Content warning: mention of suicide risk.
Many young people we spoke to were unable to access the NHS Gender Identity Development Service (GIDS) for children and young people or the Gender Identity Clinic’s (GIC) for adults over the age of 17 due to long waiting lists (Experiences of puberty and puberty blockers).This meant that people explored alternative options such as private healthcare and sometimes self-medication.
Here we cover the following experiences:
- Waiting lists and deciding to explore alternative options
- Experiences of private healthcare
- Private healthcare, inequality and poverty
- Racial inequalities
Waiting lists and deciding to explore alternative options
Alistair said, ‘I knew the waiting list would be ridiculous. I had a friend that had waited two and a half years and still wasn’t being seen’. G said, ‘My friend has like a five year wait on the [GIC] list. I don’t think that’s fair. I think it might kill him.’
Young people described how this wait was frustrating, distressing and led to some people trying to find quicker ways to access medical support and treatment. Alistair said he ‘was such in a mess’ when he first came out. He described how he ‘daren’t even imagine’ where he’d be if he had waited for NHS services to start his journey. Jaz chose private healthcare because she was having a ‘mental health crash’ after having appointments with the GIC cancelled and delayed. She said ‘I’ve been sitting on this for…a number of years, I know what I want to pursue, which was taking hormones’.
Ari talks about the excessive cost of private healthcare but why people chose this option.
A few young people accessed private healthcare for puberty blockers, describing a feeling that time was running out. Charke said, ‘I felt I was going through puberty so quickly that I needed to get on blockers soon or there’d be no point’.
Young people heard different stories about private healthcare online and in the media. Summer stated there was ‘a lot of misinformation’ about private healthcare providers. Jacob said, ‘I had an argument with my mum about going private’. He told her ‘private clinics are okay, [they’re] not all a sea of sharks’. He said private healthcare was made out to be ‘this demon pit of people just wanting your money and your health’.
Bay says with a two year wait ahead of meI can’t wait that long’ and decided to seek out private healthcare options.
CJ pointed out private healthcare options are ‘expensive, there [are] also wait lists for it…sure, they are lesser, they are about half the time, but there are still waits. There’s no easy short cut through it.’ They also suggested that ‘it’s all the same doctors …and it’s all the same surgeries, the difference just seems to be thousands of pounds’.
Jacob talks about how being on the waiting list caused him to have suicidal feelings.
Experiences of private healthcare
Young people who used private healthcare spoke positively about it. Private healthcare providers that serve England and Wales were mentioned. They said each service provided their own form of assessment by qualified healthcare professionals to help trans and gender diverse people access healthcare. They talked about the assessment process, how they felt answering practitioner’s questions and the communication with the service. Generally, the process for accessing hormones was similar across private healthcare providers and NHS providers.
The initial assessment began with in-depth conversations about gender identity and personal history. Alistair said, ‘[The practitioner] asked me how long I’d felt I was transgender… [they] asked me a lot about mental health and if I’d ever tried to commit suicide or if I had any ongoing mental health issues’. Kat explained ‘I had a phone call with one of their counsellors and we described what would happen if they believed [treatment] was right for me’. This was called an ‘information gathering session’.
Jack shares their experience of private healthcare assessment and process.
Ezio said he got ‘a lot of information and [private practitioners] were really honest about everything and we discussed my feelings’. He says, ‘it was almost like a counselling session I guess, you just sort of talk through how it is you are feeling and what you want’. Loges said he contacted the service and ‘they asked for a lot of information …about myself and my past …so that they could make a good judgement’.
People spoke about the importance of open, honest and supportive communication with their doctors. Reuben liked how his doctor ‘didn’t try to make it all flowery and pretty, she was very real about it and said that there are gonna be some negative side effects with taking hormones and it needs to be something that is taken very seriously’. A said the process was ‘like the informed consent model where it was just them giving me all the information and then me deciding like, “Is this okay?”’. She said it was ‘really good’.
Jacob talks about their experience of private healthcare they’ve been brilliant.
Loges said one of the doctors ‘explained everything …which I think was quite good that she gave me all the information’. He said he felt ‘really validated’. Tom said his doctor ‘made me feel really comfortable… and made me feel really happy in myself.’ Reuben felt his private providers had been ‘excellent’. He said ‘it’s easy to access, I’ve been able to book appointments online, it’s always been really fast responses as well.’
Some young people found communicating with their doctor a struggle. Anderson described their experience as ‘a bit shit’. They said their doctor didn’t communicate with other doctors about the shared care agreement very well, and [they] had a lot of trouble with them. Alistair had concerns about the lack of support in-between appointments. They said they ‘could have done with some ongoing support rather than just see you in six months, hope that’s great for you’.
Jessica describes her experience of private healthcare they have this strict process and kept me well informed.
A few described different experiences within private healthcare. One person said ‘you don’t need dysphoria to be trans’ but felt pressure of having ‘a cisgender clinician tick the boxes and confirm you to be trans and that you do have gender dysphoria’.. They said they were ‘so nervous for the appointment…[I] had all my answers rehearsed and lied through my teeth.’ They felt ‘if I go in and tell them that I haven’t had dysphoria since my childhood well they won’t believe I am trans’. M was told by doctors ‘because I’m non-binary I might need two appointments’ without being told why. They said at the first appointment they ‘had a conversation about my life [with the doctors] and what I wanted going forwards’.
Bay shares their experience of private healthcare and feeling like they had to play… the game.
G talks about the frustrations they have with private healthcare it costs £50 every time you call them.
Private healthcare, inequality and poverty
In talking about private healthcare, young people spoke about inequalities in the trans healthcare system. The significant cost of private services was a barrier for many young people accessing any form of healthcare. People described how in their first year trans patients could expect to pay around £1000 for private healthcare, including initial appointments, monthly fees, blood tests and prescriptions in some cases.
June stated that ‘it’s really difficult for people that can’t afford’ private healthcare. One young person whose family was on benefits wasn’t able to access private services. Declan said, ‘I was gonna go private for testosterone but it’s too expensive, I felt really priced out of it.’ H also commented that the prices quoted by private healthcare services were ‘too much’. PJ added ‘I haven’t looked into it too much because I just know that I wouldn’t be able to afford it.’
H described struggling to pay for private healthcare “there’s times of unemployment and homelessness, so…trying to keep up with the payments for the hormones is a struggle.” He said “it was one of those things where sometimes…I’d have to make the choice, either eat or, or get [testosterone]. So obviously the hormones always obviously kind of came first.” Those who were able to access private services felt they were lucky to be able to afford it.
Cas says private healthcare is more to do with a capitalistic approach to get money.
Racial inequalities in trans healthcare was also discussed by some. June stated that “I just really think that there needs to be a big focus on like asking BAME Trans people what we need because we’re the only ones that are gonna be able to tell you…what our concerns are and how we’re disproportionately affected.” H said “I suppose with any race you always have that…risk of rejection with any culture, any race, but with…the black community it’s very frowned upon…even gay, and trans is like just worse’. H described how he “got kicked out of one of my places because [the person he lived with] found out that I was trans”. He shared how being homeless “did have a knock on effect…to try and keep a job and things like that.”
N said that they ‘haven’t yet met a non-white healthcare professional working on trans health’ and that when they met a private psychologist, it was ‘like, spending an hour or two in an office with this white guy I’ve never met before, having to talk about like my sexual preferences, my sexual histories, my family history, mental health history, trauma, like and then to get an official certified pathologisation at the end of it. They commented it was ‘weird …to feel so happy and elated about that.’ One person said ‘I come from a working class family, I’m not white…sometimes it does make me feel like I’m not, like I’m…less valued as a person by the whole of society.’
These inequalities made some young people challenge how the healthcare systems in the UK were set up. CJ said, ‘I don’t think that quality healthcare should be something that you only get if you can afford to pay for it.’ They said, ‘we pay into a system that should be able to support us’. N said ‘the patient really doesn’t have a lot of power, you don’t have the power to even decide what you get.’ In light of this, some participants looked for ways to support other trans people. Beth was ‘part of a couple of LGBTQ+ and trans groups’ in their local area. They said, ‘I would like to be able to set up like a fund through them for trans people trying to access transition related care that isn’t easy for them to get to.’ Reuben said, ‘I feel like [healthcare] should be something that’s available to every trans person and not just ones that can afford it because it’s disgusting. It’s a person’s right’.
M says I don’t think private healthcare should exist healthcare should be easily accessible to everyone.