Experiences of parents and carers of young trans and gender diverse people
The GP
- Supportive and understanding responses to their child’s gender identity and health needs;
- The GPs taking on elements of trans healthcare.
- Lacked knowledge and training about trans issues and the existing processes;
- Was unsupportive, prejudiced and/or refused care.
Jan felt the GP she saw with her daughter was dismissive and condescending in a way she felt they would not be about other health issues.
Jan felt the GP she saw with her daughter was dismissive and condescending in a way she felt they would not be about other health issues.
And we immediately went to our current GP practice I foolishly thought, of course, they'll help us immediately and I was, I was horrified with what we were faced with. So they referred us straight away to the Gender Identity Service which was good. Led us to believe that that would be quite quick process. When we'd spoke to the Gender Identity Service they said it's gonna be at least an 18 month wait before you even get seen. So we went back to the GP. I'd done lots of research, looked at the GMC guidelines that encouraged GPs to provide bridging medication if they felt able to. And that was the important bit, because that's a get out clause for them all.
Well, “We don't feel experienced enough to be able to do this”. So I had many a discussion with our current GP felt they were very condescending I complained, I wrote letters of complaint to the practice itself to the GMC, to NHS England, to the CQC, to our local commissioning group. And pretty much felt like I was getting nowhere. But, I think the attitude of that particular practice was just not acceptable. They were dismissive. They were condescending and I didn't like it at all and so I'd been talking with a friend and she said, there is another practice in another village that's kind of the other way from the first one. And she said, they, you know, they're really nice, well run practice. Why don't you try there? So I went to them and I said, ''Are you transgender friendly? I'm not moving if I'm gonna end up in the same position.'' ''Oh yes, yes, we are.'' So made an appointment and went in with [name of participant’s child] and again, the first thing we were told was, ''No, we, we can't provide you with any bridging hormones at all.'' So I found myself going down the same route again of complaining to the world wide news, only I went to my MP this time as well and said, ''This is wholly unacceptable.'' You know, at that time we had started with a private service, internet based service, because it was the only way we could get some kind of help. And probably took about three months, I think of having assessments, you know, psyche assessments and stuff for [name of participant’s child] to get her first hormones. But at least then she felt like she was on a bit of a, bit of an even keel because I think the hormones that were going on inside her body were kind of matching how she identified. But a, above everything her big concern was that she was losing her hair. Her hair was receding and that had to stop. Waiting 18 months, I mean, she could have been half bald by then. I mean, it was just unacceptable that you know, they didn't, they didn't respond to that, the health professionals. So I wrote to the lead partner in the practice and said, ''You need to, you need to think about doing this. This is not acceptable.'' So she invited us in and I took all the guidance I could find, all the information I was trying to be as reasonable and a, as balanced as I could in presenting that to her. Because I said, if something happens to my child because you will not treat her, I will hold you responsible. And I said, ''I feel like you're not treating her out of either prejudice or you're choosing not to, you know, when you've got the opportunity.'' And, she wasn't, she didn't like me saying that at all. She took offence at that. So I kind of had to just be, you know, I didn't want to get into a conflict situation with them. I was genuinely trying to persuade them to provide assistance. So she said, ''Well, we've got a practice meeting, we'll discuss it there.'' And we got a letter after that that said, no, we will not treat [name of participant’s child].
What was the reason they gave you?
They just said, well they said because we were using an internet service they wouldn't provide monitoring bloods for that. And they didn't feel they had the expertise to actually take over the prescribing, even though they are prescribing HRT for women, all day, every day. And it's essentially the same. So I was continuing to complain to all the bodies that I could complain to. And I wrote back to them and I said, this is a list of everybody that I'm complaining to about your practice. I would urge you to reconsider your decision and they did reconsider their decision. So she called us in and said, ''We genuinely don't feel able to do the prescribing ourselves, but what we will do is we will refer your child to an endocrinologist. Let them come up with a prescription and then we'll take over the bridging medication” and that's exactly what happened.
Ali talks about the positive support that she and her daughter received from their GP.
Ali talks about the positive support that she and her daughter received from their GP.
Well, just enabling the referral. That was good. And also if they have an accepting approach then that's great. And it's never questioned my daughter's judgment. It's, she's never been dismissed as “oh, you’re just a child don't know what your own mind. It's they’ve taken a role of saying that we support you. That we'll refer you to the specialist, because they would know more and yeah. And, they also did provide information as to accessing the mental health services, but obviously I already had that information from having gone to CAMHS initially [sighs]. I can't really—oh yes, they have also been very good about administering the injections, because that's something that makes you feel very nervous, because you've got to get them mixed and within something like 30 seconds—administer them in 30 seconds. And I've been worried about that if we were cut loose, I would have to administer those ourselves. And [laughs] that is so far we're okay and they were quite happy to do that. So that's been great. So from a medical point of view that's what I’d be looking for that sort of help and support. They've been good and they've done as much as I would expect. Yes, also my daughter has gone to talk to them about her panic attacks and how to deal with those. In particular at times when she hasn't got on so well with me, so it's good that they've respected her privacy because she wasn't over 18 at that point. They'd been able to give that positive support which is great. A certain degree of physical care as well as mental health care.
First contact and choosing a GP
For Interview 1 being the first point of contact means GPs have a very important role to play in reassuring parents. She talks about approaches in other countries.
For Interview 1 being the first point of contact means GPs have a very important role to play in reassuring parents. She talks about approaches in other countries.
They [GPs] are the first point of contact, usually. They can, I think their initial reaction can, could be really reassuring or it could be really dismissive. Again, I say, for younger kids. I don't think for my child she doesn't need to see a psychologist and certainly she doesn't need to see a psychologist after like a two year wait. So, I think if the initial contact with the GP was just accepting of gender diversity, I think that could really reassure parents who're really, really scared of getting it wrong. And I think if the initial contact with the GP – and, and there are some GPs who are enlightened. And I think that initial contact with a GP can make such a difference, cause if the GP can say, ‘oh yeah, some kids are gender diverse and particularly the message that is standard in other countries at that first point of primary healthcare, the message that's in the policies and recommendations from like you know, the Australian and the American Healthcare Service is they say to the parents at that point: it's not about predicting a destination, it's about making the child feel fully secure and accepted where they are right now. And it doesn't matter how they feel in a year's time. It doesn't matter where they eventually end up. It's about making them feel valid and normal and accepted as they are right now. And that's a really clear message that parents can understand and can go with. ’
Ross talks about positive experiences with his child’s GP and how parents need to do research to make sure the GP they choose for their child is supportive.
Ross talks about positive experiences with his child’s GP and how parents need to do research to make sure the GP they choose for their child is supportive.
Our experience there has been good on the grounds that our GP was supportive. I read through Mermaids that a lot of GP have no clue. So maybe they could do some education on gender issues. But in our personal case, we've had a very, very good GP. But again, it's down to research and before you register with a GP. Check before you sign up. If you've got a trans child, ask the questions before you register. And if you find that it's a transphobe running the surgery, go to a different surgery. You do have free will. You don't have to go to that one. Okay, it might be half a mile from your house rather than three miles, but it's your health and your child's health. So, do a little bit of research first and you can make life easier or hard, it's up to you.
What kind of questions would you ask a practice to—?
Immediately mine was black and white: Have you dealt with any trans, you know, patients in the past. What's your stance on transitioning patients? Have you had any training in trans issues? Are we likely to get a good response? Certain things, ours again was particularly brilliant on pronouns. When the, when you make an appointment and it's put up on the visual display unit. Would you like it to be Mr, Mrs or Mx and they had that option. But again, it's only asking before you register. You could ask the receptionist, do you have that as an option and if not, why not? I find that a lot with form filling as well, it's always male or female. It's always Mr or Mrs. There isn't very often an Mx option, which my child has found with employment, filling in employment forms, Mr or Miss. There's no allowance for transition. There's no Mx possibility, which is, is only another box on the form. It's not difficult to put into practice.
Supportive and understanding responses from the GP
Kate expected the GP ‘to not be great’, but found the GP to be very helpful.
Kate expected the GP ‘to not be great’, but found the GP to be very helpful.
I contacted the GP and, to be fair, I was expecting the GP to be not great. But she was really good. She we’d written to her first so that I could give some background without having to go through it all in ten minute appointments. So she had some of that background. And, obviously, she’d had previous letters from CAMHS and so on which had used his male name. But she was a lot better than I expected her to be. I was expecting it to be, to have to try and change GP. But she immediately wrote to CAMHS and got us that referral back in she prescribed my son the pill. She was fine. She didn’t make, she didn’t make specific reference to it to the fact that he’s trans. But that was fine, actually. That was fine because she just treated him as the person sat in front of him, rather than it all being about him being trans. So, actually speaking to the GP was fine, yeah.
Georgina knew that she could contact Mermaids if the GP was ‘non-compliant’ with sending the referral, but she found her son’s GP to be very helpful and willing to educate himself.
Georgina knew that she could contact Mermaids if the GP was ‘non-compliant’ with sending the referral, but she found her son’s GP to be very helpful and willing to educate himself.
It was with our local GP. I just trying to remember, I think I may have had a first appointment, actually, I don't think I needed a double appointment the first time, actually. But you can't pre book for a long time. It takes a while. So, we still had to wait maybe a week, thinking about it for that appointment. And then we discussed it with him he came with us, we went together cause he wanted to do the talking. He was so excited to start the journey. I did keep expressing that these things take a lot of time. There's a lot of waiting and all this sort of stuff. But he was very excited to tell everybody. He wanted everybody to know who he was. And we went down and had a little appointment just me and him with our the GP that we prefer at the doctors, cause there's one that is particularly lovely. And we just sort of said, what it was, we just said, he'd be, he's preferred to be called this now and we're not really sure where we go from here. However, I had, that evening, when he came out, I had gone on Facebook and just researched the hell out of the transgender support sites. So I'd already joined a support page and did know that I needed a referral to [Gender Identity Development Service]. And that if the GP was non-compliant, I need to contact Mermaids. So I did know that. But he was completely fine and said, ''Yeah, no problem at all. I am, I haven't got a great deal of experience in this, but I do have one other trans patient.'' I think they're grown up. He didn't, he alluded and since a little bit with when we discussed hormones and stuff. So I don't think he knew about the children’s services. So he said, ''I need to research it, but I think that's what we need to do.''
Interview 1’s GP helped her get her daughter’s passport updated. She felt the GP would be willing to support future shared care arrangements with a private healthcare provider, if that was necessary.
Interview 1’s GP helped her get her daughter’s passport updated. She felt the GP would be willing to support future shared care arrangements with a private healthcare provider, if that was necessary.
And our current GP is really, really good. She's been really supportive. She gave us a letter to get our passport updated, which the gender clinic had refused. The gender clinic had said, ''We can't update passports till after puberty, because she might change her mind about her identity'', which is just, I don't think they understand like even if she did feel differently in the future, why does she have to have a passport that makes her sad now like it just strange, their priorities are unintelligible to me. But the GP was like, ''Well obviously, she's a girl she's, her passport should say she's a girl'' and so the GP gave us a letter and we got her passport updated and she was really happy about that. So yeah, the GP's currently really nice and in a different world, I would be looking to see whether our GP would be willing to work with private healthcare, because in other scenarios that should be possible. And I think our GP would be really up for that. I think our GP understands the problems in the gender clinic service and she understands that other countries do it differently. And she understands that it would be, that there's harms in following the current gender clinic specifications. So I think as an individual GP she would be quite up for working with private healthcare. But I think her ability to do that is influenced by the guidance from like there are Royal College of GPs. And their recent guidance that came out like yesterday was just really negative and really did not give, does not encourage GPs to support their patients, it discourages GPs from supporting their patients, which is again, disappointing.
Taking on elements of trans healthcare
Lesley speaks about her GP being ‘exceptionally supportive’ and feeling ‘fortunate’ having secured a shared care arrangement for her son.
Lesley speaks about her GP being ‘exceptionally supportive’ and feeling ‘fortunate’ having secured a shared care arrangement for her son.
I think fundamentally we have been really fortunate that the GP and the whole practice has been exceptionally supportive of us. And that we managed to secure shared care. I am aware that not everyone is in that situation that their GPs doesn’t self-fund or have shared care or are not supportive in the way our GP is. It made a huge difference to the way I take my son in for blood tests or injections, the way they greet him, the way they organise his appointments. They always have movable slots for him. If he needs to see the nurse, they will make sure his appointments are first thing, so he’s able to come in first thing and then go straight to school. They will always ring up and say, “the blood test results are in” and give us paper copies. They have been amazing and it’s fundamentally made a huge difference to us. If only all GP practices were like this I think it would make so much of a difference I reckon.
Lack of knowledge, training and referrals.
Andrew emphasised that GPs need more training on transgender issues to be able to support trans children.
Andrew emphasised that GPs need more training on transgender issues to be able to support trans children.
What do you think is important for GPs to be aware of when working with young trans and gender diverse people? What would be useful?
Well I think to start with, I think they need to have it included in their education, so that by the time they come to be a GP they have some insights and knowledge into transgender issues for starters. And I wish, I wish that GPs would be able to offer a bit more support. When you go and speak to them about transgender, your transgender child they don’t really know what to do. They don’t really know what to say. I think they probably aren’t that many transgender kids in the population. So GPs don’t come across it maybe that often. Obviously, I think they’re gonna come across it a lot more in the future. But they just don’t see enough transgender kids to really get familiar with it.
Oonagh spoke about her GP’s lack of knowledge of the existing process of referral to the Gender Identity Development Service.
Oonagh spoke about her GP’s lack of knowledge of the existing process of referral to the Gender Identity Development Service.
And the referral that we wanted to GIDS he was going to take it to a panel to decide whether that was gonna be the case. So, I pursued it by getting advice from Mermaids and wrote them a letter and asked them to refer us and, then it happened. So he obviously wasn't aware of what he should do in that situation.
Was that the first time you discussed your child's gender identity with a health professional when you went?
Yeah, yeah.
Do you remember how that meeting was?
He seemed open to it. He seemed open. He was professional. He didn't display any prejudice or anything. But he, you could tell that he didn't really know what the process was or what would happen with a child and how the referral, what would happen with a referral to GIDS, yeah. So I don't think he, I don't think he's quite high up GP sort of on the [name of the area] level I think. At his level, I think he should have known a bit more about the process.
Jan felt that certain GPs are prejudiced against trans people – a problem that she felt was made worse by lack of funding and lack of more ‘prescriptive’ guidelines for GPs.
Jan felt that certain GPs are prejudiced against trans people – a problem that she felt was made worse by lack of funding and lack of more ‘prescriptive’ guidelines for GPs.
I think there's a number of barriers. One of them is prejudice so I think there's a lot of that within general practice. One of them is around experience, so they don't think they have the experience. And there's possibly something that can be done about that. If they, you know, if they're given the guidance that they would prescribe in the same way as they prescribe HRT then maybe that would be sufficient for them to feel like they can to feel like they can provide this bridging medication. Education, there's a lack of education for GPs around what transgender is and what care they actually need. So, I think there's a sort of awareness and maybe some patient pathways that could be could be drawn up that would say, well, actually, if you don't feel like you can do this, you could refer in this way and that may possibly also help, and funding as well. So one of the arguments I had with our first practice was that they said, ''We are not funded to provide your child with blood tests.'' As did the second GP practice actually. We are not, we are not funded to provide you with blood tests to monitor your, you know, monitor her hormonal parameters. And then in the next breath I was seeing a social media post from the second practice that was saying, ''Ah, free blood tests for everybody.'' And I was like, ah, yeah, the select few potentially, not for everybody. And I actually put that, It's very rare I would put something on…. Very rare I would put something on you know, social media that's not, you know, that kind of meaningful in that way. And they put a comment on it to say, ''This is not the forum for that, for this.'' And I replied to them and I said, ''Well actually, it is, because you won't listen to me in any other way.'' And it's from that point that's when they started to listen. So, yeah, funding is another one. Oh, and guidelines, sorry. The GMC guidelines are quite clear around providing bridging medication, but it gives them a get out. So, the minute they feel like they're unable to prescribe or unable to help they can just throw their hands in the air and say, ''No, I'm sorry you're just gonna have to wait for the, you know, the gender service.'' And I think that's wrong. So, I think GPs should have to take a level of responsibility for looking after their transgender patients without having that kind of get out. So, those guidelines need to be a little more prescriptive.
Unsupportive experiences, prejudice and refusal of care
The GP refused to refer Lisa’s son to Gender Identity Development Services leading her to complain about the individual.
The GP refused to refer Lisa’s son to Gender Identity Development Services leading her to complain about the individual.
We also went to the GP and asked him to make a referral. That was an awful experience. He was quite obviously unsupportive of our difficulties. He told us that he wouldn’t make the referral because the protocol was to refer to CAMHS. And CAMHS would then refer on if they diagnosed a gender identity disorder, which I knew to be incorrect. He wouldn’t, he wouldn’t listen to me. So I then had to leave the doctor’s surgery. My son said to me, ‘He doesn’t wanna help us, does he mummy?’ And I said, ‘I don’t think he does today. But I’ll make sure he does the next time I see him. Don’t worry about it. I’ve got it.’ And but then we had a battle with the GP to get the GP to make the referral.
When the GP refused to refer us, I contacted Mermaids who had sent me all of this information. And they said that they would refer us. So they did that, as I understand it. And I also made a complaint about the GP, to the GPs surgery about the treatment that we had had he didn’t even look at my son during the consultation. He didn’t speak to him once. It was really, it was really bad. And he obviously didn’t understand the process. He also, because we talked about hormone blockers in that consultation, he also said to me, in front of my son, ‘This is potent medication. This is a cancer treatment.’ You know, ‘this isn’t, not just any medicine. This is a cancer treatment’, which it is used for certain treatment, certain types of cancer, but it’s also used for to stop early pubertal development and you know, therein obviously for the purpose that we were asking about it for my son. So, I made a complaint about all of those things and the fact that the GP had been, had been mistaken in terms of the process that he should have followed. And as a result of that complaint, a referral was made then. But it took a lot of time.
When Jan complained about her GPs refusal to do bridging prescriptions for her daughter, she felt that they didn’t take it seriously enough.
When Jan complained about her GPs refusal to do bridging prescriptions for her daughter, she felt that they didn’t take it seriously enough.
It's more around and it's really hard to really hard to articulate. But it's the way they look at us. And the tone of voice that they use and the look in their eyes and I know, you know, it's it might sound daft, but actually to be sitting there under the kind of gaze that almost feels like it's bordering on ridicule is very, very uncomfortable. You know the first the first GP you know, very nice, soft voice and everything, but you could just see in his eyes it was just, it was not something that he was comfortable with at all. You know, he was keen to make the referral and just kind of get us out of there. And was keen not to really have, to have any involvement in any kind of bridging care for [name of participant’s child]. And then the clinical lead and so he suggested, ''Well if you know you've got a problem with this I suggest you write into the clinical lead.'' They gave me the name of the clinical leads. I wrote into that clinical lead. And he questioned why I was even bothering writing to him, because he hadn't, in this, the letter it said, ''I haven't seen your child for half a decade.'' It was like trying to make it sound better, that he hadn't seen my child for such a, such a long time. But that wasn't that the practice hadn't seen her. He personally hadn't seen her. So yeah, it, they almost didn't take our concerns very seriously at all. You know, had I been writing in about something else, I don't know having not dealt with a broken arm correctly or what have you. I do feel they would have taken that far more seriously than the fact that I was writing in about transgender care.