Experiences of parents and carers of young trans and gender diverse people
Getting referred to the Gender Identity Development Service (GIDS)
To be seen by a gender specialist within the NHS, a young person needs to be referred to the Gender Identity Development Service (GIDS). The GIDS accepts referrals from Child and Adolescent Mental Health Service (CAMHS) as well as other health, social care, and education professionals, including directly from GPs. GIDS national contract covers referrals from England, Scotland and Northern Ireland. For referrals from Wales or from any other country or territory, funding confirmation is required (GIDS, 2020).
Parents and carers we spoke to had a range of experiences of the referral process. Whilst for some getting their young person referred was easy and quick, others encountered difficulties and unhelpful or uninformed health care professionals. Parents also spoke about the different ways a young person can be referred.
Getting referred by CAMHS
Kate talks about her son’s referral to the Gender Identity Development Service (GIDS) via Child and Adolescent Mental Health Service (CAMHS).
Kate talks about her son’s referral to the Gender Identity Development Service (GIDS) via Child and Adolescent Mental Health Service (CAMHS).
So, when our second referral into CAMHS when we had the appointment with the psychologist, the clinical psychologist there, that was quite detailed and that’s when we addressed the trans, you know, that’s the first time into CAMHS that, as far as I know he said that he was trans. They made the referral and they checked that we, that’s what we wanted and we were happy to do that, and we were. So, they referred us and, but they were clear that that didn’t mean we would be accepted onto the waiting list but then we got a letter to say that we were accepted onto the waiting list with obviously the explanation that that could be long. Yeah the thing about the acceptance letter was to our GP and we were just copied.
Getting referred by the local Child and Adolescent Mental Health Service (CAMHS) is one way that a young person can access specialist services that are delivered by the Gender Identity Development Service (GIDS). The GIDS lists a referral from CAMHS as their preferred route, because a holistic assessment of the young person is undertaken by CAMHS. However, this isn’t always understood by CAMHS and some families struggle to get referrals through CAMHS.
Most children whose parents we spoke to, who were referred to the GIDS by their local CAMHS, were already receiving support from CAMHS. Ross talked about himself and his child’s mother attending CAMHS with their child separately on different occasions before being referred on to GIDS.
The young person can be referred to CAMHS for issues that are not immediately related to their gender identity and they might also not readily disclose that gender identity as something that needs addressing. Lesley’s son was struggling with self-harm and suicidal ideation. However, because Lesley felt that gender identity was a central issue for her son and she was very concerned about her son’s mental health, she ‘specifically asked CAMHS to refer’ him to the GIDS. Another parent shared that a psychiatrist her son was seeing highlighted gender identity as key to the young person’s mental health. They emphasised: ‘this psychiatrist… thought the gender stuff was a big issue… He said… I think he’s on the right medication for the anxiety and the depression, but he said, ‘I think the gender stuff is, is a big issue…’.
CAMHS could be a step in the referral process to GIDS. Andrew’s daughter was referred to CAMHS specifically to get a referral to the gender identity services ‘GP had to refer [my daughter] to CAMHS. And then CAMHS refer to [GIDS]’ This meant that there were additional waiting times.
Andrew felt his daughter’s referral via Child and Adolescent Mental Health Service (CAMHS) was straightforward.
Andrew felt his daughter’s referral via Child and Adolescent Mental Health Service (CAMHS) was straightforward.
How was that? How was the experience with CAMHS?
Well, it was okay. We, we managed to get, we had to wait maybe about four or five months. And then we kept on phoning up and eventually we got there in the evening. They put on extra clinics in the evening and so we got to see them after about four months. Well, it was a very straightforward interview with the psychiatric nurse who then referred [participant’s child’s name] onto one of the psychiatrists. And then [participant’s child’s name] went to see the psychiatrist one afternoon with my wife. I think I was working at the time. Bit of paperwork, ask a few questions and then they referred [participant’s child’s name] onto the [Gender Identity Development Service]. It’s quite straightforward really. We didn’t have any major issues with CAMHS.
In a few cases, getting a referral by CAMHS was complicated by what parents saw as an unhelpful response from the service. Ali said she had tried to get her daughter referred through her local CAMHS, who were already supporting her daughter, but was told ‘that they didn't handle things like that.’ Whilst her daughter was eventually referred by her GP, this increased the overall waiting time before she could see a gender specialist. Ali also felt disappointed with the lack of support from CAMHS whilst her daughter was on the waiting list to the GIDS, but she put that down to CAMHS shortage of funds.
Ali talked about her experiences of her daughter’s referral to the Gender Identity Development Service and how she felt her daughter was ‘cut loose and left to float’ by the Child and Adolescent Mental Health Service.
Ali talked about her experiences of her daughter’s referral to the Gender Identity Development Service and how she felt her daughter was ‘cut loose and left to float’ by the Child and Adolescent Mental Health Service.
And eventually we managed to tell the other therapist and I knew that they were supposed to do a referral to CAMHS, not to CAMHS to the (GIDS) adolescent services, but I was told at that point that they didn't handle things like that and we were just basically cut loose and left to float. It then took my daughter a great deal of time and soul searching to be able to then go to our GP, who has been extremely supportive, in order to then make the referral to the [Gender Identity Development Service]. By which time, the waiting list had doubled, waiting times had doubled [sighs]. It was not. I think the difficulty with CAMHS had been partly because we hadn't come out initially and said, ''This is our problem.'' And I think because of their cuts in funding they were under time pressure to get us through and they didn't see the necessity for keeping her on. But it was, it was difficult when we were on the waiting list without support. Just desperately wanting to go through it. And at that point she was going through puberty and that was creating an awful lot of stress. I didn't know where to go. And nor did she, obviously. She was going online and she did get a lot of support from people that she talked to online. And I think that was quite valuable for her.
One parent experienced difficulties when a referral went to both CAMHS and the GIDS at the same time. Adele, whose son was not in the care of CAMHS at the time of referral, spoke about her experience of unsuccessfully trying to access support from CAMHS. She shared that ‘the GP wrote the referral to both the [Gender Identity Development Service] and to CAMHS. And CAMHS came back and said, ‘No, we are not gonna accept him, because actually he needs to be at the [Gender Identity Development Service].’ And… we were like, ‘Okay. Are you sure?’ So we actually went and asked again and said, ‘Can he come and see you? I think maybe that would be a useful thing.’ And then, they came wrote back again, ‘No, no, absolutely no, we are not gonna see him.’ And he can be at the [Gender Identity Development Service].’
Read more about people’s experiences of CAMHS.
Getting referred by a GP
Many young people, whose parents we spoke to were referred to the specialist gender identity services by their GP. Their parents and carers shared both positive and negative experiences of this process with us.
For some, like Leigh, a GP’s previous experience working with trans patients meant that they were familiar with the referral process. Leigh observed that her foster son’s GP had been ‘super helpful’ and ‘knew to refer straight to the [Gender Identity Development Service].’ Similarly, Mel said about her stepdaughter’s referral that ‘the GP was pretty good’ and shared: ‘I think what had happened is that someone else either in the area that they lived… had just gone through it who was quite a prominent, whether it was a teacher or it was another doctor. Their child was going through it. So, they [the GP] were fairly clued up, I think, if I remember this rightly and put the referral in.’
Other parents spoke about the GP being inexperienced, but nonetheless willing to help and educate themselves to support the referral process. Both Josie and Georgina appreciated the proactive attitude of their GPs in finding out how to put in the referral for their children.
Georgina said the GP was helpful and proactive in getting the referral done, despite not having prior experience and needing to do some ‘research.’
Georgina said the GP was helpful and proactive in getting the referral done, despite not having prior experience and needing to do some ‘research.’
And we went down and had a little appointment just me and him with our the GP that we prefer at the doctors, cause there's one that is particularly lovely. And we just sort of said, what it was, we just said, he'd be, he's preferred to be called this now and we're not really sure where we go from here. However, I had, that evening, when he came out, I had gone on Facebook and just researched the hell out of the transgender support sites. So I'd already joined a support page and did know that I needed a referral to [Gender Identity Development Service]. And that if the GP was non-compliant, I need to contact Mermaids. So I did know that. But he was completely fine and said, ''Yeah, no problem at all. I am, I haven't got a great deal of experience in this, but I do have one other trans patient.'' I think they're grown up. He didn't, he alluded and since a little bit with when we discussed hormones and stuff. So I don't think he knew about the children’s services. So he said, ''I need to research it, but I think that's what we need to do.'' And the next day he rang me back I think it was and said, ''Yeah, we need a referral to [Gender Identity Development Service] and you need to book a double appointment so that we can do referral and we'll get it sent.'' So, that is what we did. And we had the referral appointment which took a little while obviously going through all the questions and stuff. He said, ''There won't be a problem.'' He never queried anything and he just believed [participant’s child’s name] straight away. Sorry [laughs]. And he it, there was a little bit of a stumbling block in that he was, my son was very scared to tell his dad. And his dad was the last person on this little to do list of who to tell and things. So, it, the doctor suggested that it would be an idea for, for my ex to know before the referral went, because he thought it would cause problems, otherwise.
Josie appreciated the honesty of her GP and his willingness to find out about the referral process.
Josie appreciated the honesty of her GP and his willingness to find out about the referral process.
Before we went, it was lovely actually, before I rang the GP I had already Googled and so I knew that the [Gender Identity Development Service] was what we needed. And I rang the receptionist and you know, cause they triage everything. So I spoke to the receptionist and, and I explained and I said, so, you know, I need, we need to make an appointment to see one of the GPs and she said, ''Oh, which GP do you want? And so I said, ''Oh I don't know. Who would you recommend?'' And she went, ''I think you should see Doctor So and So.'' And she was absolutely right, because he's just the loveliest, he's just the loveliest GP. He's really, really nice. And went to the appointment and he had a little chat with me and he had a little, then I went out and he had a little chat with [name of participant’s daughter]. And we came back in and he said, ''I actually don't know anything about this. And I don't want to waste your time. So if you could make an appointment, you know, for a couple of days then I will find out what I need to know and then we'll have a proper appointment and I'll send off the referral.'' And I just, that was really lovely. I mean, obviously, it would have been even better if he have had known. But I just thought it was fantastic that he just, you know, he was just really honest and he just said, ''I've never come across this before. I don't know what to do. I don't want to tell you the wrong thing. I will find out.'' And that was really lovely. He was, they've been really, really supportive ever since then. So he was really great.
And then you had the second meeting with the same GP when—?
That's right, when he had found out a little bit more about what to do and then they just filled in, he filled in the referral form with [name of participant’s daughter] then and there and then he's been really supportive ever since then, yeah.
Not everyone had a positive experience of the referral process with their GP. One parent said her and her partner were met with disbelief from their GP who didn’t think a young child could have significant gender issues. She also felt the GP was dismissive and ‘not keen at all to do a referral’ for their daughter.
Lisa felt her GP ‘was obviously unsupportive of our difficulties’. Lisa wanted a referral directly to GIDS but instead her GP insisted referring via CAMHS as they believed this was the best protocol to follow. She felt that her GP didn’t really understand their situation or listen to her.
Lack of familiarity with the existing referral process was also something that Oonagh emphasised when she shared that the GP ‘was going to take [the referral] to a panel to decide whether that was gonna be the case.’ She emphasised that ‘our experience is that you needed to do your own research to prove to the GP… what they needed to do. Felt like you had to make a case for referral.’ This can be a barrier for people seeking a referral as not everyone is equipped with the knowledge around referrals to be able to guide their GP.
Interview 1 felt her GP was uneducated and dismissive and reluctant to refer her young daughter to the Gender Identity Development Service.
Interview 1 felt her GP was uneducated and dismissive and reluctant to refer her young daughter to the Gender Identity Development Service.
The GP was very uneducated and basically didn't believe that a child so young could have gender issues that were significant. And so it was quite a dismissive interaction and at that point we'd understood that there was the possibility to get a referral to the specialist gender service and my partner and I, we decided that we would ask the GP to do the referral to the specialist gender service. And the GP was not keen at all to do a referral and it was only because we A) knew that the service existed and B) we printed out the referral form ourselves and we literally kind of sat down with the GP and said, ''We have a right to this referral, here is the form.'' We managed to get the GP to, very reluctantly do the referral. And but I think if we'd have been less educated about what services are out there, if we had not known that this service existed. If we'd not ourselves printed out the referral form, I think, no, I know, the GP would have said, this isn't a thing we deal with and basically I think his view was kind of I don't know, ‘come back when she's 18’ or something. It was very, you know, it was very much dismissive. So it wasn't a good first interaction with the health services.
The GP’s lack of familiarity with the referral process was a concern for Oonagh.
The GP’s lack of familiarity with the referral process was a concern for Oonagh.
I have a concern about the lack of knowledge GPs have initially I think about transgender children. I think they've got experience of adults and they seem to have experience of that. But locally, in [name of the area], I don't think there's a lot of knowledge within GP circles. And the GP that we saw, initially, he admitted he hadn't had any dealings with a child that young. And he needed to take it to a panel to approve funding, which showed that, I didn't know at the time, but it showed that he wasn't aware of the process that he needed to go through to support the child. And the referral that we wanted to GIDS he was going to take it to a panel to decide whether that was gonna be the case. So, I pursued it by getting advice from Mermaids and wrote them a letter and asked them to refer us and then, then it happened. So he obviously wasn't aware of what he should do in that situation.
Was that the first time you discussed your child's gender identity with a health professional when you went?
Yeah, yeah.
Do you remember how that meeting was?
He seemed open to it. He seemed open. He was professional. He didn't display any prejudice or anything. But he, you could tell that he didn't really know what the process was or what would happen with a child and how the referral, what would happen with a referral to GIDS, yeah. So I don't think he, I don't think he's, he's quite high up GP sort of on the [name of the area] level I think. At his level, I think he should have known a bit more about the process.
Parents of young adults were understandably less involved in the referral process than parents of children who were under the age of 16. However, E spoke about supporting her son by paying to see a gender specialist privately. Her son was referred through his university GP to Gender Identity Services. But the waiting list was about four years and she felt this was unacceptable and worried about her son’s mental health.
Find out more about parents and carers experiences with the GP.
Getting referred through another route
Whilst the majority of young people whose parents and carers we spoke to were referred via CAMHS or the GP, some were referred via a different route. Lisa, whose GP refused to refer her son, said she contacted the charity Mermaids and the charity offered to refer him.
Read more about Mermaids and other sources of support for parents.
Find out what the people we spoke to had to say about their experiences of seeing GIDS.