Experiences of parents and carers of young trans and gender diverse people
NHS and private hormone (endocrine) clinic appointments and endocrinologists
Interventions such as hormone blockers or gender affirming hormones require initial psychological assessment from gender specialist services before being referred to a paediatric endocrinologist, or endocrinologist. In certain circumstances, GPs have undertaken these treatments, without these requirements, due to the exceptionally long waiting times for NHS treatment. Whilst many parents and carers we spoke to preferred for their child’s trans healthcare to take place within the NHS, the waiting times at the gender identity services for both children and adults, meant that some opted to pay for it privately. For example, E and D were able to pay privately for their adult son’s appointments with a gender identity specialist and endocrinologist. This allowed their son to avoid waiting a long time to be seen on the NHS and get hormones prescribed, which as E observed ‘did seem to help a lot’ with how he felt about himself.
E and D talked about their son seeing a gender identity specialist and an endocrinologist privately but ongoing treatment was carried out in primary care under the NHS.
E and D talked about their son seeing a gender identity specialist and an endocrinologist privately but ongoing treatment was carried out in primary care under the NHS.
Father: 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… at least for an initial consultation.
Mother: That’s right, yes.
Father: So, he went off to see him… and sort of saw him once, I think or and did an assessment and I thought, yes, yeah, he thought he—
Mother: This was the main issue.
Father: 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. Which he was, obviously, when he was, he was very happy there. We were very relieved about that. That did seem to help a lot, didn’t it? The anxiety and depression didn’t go away. But it made him, he was certainly very happy about that.
This section is mostly about seeing the endocrinologist on the NHS. Below, you can find out more about the parents’ and carers’ experiences of going to the specialist hormone (endocrine) clinic with their child, to get their child assessed for hormones, hormone blockers or to get their stage of puberty assessed.
Within the NHS, the referral to the specialist endocrinologist is always done by the Gender Identity Development Service (GIDS) after the young person has been assessed by the therapists within the service. Some parents also spoke about getting a local endocrinologist involved in their child’s care via their local GP practice or getting more ‘joined up’ or ‘collaborative’ care where appointments would be attended by professionals from both GIDS and the endocrinologist. Being referred could involve several visits and include blood tests, scans and filling out consent forms.
Adele spoke about getting her son approved for hormone blockers, seeing and endocrinologist and the time it took.
Adele spoke about getting her son approved for hormone blockers, seeing and endocrinologist and the time it took.
So those first four appointments [at GIDS] were fine and we went along kind of every month. You know, we were just kind of I suppose just discussing where we were at that particular moment in time. The sorts of things that we’d been talking about. How my son was feeling. You know, we separated off into two separate rooms, you know, I talked to one of the therapists, my son would, you know, talk to the other. There wasn’t, to me it was very much a kind of assessment period that they, you know, it seems that there was a lot of us talking and a lot of them making notes. So it wasn’t, there wasn’t really a kind of any therapeutic kind of involvement in that. And then we kind of got referred down to almost, referred down to [hospital] to get blockers. And so that was probably about another don’t know, six, eight weeks or something like that for the first appointment for that. So, there was very much a kind of focus on, okay, so he’s gonna go down there. I had, went down and had the assessment in [city]. So, the first meeting was there some initial kind of blood tests and scans and then we had sort of go back down to them about a few months few weeks later in order to sign the forms both my son and myself had to sign sort of individually the consent, so really there was like this multiple page kind of consent form. I think they’d been sent it previously as well to look at. And to have, you know, the additional scans before they went, ‘Okay, that’s it. We are gonna approve your son to have blockers.’ The GP hopefully would at least be on board to do that. But so we were very much kind of looking at, you know, that journey and that pathway of making that happen. It then carries on, we’d have I can’t remember if he had appointments like every month, initially or if it went to every three months.
At that point, your son has got the blockers?
So, he got the blockers so, he from when he came out - so he came out in August and then we had the first appointment at the end of December. And then he got referred down to [hospital] in April. And then he got the blockers.
Leigh said there were ‘many, many conversations’ in the family and with her foster son’s therapist and social worker about what would be involved in taking hormone blockers.
Leigh said there were ‘many, many conversations’ in the family and with her foster son’s therapist and social worker about what would be involved in taking hormone blockers.
When he attended the [Gender Identity Development Service] he went monthly for assessment with his therapist who has remained his therapist throughout. So he has had that constant and he's managed to build up a really good relationship with his therapist at the [Gender Identity Development Service]. And finally, maybe a year or so ago, started opening up about other stuff. So, in that way, he's been supported with them. That's been quite good. In referral in regards to the hormone blockers, with his therapist, we, as a family with his social worker had many, many, many conversations about hormone blockers. The process. What it involves. What it could lead to. Even the fact, you know, having an injection monthly is a major thing for a 11 year old to start. I think maybe three or four months after we started the conversation he was referred to the endocrinology at the [hospital] in [name of city]. That was maybe six to eight weeks. From being referred to getting the appointment. We saw one of the lead clinicians at the [hospital]. Had blood tests done. Had bone density scans done. It all seemed to go pretty smoothly. Once we'd got to the [hospital] it was like not much questions, not many questions. Not much assessing. Not much, not much anything really. It was just a case of, right, you've been referred for blockers, that's what you're here for. Here you go. You know, so that was kinda, I didn't expect that. I expected that to be a bit more, this is our realm, let's delve a little deeper and let's take it a little bit slower. It wasn't.
For parents, whose children are waiting to start hormone blockers, seeing an endocrinologist and other specialists who can explain aspects of medical transition can be informative and reassuring. This was the case for Richard, who felt the visits to the specialist clinic ‘were excellent.’ He particularly appreciated the tactful manner of one of the specialists and his ability to make him and his daughter ‘feel really comfortable’ discussing potentially embarrassing issues.
Richard felt talking to the specialists at the hospital about hormone blockers and future medical interventions was a very positive experience.
Richard felt talking to the specialists at the hospital about hormone blockers and future medical interventions was a very positive experience.
So, you have been in the care of that service for two and a half years now?
Mmm…
How often do you go and see them?
Initially, it was quite regular and perhaps even once a month and then it becomes less regular. I think it’s perhaps once every three months. We’ve been to the hospital in [city] as well to speak to the specialists about blockers and physical reassignment and get an understanding of sort of the scientific and also the medical aspects of if someone wants to have the transition medically.
How did you find that experiences talking about these more medical interventions?
The doctor was really incredible, really amazing. Spoke in a really understanding way. On the second or third visit, we spoke to a different doctor and she spoke in a way that was quite awkward in comparison to the doctor who, I was really, really impressed with. So, the other person spoke in a way where English wasn’t their first language and how they described a couple of things was a bit awkward, whereas the gentleman, he had obviously had a good experience of really reassuring people and making them feel really comfortable to discuss really potentially awkward things and he would say, ‘Oh, you might find this embarrassing to talk about this subject, but these are some questions that you will get asked’ and deliver the situation in a really, really good way. To sort of prepare the person for what might be a bit awkward and embarrassing. Give them the option of not answering the question if they didn’t want to which I thought was excellent.
Lisa’s son was on hormone blockers prescribed by a private provider. In order to be able to access hormone blockers on the NHS he was required to stop taking the privately prescribed blockers and have his pubertal development assessed by an NHS endocrinologist. Lisa then requested joined up appointments between the Gender Identity Development Services and the NHS endocrinology team. She said: ‘we’ve started now to have joint meetings with endocrinology and the [Gender Identity Development Service]. They have been more helpful, because we can agree a process and then everybody knows.’ Lisa emphasised that such ‘multidisciplinary team meetings are really useful in circumstances where there are different types of support that are needed, especially for a child.’
Lisa described her experience of getting the endocrinology team and the Gender Identity Development Services to work more closely together to support her son.
Lisa described her experience of getting the endocrinology team and the Gender Identity Development Services to work more closely together to support her son.
The first meeting that we had was because we had this issue about referral to endocrinology. The reason that endocrinology refused to accept our referral was because [name of participant’s child] was already taking the blocker. And I then had to, I then had to point out that actually, as he was entitled to access private medical treatment as well as NHS treatment, at the same time. And that we could not be refused NHS treatment, because we were accessing private treatment. And, at that point, it, I had, I said I didn’t understand why, you know, what the issue was with endocrinology and I wanted to better understand that. And at that point then, also I think because I was making waves about the fact that my son was being treated differently because we refused to allow him to be assessed along this, the usual path of monitoring his increasing distress over time. And I called into question then the appropriateness of not bringing endocrinology in sooner. So that, the child could be therapeutically and psychologically assessed with this head space that a child of any given age ought to be capable of being assessed outside of that developing distress pattern and self, you know, movement towards self-harm. And it was at that juncture that then [hospital], a member of the, senior member of the [hospital] endocrinology team came to an adult meeting with the therapists that were treating my son. And it was quite a, it was quite a difficult meeting, because we felt that we were having to challenge everything that was being suggested. And it felt quite, it felt quite difficult to me being in that meeting, even though I am quite robust and I’m used to speaking publicly and to professionals and challenging professionals in my line of work, it still felt difficult because the subject matter was so emotive, for me. But, you know, we, I don’t think we really got any answers. We made our views clear. I don’t think we really got any answers. But one thing that we all did agree on was that the meeting had been useful insofar as having both disciplines there were concerned. And subsequently then we were given an appointment for a separate meeting at [hospital] for endocrinology. And so, we’ve been, because I have asked at each juncture that somebody, whenever we are at [hospital] I’ve asked that somebody from the [Gender Identity Development Services] be there, so that we continue with this joined up thinking. I’m not sure how much actual difference it’s making in practice. But it feels much more coherent in that to be in those meetings and to have both sides of the same coin in the same room.
Getting an endocrinologist involved in her daughter’s care was something that Jan saw as a very positive outcome of her efforts to ensure that her daughter’s specific healthcare needs were met locally. She felt it was ‘great to have somebody in our local practice… we feel like [her]… her trans care is a part of her overall medical care.’
Jan spoke about successfully getting a local endocrinologist involved in her daughter’s care, which included the prescription and monitoring of hormone medication.
Jan spoke about successfully getting a local endocrinologist involved in her daughter’s care, which included the prescription and monitoring of hormone medication.
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. So we had the appointment with the endocrinologist I think in February of this year. And prescribing started immediately. They put her on much better medication than she was on before. I don't mean better, but sort of potentially stronger and a proper T blocker, that she's on now, which is, you know, better for the hair loss and, and everything. And you know, and she feels really good. So we stopped using the internet provider, who had been brilliant, really brilliant throughout. But it's great to have somebody in our local practice now who somebody that we can see face-to-face and, you know, we feel like [name of participant’s child]’s care is a part of her trans care is a part of her overall medical care, rather than us having to take that part out to somebody else who was willing to treat her.
Find out more about hormone blockers and hormone therapy.