When Emma Wilson finally received a date to attend her first gender identity clinic (GIC) appointment, she had been waiting for more than two years.
Having experienced gender dysphoria as a child, and suffering from severe depression due to a lack of testosterone, Emma was 17 when she first began to feel detached from her body, and was diagnosed with depersonalisation disorder.
‘I was worried about going through male puberty,’ recalls the 25-year-old data analyst. ‘I would cry every night imagining I would wake up with facial hair, and I remember praying every night that I would wake up as a girl.
‘It felt like I wasn’t alive, as if I was living in a dream. It was like watching someone else live my life, as if I were in a dark room looking at a screen of another person.’
Soon Emma found herself unable to cope and with the torment of her feelings getting darker each day, she suffered a mental breakdown. Eventually, after finding the strength to come out to her mother, she had an appointment with her GP in September 2017, where she was referred to the North Region Dysphoria Service in Newcastle.
It took two years for Emma to get an initial appointment at the clinic, where spent an hour answering questions about her childhood, but since then she has nothing further. She’s not given any sort of indication of next steps and, Emma says, she has received zero support.
Instead, she is currently living in limbo, forced to put her plans for gender reassignment surgery on hold.
‘The clinic even asks people not to contact them about waiting times,’ Emma tells Metro.co.uk. ‘It’s actually one of the first things the automated message tells you when you call the number on the website.
‘It’s frustrating that I have to rely on the NHS for surgery that will improve my life, and have to face waiting almost half my life just to be able to finally get it. I currently have about four years to wait until I’ll be able to begin surgery.’
Emma is one of countless trans and non binary adults who have been forced to put their transition on hold amid a surge in the number of patients being added to waiting lists at GICs across the UK.
At present, trans and non binary people have been stuck on GIC waiting lists for an average of two years, while some have been forced to wait more than five years for an appointment, Metro.co.uk has found.
According to data obtained through Freedom of Information (FOI) requests, more than 26,051 adults were on a waiting list for their first appointment at an NHS GIC last year, an increase of just over 31% compared to 2020.
It’s a figure that has risen by well over half in the last four years, with the total number of patients waiting for an initial consultation increasing from 10,571 in 2018, to 25,621 in April this year.
However, the total amount is expected to be higher, with the Welsh Gender Service failing to disclose figures within the 20 working-day time limit set out under the FOI Act.
One clinic in particular – Sandyford – operated by NHS Greater Glasgow and Clyde, reported a spike in waiting list numbers by more than 295%, increasing from 964 in 2019, to 2,086 in March this year.
Meanwhile, at the Tavistock and Portman NHS Trust, Britain’s largest gender identity clinic, the number of trans and non binary adults waiting for their first appointment stands at 11,057, an increase of 85% compared to 2019.
At present, there are only seven NHS-operated GICs for adults in England, a single Gender Service in Wales, four GICs in Scotland and two in Northern Ireland – all of which serve an estimated trans population of between 200,000 to 500,000 people.
And with the NHS forced to postpone millions of non-essential surgeries, including gender affirming procedures, as it prepared for an influx of coronavirus patients in 2020, the pandemic has only served to compound the delays.
However, Cleo Madeleine, communications officer at Gendered Intelligence explains that even though the pandemic has had a slowing effect on NHS services, increased wait times for gender identity services is something that existed long before Covid-19.
‘There are real systemic issues that have been going around for a long time,’ she explains. ‘What’s happened is that as representation of trans people has continued to improve globally, healthcare options have become more visible.
‘And as acceptance of trans people increases, more people are seeking healthcare and more are referring themselves to specialist services, so at some point in the past 10 years that’s exceeded capacity with no changes to the service.’
And the impact of such delays can be hugely traumatising – as research has found there are higher levels of suicidal ideation in people suffering gender dysphoria, with a 2017 Lancaster University study reporting that transgender people are nearly twice as likely to take their own lives.
‘I regularly come across individuals in desperation as a result of delays to transition,’ explains jane fae, director of TransActual UK and chair of the monitoring group Trans Media Watch. ’International studies suggest that refusing or delaying transition can lead to multiple life-shortening outcomes including depression, substance abuse, self-harm and difficulty settling to anything, whether jobs, family or personal life.’
‘I have also come across individuals who have detransitioned as a result of delays,’ adds jane, who chooses to spell her name in lower case. ‘If you don’t get the support from the professionals, it makes you doubt yourself. Some people, in the face of that pressure, decide to stop transitioning publicly because it is too much hassle.’
However, it’s not just declining mental health. Increased waits for gender affirming care have seen growing numbers of trans and non binary adults turn to self-medicating in a desperate bid to continue their transition.
Using hormones such as testosterone and oestrogen, self-medicating is a common practice for those unable to afford private treatment, but combine desperation with the number of products available to purchase from unregulated sources, and it’s a practice fraught with risk.
Emma first purchased hormones online four years ago shortly after turning 18 when her gender dysphoria became so unbearable she contemplated taking her own life.
‘I began as a last resort,’ she recalls. ‘It was scary, and when I first started to look into it, it became overwhelming. I remember my ex-boyfriend asking me if I was sure I wanted to start.’
Using a range of pharmacies, she began to order oestrogen pills from abroad and find guidance online about how to self administer responsibly.
‘At that point I felt excited and couldn’t wait to see the changes happen,’ remembers Emma. ‘I remember I had a big smile on my face the first time. I’m very lucky that I could grasp the subject very easily though, as I know there’s a lot of trans people out there that wouldn’t have been able to and would have had to wait for the NHS otherwise.
‘Even so, it made me sad knowing I had to do it all on my own and not knowing if any GP would help me without a doctor from the GIC.’
Dr Jane Hamlin, president of the Beaumont Society, the UK’s longest established support group for trans people and their families, says she fully understands why some people are pushed to acquiring hormones online, but discourages them from doing so.
‘Most people who purchase hormones from online sources are optimistic that all will be well – otherwise they probably wouldn’t do so,’ she explains. ‘However, it does demonstrate the level of desperation that they have reached to ignore the possible consequences and take what is, after all, a leap in the dark.
‘Eventually when the individual realises that this dysphoria is not going to go away because it is the real them, they need to do something about it. Genuine safe hormones take several months to have a noticeable effect, so someone could have been using something dangerous, or useless, for a significant length of time before suspicions are raised.’
When Jess* was told that her referral for the Charing Cross Gender Identity Clinic had been lost despite spending years stuck on a waiting list, the despair was overwhelming.
‘My world collapsed in on itself,’ she explains. ‘It was a mix of having to reorganise my whole life as if an instant dramatic change had happened, and nothing was going to be the same again.
‘Getting a referral in the first place was next to impossible,’ Jess, 38, tells Metro.co.uk. ‘I remember my GP leaned across the table and whispered that she didn’t agree with the transition and wouldn’t help, which was stressful as I ended up having to look around and go private.
‘I was furious, it felt unfair and like an abuse of power. I couldn’t understand why she would do that to me, because at the time I thought that most people were trans friendly.’
With the prospect of being re-referred and, worse, the trauma of returning to the bottom of the waiting list, Jess – who had spent much of her adult life suppressing her identity – felt her mental health spiral out of control.
‘I became very depressed. My boyfriend at the time was convinced I was going to kill myself – I just didn’t really see the point in fighting,’ she recalls.
‘I covered up every reflective surface in the house with newspaper because the sight of myself made me want to die. I lost more than three stone in weight because I didn’t want to feed myself. I felt hopeless – I would go to work and then straight home to bed until work again.’
Increasingly concerned about her welfare, Jess’s partner convinced her to take out a loan to help pay for private treatment in Thailand and, after making an application to a loan provider, the pair were able to borrow £36,000, which they said would be for home improvements.
As soon as the money had entered her account, Jess and her partner spent the next two months cleaning their house for her recovery and organising flights to Thailand, where she would undergo facial feminisation and sex reassignment surgery with one of the six major private companies offering such procedures.
Jess explains that despite the relief of finally being able to access the treatment she had waited so long for, she couldn’t help but feel anxious. ‘I had no idea if it was going to happen or if I had been scammed until I arrived,’ she recalls.
‘You have to transfer the whole amount to a random bank account before you go and communication is not the best. It was less of a sense of relief, and more of being given life back and having drive – my theory was that even if life was horrible afterwards, I would at least not hate myself.’
While opting for private treatment was a life changing decision for Jess, dramatically improving her quality of life and ability to live openly, the outcomes have been far from plain sailing, with the process costing both her relationship and financial stability.
‘The long-term relationship with my boyfriend didn’t survive my recovery, nor the money stress,’ she says. ‘I ended up selling just about everything to pay the instalments before finally going to Citizens Advice and getting the recommendation to declare bankruptcy.
‘Now, I can’t own a car, and I live in a damp, black mould infested house. But I’m still here, I feel strong and I feel confident.
‘The depressed mess I was before just doesn’t exist anymore,’ adds Jess. ‘I have bad days like everyone else but at least I don’t hate myself, I don’t want myself gone.’
For Joe*, a 36-year-old trans male, the three-year wait for his first GIC appointment has been unbearable.
‘I’ve only been contacted once in all this time,’ he explains. ‘I’ve been given no update on the progress of my referral, no update on the wait times – I didn’t even get confirmation they’d received the referral in the first place until I contacted them.’
Desperate to discuss his gender dysphoria and, struggling to cope with hormone imbalances, Joe, with the help of his husband, decided to seek private treatment in an attempt to bridge the gap until his appointment.
However, it was not an easy choice. Under the impression his transition could be sped up, Joe was told it could still be a long wait – and with appointments often exceeding £500, it has proven to be a costly option.
‘I was told it could be a few months before they could see me as they were inundated,’ he recalls. ‘But I knew that the longer I waited, the more I’d damage my mental health with all of these thoughts, and as the wait times kept getting longer I started to lose hope I’d ever be seen at all.
‘I felt like I had a ticking clock behind me. The longer I waited, the sicker I got.’
Luckily, a last minute cancellation at a private clinic meant Joe, a stay at home parent, was finally able to get an appointment in April 2020 and, after an initial assessment with an endocrinologist over Zoom, he was given a provisional prescription for testosterone to address the severe breast and chest pain triggered by the irregularities with his hormones.
‘Within days my pain levels subsided,’ he explains. ‘I could finally function rather than being bedridden – it was quite a shocking change. Had I not been able to access the testosterone, I am not entirely sure I’d even be here right now. I can barely remember the person I was three years ago, and I definitely don’t miss her. She suffered for so many years, she was so full of pain and self loathing.’
Although he was able to access the hormones he desperately needed, private treatment is not a viable long term solution for Joe ‘Because I went private, my GP refused shared care,’ he explains. ‘This means they’d do my bloods, but wouldn’t prescribe my hormone therapy.’
‘Not only is this extremely expensive, around £50 for a single month’s supply of testogel, but I also have to request it weeks in advance so I don’t run out.’
The financial impact also means that Joe is unable to pursue surgery as part of his transition.
‘I would very much like top surgery, but the cost of that privately is in excess of £6000 which is money I simply do not have,’ he explains.
‘So like many others, I’m stuck. I’m lucky that I have my hormone replacement, but I’m also having to hide my bust and growing to resent it more and more as my body changes.’
According to Cleo, gender identity services need to be developed at a primary care level before the growing backlog in referrals can be addressed, but this can only happen once attitudes towards trans healthcare improve.
‘The current system of gender identity services has to change,’ she explains. ‘It needs to become more accessible, and we need a widespread rollout. But, we also need to not silo the conversation around supporting trans people into healthcare, because it has to be much more holistic than that.’
‘In some places, this has to come from the top. There are some people in government who are trying very, very hard to improve things for trans people. But unfortunately, we are just seeing time and time again that they’re being blocked, and without that change things are going to continue to be difficult.
‘The only way to really improve the medical safety of the trans community, whether that’s young people, adults, or anyone seeking treatment, is to massively improve accessibility, and relocate treatment into communities to provide proper mental health support.’
*Some names have been changed
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