Twenty trans people were recruited from SELPHI, which included seven trans women with a mean age of 40 years (range 25–57), and 12 trans men with a mean age of 34 years (range 21–54), and one non-binary trans masculine person. In the sample 80 % were white, 45 % had a degree or higher. Three quarters (75 %) of the participants lived in the south of England (south-east, south-west, east, and London). Table 1 presents sample demographics. All but one participant had accessed a GIC and the participant who had not was currently on a waiting list at the time of interview. There was a broad range of experience in terms of when participants had first accessed GICs, with some participants having first accessed GICs very recently, and several having first accessed them 10–15 years ago. In what follows, we present results along the care pathway, initially describing trans peoples’ experiences with GPs, experiences of referral to GICs and, finally, experiences of GICs. Our analysis, presented below, focuses firstly on experiences in primary care, then described participant accounts of referral processes to GICs and finally described experiences of transition related care.
Experiences with primary care physicians (GPs)
Participants described various experiences with their GPs, with some having positive experiences and supportive relationships with their healthcare provider, and others feeling that their care was lacking or unsupportive. Accounts of positive experiences with GPs typically revolved around the provision of care which was felt to be appropriate to their experience, was responsive and which treated the patient as a whole person. Being treated as a ‘whole person’ meant not being reduced to one element of their experience, such as their trans identity. Negative experiences were often perceived to arise from GPs’ lack of knowledge or experience of engaging with trans patients. Some participants experienced care in which their trans identity was seen as either a distraction, cause, or obstacle to receiving basic care. Barriers to good care were also evident when GPs had a negative reaction to disclosure of gender.
Some participants reported having paid to access private GPs specialising in trans health (sometimes online), allowing quicker access to transition related healthcare. This included accessing bridging prescriptions of hormones prior to being placed on a waiting list for specialist services:
“… once I had seen them [GIC] and got assessed I had to wait a year to actually get anything from them so that was less good, but in the meantime, I was waiting I went to a private GP and got hormones.” PN20 (aged 49, trans woman).
Although it may be assumed that such divergences from standard practice might complicate or cause problems in accessing care elsewhere, some interviewees described their GPs attempting to work around and respond to their needs, including the prescriptions they had acquired privately. For example, the interviewee quoted above went on to describe an NHS GP taking on the responsibility of prescribing hormone replacement therapy which had initially been accessed online. Speaking about their GP, they recounted:
“They have been … they’ve been absolutely amazing. They really have. When I managed to get onto the hormones with the online clinic, and I was doing my blood tests with my own GP […] and I said, “Look, you know, if you possibly could prescribe?” And she said, “I don’t know. I’ll look into it.” And that took several months, going backwards and forward, but eventually she came back and said, “Yeah, I apparently can, the only thing we can’t give you is the creams to slow down hair growth.” And I thought, “That’s not really a problem, I’m getting laser, so…” So, they then took over prescribing and they’ve been brilliant.” PN20 (aged 49, trans woman).
Although this back and forth took longer than may have been desired, the interviewee’s GP not only took on this responsibility, but also demonstrated a willingness to see what was possible, while also pre-empting other kinds of treatment that may be sought by their patient. While for the interviewee above, good care involved being listened to, and the GP having a willingness to learn and find out what might be possible in terms of treatments. For others, good care came in the form of experience of and knowledge about treating other trans people. As PN17 below describes:
“So, I picked the practice and luckily, I’m not the only trans person there, they know what they’re talking about. They’re very confident with hormones, they’re not constantly going, “You’ve got to go back to [GIC], you’ve got to do this, you’ve got to do that.” […] I’ve done it before; they know how to adjust my levels and things like that. […] But I’ve been very, very lucky with my GP, very lucky, they have been so good. I’ve seen like four or five different GPs at the practice and I know which ones to sort of go to for certain things because they’re just better at understanding that” PN17 (aged 22, trans man).
This experience also speaks to a need to actively navigate healthcare services, as even though PN17 has found a GP practice that meets their needs, they still need to request the GP most experienced in managing the needs of trans patients.
Across the interviews there was also a broader appreciation of the value of GPs expertise and an ability to respond to the needs of their patients. This skill and knowledge may come from their training. However, having pre-existing knowledge was not the only way in which GPs were able to deliver good care. That is, this was not only in relation to what a GP knew already. It was also important that a GP appreciated the importance of language and was willing to follow the lead of their patient. As PN14 explained:
“He’s followed my own language, about how I would describe my body, he’s used the same language, and that kind of stuff is so important I think.” PN14 (aged 48, trans man).
Here, good care is expressed as a sensitivity to the importance and subtleties of language, as well as a willingness to take the patient as an expert in their own body and experiences. Elsewhere across the interviews, good care was expressed in a variety of ways. As PN09 below describes, this includes an attentiveness to the whole person and the overlapping elements of health and wellbeing in relation to, but also beyond, gender transition:
“It was that she just gave a shit which is the most important thing. And she put me on [named antidepressant] which was new. New for me and not a thing I’d ever expected to take. But it helped enormously. And she kept a really close eye on me. Remembered what I’d said to her in previous appointments. I never felt rushed. Yes, she was really good. Just all the pastoral stuff, really, that really matters. And once I went on T[estosterone] and had different things like a skin condition at one point, she wasn’t blind to how my mental health and my transition and other aspects of my health interacted. And she saw me as a whole person. It was a holistic experience.” PN09 (aged 26, trans man).
In stark contrast, some participants described experiences with GPs where this had not been the case. For example, PN15 discussed an experience in which he felt that his healthcare provider was only able or willing to take into account one element of his experience at a time:
“It’s very frustrating because everywhere you go, they want to bring up the trans thing, literally everywhere. Or if they don’t want to bring up the trans thing, they want to bring up like … because I have [health condition] and they want to bring that up every time and then somehow pull out all these trainee physicians out of nowhere. And you’re just like, “Can I just have a normal appointment without a million people appearing in the room?” PN15 (aged 51, trans man).
While PN15’s experience above was of healthcare providers either focussing only on his trans status, or completely avoiding it, PN11 below describes how her GP was so shocked at her disclosing her trans status that she didn’t feel able to take it further:
“It took years longer than what it should because with my first GP, you know when I was broaching the subject and stuff and they were flabbergasted and I was just like, “Oh, it doesn’t matter,” you know, and just left it” PN11 (aged 30, trans woman).
Breaking through the initial barrier of having to disclose one’s trans status to a GP may take a long time, and first attempts may be undermined by GPs who are not experienced in treating trans patients. While earlier we described positive experiences with GPs as either having prior knowledge or training on trans issues or a willingness to learn, these negative experiences further underscore the importance of GPs’ education on trans health issues, collaborative medicine, of taking trans patients as a whole person into account, and of the negative effects of poor care.
Referrals to GICs
Positive accounts of acquiring a referral to a GIC arose from experiences with well-informed GPs with a good awareness of pathways and processes. However, some participants reported that gaining a referral to specialist gender services was fraught with difficulty. The experience of waiting was profoundly difficult for participants, made more so with inaction on prompt, and timely, referrals being sent to GICs. Participants also reported a lack of clear information about the process itself that can be easily accessed when requesting a referral.
Participants also described GPs who were poorly informed about pathways and referral processes and having undergone unnecessary interim referrals to mental health services. Where participants had positive experiences, this was most often in the form of straightforward and relatively frictionless referral processes which avoided these additional complications, and in which individuals received good care.
Echoing some of the experiences described in the previous section, PN01 described how, although her GP had never made a GIC referral before, he had taken the time and effort to find out what he needed to do and, as a result, she was granted timely access to services:
“He turned round and he sorted everything I needed, including writing a report and sending me to where I needed to go. Although he had never done it before, he made the effort to find out all the pathways and everything, where I have to go and what I have to do. He gave me all the advice he could” PN01 (aged 56, trans woman).
For some, this process was not nearly as smooth. Where little was known about the process beforehand, interviewees accounts highlighted how asking their GP for a referral required what can be understood as a significant leap of faith, including in relation to concerns about whether they would receive a positive response from their GP. As PN06 describes:
“I think I was nervous ‘cause there wasn’t much information available about what the process was like and then you don’t know what they’re going to say to you. If they’re going to agree with you. But even the people, even though they’re… you kind of worry. And then obviously the long wait.” PN06 (aged 28, trans man).
Here, not knowing what the referral process would look like left PN06 feeling unable to anticipate his GP’s response to his request. While this may be a barrier to acquiring a referral, PN02 below describes how, even once this initial barrier is overcome, asking for a referral is not necessarily a one-time event and may require several attempts, adding more time to the wait for specialist services:
“Oh, it was awful. I went three times to my GP before I actually got the referral and even then, I didn’t trust so I ended up having to ring the GIC just to confirm it. ‘Cause I’d asked for the referral two or three times but the first time they just didn’t do it.” PN02 (aged 24, trans man).
As well as raising significant questions with regards to the need PN02 felt to follow up and ensure that a referral had been sent as promised, PN02 attributed this situation to his healthcare provider’s lack of knowledge about the protocol for referring patients to the GIC:
“I honestly just didn’t… I don’t think they actually knew what the protocol was. I think they were just guessing. I think the first time I just don’t think I was clear enough that that’s what I wanted. The second time, obviously, they tried to go a different way about it, saying I needed to see a mental health person first. And then the third time, I just basically came in with all of the information. Told them what to do.” PN02 (aged 24, trans man).
On all three occasions that PN02 had tried to get a referral, different requirements had been placed on him, a situation he attributes to his GP’s lack of knowledge about protocol.
All participants discussed an initial wait for secondary mental health services (most often, a psychiatrist) prior to the further wait for GIC services. Before a referral to a GIC was to be initiated, for example, PN16 experienced delays in referral due to the requirement to see mental health professionals beforehand. This requirement was imposed by his GP unnecessarily due to what PN16 perceived as a lack of knowledge:
“He didn’t realise, actually, at the time that he could refer straight away. So, he referred me to the mental health services. And I saw a psychologist and he said, oh, your GP could have just directly referred you” PN16 (aged 51, trans man).
Not just a matter of inconvenience, long waits for referrals to be processed can have significant detrimental effects. For example, below PN01 describes the profound impact on their mental health and their consequent responses to poor care and lack of access:
“Eventually I tried to castrate myself and the hospital turned around and said, “No, you’re nuts,“ and sent me to a psychiatrist, which then sent me to the gender clinic. If my GP had done stuff, it would have been a lot easier process if you know what I mean. PN01 (aged 56, trans woman).
These experiences demonstrate the need for timely referrals, especially to GICs, where long waiting times are likely to be experienced. The above shows the need for many trans people to ensure their referral has been secured and processed. This may amplify the anxiety surrounding the probability of a long wait time. Whilst willingness to learn and educate oneself is a sign of good practice, better care quality needs to mitigate anxieties experienced by trans people through strengthening awareness and education on referral procedures for all healthcare providers.
Experiences at the GIC
Narratives of quality care at GICs revolved around a feeling of confidence that participants were understood and believed by healthcare providers, and that they were not subject to unnecessary referrals (predominantly to mental health services, as previously discussed). Good care was thus expressed primarily as a matter of everything ‘running smoothly,’ and of a feeling that GIC healthcare providers were understanding of their needs and of process and protocols. Negative experiences often described the expectations of GIC healthcare providers that patients should conform to dominant narratives regarding the gender binary (in hyper-feminine or masculine manner) in order to access gender affirming support. This led to participants both feeling that they were not being fully understood, and also feeling that they had to perform gender in particular ways in order to receive good care. This need to perform gender in ways felt to be more accepted by GIC healthcare providers also had the effect of precluding the possibility of these providers fully understanding their patients, which may have also led to a more nuanced understanding of gender expression and identity.
Positive experiences tended to include participants feeling they were able to be open about their sexuality, gender expression, and gender identity without being doubted or needing to present themselves in particular ways to get the care they needed. An example from PN18 exemplifies what a positive experience might look like, and in which he felt heard, cared for, and confident in the care that he was receiving:
“I felt very heard and very believed and like I was in very capable hands. Like it was still a long process in terms of I had to wait a couple of years for waiting lists to go down. But it wasn’t so long in terms of complications, it would just be like a couple of appointments they’ve heard what they needed to hear and now they can pass me on to the relevant services. So yeah, overall just had a really positive experience with [GIC], and doctors were very understanding, again, none of them tried to like equate my transness with my mental illness.” PN18 (aged 20, trans man).
Negative experiences of GICs were often, at least in part, the result of normative assumptions of healthcare providers regarding gender and sexuality. For some, this was a result of requirements of having already made a ‘social transition,’ prior to medical and/or legal transition [27]. Also referred to as ‘real life experience’ or the ‘real life test,’ this requires that a trans person lives in their affirmed gender role for a period of time before being able to access services [28]. Below, speaking of their experience over 15 years earlier, PN05 highlights how this process was often also informed by narrow views of gender-appropriate styles of dress and presentation:
“Yeah. Because at that time, the gender identity clinics were still following quite a cis-normative process where you have to dress looking like a man, you know, you couldn’t be fluffy. The women had to dress like women and look like women and look like they’d be successful passing as women, and it was very much like that then.” PN05 (aged 52, trans man).
As well as having to dress in ways felt to conform to healthcare providers’ assumptions regarding gender expression, trans people may share with them the kinds of stories felt most likely to result in the care they need. This also has the negative effect of obscuring the full picture and spectrum of trans lives for the medical practitioners responsible for their care:
“At the time, it was very much known that you didn’t talk about being gay, so, all trans-people at that time shared what their experiences were, so basically all the gender-identity clinic that were getting was the same trans story from every trans person because we knew that worked, they weren’t actually getting a picture of what real trans lives were like. But I know that’s changed gradually over the years as they’ve realised, and that we were just telling them… Basically I just told them what they needed to hear, because I knew what I needed.” PN05 (aged 52, trans man).
PN09 similarly described how they had learnt to behave and present themselves in ways which would be more likely to align with the assumptions of their healthcare providers and, as such, would increase their chances of receiving the care they needed. Referring to this as a matter of gatekeeping, PN09 describes:
“They’re not care providers. They’re gatekeepers. So, they’re just… You go up, you get asked, are you sure? Are you sure? Are you sure? And then they green light hormones and surgery and whatever. When I needed to get stuff from them, I would be very masculine for them and there’s certain things I don’t tell them and certain things I emphasise”. PN09 (aged 26, trans man).
These normative assumptions about gender further hindered access for non-binary people. As such, some participants who were non-binary chose not to disclose this to their healthcare providers due to fears of compromising care. This was sometimes experienced as a difficult balance. As PN08 (23-year-old non-binary trans man) explained this, they felt comfortable being open about their fondness for wearing make-up and feminine clothes but stopped short of disclosing their non-binary identity. As they put it, “I just didn’t want to push it too far.” Moreover, unsure that it was necessary to hold back this aspect of their identity, they did so anyway:
“I don’t think I discussed being non-binary with them ever, I don’t think.… I’m… I don’t know if that was… that I actually had to do that, but I just did that because I didn’t want to compromise my care.” PN08 (aged 23, non-binary trans man).
Unsure of whether it was necessary, the risk of having their care compromised was too great. It should be noted that this was not a matter only of disclosure, but also a felt sense of being observed:
“One thing I’ve noticed as well in appointment letters, and it’s happened with the psychiatrist as well, they use your mannerisms and your body language as evidence of your gender” PN07 (aged 23, trans man).
These experiences clearly demonstrate the impact of normative assumptions regarding gender, and also sexuality, within the GIC. This might be experienced as a pressure to withhold information, to perform gender in particular ways, or as a strong sense of being the object of surveillance.