A genderqueer person sitting in a hospital gown sitting in an exam room
A genderqueer person sitting in a hospital gown sitting in an exam room. Photo: The Gender Spectrum Collection
Life

Trans People Already Struggle to Get Healthcare. COVID Only Made Things Worse

Thousands of people were languishing on medical waiting lists when the lockdown hit. Now it's almost impossible to get an appointment.
June 18, 2020, 4:02pm

Before lockdown, Alex* was living in university halls and, like many LGBTQ young people, was starting to explore their own identity away from home. Now the 19-year-old is one of the number of young trans people who have been forced back in the closet while staying with family.

“Since basically all we've had since then is time for reflection, I know now that I'd like to meet with some sort of gender specialist," Alex says, "but I'm now living in a different place with a GP that I don't know and can't see face to face due to quarantine."

Two months ago, Alex also attempted suicide and was in the process of getting referred to mental health services. That's when everything shut down. “If we weren't in lockdown, I would probably be in the process of working out feelings I've been repressing for five years or so,” they explain, “but instead I'm stuck back with my family and unsure if there's any way to access the services I need.”

After years of cuts, coronavirus has placed unprecedented strain on the NHS – all non-urgent resources have been redirected to the frontline battle against the pandemic. One side effect of the redeployment of staff, energy, time and money is that parts of the health service that were struggling pre-COVID now appear broken beyond repair.

Trans healthcare is one of them. In the UK, access has been an increasing nightmare for a patient group already subject to widespread inequality in many areas of life – not least the bitter campaign against Gender Recognition Act reform.

The trans patients I spoke to know that COVID-19 victims and those with other emergency concerns must come first right now, but they are fatigued by years of their needs being systematically devalued and de-prioritised. Things are even worse now – the level of support currently offered is best described as a postcode lottery. Some Gender Identity Clinics (GICs) are offering Zoom appointments. Others have all but shut down. GICs typically serve an entire region. When one, like the Leeds and York Gender Identity Service, has cancelled all diagnostic appointments and ceased offering new ones, many trans people in the north of England are effectively barred from access to care.

“I feel huge frustration and anger. I am ok when throwing myself into my job but when I have time to think I get very down. I just want out of the whole Gender Identity Clinic process,” Louise, 45, tells me. Louise has had her counselling appointments prior to surgery cancelled. “The process will now take [the] usual two years – plus the lockdown time – to be referred for surgery, after years in the system.”

She says that the hardest part is that people outside the trans community struggle to understand the importance of surgery and the impact of waiting on her life. “Unfortunately I tend to get upset when people say, ‘it will be ok.’ I feel they don't understand.”

Surgical deferrals are, in some cases, having a huge impact on quality of life. Jake*, 36, is a trans man waiting for stage two of phalloplasty – a series of genital reconstruction surgeries some trans men undergo to construct a penis. Due to years of lack of investment in training for this highly specialist surgery, there is only one team in the UK qualified to do it. Now the team has been shut down by coronavirus.

“I’ve had the first stage operation in that stage they don't get rid of anything,” Jake explains. “I've got my penis, but I've also got everything else from my original anatomy. I feel, to put it in a politically incorrect way, that I’m left in an in-between state.” He feels dispirited about the current timeline: “I'm not getting younger, either. I'm 36, so realistically I could be 39 by the time I've finished my surgical transition.”

Over 5,000 young people are on the waiting list for the Gender Identity Development Service (GIDS). Photo: The Gender Spectrum Collection

In the past few years, the deepening crisis in healthcare has been lost in the protracted and highly organised campaign waged by the right-wing press against updating the GRA – simple reforms that Boris Johnson is reportedly thinking of scrapping. The reality is that many trans campaigners I speak with consider healthcare access a bigger priority than GRA reform, but felt obliged to defend themselves against the media assault. Where healthcare has made headlines, it has usually been in respect of care for under-18s. In April, Women and Equalities Secretary Liz Truss made comments described as “worrying” by LGBTQ groups about the need to prevent trans adolescents under the age of 18 from making “irreversible decisions”.

It led to speculation she may support calls to restrict access to puberty blockers and cross-sex hormones for trans young people. Ironically, they come at a time when increasing numbers of trans children actually lack the support they need. Over 5,000 young people are currently on the waiting list for the Gender Identity Development Service (GIDS), the UK specialist service that exercises an effective monopoly on access to care for teenagers.

The waiting list for a first appointment is now two years (with several appointments needed to access puberty blockers) and, according to a BBC investigation, only 267 people under the age of 15 started using blockers between 2012 and 2018. Despite the reactionary narrative that trans children are treated with hormone therapy too freely and too quickly, they are in fact not treated adequately at all. Nor is British treatment in line with international best practice, which advises that affirming a child’s gender identity and allowing them to socially transition in childhood should be the starting point.

Coronavirus is now making things worse: “The UCLH endocrine clinic which initiates and oversees hormone treatment for under-18s is suspended, meaning no new assessments or changed prescriptions for blockers or hormones,” one parent tells me. GIDS, which works in conjunction with the UCLH clinic, told VICE that it was currently unable to begin hormone therapy given the current stress on the health system and the need to closely monitor the introduction of any treatment. Its current focus is “the safety of those young people already on treatment”, which it monitors through telephone and video appointments.

“We acknowledge how difficult it is for young people and families at GIDS during the COVID-19 outbreak,” it said in a statement. “We appreciate how frustrating it is for the young people who are waiting for physical interventions, and are grateful for how understanding they have been in our appointments.”

Even when care resumes, the long queues for GIDS will presumably only increase exponentially due to the growing backlog. The same is true in adult healthcare. While NHS England targets specify patients should be seen by non-urgent specialist services within 18 weeks, the average waiting time prior to the pandemic was on average closer to 18 months. In some cases, people waited for three years.

The 40 percent increase in referrals over the past four years now leaves nearly 14,000 adults languishing on waiting lists for specialist gender identity services that have no hope of controlling the bottleneck that prevents trans people from accessing proper care. (NHS England did not respond to repeated requests for comment on this piece.)

“I was told by my GP that there is ‘no point’ in me even being added to my nearest GIC’s waitlist right now and that I shouldn’t be asking to at this time”, Sam, 25, tells me. “It’s disheartening.”

The prognosis for trans healthcare both during the present crisis and beyond seems bleak. Yet there is some hope. For years, activists and campaigners have called for the abolition of GICs altogether, viewing them as an archaic model that hails from a time where paternalist clinicians wielded disproportionate and oppressive power over trans people’s destinies.

For some, this unhealthy dynamic persists, albeit in faded forms, in the modern centralised clinics with their endless assessments and absence of trans staff and governance. “The big problem in the UK is this idea that trans health care is special and unique and you need to have special expertise to work in that area,” says Dr Ruth Pearce, a sociologist in the field of trans health. “It means that it ends up only being delivered in a specialist service when you get bottlenecks for treatment.”

She says this actually reinforces a lack of confidence among GPs and other non-specialist health workers, perversely encouraging them to pathologise trans people: “It means that trans people become this kind of strange and difficult thing and GPs imagine we’re difficult to deal with. Other practitioners don't feel that they have the necessary skills and knowledge to support trans people.”

Pearce and others in the field recommend an outright scrapping of the present system, which they believe is beyond saving. Instead, it should be replaced with primary-care led models that may include local GPs taking a more active role as well as specialist trans health centres – operating a little bit like specialist sexual health clinics – that are run by and for trans people and which look at trans health holistically beyond medical transition to mental health, sexual health and fertility. It’s a model seen in the US, Canada, Australia and New Zealand.

Pilots for a new system along these lines were planned in London and Manchester prior to the pandemic, and last year NHS Wales launched a new gender service that ultimately intends to place more emphasis on primary care than the English system. This pandemic has been a blow to a crumbling infrastructure supporting British trans health, but activists and campaigners hope it has forced a much-needed reckoning. One day, something better may rise from the debris.

* Name has been changed

This article originally appeared on VICE UK.