How the Healthcare System Screws Over Non-Binary People
Increasing numbers of non-binary people are seeking treatment for gender dysphoria in the UK. But they say that the National Health Service is dramatically failing to adequately or efficiently support their needs.
Illustration by Eleanor Doughty
The fight for transgender equality may have finally entered the mainstream, but much of the general public remains ignorant about the issues the trans community faces. It's particularly tough for non-binary and genderqueer people (those who don't subscribe to conventional gender distinctions but identify with neither, both, or a combination), many of whom have found even the experts are letting them down.
Anyone seeking to transition in the UK can do so at one of the NHS' Gender Identity Clinics (GICs). After a short assessment, patients could be referred to a range of services, from hormone therapy to surgery, hair removal treatments to speech therapy.
But while services for those seeking a binary transition have improved in the 50 years the NHS has been offering them, many non-binary people have found the GICs to lack adequate knowledge about their requirements. Some have faced disbelief and a refusal to accept their gender identity; others have been exposed to severe delays in their referrals. In some instances patients have even been forced to undergo treatments they're not comfortable with, or even been refused treatments altogether.
"Most of the non-binary people who have been seeking transition have had to...lie to the GIC to get the treatment they need," says CJ, whose first appointment was at the West London Gender Identity Clinic. "I don't personally know any non-binary people who are out to the GIC as non-binary who have been able to undergo treatment successfully."
CJ knew they weren't seeking what they describe as a "normal transition route" when they went to the clinic, seeking top surgery without hormone replacement therapy. Despite World Professional Association for Transgender Health guidelines to the contrary, transgender people are normally required to undertake a year of hormone therapy for a year, before they can have surgery. Despite having been told by other non-binary people about the complications and delays that arise from stating a non-binary identity, CJ decided to be honest.
"I needed top surgery before I knew whether or not hormones were right for me," says CJ. "That was too much for the clinic. They are very clear they want you to go down a certain route. I was told by my doctor that I'd have to go to counseling until I decided to take hormones first, because I couldn't know what I wanted otherwise. But that's nonsense because I'd been binding my chest (painfully and dangerously) for a few years, and at the time my chest was my only source of discomfort.
"I'd always thought seen myself as pretty masculine already so never thought of needing or wanting the changes hormones would bring. There are loads of permanent aspects to hormones that I really didn't want or feel ready for." After waiting over three years for a decision, CJ took out a loan and went to a private clinic. It took just one appointment for the consultant to agree that surgery was the right course of action.
I found it like I had to jump through hoops and I had to behave myself and I had to wait for somebody to tell me that I was trans.
"For patient confidentiality reasons, we cannot comment on individual cases. Non-binary issues on the whole though are a challenge for gender clinics around the world," the West London Gender Identity Clinic told Broadly. "For binary (straightforwardly male-to-female or female-to-male) transitions, there's an established base of research evidence, so we generally know how to achieve the best outcomes, and the lowest possible rates of regret. Non-binary however can be a lot more complex, and there isn't the same reassuring bedrock of research evidence.
"We understand that people want to proceed quickly with their treatment, but as clinicians, we have to balance this with the risk of them regretting the treatment afterwards."
According to figures obtained by UK Trans Info, the waiting period for an initial consultation at a GIC is between 12 to 18 months (NHS England guidelines state it should be no more than 18 weeks). Even after the initial consultation though, non-binary people are facing severe delays as consultants deliberate on how to proceed, if at all. This is despite the fact that many patients already know exactly what treatments they need.
"The clinics [have] never been good to me," says Fox Fisher, who waited over a year and a half for an initial appointment. "Non-binary people I know have found it very, very hard to access services. I found it like I had to jump through hoops and I had to behave myself and I had to wait for somebody to tell me that I was trans. I didn't feel like I was being listened to or that things weren't happening fast enough. I was worried that I wouldn't be able to cope."
Fisher waited so long for treatment that 18 months after the initial appointment they took out a credit card and ordered testosterone from the internet. "I was taking hormones from the internet because I was so impatient, but that was really messing me up," says Fisher. "It was really affecting me when I was shooting it up."
"It was a story of when hormones go wrong," they continue. "I'd never injected anything before and I was just desperate to start my journey and no one was able to help me, it seems. As a result of going on and off different forms of testosterone, my body was out of balance and I felt all over the place emotionally. I didn't feel very safe and very secure, so the NHS never really provided that for me. All I ever wanted was to be under the wing of the NHS or some healthcare professional."
Fisher decided to go private, but even then they kept their non-binary identity a secret to ensure no more delays in the process.
Three years ago, Dorian* was referred to the same GIC as Fox. While he was already on testosterone (secured through a private practitioner to avoid the well-documented waiting times), he went to the clinic seeking chest surgery. Because Dorian had already heard about the problems other non-binary people had faced at the clinic, he decided to present as a trans man, rather than non-binary. Even when he told the doctor he wasn't "straightforwardly male, but happy living as male" he was heavily scrutinized for not conforming to a hackneyed view of masculinity.
"When I saw [the doctor] at my second or third appointment he was appalling," says Dorian. "He told me off for wearing makeup and having a feminine name. I didn't say I was non-binary, I said I wore make up because I'm a goth and most goth men wear makeup. He said, 'Yes, but those men probably weren't assigned female,' saying pretty explicitly that he thinks as a trans man I should be held to a more stereotypical standard of masculinity.
"I protested a little at the comments about men not being allowed to wear make-up... He said he thought trans men should be held to a higher standard of masculinity. So, I would never admit non-binary elements of my identity to him, I just smiled politely in the hope he'd give me his approval for treatment anyway."
They would give me anti-depressants and they would give me anti-anxiety [medication] but they wouldn't give me the thing that I knew worked.
Jack* first came out as genderqueer in 2010, but it wasn't until they went to the US a year later that they first sought the services of a GIC. Though they weren't sure if they wanted to transition fully, Jack's situation was impacting their mental health. They thought that if they could at least try testosterone, albeit on a much lower dose than would normally be given to trans men, it might alleviate some of the difficulties they were having. It took just three months from their first appointment in the US to get testosterone.
"I started on a really low dose, kind of with the intention of actually going to a normal trans man's dose, but it worked for me so I stayed on that," says Jack. They returned to the UK in 2014 and immediately sort a prescription to maintain their dosage. While their GP refused to prescribe testosterone, they did refer Jack to the Nottingham Center for Gender Dysphoria. Nine months later, Jack had their first appointment.
"Even though I said to them that being on testosterone for two years has been really good for my mental health, they said, 'Oh we wouldn't really advise testosterone at the moment,'" says Jack. "In the first appointment at least, I felt like they were trying to break me down a bit, questioning everything I said I was."
Such was the strength of the clinic's assessment it caused Jack question their own identity. "I actually went back to a therapist to talk it through," they say. "I just felt they disturbed the balance I had. They're just really slippery and I think that's one of the major problems. There's not a clear pathway. You can't tick boxes or jump through hoops because you don't know what those hoops are."
Jack had procured a large supply of testosterone from the US and was able to maintain their low dosage while they waited for a decision. Their consultant proposed that Jack stop taking it though, to see whether it was necessary. "It was a complete disaster," says Jack. "I just got back into anxiety and no energy and stuff like that. My doctor and gender clinic were like, 'It doesn't matter, we're not going to prescribe.' They would give me anti-depressants and they would give me anti-anxiety [medication] but they wouldn't give me the thing that I knew worked."
"We are unable to comment specifically on this case due to patient confidentiality and would encourage the patient to contact the clinic directly or our Patient Advice and Liaison Service by email or phone," the Notting Center for Gender Dysphoria told Broadly. "Each patient is assessed individually by our center, and completes a three stage assessment. National and international guidelines advise against prescribing hormones during this early stage in the assessment without having considered the presenting client, which is something that can't be done in a short time."
Naomhán O'Connor also encountered resistance from doctors when they became the first non-binary person to go through the Brackenburn Clinic in Belfast. Though they're aware of others who hid their non-binary status from the clinic to avoid delaying the process, O'Connor decided to be open.
"I got my testosterone referral after basically threatening to go illegally," says O'Connor, who, after waiting for 18 months, told the clinic about their intention to fly abroad where treatment was much easier to access. "I said, 'I'm literally at the end of my tether, when are you going to give this to me, why am I continually fighting for it'?'"
As part of a rigorous psychiatric evaluation, O'Connor also had to secure a second opinion from a psychiatrist. "Because I'd been presenting as non-binary I had to explain to him what non-binary meant to me, how I felt about it and things like that," says O'Connor. "Most people have a pretty weird experience with this guy anyway. He asks people questions like how often do you masturbate? He asked me if I could wave a magic wand and change everything about me what would that be? Then he said to me you know when you have top surgery you can't put them back. I was like, 'No shit, Sherlock'.
"The most frustrating thing about the clinic is that trans people know a fuck load more about all of this than any medical person does, because we're doing research before we go to the gender identity clinic, we're researching everything while we're there. To have this guy sit there and say, 'You can't get them back', well, yes, obviously. I made a complaint against him in the end."
O'Connor is now set to undergo top surgery in July. Their experiences are also being used to re-define the pathway that non-binary people take in the Belfast clinic. As a result, non-binary people are no longer expected to have real experience living in another gender, or to have legally changed their name or gender.
In a statement, the Belfast Health and Social Care Trust told Broadly: "Belfast Health and Social Care Trust are unable to comment on the care and treatment of individual patients. We are always sorry to hear of any negative care experiences and would invite patients effected by such incidents to approach the Trust so we can investigate properly and resolve appropriately."
A recent House of Commons Women and Equalities report into Transgender Equality report recommended the system undergo a complete overhaul. According to the report demand for GICs is growing by 25 percent to 30 percent each year. With an increasing number of non-binary people now trying to access gender clinics, more research is required to ensure their requirements are recognized in any such overhaul.
"Around the world we're seeing more and more non-binary people coming through with that kind of presentation," says Stuart Lorimer, a consultant psychiatrist and gender specialist. "So we sort of find ourselves in this situation where there's this demand and I think as clinicians we have a sense of cases in whom it's going to be fine and those in whom it's not. But we don't have the reassurance of a firm evidence base.
"I suppose what I'm looking at is trying to ensure people don't regret any treatment they have, and it's the best kind of treatment for them in terms of what they're going to benefit from. But also ensuring that the surgeons don't do something irreversible to someone that they then regret. It's all very case by case."
* Name has been changed