The Gender Identity Development Services waiting list

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
  • Time spent on the waiting list

Kate talks about the waiting times and feeling powerless as a parent.

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.

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 didnt 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 ‘couldnt envisage them being around that long.’

Ross talks about the impact of the long waiting times on the young person’s mental health.

Views on managing and coping whilst waiting

Leigh wants trans kids who are self-harming and suicidal to be prioritised much more.

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 dont realise theyre trans until, they hit puberty. And then its 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.
Parents and carers talked about their experiences of their child self-harming or suicidal behaviour. In our interviews, people stressed the importance of psychological support and spoke about the things they did to support their young person’s wellbeing. Many also spoke about the sources of support that were there for them and in particular the support they received from charities such as Mermaids.
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.

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.

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 didnt 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 ‘didnt 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 well have been waiting’

Lesley speaks about the stress of now knowing when her son would be seen.

To find out what parents and carers we spoke to said about their experiences of GIDS appointments click here.
* 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).

Experiences with the GP

GPs have an important role to play in supporting trans and gender diverse young people and their families. For some parents and carers, the GP...