in the beginning it was a case of having to wait a long time to get that referral through and then once, originally the waiting times for the gender clinic that I chose was 10 months. And this at the time when I was living in [county] the gender clinic I chose was in [city]. At the time I drove so I thought oh that's not too bad. But by the time I was seen I was then living in [city] and not driving anymore. So obviously for me it’s a 5 hour journey there. You've got to get like maybe 3 trains and a bus. So, and the thing is when they give you the appointment it's usually quite early. So I'd have to get up at like say four in the morning, like three/four in the morning to then get on one of the first trains to get there on time for my appointments. So it’s like what basically a 10 hour round trip. And yeah, the thing is they make you wait so long and then when you have your first appointment nothing gets done. They just basically get to know you. And I know that some gender clinics they basically have like a year to two year sort of gap between your first and second appointment. So you usually don't get prescribed until you get the first sign off, first signature. And then the second appointment then you've got to go for another appointment to get your second signature so you can actually start getting your hormone prescription.
Now with my experience, when I was seen, I was already going privately and the thing is before I went private I was actually self-medicating and that was because due to the long wait and obviously lack of funds, basically one of my friends, they basically went from the gels to the injections so they basically gave me their left over gel. So I was doing that which is obviously very dangerous, never ever recommend it because I did have a funny turn with it. But yeah so by that point obviously when I met them I told them about my experience, like self-medicating and currently with a private clinic. So at that point I was kind of like can you just sign me off on these hormones. Because I'd been on hormones for I think maybe 2 years by that point, 2 to 3 years I think, yeah yeah roughly 2 years I think. So obviously by that point I had already had the changes and they could obviously see that and they could see how passionate I was. And it was just a case of at that point I was like, I really need those hormones. And at my first appointment they were kind of like “we can't expedite that we had to do it by the book”. But they said to me they will try and get me back in within the next 4 months. So I think maybe 2 months later I managed to get another appointment and then I've got my, they arranged for me to have both my signatures done in the same day.
And obviously by this point now, cause I’ve got my signatures done and I came a long way. I was kinda like “ok can we start talking about top surgery. Because obviously by that point I had the changes, I was starting to masculinise, ok now I'm masculinising but I still got, you know I still got tits so I need them gone ASAP because it’s making me feel more dysphoric. So yeah basically the doctor at the time he said to me that it wasn’t possible to do, to sort of start talking about that within the same appointment. So I did leave there feeling really deflated and really frustrated. Because I went all that way just for them to sign a bit of paper, to sign off my hormones which obviously I was already on. And the difference would be that I don't have to pay for them privately anymore, I can just do the regular NHS prescription. So that was obviously a big weight off my shoulders and obviously I could get what I thought I'd get is more monitoring of my hormone levels. So anyways, yeah he basically kind of lied to get me out of the room. Just saying that the nurse that I'm about to see will deal with that for me. So the nurse that I was seeing was just to basically get my sort of measurements and I think they might have took blood, it was like a full body examination and they basically said yeah they don't do the referrals. So obviously I left there really deflated. Because for my research it did say that with the pathway that you can do it in any order. So you don't necessarily have to, you don’t necessarily have to have hormones before you have your surgery, it depends on the patient. But obviously with my particular gender clinic, they’re very like by the book, they don't divert from what they deem to be the best pathway, the one-size-fits-all.
I've had issues, I've obviously put in complaints because I just feel like they just don't they don't really care enough. They don’t, they asked me before that appointment, before the appointment that I had to get the hormones to write a biography about how I feel and what I want for the future that, when I brought it in, that wasn't even looked at, it wasn't even read, it wasn't even discussed. It was just straight into my file. And yeah it's just been very disappointing. Basically my experience I've had two really really be one their case in terms of appointments and how I'm feeling, how distressed I’m feeling
People talked about a clash between expectations, hopes and the reality of the service. Ari said they were expecting questions such as ‘when did you start feeling this way? How do you experience dysphoria?’ Whereas in reality the questions felt ‘very check box.’ They were asked more direct and practical questions such as ‘Have you changed your name legally? Have you changed your passport? Have you changed your driving license?’
Summer talks about her experience of answering questions at her first NHS GIC appointment ‘you have to tick a certain number of boxes’.
Summer talks about her experience of answering questions at her first NHS GIC appointment ‘you have to tick a certain number of boxes’.
Once I actually got there to the appointment it was, you know, there were instructions to get there and it was fine. It was pleasant. The clinician who spoke to me was very pleasant and respectful on the surface of it. The thing is, I know how this works and I know that you have to tick a certain number of their boxes and you have to get through a certain amount of stuff and so I was giving the longest answers to the shortest questions where the guy would ask me something about, what’s your gender history and I realised five minutes later, I’m already talking about my penis, you know. Because I know that we have to cover that, don’t we, you know? I kind of oh, it came up very naturally in conversation that he asked me, do I use my penis in sex. But, I think he was always gonna ask that, you know? And it’s really none of their business. And so that, so the experience was actually was pleasant and he was a pleasant guy and we had a nice conversation. But there were these questions that shouldn’t have been there and. You know and there were things like where he didn’t know what non-binary was. Like he kind of you know, he said, ‘Oh well, so your partner. So you, you know. I’d mentioned about some of my sexual history about fancying men or women or whatever. So, and your partner—kind of as way of conversation and he was like, ‘Oh and your partner at the moment is a woman.’ I’m like, ‘No, I told you earlier they’re non-binary.’
But and you know and he was like, ‘Ah, but born female, I’m like assigned female at birth, yes, but that’s not important because they’re non-binary.’ There’s like clinicians could do with a bit more a bit more education like the actual bedside manner, not bedside manner, but the manner, great for this particular clinician. And I had a good time and he made me feel relaxed, but, but they need to really separate out the sexuality stuff and realise that’s none of their business. And, and yeah, just learn what non-binary is, really and [Laughs] like yeah.
Henry says in light of his expectations of the NHS gender identity services, they have been ‘pretty good’.
Henry says in light of his expectations of the NHS gender identity services, they have been ‘pretty good’.
For what they are, and for my in light of, you know of my expectations of the gender clinic and what they are, my experiences with them directly, when I’ve been in the room have been pretty good. So the clinicians I’ve seen, I think I’ve seen an array, and they have all been I think in contrast to the GP’s that I’ve had, I’ve never had to fight for anything when I’ve got in the room, I never, never had to explain anything beyond what I’d been expected to explain, I’ve always been made to feel comfortable, and I’ve always felt listened to.
And that’s been really important. I think outside of that, it’s been more challenging, so where, I guess when, when you’re in the room with them they give you their full attention, they give you and they give you support and they give you exactly what I felt I needed. But then outside of that room trying to co-ordinate things with them has been really challenging. And that’s something that I think potentially, not that I want to point out their flaws cos I’m just forever grateful that they exist, but that needs work.
So I know at the moment it’s a struggle to even speak to somebody on the phone, over the past kind of year, so I’ve, again trying to get on, get away from Sustanon, cos the last, the last appointment I had last October with a clinician at the gender clinic they said, “I can’t believe you’ve been on Sustanon for two years, you shouldn’t have been on this for two years.” So, I’m like, “Oh my goodness, okay, I need to sort this out.”
So I they, they kind of gave me a list of things to do and I went away and did them, I got my blood test sorted which I obviously had to send to them, cos my GP didn’t want to. And I had to sort all of, all of this out and, but then actually getting hold of someone at the gender clinic has been really, really difficult, and time has gone by now, where so I needed an ultrasound scan for them to sign off on me switching, and various different things like that, and because that’s all taking time, obviously the current situation and Covid 19 taking that into account as well, I’m now at a point where I’ve done everything they’ve asked me to do, but my blood tests are out of date, so they’ve now come back to me and said I need to do my blood tests again.
So then that, that’s why I’ve been for one this morning, so that’s shifted back again and it’s, I feel like I’m going to be at my next appointment in, you know maybe, I dunno, it would have been six months but probably a year’s time, and in terms of my hormones, nothing will have changed, well I’m hoping something will have changed but potentially nothing will have changed and the fact that they then, so I think they tried to get in touch with me a couple of weeks ago to discuss, to tell me that I needed to get more blood tests and they rang me twice in the space of five minutes while I was at work, I didn’t have a number I could call back, and they basically left a message and said we’ll write to you. So I then had to wait for a letter, thankfully they’ve sent me an e-mail, which is good, and I think about time, they’ve just shifted onto e-mail, so I had to, I had to wait for the, for the email for then for them to basically tell me that I need to go and do my blood tests. And I’ve got no way of then getting back to them, and even though I can I can leave the voicemail messages saying please can somebody get back to me, I’m sure there are thousands, millions of voice mails like that, and I appreciate the stress that they’re under, but yeah, that communication again is missing, and it feels like there’s a lot of onus on, on you as a person to sort things out. Which is exhausting.
So, the gender clinic, generally, when I’ve been with them face to face, they’re great. Outside of that not so much. And I think as well, you know the space between the times when I see the gender clinic, often things have happened and they’ve, they’ve got no idea what’s happened in between, and a couple of times as well, so you know I’ve, I’ve had to try and communicate with them that for example I’m looking into getting a gender recognition certificate now and I know that I need a psychiatrist from that team to provide some evidence. I’m in the phase now of contemplating trying to contact them to ask them for that piece of information, because to be honest trying to get that before I see them face to face again, I think it’s just going to be such a mission I might as well just wait until I see them again. So that’s, that’s my frustration really with the gender clinic, and I get there are rational reasons for all of those things, but it doesn’t make it any less frustrating, I guess, so.
Tyra moved to NHS care from private care and was impressed by the number of resources available, ‘it was a lifeline.’
Tyra moved to NHS care from private care and was impressed by the number of resources available, ‘it was a lifeline.’
I feel like it was good that I had a black woman to speak to, who had been around other trans people, like because it was a trans service I felt like, it wasn’t like going to the doctors and being told, “Oh no sorry, can’t do anything.” They, they had options and solutions like, I was very thankful for [name], like she was a very, she was a great woman, like it was different to, with the private doctor it just felt like that was me trying to access something, really with no outcome to it, like I didn’t know what was going to happen. Like what I was going to go and see a doctor, get hormones, and have surgery. Like that was the goalposts that I was setting to myself.
But when they accessed, accessed the NHS like yeah there was alternative things, they made me aware of like voice training, like groups that was around the UK that was doing like trans outreach stuff, like they just had so many resources, that in itself was actually like it was a lifeline.
They also talked about barriers they experienced that delayed their progress to starting hormone therapy. Jaz said she ‘turned up [to the GIC] with the expectation [thinking] if this goes well, we’re giving you a prescription’. However she said ‘because I didn’t have a life plan, [the GIC] were like, “Oh, you don’t know what you’re doing with your life. So, we’re going to delay your treatment.” Jaz felt this was unfair because she was finishing university and was unsure of what to do next.
Bay talks about their experience with the NHS GIC as a non-binary person.
Bay talks about their experience with the NHS GIC as a non-binary person.
I’ve found my experience quite positive there I guess at the moment. They, you know there was definitely both, both the people I’ve seen there have been quite open in saying, “Okay this is, you know non-binary people and, and their experiences are something we’re, you know we’re quite quickly adapting our systems to now. And so there was, you know certainly, I guess my worry, my only anxiety going into that first GIC appointment was that I was still reading things online that said that GIC’s weren’t geared up for non-binary people, that I’d face a lot of barriers, and stuff like that. So actually, so to hear those two people both say you know we acknowledge that there are limitations to the way we do things and we are actively changing things at the moment, made me feel a lot more comfortable about that. Cos, I thought this, okay this, in for me, in this clinic, it doesn’t feel like this is going to be a barrier to, to me moving forward in any way. So from that perspective I haven’t perhaps faced any of the barriers that I thought I might, going into that.
People talked about their experiences with practitioners at the NHS services. Some felt that they had a good relationship with their clinicians over the course of the sessions. Tyra was grateful to have a black female practitioner at their GIC. They said, ‘it was good that I had a black woman to speak to, who had been around other trans people, like because it was a trans service’. They said, ‘she was a great woman …I just felt like she understood the issues that I faced’.
Noelle talks about her GP not allowing a referral to the gender identity services without seeing a psychiatrist.
Noelle talks about her GP not allowing a referral to the gender identity services without seeing a psychiatrist.
Saw the GP in February, early February 2017 to ask for a referral to the Gender Identity Clinic what I found is that [clears throat] he wouldn’t give me the referral unless I saw a psychiatrist first because I had read online about what was absolutely required. I knew that wasn’t necessary. So, I decided to go for a second opinion. What I found is my second opinion didn’t know anything about it. So, they went to my first opinion doctor for a second opinion. Because this has all taken place like multiple [clears throat]. Because this had gone on like multiple weeks, multiple appointments and I was training to be croupier in the casinos. I just got, got exhausted by it and I was just like, fine, show me the hoops and I’ll jump through them. They referred me to a psychiatrist, but it was a telephone appointment rather than a ‘in person’ one, which never happened to me before. And I thought it was quite odd ‘cos it’s something at least you’d think it was something that you’d want like quite, if you are gonna do a psychiatrist’s assessment, you’d want it to be in person where you can get like a full impression of someone.
Anyway, the telephone appointment comes around and I call at the designated time and the nurse picks up says he’s too busy right now. Call back in like fifteen, twenty minutes. So, I do that and the nurse picks up again says, the psychiatrist has handled the case and sent it back to the GP. I was thinking, what’s the point in a psychiatrist appointment if they are not gonna see you or speak to you. But I also naively assumed that because he just sort of handled it and sent it back so casually, it was because he knew he didn’t need to do anything with it and it could just be sent onto the Gender Identity Clinic, anyway. Went back to the GP in a couple of weeks and they said they had received nothing from the psychiatrist which was disappointing. But I thought maybe it’s just stuck in the bureaucracy, the system, maybe. And I again naively assumed that my GP would contact me with the results. Two months pass, still no contact at this point I am quite frustrated because I already knew how long the waiting times are and I know the sooner I get on it the better. So, I go back, he says, he got the letter two week two months prior and so not long after I visited them and the psychiatrist had advised them not to refer me to the Gender Identity Clinic, which was just bizarre. Again, this person hadn’t seen to me. Hadn’t spoken to me. And decided all on their own that I wasn’t fit for a referral to the Gender Identity Clinic which again by NHS standards shouldn’t even be required. So, like I started tearing up in the GP appointments, because I was not only angry that it’d been rejected, but I was angry that the GP hadn’t even told me it’d been rejected. And because of that response, the GP sort of begrudgingly gave me the referral which was just eye rolling because they could have done that in the first place. So, that was August, I think, August 2017. So, if you think I’d gone for the referral in February and I got it in August that delayed my entire referral by what like five, six months which as we know now, waiting times that are like a year and a half at the earliest and up to like two and a half, three years for some services.
Communication and correspondence with NHS services
Some people felt NHS services were difficult to contact and there was a lack of communication about appointments. Theo said it’s ‘impossible to contact the [GIC]’. Sally said the administration of the service was ‘a mess’. She said ‘they deal with more people than they can handle, and things get lost.’ Summer said the NHS services ‘send you a letter in the post, which is not great.’ She felt that a text or an email would be better particularly as she moved house each year as a student. She said she felt anxious at them not recording her new address and getting discharged from the service due to not responding to missed letters.
Other people were satisfied with the communication from their service. Sophie said ‘I have had very limited phone conversations [with people at the NHS service], but people I’ve spoken [to] on the phone have been very helpful and have explained things very well.’ Sophie thought ‘their website is fairly good, fairly easy to understand. It’s not brilliant, but it’s fairly good.’ CJ felt that his service was ‘really good with keeping on top of contacting patients’. His experience was that the GIC contacted patients and answered emails in good time.
Max shares his experience of the slow progress with appointments at the NHS service and a lack of updates.
Max shares his experience of the slow progress with appointments at the NHS service and a lack of updates.
I had my appointment with the [GIC] in 2017, so almost three years ago now. I haven’t been seen since. Still waiting for the second appointment of officially being diagnosed, yeah. It got that dire. I’ve been always contacting them constantly like every few months, wanting to get some updates. But every time I do it, either they don’t give me any proper details and they just ask to refer to the website and the website, the website only says to wait X amount of time for your first appointment, but I’ve already been seen. So and yeah, I’m supposed to have someone to have like a case worker in between. Yeah, a case worker in between. But she cancelled on me twice and I did ask and left her an email and I still haven’t got a call back.
Communication with the service was important for a number of reasons. Some people wanted help from the service with progressing applications recognising their gender identity. Noelle talked about asking the NHS service for a letter to ‘get the F on my passport.’ She also wanted help with getting a Gender Recognition Certificate (GRC)*3. You can find more information about applying for a GRC on the GOV.UK website. She had heard that the NHS services could ‘provide a letter saying the change is likely to be permanent’.
Communication was most important for accessing hormone therapy and getting prescriptions for oestrogen or testosterone. Some people talked about their frustration with the communication between the NHS services and their GP when it came to issuing a prescription. Declan said ‘It was a bit annoying waiting for the gender clinic to communicate with my GP and then it took me asking my GP if a letter had come through for them to give me a prescription.’ He said ‘a lot of it is just me nagging the healthcare system trying to get what I want.’
Summer talks about her experience moving from private healthcare to NHS care with the NHS services.
Summer talks about her experience moving from private healthcare to NHS care with the NHS services.
So, this first appointment was half of my assessment. So, I have [Laughs] the second appointment in a year and that’s when I get the diagnosis and that is when the GIC write my prescription. That is when they take over my hormone care. Even though I turned up to them and I was like so yeah, I’ve been living full time as a women for two years now. I’ve been on hormones for a year. Here’s my gender history. “Oh okay, we’ll take over your hormone treatment at the next appointment in a year.” Like, I mean in my case, at least it’s like well, I’m not gonna die. I do actually have a supply, you know, of the—but no, because in that meantime I’m now gonna have to pay another £250 for another appointment at the private clinic and so they’ll keep treating me. You know, it’s just rubbish. Like, one a year, yeah, it’s usually and that’s what the guy said to me, it’s probably like a year’s waiting time and it was, until very recently, I think six months or nine months was standard in between appointments. So, should be a year plus inflation, right, [Laughs] for my second appointment and then also there’ll be some speech and language therapy session I think maybe a year after that, the consultation for surgery, which will probably be the orchidectomy, but who knows.
Concerns about power and gatekeeping
People raised some issues they had with how NHS services were run and what improvements could be made. Some said they were unhappy A key concern was the levels of gatekeeping within NHS pathways and the power imbalance between patient and professionals (see ‘Diverse journeys and pathways’ and `Experiences of GP surgeries’).
Young people expressed that they were dissatisfied with the current system. Theo said ‘The current state of trans healthcare is appalling.’ Summer said, ‘I feel frustrated.’ ‘I don’t like that [the GIC clinicians] have this power over me and that they can choose to prescribe or not to prescribe and you know they can choose to give me my trans diagnosis or not.’
H shares his experience of the process of NHS GIC appointments and trying to get signed off for top and bottom surgery.
H shares his experience of the process of NHS GIC appointments and trying to get signed off for top and bottom surgery.
and then I finally did get an appointment to discuss the top surgery and get my sign off on it. But again, once again, from the day I had the appointment to when the thing was actually signed, it was maybe a month or so. So I left there thinking that the referral would be done within a week and when I contacted them it still hasn't been done.
So what happened there was I had a date. So basically I then got a consultation with the hospital where I was due to have my surgery and they gave me a surgery date but unfortunately that originally date fell through because of Covid. So I was kind of left just to sort of take each day by day. Until one random day I got a phone call saying that they can do my surgery within the next 5 weeks. So my original date was meant to be in May 2020 and my actual date that I had it done was August, August the 28th I believe, 2020. And the thing that I always say is if they, if my gender clinic didn't sit on that referral for that month, I would have had my surgery before the Covid situation. So I do feel like my gender clinic does you know hold me back quite a lot. And obviously since I've had the top surgery, with me, because I want bottom surgery. Cause I’d said that from the beginning. I told them I wanted the full works. I had to once again be on the case to get an appointment to discuss the bottom surgery. But they were saying because of Covid they can't see anyone face to face.
Now obviously I'm in a Facebook group there were people who said that they were getting zoom calls to discuss their referrals. So I asked them about that, they told me they're not doing that anymore and yeah once again I had to really push for it. I managed to get an appointment and they have signed me off on the bottom surgery. But once again I went, when did I go, I went end of June, I think it was for that appointment. I saw both of the doctor's to get the sign off on that day. And then maybe a few months later, because I hadn't heard anything, I obviously checked in and it turned out that the, it wasn't signed until maybe a month later once again. So the thing is with this sort of thing a month is everything, a month can set you back years on the waiting list.
Concerns often related to whether the young person conformed to traditional ideas and norms of gender (see Changing names, gender expression and appearance). Cassie felt that there was a distrust within the trans community of cisgender professionals in positions of power in healthcare. She said ‘I constantly feel like I have to justify my existence to cis [gender] healthcare professionals in general.’
Noelle said ‘Unfortunately, I hear from a lot of trans people that they’ve had bad experiences even within the NHS GIC speaking to doctors who don’t seem that well informed or [are] a gate keeper.’ Ezio said ‘One of my friends went to their initial appointment and she got told that because she doesn’t come across as massively feminine that it would be a problem.’ He went on to explain that ‘the way she dresses is for her own safety because a lot of her family don’t accept her and I think she’s very afraid of being attacked.’ He said it’s like ‘telling a woman, you’re not a woman until you walk like a lady, look like a lady, act like a lady, it’s very strange’.
Max talks about the balance of power at the NHS GIC services ‘I have no control over anything’.
Max talks about the balance of power at the NHS GIC services ‘I have no control over anything’.
A lot of times I feel like everything is out of control, like I have no control over anything, really. I mean, it’s not so much with GPs but it is with the GICs definitely. Even just basic, basic information like, okay, what number am I on this waiting list. Like I don’t even get that or even like, okay, can you just give me like a rough estimate. I don’t even get that. So, literally in the dark like I have no idea what happens next. Like the GIC is like, okay, I’m in the system and that’s about it. And if one of the admin makes mistakes, you know, there’s people who slip through the cracks and they have to start all over again. So, yeah, I think there is a big balance, imbalance of power I would say.
Some people had messages of support for other trans people navigating the system. Jaz said ‘The more power you can build for yourself in terms of like your own knowledge and what you need, and the confidence you can pull that off with, it’s gonna improve your experience in terms of like what you get and what they give you and how fast, and if they delay your treatment or not.’
Other people wanted to share their messages with healthcare professionals. Sophie said ‘I was very nervous about the appointment, because of the fact that [the NHS practitioner] in the first appointment holds a lot of power over being able to start the transition process’. She wanted practitioners to ‘understand that it is stressful having to deal with when you are effectively being the gatekeeper about whether someone is transitioning. And, therefore holding the keys to potentially their future happiness as well and being able to have a meaningful, good, life.’
M says there is a ‘major power imbalance’ in trans healthcare that is ‘harmful on so many levels’.
M says there is a ‘major power imbalance’ in trans healthcare that is ‘harmful on so many levels’.
Yeah I think that there is like a major power imbalance especially given the power imbalance is with people that don’t know anything about Trans people or about transition yet they’re allowed to hold the keys and for the most part they’re cis. So yeah I think there is a major power imbalance and I think that that power imbalance forces a lot of Trans people into a position where you just have to like just live on the like how can I, which one is it the, I can’t remember if it’s defensive or offensive, I don’t know, but it just makes you, it just makes you live in a place where you’re always having to legitimise yourself to a healthcare professional but in their frame of what Trans people are, as opposed to like your truth or your understanding of what trans people are or of your experience and it just creates like this like self-perpetuating cycle where you’re holding Trans people in a place that is like immovable and you’re not allowing like for fuller understandings of Trans experiences because we all have to adhere to this one narrative if we’re going to get access to the things that we need access to. And so I think it’s just so harmful on like so many levels.
See also:
Experiences of Gender Identity Development Service (GIDS)
* The Gender Clinic accepts referrals for patients who are aged 17 years and older onto their waiting list. Accessed at https://gic.nhs.uk/referrals/
*2 Gender Identity Clinic [London], 2021. About us. Available at https://gic.nhs.uk/about-us/
*3 “A Gender Recognition Certificate is a legal document that changes the gender listed on your birth, marriage and civil partnership certificates, with effects on your pension, prison and marriage rights.”
Gender Construction Kit, 2021. Obtaining a GRC. Available at https://genderkit.org.uk/article/obtaining-a-grc/
https://www.gov.uk/apply-gender-recognition-certificate