Experiences with private healthcare

We had [name of participant’s daughter]’s diagnosis of ADD was done privately. And that was just because wed had so much waiting around. We were just, we were just, we cant wait any longer. So, yes, but, but specifically for trans issues, no. If I had, if I was doing this journey again starting with what I know now, we would definitely have sought private healthcare, because the time when [name of participant’s daughter] was waiting on blockers and waiting for oestrogen was really harmful for her. She missed, you know, it was a really bad time. And all that she needed, all that she needed was to be on the correct treatment, that was all that she needed and as soon as she was on it she was alright. So, if wedve known then yeah, then we would have gone privately. If there had been anything that we could access of course, because that’s an issue as well now.

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.

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 [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.

It’s the times on the waiting list where you don’t know what’s gonna happen. It’s the not understanding that there seems to have been a shift in, if you seek private help that you will automatically be dropped. I hadnt realised that. And I had wanted to talk over the situation and we werent given that opportunity. I had to really go out of my way to get that help and that opportunity to discuss things. And I did feel very let down in that instance and it was really letting down my daughter because if we were cut free, I had no idea as to, not no idea and I’m not decrying the private health that’s available. But, to have the NHS, to have that tried and tested assurance especially when it’s only me making decisions for my daughter and with my daughter, obviously now cause she’s 18. It helps a lot.

It was a long time and as I say, it was a bit of the knife edge whether they would actually make it that far, which is why we went down the private route to try and accelerate things which I don’t know if it helped or not. I don’t know how much quicker adult GIDS reacted, because they did know that wed been to the private. They were informed, the clinic, I don’t know if theyre duty bound or whether they do it as a courtesy thing. When we arrived at [name of place] they knew that wed been to the private clinic. They had notes from the private clinic. And it did seem very fast track from that point on. It was almost like they were in competition with the private clinic. They wanted to kind of prove that the NHS was a good service and was proactive and was—cause other people we know thatve been there have been on a much longer wait to get testosterone where ours was pretty much first appointment, bang, yes you can have it. Were just waiting for the results and youll be, youll get your prescription within weeks. Whereas we know other people that have been there for months, a year at adult clinic waiting to get prescribed hormone treatment. So, I think the private clinic maybe prompted. It maybe helped it. But we don’t know for sure. It’s certainly use, I would recommend other people if their children are very, very kind of critical stage, it is an option if you go private you do get the results much quicker. I don’t think even private can do testosterone before the child is 18. But it does seem a lot smoother and quicker. It’s got, you get what you pay for kind of thing if you’re paying privately you get the attention and you get the appointments quicker, which is an overstretched NHS.

I’m keeping my eye on things. I’m keeping my eye on what is available and the options that are out there. And if I felt – Ive thought about this – if we were at GIDS and they were putting us on hold and I could see that see the [name of participant’s child] was suffering and her mental health is deteriorating and they were maybe saying, we’ got to wait a bit longer. She cant go on puberty blocker or whatever. We need to wai and then she was, I could see that she was suffering, I would be really tempted to try and go elsewhere to help to get her the help she needed. Id prefer to stay in the NHS if I could if she was getting the right support and I feel like possibly we are gonna get the right support for her, because were in the system soon enough. But if, I can see other families in the situations where I definitely would go private, because theyre just not getting the support they need at the time they need it. I know of the Gender GPs and all the controversy around that. So I am aware of all the things that are going on with that. And then Ive seen stories of teenagers that have gone down that route. But it just depends on the child and what happens, what age they are.