Hormone therapy

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 didnt 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 didnt put things in place, my son wouldn’t be alive.

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 isnt 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.

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, Ill get hormones from whereve 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 couldnt 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 hadnt 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 didnt 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 wed done this. And week or so before the hospital appointment got a notification saying they were cancelling. And I didnt 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.

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.

With my child being looked after, he hasnt 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, theyre children at the end of the day.

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.

We got a supportive GP. Prescriptions are just kind of rolling and theyre on testosterone gel rather than injections, which I’m happy with and theyre happy with, cause theyre not overly keen on needles. And they like the fact theyre 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, Ill support their choice, because it’s their life. It’s not my life.