Experiences of parents and carers of young trans and gender diverse people
Hormone therapy
- Accessing hormone therapy;
- Choosing between private and NHS healthcare;
- Managing hormone therapy and what effects it has on the young person.
Accessing hormone therapy
Lesley felt hormone therapy was prescribed for other issues within the NHS, but there was ‘a level of gate keeping’ for trans people.
Lesley felt hormone therapy was prescribed for other issues within the NHS, but there was ‘a level of gate keeping’ for trans people.
One of the things, one of the frustrating things around the whole NHS system and the specialists for puberty blockers and cross sex hormones are, are provided and prescribed by GPs across the board for different reasons. So, and they don’t need to go to tertiary service. They need to go to a specialist service. In terms of the gender identity services that they can’t do that unless it goes through like a specialist provider, a specialist. And at the moment, because it’s all tied in with mental health that this mental health screening bit needs to happen first before young people, young adults can be prescribed hormones across or puberty blockers. And so there’s like these levels of gate keeping. And what was, what we really liberating about the other service was yeah, there was an assessment and it did take a good few months to do, because of [participant’s child’s name], my son’s complexities that there was that level of cooperation with the GP and the service that meant that actually as long as the, the bloods are being checked and reviewed on a fairly regular basis, which they are, that the GP has no issue with prescribing it, which is great. We never knew when the, although when we started off, this is going really convoluted, isn’t it. When we started on the referred first, the waiting list was 18 months. As time went on, the waiting list was getting longer and longer and longer. We didn't really know when we would be seen for our first appointment. We then knew that there was gonna be another six months at least of assessment before we got seen by the endocrinologist as part of the GIDS. I knew that if we didn't put things in place, my son wouldn’t be alive.
Josie felt trying to access hormone therapy for her daughter was a ‘Catch 22’.
Josie felt trying to access hormone therapy for her daughter was a ‘Catch 22’.
I think we kind of started off, it started off while we were still with them, because we were, were trying to access oestrogen for [name of participant’s daughter]. And we felt very much that we were caught up in a sort of 'Catch 22' because she had to be sad enough that they diagnosed gender dysphoria. But then, they seemed to be saying that her mental health was too poor for her to be able to go onto hormone treatment. So it was kind of like, you had to be quite sad, but not too sad and it was kind of like, we were caught up in it. You know, it was sort of like, oh well, I'm afraid you're actually, you know, you're distressed enough to have gender dysphoria so that's a tick, but now you're too distressed and so that means that your mental health isn't stable enough to access. So that was, that was kind of it. But we also, we also picked up on a couple of other things with them, so this idea that in order to access hormones she would have to present in a more stereotypically feminine way. You know, we were just shocked that anybody would say that to anybody. So that was part of it as well. And then the last thing was that they told us that they had a policy that someone has to be on blockers for twelve months, a minimum of twelve months before they can access hormone treatment and they said that that's just a protocol. But then when I read the protocol, that's not what it says.
Her daughter was desperate to start hormone therapy and Ali considered private providers as she worried she might get hormones from the internet.
Her daughter was desperate to start hormone therapy and Ali considered private providers as she worried she might get hormones from the internet.
My daughter had got really impatient about not being able to access medical hormones and suppressants. So there was information about people having gone privately. And I was very worried, because my daughter was going online internationally. And she was talking about “oh, I'll get hormones from wherever” and that's very frightening, because I don't know what quality they are. It's not monitored. It's you know, picking something out there from god knows what is, not good. But she was so desperate. And we, I wanted to talk it over with the clinic [sighs]. I got, really fell into the situation where I had to investigate the private route, which was really very expensive, from the point of view that I couldn't support it. And, and not particularly satisfactory, cause it's not really available in Britain. But it's, [sighs] it was, it was good, cause I was able to go online and find out about other people's experiences where we had finally got a referral to the [name of city] Hospital to get suppressants. And, but, unfortunately by the start of those, I had given them to my daughter and said, we would try and get private hormones. What I hadn't realised, at that point is that although I contacted our GP and talked to the private supplier of the hormones and they said they were happy to do shared care. I didn't realise that the hospital didn’t do that and that they were going to drop us like a hot brick, because I wanted to, I spoke to the therapist and I wanted to talk it over I wanted to talk over at the hospital, but the therapist contacted the hospital and told them we'd done this. And week or so before the hospital appointment got a notification saying they were cancelling. And I didn't know where I was or what we were doing and I begged them to let us at least come up and talk about it and I said we would drop the private hormones if that meant we were kept on. Because to have the assurance that it's been handled by the NHS and that it's all responsibly done and it's responsibly sourced was such a reassuring feeling, even if we had to wait forever for it. It was, it made me happier that I was doing something safe and positive.
Accessing hormone therapy gave Adele’s son an instant improvement in mental health and an opportunity to explore ‘all of his options’, including considering whether he wanted to keep taking the medicine.
Accessing hormone therapy gave Adele’s son an instant improvement in mental health and an opportunity to explore ‘all of his options’, including considering whether he wanted to keep taking the medicine.
So he started on testosterone privately and started taking it, probably about this time last year. And he instantly, you know, mentally picked up, you know, and he was starting to get a bit more engaged and I sort of thought yeah, it’s sort of helping. And I could start to see, yeah, it started on a low dose, well it wasn’t an adult dose, it was just this kind of smaller bit.
He’s going through a lot of kind of thoughts in his own head about kind of, do I, you know, what do I want to be trans, you know, he feels that he is, but there’s all of the stigmas surrounding that. And if so, do I want to kind of be taking, you know, go down the medicalised route or do I want to, you know, so he’s really kind of exploring, you know, exploring all of his options now having kind of almost like got the thing that he’s been really focused and it’s now that in allowing him, taking away that barrier that he’s now able to start thinking, you know, thinking about all of those things
Choosing between the NHS and private healthcare
The NHS ‘couldn’t help’ Andrew’s daughter, so the family decided to pay for the hormone therapy privately.
The NHS ‘couldn’t help’ Andrew’s daughter, so the family decided to pay for the hormone therapy privately.
We went through CAMHS. You’ve got to go through CAMHS to get to the [Gender Identity Development Service], which was the name of the clinic that was given to us by the private counsellor. We didn’t know it existed. So we got our GP to refer [participant’s child’s name] to the [Gender Identity Development Service]. And we finally, after about two years on the waiting list April this year, we eventually got to see two people from the [Gender Identity Development Service], at the [name of the city] clinic. They’ve just opened a clinic in [name of the city] where, where you can go instead of going to London. But they weren’t, they weren’t, they couldn’t, they couldn’t help us. We waited two years to see them and when we got to see them, they were, there was nothing they could do, apart from psycho-social support, there was nothing they could do, because she’s not adult, yet. What we’ve, what we’ve missed out, so far is that, we went private to a private specialist, medical specialist who prescribes testosterone blocker and oestrogen for our daughter. So she, we we’ve been, we’ve been giving her that for a couple of years now. We pay for that. Every three months I give her an injection to suppress the testosterone and she applies her own oestrogen patches. So that, we’ve been doing that in the meantime to pause puberty, ‘cos that was the, that was the most crucial thing for our daughter was to pause puberty and not develop into a man. That became the dominant factor in all of this. So we went private. We did that and because the NHS couldn’t, couldn’t help us.
Adele talks about ‘the thought process’ as a parent choosing to pay privately for hormones for her son.
Adele talks about ‘the thought process’ as a parent choosing to pay privately for hormones for her son.
These blockers well, you know, we want our children to be on them. They can’t be on them indefinitely and they’re having this detrimental effect and you not offering the therapeutic support that is needed. We are not getting any further and it’s spiralling downwards. They need to have hormones in their body. But it’s, you can’t, you have an option, you either take them off blockers which they absolutely definitely don’t wanna do or we have to look at finding an alternative way. So I looked, you know, at potentially taking my son to Boston and also looking at [name of private provider], looking at private options. And so, eventually, I did a huge amount of research. I took my son to another therapist as well to have meetings with them about kind of getting it was like referral documents if we’d need to go off to Boston. But then, in the end, I decided to take him to [name of private provider] for testosterone. So we went through their process and I’d spoken to them sort of quite a few times, already. So we went through to the process with them of getting after a lot of sort of soul searching in myself and whether, you know, this was the right thing to do. And he, you know, my son had been desperate for it since he was like, he was fourteen, you know, at this point. So he’d been on blockers now for about a year, eighteen months when he turned fourteen. And even then, I left, you know, it was like another six months before. So he’d been on blockers for at least two years if not slightly over by the time we actually managed to get cross sex hormones for him. In terms of, you know, the mental process that I went through, as a parent in actually deciding to endorse his, my son’s decision to get testosterone. I kind of thought well, okay, he’s like fourteen and a half now. And yeah, he stays at [Gender Identity Development Service] they will give him cross sex hormones at sixteen. So either I can say to my son, no, you are not allowed to have cross sex hormones now. Given that, I knew, you know, that he desperately needed something over and above having blockers. I thought, well, okay, so I can make him wait for another year and a half...
And so what’s that gonna do? Well that just means you’ve got another year and a half. He’s not gonna change his mind within the next eighteen months, I could not see my son going, I don’t want to have, you know, testosterone given the mental state that he was at. So I could put him through hell for eighteen months or I could even be like really, really awful parent go, no, you’re not having anything until you are eighteen, you know. So that would have been even worse or I could, you know, the only thing I could see happening was him going through this journey of going I’m gonna have cross sex hormones, waiting and waiting and waiting, going through hell, having it. And then, maybe, when he’s in his like thirties or something, he might decide well I don’t want that. But he’s gonna have to go through that journey and then, you know, after the age of eighteen it’s his decision anyway. So I kind of came to the conclusion that, you know, I needed to support what was best for him here and now and so looked at getting testosterone for him. But it was a lot of soul searching, particularly knowing that I was gonna be going against you know, what the NHS was doing. But there was loads of people out there that would criticise me, you know, I’ve been called child abuser and awful things, anyway. And I knew that other people may not make that decision, but just, you know, the personal decision that I made, you know, not just for my child, but with my child, ‘cos my child was, you know, very intelligent and mature at sort of saying, that’s what I wanted to do. So that’s just, I suppose telling you the thought process as a parent that I went through.
Leigh wanted to take things slow and felt that having that extra time that the NHS pathway allowed was a positive thing.
Leigh wanted to take things slow and felt that having that extra time that the NHS pathway allowed was a positive thing.
With my child being looked after, he hasn't got the option of going through private care. I know there are, there is a GP out there who - I think she just moved over to Spain. But there was a UK GP who saw younger people and did prescribe hormone blockers and cross sex hormones a bit earlier than the GIDS. But it's never been an option for my lad. Saying that, even if it had, I don't think I would have accessed it, because I think having that extra time and taking it slow has been the right thing, you know, for him to be able to take them extra breaths and take them extra steps and experience things slowly and as who he is, developing as rather than jumping straight in, accessing it all and then having to worry about it in the future. I do struggle with some parents who want everything now, you know, they're children at the end of the day.
Andrew talks about managing his daughter’s hormone therapy with the private provider.
Andrew talks about managing his daughter’s hormone therapy with the private provider.
Well the private GP specialist prescribes the medications. There were two. There’s a testosterone blocker which works on the brain, reduces the production of testosterone. Well, almost completely suppresses the production of testosterone, which stops male puberty. I give her an injection, intramuscular injection every three months. I email the GP specialist, they prescribe it. They send a link to the chemist who sends me a link, three days later it comes in the post. Being an ex-healthcare professional, I have no problem giving my daughter an injection. Most parents wouldn’t have a, wouldn’t be able to. I understand that completely. And I don’t know what they would do. Perhaps they would find because the GPs are unhappy to do it, because they don’t prescribe it. Why should they give it. If there’s a problem, why should they deal with that problem? So, so I don’t know how other parents would get around, who, who would, who would do the injection, I really don’t know. For us, it hasn’t been a problem, ‘cos I do it. I used to give injections every day, in my career. Every three months we do a blood test to check on the levels of testosterone and oestrogen. She also takes an oestrogen gel now as well to encourage breast development more female shape around the hips. Yeah.
How, how has the treatment been for your daughter? How is she, how does she find it?
It’s all, the first couple of injections she didn’t look forward to very much, but she always knew that it was the only way to get what she wanted was to have these injections. So now it’s no big deal now. Yeah, easy.
Adele talks about the process of monitoring her son’s bloods with the GP and how there are many details to be worked out managing hormone therapy between the private and NHS care.
Adele talks about the process of monitoring her son’s bloods with the GP and how there are many details to be worked out managing hormone therapy between the private and NHS care.
Some ways it was straightforward, in other ways it’s a difficulty, because you’re going to a private provider and then there is the whole kind of like interface of how does that work with your GP? And given that, our GP was like really supportive. They’re still, you know, a lot of it is all of these little, you know, technical details, all the devil’s in the detail, really. So it’s the thought of okay, so he was kind of continuing getting blockers and then he was gonna get cross sex hormones from, you know, [name of private provider]. And I guess from the GP’s point of view, that’s been great. From getting it privately, that’s been great. Then there’s just the thing of, okay, so whose gonna do what. There’s like blood tests and whose gonna, you know, administer this. Fortunately, the testosterone is in gel format and so there doesn’t need anybody actually giving it to him or administering it. So that would just be sent, you know, to us, at home, through an online pharmacist. So that, you know, it’s just a lot of like sorting out, well when we get a blood test, whose gonna do it. How we gonna get the results. How does that work? How does that, is that authorised? How do I get that back and that is a lot of, you know, difficulty, because there isn’t that integration with, you know, private health and the NHS. And it’s not anybody’s fault, particularly. It’s just, you know, how different GPs work, you know. It’s like oh I’ve to get the blood tests done and they’ve sent it off, but they have to ask particular things to be done and then sometimes isn’t done, because people go oh, it’s a female. We don’t need to test for testosterone even through they’ve gone yeah, testosterone. And it’s like, so then it comes back and they haven’t done it and so we need to go and get it done again and then they get the results back and then they won’t give me the results until the doctor, the GP has authorised it and so you have to call them and say, can you authorise getting the results and printing it out. Then I have to go and physically get it and then I have to be the one to send it off to [name of private provider], you know, so it’s a really kind of long drawn out process. So, there’s that which is you know, we’re really having to like build this healthcare system from the bottom up. And as a parent, having to manage that, I’m like the case worker, you know, essentially having to kind or organise all of that. So that’s kind of, on that side of it, it’s straightforward, but it isn’t, kind of getting that.
Managing hormone therapy and what effects it has on the young person
Taking testosterone as gel works for Ross’s child. He supports his child’s choice ‘because it's their life.’
Taking testosterone as gel works for Ross’s child. He supports his child’s choice ‘because it's their life.’
We got a supportive GP. Prescriptions are just kind of rolling and they're on testosterone gel rather than injections, which I'm happy with and they're happy with, cause they're not overly keen on needles. And they like the fact they're on gel because they have some every day where with the injections, through research, my own research there are pits and troughs. They have a big spike of a testosterone when they have the injection and then it's slowly wears off until they have the next injection and then they have a big spike again [laughs] which means the hormones are going up and down all over the place and being on hormone treatment it gets very messy, cause you don't know what's the effect of the hormone and what's the effect of the pits and troughs of having the injection. So having the gradual use of the gel certainly suits us and it was [name of participant’s son] choice as a lot of things through the whole transition thing. It's kind of, I'll support their choice, because it's their life. It's not my life.
Lisa had thought about impact of hormones on her son’s fertility and felt it was ‘quite difficult to get that information’ about the options for her son to ‘leave the door open’ to be able to become pregnant in the future.
Lisa had thought about impact of hormones on her son’s fertility and felt it was ‘quite difficult to get that information’ about the options for her son to ‘leave the door open’ to be able to become pregnant in the future.
We have discussed that. And that’s all part of the knowledge that we are trying to [clears throat] extract from [name of hospital] because he has lots of questions about how he might have a baby. Whether, in order to be able to have a baby, he would have to menstruate. Whether that would also have to be accompanied by physical, obvious physical changes like breast development and physical changes for other parts of the body which would make him look effeminate, feminine and would be impossible then to reverse. So there are all, there are lots of questions in his mind and we, and of course, the cross gender hormones are—so whereas the hormones blockers are a pause button on pubertal development the cross gender hormones then do start to impact fertility, less so for female to male transitions. More so, more quickly for male to female transitions.
But, nevertheless, it’s still impacts upon future fertility and options. And so, it’s really important, I think that children who, because children who are exploring their gender identity, unless they have any other cognitive issue that prevents them from thinking about these things to a deeper level that will, they will make the associations with, you know, their external development and their internal development and their ability to procreate and, you know, how do I, is there a way that I can look like my chosen gender, but leave the door open to be able to have a baby. And, if so, what does that look like. And it’s been quite difficult to get that information from anybody.