Experiences of parents and carers of young trans and gender diverse people
Private healthcare
Josie says that she would have chosen to get private healthcare for her trans daughter if she were to ‘do this journey’ again.
Josie says that she would have chosen to get private healthcare for her trans daughter if she were to ‘do this journey’ again.
We had [name of participant’s daughter]’s diagnosis of ADD was done privately. And that was just because we'd had so much waiting around. We were just, we were just, we can't 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 we'd've 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.
- In this section, you can read about parents’ and carers’ experiences with private healthcare, including:
- Deciding to access private care;
- Managing the relationship between the private healthcare and NHS; and
- Experiences and perceptions of private health care.
Deciding to access private care
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.
Lesley talks about a shared cared agreement between a private provider and her son’s GP and how she felt her son would not be alive if he had to wait to see a gender specialist in the NHS specialist services.
Lesley talks about a shared cared agreement between a private provider and her son’s GP and how she felt her son would not be alive if he had to wait to see a gender specialist in the NHS specialist services.
We reached out to an independent provider who were amazing and have been amazing with the service they provided for my son, myself our GP. They have a shared care agreement between our GP practice and the provider. Which means that everything runs smoothly. This is a practice nurse once every three weeks for injections and you can’t fault our GP and all he has done, it’s brilliant.
When it relates to being on the waiting list, because one of the frustrating things around the NHS system and the specialists for puberty blockers and cross sex hormones are provided and prescribed by GPs across the board. So we don’t need to go to a tertiary service. They need to go to a specialist service in terms of gender identity service, they can’t do that unless it goes through a specialist service. And at the moment, because it’s all tied up with mental health they have to be screened first before being prescribed hormones or puberty blockers. So there are all levels of gate keeping.
E and D talk about getting private care and initial prescription from a private endocrinologist, with the local GP continuing the hormone care for their son on the NHS.
E and D talk about getting private care and initial prescription from a private endocrinologist, with the local GP continuing the hormone care for their son on the NHS.
Mother: And, I mean, in fact, he said to me, I am not going to be blunt, but he said to me, if you don’t sort the gender stuff out, you’re looking at suicide which terrified me. Absolutely, sort of threw me into a spin as you would expect. So, on the back of that, we decided. ‘Cos he had self-referred himself through his GP at university to Gender Identity Services, but where he was in that part of the country, the waiting list was about four years. It was crazy. So, I decided that I would pay to see a gender specialist privately in [name of a city] at least for an initial consultation.
Father: That’s right, yes.
Mother: So, he went off to see him in [name of a city] and sort of saw him once, I think or and did an assessment and I thought, yes, yeah, he thought he—
Father: This was the main issue.
Mother: This was, this was an issue he would qualify as suffering from gender dysphoria. And then, recommended that he sort of start a hormone therapy. And so then did a referral to an endocrinologist again, privately who started, who did the initial prescription for hormone therapy, because it was then carried out by the local GP. So, sort of started him on that track.
Managing the relationship between private healthcare and NHS care
Ali says the NHS was ‘going to drop us like a hot brick’ when she considered paying privately for her daughter’s hormone therapy.
Ali says the NHS was ‘going to drop us like a hot brick’ when she considered paying privately for her daughter’s hormone therapy.
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 [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.
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 hadn't realised that. And I had wanted to talk over the situation and we weren't 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.
Ross suspects considering private care sped up the process of getting hormone therapy on the NHS for his child.
Ross suspects considering private care sped up the process of getting hormone therapy on the NHS for his child.
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 we'd been to the private. They were informed, the clinic, I don't know if they're duty bound or whether they do it as a courtesy thing. When we arrived at [name of place] they knew that we'd 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 that've 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. We're just waiting for the results and you'll be, you'll 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.
Lisa talks about why they chose to access hormone blockers privately at an early age and the difficulties of trying to transfer her son’s hormone blocker treatment to the NHS.
Lisa talks about why they chose to access hormone blockers privately at an early age and the difficulties of trying to transfer her son’s hormone blocker treatment to the NHS.
We had been seen by the [Gender Identity Development Service] with these two therapists for, I think a little over a year. All we had to show for that was an interim report, which didn’t draw any conclusions. Didn’t reach a diagnosis. And the reason that they gave for that was that, before we started seeing the therapist at the [Gender Identity Development Service], we had been to see [name of a person] and we had begun to pay privately for hormone blockers for my son.
The reason that we did that was because we felt that he deserved an opportunity to be able to explore his identity free from the pressure of time that pubertal development was bringing. And we felt that we did a lot of research. We’re both educated people. We consulted closely with [name of participant’s child]. We knew what the risks were. And we knew what the benefits were likely to be. And we felt that it was worth trying. The, my son didn’t have any side effects from the blockers, none whatsoever. If anything it gave him, it gave him peace of mind that he didn’t have to worry that he was going to see even more problems created like breast development, like hip development, like the change in the shape of his hands or his face. He didn’t have to worry about a period starting. He didn’t have to worry about how he was perceived by other people. He could just get on and look the way he wanted to look and be the way he wanted to be and be the person he wanted to be, free of any pressure. I think that’s the best decision that we have made for [name of participant’s child], so far.
We went to – or my son, I should say. We went to, after we’d had this interim report from the [Gender Identity Development Service], we felt that we had made no progress over such a long period of time. Our hope was that, we would be able to secure a diagnosis for [name of participant’s child] and then be referred to the endocrinology team at [name of hospital]. And that we would then be able to bring his blocker treatment under the NHS protocol. What we were told when we challenged the therapists about the absence of conclusions in the interim report was that it’s been difficult if not impossible to assess my son, because they hadn’t been able to assess or monitor his distress over time. And I challenged them as to why that was a necessary component of their assessment of a child. And that actually, it would be far better for my son to have been able to think clearly, be free from the encumbrance of developing mental health issues. And be free from, you know, thoughts of poor self-worth. Poor self-esteem. He’d just been able to get on and be a kid and think about this issue with a clear mind.
They said that it wasn’t their normal protocol to assess whilst a child was on hormone blocker treatment. And therefore, they had no, they had no proforma essentially. And I felt that our assessment was just bobbing along on the ocean. No direction. No rudder. Nothing.
Experiences and perceptions of private health care
Oonagh says she would prefer to stay in the NHS, and that ‘keeping it slow’ was the better option, leading to a more ‘professional’ assessment, but is also keeping her eye on private options for her daughter.
Oonagh says she would prefer to stay in the NHS, and that ‘keeping it slow’ was the better option, leading to a more ‘professional’ assessment, but is also keeping her eye on private options for her daughter.
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 – I've 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 can't go on puberty blockers” or whatever. “We need to wait” 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. I'd 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 we're in the system soon enough. But if, I can see other families in the situations where I definitely would go private, because they're 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 I've seen stories of teenagers that have gone down that route. But it just depends on the child and what happens, what age they are.
Puckett, J. A., Matsuno, E., Dyar, C., Mustanski, B., & Newcomb, M. E. (2019). Mental health and resilience in transgender individuals: What type of support makes a difference? Journal of Family Psychology 33(8).
Simons, L., Schrager, S. M., Clark, L. F., Belzer, M., & Olson, J. (2013). Parental support and mental health among transgender adolescents. Journal of Adolescent Health, 53(6).
Priest, M. (2019) Transgender Children and the Right to Transition: Medical Ethics When Parents Mean Well but Cause Harm, The American Journal of Bioethics, 19(2).