Waiting time for the first appointment at the Gender Identity Development Service (GIDS) vary and the latest can be found on GIDS website. Waiting times have increased significantly in recent years.
In our interviews, parents and carers spoke about their child waiting for their first appointment at the GIDS. They also shared how that experience has been for their young person and their family and their thoughts on the GIDS’ waiting times more generally. Not all parents wanted their child to go to GIDS and some felt they did not need immediate input from the service, but most felt that it was important that their young person gets support from the NHS. Several recognised that the NHS service was overstretched but also emphasised that trans and gender diverse young people have a right to effective and timely care. Some felt strongly that the service was failing young trans and gender diverse people and their families. In this section, you can read what parents and carers we spoke to said about:
• Experiences of being on the waiting list and puberty;
• Views on managing and coping whilst waiting; and
• Time spent on the waiting list.
Kate talks about the waiting times and feeling powerless as a parent.
Kate talks about the waiting times and feeling powerless as a parent.
I think it’s a real shame. I think it’s, yeah. I find it very, I don’t think that there is anything else in healthcare where you’d ever have to wait that long. And I get that there are, you know, that demand has gone up. But, I don’t think someone should have to wait two years, eighteen months, two years to even get into the service, you know, to get that first initial discussion and appointment. It just seems, especially at this point in their lives, it just feels like you can make such a difference if they were seen sooner than have to drag it out. They’ve already gone through, you know, enough waiting and enough, you know, the courage to actually say, this is me. But then to be told well, you gotta wait for a year and a half or two years before we can even start moving down that path, I think is such a shame. And as a parent it’s horrible because there’s nothing you can do. And I was talking to a colleague at work, ‘cos I am, we’ve got a new LGBTQ forum. And I was, she said, so I went along and she said to me, ‘Why do you go? You’re not gay are you?’ And she’s absolutely lovely. And I said, ‘No.’ So I explained to her about my son. And she said to me, ‘Oh, is there anything we can do here? Can we get things moved along quicker?’ ‘No it’s very specialist service, there’s nothing. There is nothing you can do.’ And as a parent that’s really hard. You want to be able to make it better for them and there’s nothing you can do. That’s how it feels. It feels like there’s nothing you can do to help them, really.
Experiences of being on the waiting list and puberty
Parents and carers we spoke to said that what mattered was not just how long the young person needs to wait to access support from the GIDS, but also the age, at which they are referred. Most parents also shared the view that support should be tailored to the needs of each individual young person and offered when and if needed.
Some parents felt that pre-pubertal children might need less support and are often able to wait longer than a young person who is at the verge of puberty. Whilst not all young trans people experience distress going through puberty, for some,
puberty related changes and pressures can create a sense of urgency. In particular, if the young person is experiencing feelings of dysphoria and
needs to access hormone blockers to put puberty on pause, or if their mental health is deteriorating. For example, Leigh said: ‘The teenagers who would need the hormone blockers if that was their journey… They need to be seen earlier than a six year old who’s just starting his transition.’ Importantly, not all young trans people feel negatively about puberty.
For parents and carers of teenage children, the situation was often more pressurised. Lesley shared that because of her teenage son’s age at the time of referral ‘it was more pressing than ever. If… he’d been sort of six, seven, it would have been frustrating but… he wouldn’t have been developing. He wouldn’t have gone through puberty and he wouldn’t have been experiencing the dysphoria that he was.’ Many parents and carers we spoke to felt that the different timeframes and challenges young people face needed more consideration for how soon a young person can access the service. You can read more about that below.
Whilst many people we spoke to acknowledged that the service was under a lot of pressure, they also emphasised the
importance of mental health and ensuring that young people get the support they need.
Josie felt that two years on a waiting list for a young person meant that they might go through unwanted puberty and experience a lot of distress and self-harm.
Josie felt that two years on a waiting list for a young person meant that they might go through unwanted puberty and experience a lot of distress and self-harm.
Well I think it's terrible. I think it's, I know two years when you're an adult doesn't seem like that long. But that's two years out of somebody's childhood. Two years, they could, you know, at the beginning of that time they could have not entered puberty. By the end of that time, you know, they could be having periods. They could have breasts. They could have a full beard. They could have a broken, you know, it's really urgent that young people get seen and the, that the level of, it's hard looking back and the level of anguish and distress.
Our daughter was really, really ill. She was really unhappy. You know, I used to have to sleep on her bedroom floor at night, because she was frightened that she would get out and harm herself. And all that time, we were waiting for help and if it'd been two years, I just, you know. And that's only, that's only for the beginning of somebody helping you.
Not being able to access timely care could be very stressful for the young person and their family. Faced with the long waiting times and decline in their child’s mental health, some parents and carers felt they had no choice but to look for other options. Some, like Lesley, Adele and Andrew decided to pay for
private healthcare. Lesley shared that the expected 18 months on the waiting list proved too much for her son knowing that ‘there was gonna be another six months at least of assessment before we got seen by the endocrinologist as part of the GIDS.’ She emphasised: ‘I knew that if we didn't put things in place, my son wouldn’t be alive.’ Similarly, Ross shared about his child and the two year waiting time that ‘their mental health was in such decline’ that he ‘couldn't envisage them being around that long.’
Ross talks about the impact of the long waiting times on the young person’s mental health.
Ross talks about the impact of the long waiting times on the young person’s mental health.
It's no kind of a criticism of the NHS. They are very overstretched and they can only give the appointments they can give when they can give them. But the mental health of the patients while they are on the waiting list is the critical thing. I think that's why the suicide numbers among the young trans are so high is it's the wait between appointments. I think it's, that's what drags 'em down from our experience that's what drags it down. And the fact you don't feel you're getting anywhere.
Views on managing and coping whilst waiting
Leigh wants trans kids who are self-harming and suicidal to be prioritised much more.
Leigh wants trans kids who are self-harming and suicidal to be prioritised much more.
So what are your views on the waiting list as it is now?
Shocking. Absolutely shocking. I've in a role within Mermaids I do work with the trans youth to a certain perspective, to a certain point. And, some of them are, you know, it's a two and a half year waiting list. Nowhere in the other NHS areas is a waiting list as long with no option of being seen earlier. If you was on a waiting list for a kidney and things were just plodding along, you know, you'd be on the waiting list, but you wouldn't be in a rush. If you needed a kidney, if something damaged earlier you would be bumped up the list. Trans kids, some of them are quite happy to wait. Some of them are being supported at home. They are not overly hating their body. So they don't need to be on blockers instantly. Whereas others are self-harming. They are binding with whatever they can find, be it parcel tape or duct tape because the finances or the support to buy binders and such they're self-harming. They are suicidal. They are not attending school.
Many parents and carers we spoke to felt that older trans and gender diverse children should be prioritised by the Gender Identity Development Service. Oonagh, whose pre-pubertal daughter was on the waiting list said she felt lucky and hopeful that her daughter will get timely support she needs at GIDS. She emphasised ‘I know so many children don't realise they're trans until… they hit puberty. And then it's too late for them to wait two years. They… need to get the support there and then.’
Several people also felt that priority should be given to young people who were struggling with mental health, were self-harming or suicidal. It is understandable, that parents of children who are distressed would want their child to access support as soon as possible. However prioritising young people on the basis of how distressed they are might create a hierarchy where young people have to reach a point of self-harm before being able to access support. It is important that support should be offered to everyone who needs it.
However, many parents and carers thought that the only way the extremely long waiting times can be tackled is through more provision, with ‘more clinics, more specialists trained’ as one father put it (Andrew). Not everyone felt that more GIDS provision was a good thing though and some parents thought moving trans-specific healthcare into primary care and offering more support outside of the GIDS would result in a
better healthcare system for young trans and gender diverse people and their families.
Jan felt the long waiting times were unacceptable and the service needed more funding to meet the growing demand.
Jan felt the long waiting times were unacceptable and the service needed more funding to meet the growing demand.
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I think it's absolutely unacceptable, really unacceptable, because a lot of these kids and young adults and adults that come out they're, they're struggling mentally. You know, they're suffering dysphoria around their body, around their gender. And, you know, if I went to the doctors with a pain in my abdomen and they couldn't work out, you know, they couldn't fix it there and then they would refer me onto a specialist and I would get seen within a reasonable length of time, you know, and this is no different. They should be they should be given immediate treatment. And if they can't, at the moment they need to look at the service that's being provided and the funding that's been made available to it. And you know, they need to provide a service that's suitable for demand and at the moment it's not fit for purpose.
Time spent on the waiting list
Many parents we spoke to agreed that having to wait up to two years to be seen by a specialist was a very long time, especially for a young person. Andrew emphasised: ‘The waiting list for the gender identity clinics are incredibly long. We had to wait about two years before we even got to see these two people [specialists].’ Importantly, many young people whose parents and carers we spoke to had been referred a few years ago and so faced a significantly shorter waiting time than the currently estimated two years from referral to the first appointment (Summer, 2020).
Parents and carers we spoke to also had diverse experiences of how long their child was actually on the waiting list. For those whose children got referred to GIDS few years ago, the wait was shorter, however, for most recent referrals, the waiting times had significantly increased. For example, Josie’s daughter waited 18 weeks for her first appointment when she was referred a few years ago. Despite that, Josie felt the 18 week wait for her daughter to be seen by the service were ‘torment.’ She emphasised: ‘I don't know how people are coping by now.’ Lesley’s son waited 20 months and Jan’s daughter, who was referred much more recently, was facing a two-year wait.
In addition to the long waiting times, facing barriers in the referral process, could add to the overall time before the young person is seen by a specialist. Whilst most parents we spoke to accepted the waiting time as something they could not do much about, Lisa, whose GP refused to refer her son causing a delay, spoke about challenging the waiting time. You can read more about the
referral process to GIDS and
experiences with the GP.
Based on a delay with her son’s referral, Lisa challenged the waiting list.
Based on a delay with her son’s referral, Lisa challenged the waiting list.
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The waiting list, once we did get onto the waiting list and that took three or four months just to get onto the waiting list. By the time we got onto the waiting list, I think that was in excess of a year, although, because I then kicked up a fuss about the fact that the referral should have been made at x date and I wanted, just because the medical, the NHS had made a mistake in the referral process. I didn’t want to be disadvantaged and make my son wait a further three months or four months, whatever it was. So, they did reschedule a waiting list allocation and moved us to where we should have been, were the mistake not made. But that was a battle…
I think we, originally we were told it was going to be about a year. But because we, because I made the fuss about the mistake within the NHS and having missed three or four months then it ended up being about nine months, because we were moved to the position that we would have been in but for the mistake.
Whilst on the waiting list, some people we spoke to felt that there was little support available for them or their young person. For instance, Ali said that ‘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.’ D and E who were interviewed together agreed that young trans and gender diverse people need to be better supported while they are on the waiting list.
Whilst most people we spoke to felt the waiting time for the specialist gender identity services was too long, not everyone felt that way. One parent who did not accept his child’s gender identity said he was ‘very pro waiting list[s].’ He did not want his daughter to be seen by a specialist at the GIDS and said that ‘fortunately, there’s a massive waiting list there, so… hopefully… there’s no rush to do anything.’ It is important to note that parental support and acceptance are key to the wellbeing and mental health of young trans and gender diverse people and so is access to timely care. Denial and delaying of care cause harm.*
Finally, in our interviews, several people felt they wanted more communication whilst on the waiting list and between appointments. Jan said that her daughter’s referral was done in November and that they ‘didn't hear anything back [from GIDS]. We… rang and spoke to them in December. And I think they confirmed at that point that she was on the waiting list. So, when we get to December this year it will be two years we'll have been waiting’
Lesley speaks about the stress of now knowing when her son would be seen.
Lesley speaks about the stress of now knowing when her son would be seen.
During that wait, to be put on the waiting list, we heard nothing. No correspondence or communication at all from gender services of when and if we were gonna be seen. It was only when we got the letter to say we’d been accepted on the waiting list and the waiting list was currently 18 months. And we had nothing again until we got the appointment 20 months later. So we were left in the lurch not knowing if and when an appointment was going to happen. So that was huge. What would have been useful, just even to have some sort of follow up, just a brief telephone call to say, you are on a waiting list.
* See for example:
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).
