Transgender healthcare in the UK is in crisis and people of colour are at the sharpest end
A stretched NHS, transphobia and rigid definitions of ‘essential’ care are contributing to a perilous situation for trans people seeking healthcare.
SJ Zhang
25 Oct 2021
Parishma Patani
When Mai* was 17, she began to seek support from her GP on transitioning. The teenager had been struggling with gender dysphoria for years and by the time she turned 16, she had reached breaking point and decided to come out to her mother. With her mum’s support, Mai felt ready to seek gender-affirming care, beginning with Hormone Replacement Therapy (HRT). But the system she was about to navigate was not prepared for her, or thousands of other transgender and non-binary people, desperate for healthcare tailored to them.
Mai was met with long waiting lists, a lack of clear information, and medics who did not seem trained to deal with issues relating to transgender healthcare. “The first thing that I did was to go to my GP,” Mai remembers. “When I spoke to my GP, they weren’t sure what to do. I could see that there was a clear lack of training regarding this medical matter.”
By the time Mai had her first appointment at the Tavistock and Portman Gender Identity Clinic in London, she was 20. It took another year and half for her to finally begin Hormone Replacement Therapy, as she had to attend diagnostic sessions with clinicians, with several months of waiting in between, before she could start receiving hormones. “[It was] difficult for me to wait those three years [for my first appointment], because at that time it was very much a struggle, you know, feeling gender dysphoria and not feeling happy with my body,” Mai adds.
During her years-long wait to begin treatment, Mai had zero professional mental health support in between appointments. She began to self-isolate from society and fell into a deep depression, feeling lost without professional guidance to turn to. “I feel that there’s less care for trans lives,” Mai tells gal-dem. “The medical field does not give a fuck about this situation. I don’t think they see trans lives as lives that are worth saving”.
A crisis in care
Mai’s story is sadly not an outlier. Trans healthcare in the UK – from gender- affirming treatments to general care – is in crisis. A climate of transphobia, a stretched NHS and an archaic infrastructre that pathologises inflexible pathways are all contributing to an increasingly desperate situation for trans and non-binary people seeking the treatment they’re entitled to.
Author Shon Faye writes in The Transgender Issue that, “large parts of the [trans-related healthcare] system remain unreformed, anachronistic and unfit for purpose” in the UK. Whilst the UK’s trans-related healthcare system remains centred around a handful of regional Gender Identity Clinics, many other countries, such as the US and Canada, have progressed to more flexible forms of care where “multiple health centres could initiate hormone treatment more quickly on the basis of the patient’s informed consent, without any need for a formal process of diagnosis,” she notes. As Faye points out, the fight for healthcare investment is one that benefits all. The current system, however, is working for no one – and for trans people of colour, who are subject to additional barriers to accessing healthcare, the outlook is even bleaker.
A recent survey by TransActual, a trans-led campaigning organisation, found that trans people of colour are twice as likely as their white counterparts to experience transphobia when accessing trans-specific healthcare. More than half of transgender people of colour experience racism when accessing both trans-specific and general healthcare in the UK. Further reports of medical racism in healthcare settings see transgender people of colour hesistate to in seeking help in the first place. And without swift action, the problem looks to increase.
When it comes to gender-affirming care – an umbrella term that refers to treatment transgender and non-binary individuals seek to help affirm their gender identity – access has become a bottleneck. Whilst not all trans and non-binary people seek to transition medically, for those that do, the wait can feel torturous.
“We’re not forgotten about, they know we’re on the waiting lists – we’re ignored”
Eva Echo
In England there are seven NHS Gender Identity Clinics for adults, and only one for under 18s. In the devolved nations, Wales is served by a single Gender Service with a base located in Cardiff, Scotland has four physical GICs and Northern Ireland, two. NHS patients are usually entitled to treatment within 18 weeks of a referral, however transgender and non-binary patients seeking gender-affirming care often have to wait years for their first appointment with a Gender Identity Clinic. The Tavistock and Portman Clinic in London recently made their current waiting list public; prospective patients face a four-year gap between referral and treatment and nearly 10,000 people are in line for care.
“We’re not forgotten about, they know we’re on the waiting lists – we’re ignored,” says Eva Echo, a transgender activist based in Birmingham. She’s one of the thousands of people still waiting for their first appointment with a GIC, and has been since 2017. Her clinic no longer accepts new patient referrals. “We’re in limbo,” says Eva. “We were left to fend for ourselves.”
Whilst in the queue for gender-affirmative care, Eva has tried to seek mental health support from the NHS. Instead she, like many other trans people, was redirected to helplines run by charities like the Samaritans and local LGBT+ groups. These services, which are often underfunded, are also frequently ill-equipped to deal with issues of gender dysphoria. The lack of interim social and mental health support for transgender patients on waiting lists is concerning, given that transgender individuals already suffer from high rates of depression and anxiety.
An under-resourced NHS
Between 2011 and 2015, the NHS was required to make £20bn of ‘efficiency savings’ as part of the government’s austerity regime. Whilst the government has promised to increase funding for the NHS, the British Medical Association believes that this is still far from enough to properly invest in public medical services. On top of that, the Covid-19 pandemic has added pressure to an already buckling NHS: between April and December 2020, 2.2 million fewer elective treatments were carried out by the NHS than usual. Meanwhile, organisations like the BMA are desperately asking for an immediate increase in the numbers of doctors, nurses and other healthcare workers, saying that staff shortages are one of the biggest threats facing the health service.
In such circumstances, minority care often suffers: there were multiple reports of supposedly “non-essential” gender confirming surgeries being cancelled during the pandemic, and a hormone clinic for under-18s suspended all services. According to medical sociologist Virginia Kuulei Berndt, labelling forms of care as “non-essential” and “elective” often impacts care for marginalised groups, such as LGBT+ people and people living with chronic illness. Just whose care is perceived as “non-essential” is telling.
Shortages of both specialist NHS staff, educators, and time mean areas like trans-specific healthcare are neglected. There is a lack of training for GPs for dealing with transgender and non-binary patients seeking healthcare, a fact acknowledged by the Royal College of General Practitioners in 2019.
“The Royal College of GPs recognises that GPs are not experienced in treating and managing patients with gender dysphoria and trans health issues. Gender dysphoria and gender identity issues are not part of the GP curriculum or GP Specialty Training,” the College wrote in a statement, acknowledging that long waits for specialist clinics are also pushing more patients with gender dysphoria back to untrained GPs for help. In Eva’s experience, this meant she had to spend hours researching and and educating her own GP about transgender issues and the gender-affirmative care she wanted.
“Due to discrimination and a lack of targeted information and care, transgender individuals may be hesitant to seek out sexual healthcare”
When it comes to healthcare beyond gender-affirming treatments as well, transphobia or clinician unfamiliarity with specialist healthcare can impact treatment. Seventy percent of 697 TransActual survey respondents said they had experienced transphobia while trying to access general healthcare. “Every single thing that could possibly happen to you health-wise is going to be directly credited to the fact you’re taking hormones”, says Rico Jacob Chace, director of TransActual. He recalls a conversation with a transgender person whose health concerns were quickly dismissed as side effects of hormone replacement therapy by their GP.
He’s describing something known as ‘Trans Broken Arm Syndrome’, a term coined in 2016 by Naith Payton, a trans writer, to describe the misguided assumption that “all medical issues are a result of a person being trans”. Consequently trans people’s general health issues are often dismissed.
This means health problems – especially ones related to reproductive systems – can go undetected. According to the Terrence Higgins Trust, a sexual health charity, “despite remarkable progress overall in reducing HIV infection, our trans communities experience high levels of HIV and poor sexual health”. Due to discrimination and a lack of targeted information and care, transgender individuals may be hesitant to seek out sexual healthcare. TransActual’s research saw 27% of transgender and non-binary people report that they ‘always’ or ‘often’ avoided GPs for ‘gender-related’ healthcare such as cervical cancer screenings or prostate checks.
Similarly, researchers found that pregnant transgender men faced structural barriers to accessing regular pregnancy-related care, as well as transphobia from staff and institutional erasure. Not only are healthcare providers failing to provide adequate gender-affirming care to transgender people, but they are also failing across the spectrum of healthcare.
Additional barriers to accessing care
For transgender and non-binary people of colour, additional barriers to receiving specialist healthcare persist. When Mai finally secured an appointment at a Gender Identity Clinic, she was surprised to find that she was almost always the only person of colour in a waiting room full of predominantly white transgender patients. “[This] made me feel a bit uncomfortable, like I’m the only Asian who is trans.”
Her experience reflects a worrying trend: according to one 2019 study, less than 10% of referrals to the Gender Identity Development Service were for young trans people of colour, a figure the researchers described as an “an underrepresentation” compared with both the national population and referrals to Child and Adolescent Mental Health Services. The study suggested that the factors behind the stats included cultural and linguistic barriers to accessing care; treatment can also be delayed if parents are unsupportive in referring under 18s for gender-affirmative services.
In the process of being evaluated to receive gender-affirming care, patients are often asked if they are ‘out’ to their families. This, warn activists, can become a form of gatekeeping or put pressure on transgender people to come out to their families, even if it is not safe or strictly necessary to do so. Cultural and religious factors are often overlooked or neglected during the process of providing gender-affirming care. For trans people of colour under the age of 16, the need to involve a parent can pose a problem; 95% of transgender people of colour survyed in TransActual’s report said they’d experienced transphobia from family members and 35% have experienced homelessness in their lifetime.
“Insidious transphobia also intermingles with Eurocentric beauty standards to impact certain types of care”
“[Healthcare providers] need to take into account [if you’re] a person of colour, your background, heritage, your upbringing, [can mean] it’s a lot more difficult for you to come out to your family,” comments Eva Echo. However, this is difficult to do in the current system, which Eva calls a “a one size fits all” process, where clinicians often lack the time to discuss more nuanced issues. Instead a clinician just “goes through the motions” says Eva, adding that “there’s no real connection to you as a person”.
“When it comes to diversity and inclusion, it’s almost an afterthought these days,” Eva tells me. “What [institutions] really need to be doing is going back to the foundations, ripping it apart and building it back up with inclusion and diversity in there.”
Insidious transphobia also intermingles with Eurocentric beauty standards to impact certain types of care. The concept of ‘passability’ – the ability to be perceived by others as the correct gender – and rigid ideas of adhering to gender binaries can affect the quality of gender-affirming treatment trans people of colour receive.
“Passability affects the way [doctors] treat you and has a major impact on how you get treatment”, Mai tells me. Mai believes that some of her features, such as a visible lack of an Adam’s apple, have helped her pass and experience a quicker and smoother process of accessing care. In contrast, Mai says that transgender women she knows who have a more conventionally ‘masculine’ appearance have reported being treated with contempt by clinicians. Eva recalls a conversation she had with a fellow trans woman who alleged that after years of waiting to see a specialist, a clinician lambasted her for not being “trans enough“ adding that she wasn’t “making enough effort” to be “feminine”.
In his writings, LGBTQI+ health advocate and therapist Y Gavriel Ansara recounts helping transgender clients of colour in the US who had been failed by mainstream health providers. He recalls meeting two Black trans women who were denied hormones and surgeries by non-Black counsellors “who considered them too ‘masculine’ to be women according to non-Black cultural gender norms”, and a transgender man of Asian/Middle Eastern descent who was considered to be too ‘feminine’ to be a transgender man, because he enjoyed wearing brightly coloured scarves and eyeliner.
Eurocentric and binary understandings of gender can prevent transgender people of colour from receiving the affirmative care they desperately need. The standards used to evaluate trans patients tend to favour those who are already the most financially privileged and educated, as well as those who fit into “textbook examples” of binary transgender identity, says Ansara. Those providing gender-affirmative care need to be more accepting of gender diversity and variation in gender norms across cultures.
Consequently, such adherence to gender binaries poses a distressing problem for non-binary individuals in the healthcare system, who often feel pressured to conform to binary narratives of transness in order to access gender-affirmative care and can be denied care for being perceived as not being ‘trans enough’. Because of this, some non-binary people may delay seeking gender-affirming care, even if they want it. Eighty-three percent of non-binary respondents to TransActual’s survey described being ‘very impacted’ by discrimination when accessing trans-specific health services.
This disproportion may be due to racialisation coming into the mix; according to TransActual’s survey, almost half of trans people of colour in the UK identify as non-binary, a significantly higher proportion than their white counterparts. Given that transgender healthcare in the UK is often informed by Western and binary understandings of gender, it’s unsurprising that those who exist outside of this boundary struggle to gain adequate care and understanding. It’s also not a shock that those who have the means to are beginning to seek care outside of the NHS.
The cost of care
Having waited years for her first appointment with an NHS Gender Identity Clinic, Eva decided to start using a private provider for gender-affirming treatment, with the hope she could switch back onto NHS care once she got off the waiting list. “I felt relief in being able to move forward and knowing that there is a system that can be there to support me,” she tells gal-dem. However, her healthcare came at a significant, literal, cost. “Areas of my life have to be put on hold,” Eva says. “For example, [I had to pause] saving for a house and moving onto the property ladder. Having to dip into savings when you are self-employed is also a massive risk”.
For transgender individuals seeking private care for gender-affirming surgery, even an initial assessment can cost up to £500. Those who wish to pursue surgical procedures face an extremely large bill; procedures like top or breast augmentation surgery start from around £6,000 to £7,000. At the higher end, transfeminine genital reconstruction surgery costs around £15,000 and a phalloplasty costs anywhere from £40,000 to £70,000. It’s no wonder that, anecdotally, there are increased reports of trans people heading to foreign destinations for more affordable procedures than are available in the UK, like Mai who was able to go to Thailand for surgery with the financial support of her family.
“But for many trans people, going private – for gender affirming care or otherwise – simply isn’t an option”
Many important gender-affirming procedures, such as facial feminisation surgery, tracheal shave and hair transplants are not available on the NHS, meaning people have to pay for them out of their own pocket. However, these procedures are vital for some transgender individuals; they can ease the mental pressure of gender dysphoria and help transgender people pass more safely in public spaces. “It’s not just how we sound, it’s how we present to the public when we’re out in society,” Eva tells gal-dem. “For the NHS to boil [our identities] down to gender confirmation surgery, laser hair removal, and hormones [and say] ‘that’s what defines a trans person’, I think is very irresponsible.”
But for many trans people, going private – for gender affirming care or otherwise – simply isn’t an option. Private health care can be prohibitively expensive. This disproportionately burdens transgender people of colour, who are more likely to be financially precarious or low-wage earners. Employment discrimination is also a persistent problem; these factors have seen a disproportionate amount of trans people, mostly women, entering risky spaces like sex work.
Given the high costs of seeking care privately, transgender individuals often turn to crowd-funding platforms, such as GoFundMe, which has seen a 26% increase in UK fundraisers for gender-affirming surgeries between 2019 and 2020. However, being at the mercy of benevolent individuals and opaque algorithms means that fundraisers are an unreliable resource, whose success depends on existing access to large digital platforms. For those with smaller reach, it can feel like the same few pounds are being exchanged between marginalised folk from the LGBTQI+ community, and fundraising patterns often reflect pre-existing social inequalities.
Additionally, some trans people have turned to the so-called “greymarket” for gender affirming care, like hormone treatments. Friends, social media spaces and intra-community networks have become medical supply sites, exacerbated by interruption of already-delayed healthcare during the pandemic. Whilst the greymarket can provide short term relief in easing gender dysphoria for some, taking medication from unofficial sources carries risks and supplies are unstable.
Culture war fallout
Meanwhile, a concerted war waged on trans rights in the media and in the courts, is having a dire effect on trans people’s ability to access healthcare. According to Jo Maugham, lawyer and founder of The Good Law Project, doctors are being discouraged from providing or specialising in transgender healthcare due to the politicisation of trans-related healthcare, at a time where supply of service providers is already failing to meet demand.
“Very few GPs are even comfortable [participating in ‘shared care’ schemes with specialist clinics or private clinics],” agrees Rico. “They’re not comfortable supplying you with the first injection [of hormones]. Unfortunately, I think that’s linked heavily to the legal climate, and some of the ongoing legal cases”.
Legal challenges from anti-trans campaigners are also attempting to roll back existing healthcare provisions; the recent Bell vs Tavistock case saw Keira Bell, who detransitioned at age 22, attempt to prevent reversible puberty blockers being prescribed to children under the age of 16. The judgement, which initially ruled in Bell’s favour, was overturned in September after an appeal, but had seen treatment suspended for over a year for any new referrals to the UK’s only gender identity service for children.
Jo Maugham, who brought the appeal in the Bell case, says he’s witnessed “a very rapid deterioration in the cultural climate around trans rights” in the UK. “Trans people are pawns on somebody else’s political chessboard,” he says. For Maugham, the recent attacks on transgender rights represent a wider threat to the rights of marginalised groups.
“Fundamental structural changes must also happen, like bringing non-surgical care for trans individuals into primary healthcare provided by GPs”
“How quickly respect for and understanding of trans people has been rolled back in the UK should be a powerful warning […] as to what will happen to other communities,” Maugham cautions, pointing to the recent near-total ban on abortions in Texas. His words have due cause; lawyers who lost the Bell appeal have announced their intention to challenge the Gillick competency test, which allows children under 16 to consent to their own treatment and access things like sexual healthcare without compulsory parental involvement.
“Healthcare should not be an ideological battlefield,” says Maugham.
Transgender activists and those who stand in solidarity are mounting a fightback for better healthcare provisions for transgender people, through the courts and on the ground. As a consequence of the distressingly long waiting lists, Eva has decided to take legal action, alongside three other trans plaintiffs, against the NHS, with the support from the Good Law Project.
From providing training for doctors to be more trans-inclusive, to rebuilding services that specifically have trans people, both white and of colour, involved in governance from the beginning, a wide-range of radical changes urgently need to take place to improve healthcare for transgender people. For many transgender individuals, gender-affirming care is life-saving care. In a 2012 survey by the Scottish Trans Alliance, 58% participants said their mental health deteriorated during their long wait for specialist care, whilst 74% of those who transitioned felt their mental health improved.
Fundamental structural changes must also happen, like bringing non-surgical care for trans individuals into primary healthcare provided by GPs, or run more akin to sexual health clinics, where people can access specific services without GP referral. A Soho clinic, for example, is running a pilot where eligible trans and non-binary patients waiting for their first GIC appointment can receive an official gender dysphoria diagnosis and access other gender-related services without a GP referral.
Access to decent and timely healthcare is a human right. “Every life should matter to a doctor,” says Mai, firmly. “No matter who you are.”
*Names have been changed to protect identities
Resources
56 Dean Street is based in central London and offers sexual health services for transgender and non-binary people.
CliniQ offers holistic sexual health, mental health and wellbeing services for transgender people and their partners.
Gendered Intelligence is a charity which offers training to improve inclusivity for trans people in the workplace and in schools. They also run youth groups for young transgender people, including TPOCalypse, a youth group for transgender people of colour between 13 and 25.
The Good Law Project is running a fundraiser to fund the costs of their legal cases advocating for transgender rights.
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