Trans men and women are being left humiliated and desperate after seeking care from their GP, according to a Guardian investigation that has shed light on serious flaws in how the NHS treats transgender patients.
Hundreds of transgender people responded to a request from the Guardian to describe their experience of navigating the NHS, with the most common complaints coming from patients who felt their GP did not understand gender dysphoria, were not adequately trained to deal with their needs, and erroneously referred patients to mental health services.
Serious systemic issues across the NHS were also revealed, including the confusion and delay in being seen at a gender identity clinic. When a GP sees a patient who could have gender dysphoria, they are referred to a GIC for diagnosis and to potentially begin the process of medical transitioning. While individuals should be seen within 18 weeks of referral, waiting lists for GICs can be ofmore than two years, with little or no support provided in the interval. The result is a limbo, with one person describing the prospect of surgery as so distant, and communication so lacking, that the situation was “soul-destroying”.
The Guardian has found that the impact of these delays is far reaching, creating tensions between doctors and patients that have led to an erosion of trust in the healthcare system among many trans people.
A key issue is that delays in being seen at a GIC often puts a medical transition on hold – which is something trans men and women said jeopardises their physical and mental health.
Currently GPs are given information on how to prescribe hormones and interpret the necessary blood tests by specialists at a GIC.
The General Medical Council says “bridging” hormone treatment can be prescribed by GPs before a patient attends a GIC, but only if the individual is suicidal or at risk of self-harming, and is already taking medication bought online or elsewhere. The GP must also take advice from a gender specialist and prescribe the lowest acceptable dose. However many GPs say they do not have the experience to prescribe hormones before a patient has been seen by a GIC, while getting the required advice from gender specialists to help with bridging hormones takes a long time as services are over capacity.
Josie King’s daughter, Rose, went to her doctor to talk about being transgender at 18 but was refused bridging treatment, despite King embarking on a letter-writing mission to try to change their minds.
“She was losing her hair – a receding hairline – and you can imagine for somebody in her position, that was absolutely devastating. So she needed the testosterone blockers really as quickly as possible to halt that,” said King, adding that Rose’s mental health was fluctuating – something King believes hormone treatment could have helped stabilise.
King said her daughter had to turn to sourcing hormones through an online service. However after a lengthy battle, their new GP surgery has agreed to take over prescribing the hormones and monitoring Rose’s blood tests.
Kamilla Kamaruddin, a GP who is herself a trans woman, said prescribing and monitoring such medications for trans patients is not simple.
“It is how GPs work, not just about transgender [issues] but other things. If they are not happy to initiate prescribing, then they refer on to the hospitals,” Kamaruddin said, adding that monitoring hormone levels in the blood can be tricky. “The GPs don’t know what to do if the results are abnormal or too high,” she said, adding GPs are not trained to provide the psychological support that patients also need.
Another GP with trans patients, who asked to remain anonymous, said: “If I prescribe as a GP and something goes wrong, that’s all on my shoulders and could be a career-ending decision for me,” he said. “I know it sounds drastic, and it’s admittedly unlikely, but it’s certainly possible to harm someone with hormone treatment if you’re not experienced with the condition you’re treating.”
But some GPs have felt confident prescribing hormones. One of these is Dr Helen Webberley, who set up a website called GenderGP, through which trans people could access doctors and receive hormone prescriptions. “What these patients need is very, very simple,” she told the Guardian, adding that while there are no UK guidelines for prescribing, the University of California San Francisco has produced a “beautiful” set that she used. However Webberley has become a controversial figure: she was convicted in 2018 of operating the company Online GP Services Ltd without the necessary registration, receiving a bill for fines and costs totalling more than £25,000, and she is under investigation by the General Medical Council. But Webberley remains adamant that she and her husband, also a doctor, are in the right. “They haven’t beaten me yet. They haven’t beaten us yet,” she said.
Beyond bridging hormones, current guidance from the General Medical Council makes it clear that once a patient has a recommendation for a hormone prescription from a GIC, doctors should take over. However even with this in place doctors can be anxious to issue hormones if there is no “shared care agreement” – a formal plan which clearly sets out the responsibilities of the GIC and the GP, allows specialists to get involved if challenges emerge, and reduces costs to GP surgeries.
Eric, 36, said setting up his hormone prescriptions with a new GP was invariably problematic. “It just seems to instil a sense of absolute blind panic in them and they insist that I am referred back to the gender identity clinic,” he said, adding that one doctor said she was not going to prescribe his hormones without him returning to a GIC – which would have meant joining the waiting lists again. “She basically held my medication hostage, hormones I have been on since I was 21-22,” he said, adding the doctor eventually relented when experts at the GIC confirmed he required hormones and that he did not need to be seen by them.
Without the hormone treatment, said Eric, the initial result is exhaustion and mood swings, which could also be followed by a return of menstruation and even potentially regrowth of breast tissue. “Psychologically it would be fairly catastrophic,” he said.
Following a lengthy consultation, the NHS recently released new specifications for gender identity services to be funded and delivered, which come into force this year. People will be able to self refer to GICs – or gender dysphoria clinics, as they will now be called. However the new specifications offer no solution to the issue of bridging hormones. “Bridging prescriptions are not commissioned by NHS England – the point of them is to cover the period before patient’s enter services commissioned by NHS England,” an NHS press officer said.
The documents do, however, refer to setting up “primary care multidisciplinary teams” – in other words, local trans health services – which might offer more timely access to local services, and tackle the problems of GPs being reluctant to prescribe hormones. The proposals are still in development, but the NHS is currently in the process of setting up a pilot in Greater Manchester. The NHS says if this is successful, it would mean the majority of trans people would not need to go to a gender dysphoria clinic – which would tackle complex cases – but could receive care locally, including a diagnosis, psychological support, voice therapy and hormone treatments.
Kamaruddin welcomed the proposals, saying such teams need to include specially trained GPs, nurses and psychologists under the guidance of GICs. But she said funding and training of GPs must be in place, as very few GPs currently have a specialism in trans healthcare.
Dr Jonathan Leach, honorary secretary of the Royal College of GPs, said a new e-learning course for GPs on gender variance is expected to be launched this year, although the details of its content remain hazy. But he reiterated that treatment should be initiated in specialist care.
“We understand that access to specialist gender reassignment services in the NHS is inadequate, and that this is incredibly frustrating for trans patients and their families,” he said. “But GPs should not have to bear the brunt of poor access to specialist services by being put in a position where they are being asked to prescribe treatment that they are not trained to prescribe or monitor safely without expert support,” Leach said.
Some names have been changed.
• In the UK, Samaritans can be contacted on 116 123 or email firstname.lastname@example.org. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.