- Warning: this article contains mentions of suicidal ideation
Years-long NHS wait lists are driving trans people into the unregulated online “grey market” in their search for gender-affirming hormones – despite the potential health risks.
Unlike patients who go private, these DIYers administer medication themselves (or with another person’s help, but not necessarily a medical professional), do not necessarily receive any monitoring, and have little guarantee of the purity of the medication.
The General Medical Council, which regulates UK medical professionals, told openDemocracy: “Many trans patients are facing long waits for specialist advice and treatment, increasing the risk they may turn to unregulated and potentially dangerous sources.”
These unregulated sources include providers from countries where hormones are easier to access, such as Portugal and Ukraine. Some trans people then redistribute these hormones to others as necessary.
Proposed changes to youth gender identity services would deny monitoring to young trans people who access private trans healthcare or self-medicate using unregulated sources. GPs are also encouraged to “initiate local safeguarding protocols” – to report parents and carers to their local councils – if their children use unregulated sources.
But faced with waiting lists that are nearly six years, in addition to the sometimes extortionate price of private gender-affirming healthcare and the lack of dignity for those who do bear the waiting time, many trans people feel that there is hardly a choice.
Louise Wade told openDemocracy she was originally told to wait 26 months for an initial consultation with a clinical psychologist. “That’s over two years where if GPs aren’t providing support,” she said, “and you can’t really afford to go private, the only option is either nothing or self-medicating, which in itself does come with some element of risk.”
The “usual” route for accessing hormones is to go to a gender identity clinic (GIC), which would then recommend a prescription to the patient’s GP. In Wade’s case, her GP contacted the Welsh Gender Service and requested this appointment be fast-tracked because Wade was unlikely to stop self-medicating until she got equivalent treatment from the NHS. The NHS rarely prescribes hormones until at least a person’s second GIC appointment, meaning without this intervention Wade could have been left self-medicating for almost three years.
Kate Marzęda, a doctor in Poland who specialises in endocrinology (the branch of medicine that deals with hormones) for children and adolescents, and works with many patients who are self-medicating, told openDemocracy accessing hormones could save a trans person’s life. “I never encourage my [patients] to DIY,” she said, “but it’s a matter of life and death.
“I always think I need to find the best solution in the worst situation. I would love to be in an ideal world in which I can take every single patient and give them the prescription and the best possible treatment I can… but life is not like that.”
For Ray Lavery, who was on the waiting list for three and a half years before deciding to go private, “the NHS was no use whatsoever”. Similarly, Caleb, a 19-year-old medical student, went private because “the NHS service was just not fit for purpose to deal with the demand that was required of it”. He was referred to the adult NHS services at 17 and has been waiting two and a half years to be seen for a first appointment.
“I’m hoping that that appointment will be at some point,” he said. “But I’ve not had any contact whatsoever.”
One alternative to the NHS route to hormones is to go private, which is only an option for people who can fork out hundreds of pounds just for a consultation. Patients who use private providers of gender-affirming healthcare receive a similar service to NHS ones. They go through a GIC, and have appointments, treatment and monitoring of their health during the course of the treatment.
Oliver Smith*, from Cornwall, did just that after tiring of waiting on the NHS. He told openDemocracy: “There is kind of this perception among a lot of transgender people, particularly younger transgender people – I definitely felt this when I was younger – that the NHS was not going to help me and that the waiting lists were just completely beyond anything I’ve ever seen.”
Those who self-medicate, however, simply pay for the hormones and have no guarantee of health monitoring, although the Royal College of Psychiatrists’ good practice guidelines recommend that GPs provide this. openDemocracy has been told that injectable oestrogen from a non-pharmaceutical source costs about £60 a vial and typically lasts nine months, while one vial of testosterone is about £30 and lasts four to five months.
Even when people are eventually seen at GICs, they say the questions they are asked can be invasive, undignified and mistrustful.
Eli Jaeger from Trans Safety Network, a research collective that documents anti-trans campaigns, said a clinician suggested to one patient that she might be an effeminate gay man rather than a trans woman. Some patients have been asked questions around their sex life that they say are not relevant to the treatment.
What’s more, Jaeger said, both NHS and private providers “will deny people treatment if they say that their family isn’t supportive or they haven’t been out to their family”. He added: “There are some private providers who demand that you give them phone numbers of your parents or your partner or your friends so they can call and try and confirm with them that what you said in the appointment is true.” This is not common practice for other treatments for adults that are not trans-specific.
Many trans people are not supported by their parents. According to akt, a charity supporting homeless LGBTQ+ youth, 24% of homeless youth are LGBTQ+ and 77% believe this was mainly due to coming out to their parents. Trans people are also at increased risk of being in abusive relationships, which raises the threshold for receiving treatment too high for a significant section of the community.
Some patients have even been denied treatment on the basis that they are autistic. Wade said her doctor did not want to provide a bridging prescription – a temporary hormone prescription while a patient is waiting for specialist treatment from a GIC – “because [they said] the feelings I had could be related to my autism, and [so] in their opinion I could be just trying to fit in”.
Wade is among many trans people who have been left feeling that the questioning or criteria for approving treatment is arbitrary: “It just seemed like she was just trying to get rid of me there and not really do anything. And just try and dissuade me from transitioning.”
Smoking is another reason used to deny treatment. Jaeger said: “The NHS are very anal about trying to make sure people don’t smoke, and then threaten to not prescribe or to reduce dosage for people who smoke.” Trans people on the whole smoke at a higher rate than non-LGBTQ+ people, which Jaeger believes is likely in part due to stress.
In a survey carried out by grassroots trans activist group Action For Trans Health (A4TH) in 2018, 14.3% of trans people had been denied treatment, or had it delayed, because clinicians had concerns about their mental health. Yet difficulties accessing gender-affirming treatment can exacerbate mental health problems, leading to a vicious cycle.
According to A4TH’s 2018 survey, 63.5% of nearly 800 trans people reported that waiting for a GIC appointment had contributed to suicidal ideation. A Stonewall report in 2018 found that 67% of trans people and 70% of non-binary people had experienced depression in the previous year, while 71% of trans people and 79% of non-binary people had experienced anxiety.
For those experiencing gender dysphoria, accessing hormones can mean – in Marzęda’s words – “saving their lives”. In the same survey, A4TH found just over 84% of people who previously experienced suicidal ideation reported that it had decreased after starting HRT.
Lavery, who runs a meet-up for trans people in London, told openDemocracy: “There is no comparison from the person I was then [before medically and physically transitioning] and the person I am now. I am a very happy man now, [after being] incredibly miserable.”
Smith said: “I really cannot understate how much better my quality of life is now that I’m on hormones – how gender affirming care saves people’s lives.” Wade also emphasised how much of a positive impact it had on her mental health.
*Names have been changed
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