Improving healthcare for trans and gender diverse young people

Specialist trans health care in the UK is provided within the NHS for adults and children. For under 18s, care is provided by the Gender Identity Development Service (GIDS) based at the Tavistock and Portman NHS Trust. Adult care is provided by Gender Identity Clinics (GIC).
In the UK, there are several ways for trans and gender diverse people to access specialist healthcare. Being referred by a GP or Child and Adolescent Mental Health Services (CAMHS) are the most common ways for young people. Read more about GIDS appointments.
Parents and carers we spoke to had many ideas about how to improve the current gender identity services and pathways for trans and gender diverse children and young people. Their suggestions on what was needed were:
  • Additional, quicker and more local provision of services;
  • Support to people on the waiting list and their families;
  • Practical advice offered in the GIDS appointments;
  • Making the pathway clearer; and
  • Changing the pathway.

Adele encourages decision-makers, including within the NHS, to really engage with trans children and young people and consult them for ideas on improving the services they use.

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The only way that you’re really gonna understand what it is to have a trans kid or to be a trans kid or a trans adult is to take that time to do that deep dive and really talk to people on an individual level and give them that safe space to talk, you know. I would implore for the decision makers, you know, within the NHS to meet one on one trans kids and their parents or for MPs to do the same. Not in any public show, you know. But so that they really understand and, you know, what it is to be trans. They understand the struggles. They understand the differences between trans kids that there is no one type. You know, that they understand the way that actually they’ve been painted in the media is completely, you know, not representative of, you know, trans kids. And to understand that they are actually just a really small number and these massive conversations that are going on about trans kids, at the moment, are talking about a really small number. it’s not something that actually is gonna impact anybody else in any big way, you know, at all. So yeah, I think that’d be the one thing. I would, you know, I would love to see more conversations, more leaders of the NHS, you know, coming and saying, you know, to organisations that support trans kids and saying, actually can we talk to you, please. I really wanna hear what you say first hand, not through, you know, reading an article and not through, you know, someone saying, that’s what it is or a researcher whose, you know, found this bit of information, but I wanna hear from you.

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Additional, quicker and more local provision of services

One of the strongest messages from parents and carers we spoke to was that the time it took to get support and access specialist care needs to be shorter. As Josie said, ‘These huge waiting lists really need to be dealt with. And another thing that would be really nice would be if there were more [gender identity] centres’. For Georgina, the timing of care was crucial and she spoke about the importance to support young people who were ‘on the cusp of puberty’ in particular.

Mel felt there was need for additional resources and more provision.

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It’d be great if there was more provision. You know, it’s so sparse and I think, from what I understand the services are oversubscribed. There’s huge waiting lists, which means there is a real demand for this kind of service and to have them, you know, and that means we need more practitioners. We need more specialists. We need more understanding. We need more places for young people and their families and carers to go and access it.

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Find out more about experiences of waiting lists for GIDS.
Many parents we spoke to thought that the services should be made available more locally. They also felt that the appointments need to be more frequent. One parent said: ‘To have to travel for well, an hour and a half, two hours in order to get to the session. The session is every four to six weeks and they tail off to less. It’s difficult. Puts a lot of pressure on the young person to come up there and be forthcoming on that day. Something more locally accessible, I really dont see without a massive injection of funding that the sessions could be brought closer to the individual, be more frequent.’
Other parents emphasised the importance of ‘joined up care’ that would support the young people more holistically. Several parents we spoke to thought that CAMHS and GPs should be more involved in providing local services and support.

Support to people on the waiting list and their families

Another improvement suggested was that psychological support should be offered to people on the waiting list. Parents and carers we spoke to thought that there is a huge need for support while people are waiting and many people cannot afford to pay for therapy or counselling privately. Jan felt that GPs should continue to provide support even if or when a referral for GIDS was made. She said: ‘GPs need to be educated and they need to have an obligation to provide care and not just refer them on and then leave them floundering.’

E and D say people on the waiting lists are left high and dry.

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Father: I mean, you could say that we the people aren’t rushed. But they are not getting any support in that time.

Mother: But they’re not getting the support, necessarily. I mean, we gave our kids the support. We are giving them the support. Someone who can’t afford the private.

Father: High and dry for two years.

Mother: High and dry, you know, and all they, yeah, that’s right.

Father: And maybe, I mean, I don’t know what the answer is. Maybe we haven’t got the answers to provide some provide the support, if you like for people on waiting lists, separately. Maybe that would be a better system.

Mother: That would be a benefit. Maybe then you, you’re doing some sort of more rational exploration and other than—

Father: And maybe you provide it through CAMHS or you provide it through other you know, psychological services in the community. Maybe that would be a different model for doing it. But I, but I think, yeah, definitely that, that needs to happen.

Mother: That’s definitely needed.

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To support families on the waiting list, some parents thought that all familes should be signposted to national and local support groups like Mermaids. Oonagh felt that GIDS had not provided this signposting.

Oonagh says that all families should be signposted to trans positive support groups.

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When you get referred to GIDS then they should send you information, which they don’t do at the moment, they just send you a letter saying you are on the waiting list and how long you are gonna wait. They should send you information about the process, what might happen. And also, they should send you information about support. Support is the most important thing. Support groups, if the healthcare system and the NHS cant provide that themselves, then they should point you in the direction of the support groups that can help you at that stage while you are waiting, cause a lot of people are waiting for a really long time with no support and that’s a key time to get the support in place and if GIDS recommend groups, charities like Mermaids then I think that’s a way forward to help the parents and the children understand what’s gonna be happening and what the next steps are. I do know that some parents have said that theyve been to their appointments at GIDS and theyve other families in the waiting room who have never heard of Mermaids. I don’t think that should be the case at all. They should, if families are getting to that stage where theyre going for their first appointment after two years and theyre in the waiting room and they havent even heard of these organisations that can support them, there’s something going wrong with the support mechanisms for families.

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Practical advice offered in the GIDS appointments

Parents also spoke about what they would like the GIDS appointments to offer. Some felt that practical advice on how to deal with everyday problems and challenges of living as a trans person would be beneficial. As one parent said what is needed is ‘resources on a practical level. Being able to access additional help, things like the speech and language therapist.’

Ali felt the Gender Identity Development Services (GIDS) could offer more practical advice.

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One of the things I did feel from the therapy sessions that they didnt raise the problems that my daughter would be likely to encounter in the future. It was very much led by what her concerns were and there was a sort. They did address that you know, if you are not going to pass that you have to accept that. But not, you know, how to deal with that. Maybe some sort of role play sessions for them to, how are you gonna deal with it and how would you diffuse it. How are you going to afterwards deal with your own reactions to it. That, that would have been very beneficial for her. Now, I think they had adolescent sessions that they could attend at the groups during the summer. But again, those were very dominated by the ones who were more confident in themselves, which isnt going to be the answer for my daughter. So, yeah that would have been really constructive for her and quite reassuring that I knew that she knew how to deal with these things.

Practical help with the sort of clothes and how to dress and how to deal with like facial hair and stuff like that would be helpful. I know the cosmetic stuff (surgery) is no longer available on the NHS. But at least more information about it.

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Read more about the GIDS appointments.

Making the pathway clearer

Some parents felt that the current pathway needed to be clearer for the young person and their families. Kate, Oonagh and Georgina felt there should be more clarity and more transparency so that they could understand the process of going through GIDS. Kate also talked about how having more clarity about the waiting times for particular interventions would allow her family to consider private care, without feeling that they are left ‘on hold.’

Kate says the pathway needs to be clearer and quicker.

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I think the pathway could be clearer. I think, yeah. It would just be good to for it to be quicker. So just getting into it would be quicker. So, actually, even if we were then told, you know, for surgery he would have to wait this long, but we knew that. Then we could consider whether we could afford to you know, do it privately and whether that would be the right thing. But it just feels like we are on hold. So, even if every, even if they can’t say, right, okay, you get an appointment and your journeys gonna start and it’s all gonna be wrapped up beautifully in a package in six months’ time and everyone’s gonna go away happy. That would be lovely, lovely. But if we could just get that initial so you’re in the system and you have some information and the healthcare professional has met your child and spoken to them and they have information and they feel like, you know, they’re moving forward and something’s gonna happen. I think I think that would be good. Obviously, you know, more resource, so that there is a much shorter waiting list would be great. I don’t really, I don’t really subscribe to the view that oh well, you know, it’s a long waiting list, but actually this is a really difficult thing and people might change their minds and da, da, da. Actually, your assessment should work out whether the person is ready for treatment or not. Actually they don’t need 18 months to think about it if actually you do a good assessment and yes, this person has made their mind up. They are absolutely clear this is who they are. This is what they need. It would be great if it would be quicker.

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Changing the pathway

For some parents we spoke to, the improvements needed were much wider and related to how gender identity services were set up. Some of the concerns raised related to funding available for trans health services and support, which many parents felt were not sufficient. This meant that some interventions that trans people might need were not available on the NHS. For example, one parent felt that not being able to have facial feminisation surgery, on the NHS was unfair, as she felt it was key for the wellbeing of trans people.
Other parents felt that having specialist services with many psychologists and psychiatrists was based on an outdated model. Two parent thought that the care for trans and gender diverse children and young people should be separated out from mental health services entirely. Some parents wanted to emphasise that being trans was not a mental illness. Josie felt that being trans was not a ‘mental health issue’. For example, VM felt that ‘the vast majority of kids would be able to be supported by their GP. Gender services belong in primary care.’
Some parents felt that services needed more investment in gender affirming mental health and that additional psychological support was needed especially before and in-between appointments.

Josie says that gender identity services should be separated out from psychology and psychiatry.

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I think yeah, I would, actually. When we were talking about, you know, accessing GIDS for children I really think, I mean, part of the problem with the [Gender Identity Development Service], of course, is that it’s, it’s only based in a few places. But I think, I think a massive issue is that it’s a sort of, it’s a psychological and psychiatric service isnt it, [Gender Identity Development Service], it’s much wider than just Gender Identity Service and so it comes out of working with young people who have mental health problems. And I really think that that is not where, that is not where GIDS should be located for children. I think there should be another service or several other services where it’s paediatricians and it’s what do you call the department where they do blockers and all that kind of stuff?

Endocrinology.

Thank you. Yeah, endocrinologists and paediatricians and I think that’s where it should be. I think that’s where it should be located. I think that’s one of the implications of saying that being trans is not a mental health issue. It’s not. So why do you have to run the gamut of loads of psychiatrists and psychologists and things when actually what you need is practical support from a paediatrician and an endocrinologist.

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You can also find out more about people’s messages for healthcare professionals.