Trans people are finding it harder to access life-saving treatment

The text message Emily* received from her GP practice was life-changing. Emily, who is transgender, was first prescribed hormone replacement therapy (HRT) two years ago. It had enabled her life to feel “ordinary”. Suddenly her prescription had been stopped.

The message explained that the GP practice was unable to “safely support ongoing prescribing or monitoring” of the “specialist drug”. If Emily wanted a new prescription, she would have to go private – a cost she could not afford.

In recent months the Bureau of Investigative Journalism’s (TBIJ) Trans+ Voices team discovered that some trans+ people, like Emily, have had HRT refused or withdrawn. This had happened even when the prescription had been recommended by a specialist – and in some cases after having received the treatment for years.

Similar experiences shared on online forums suggested these were not isolated incidents. So TBIJ set about trying to determine the scale of the issue.

But no official data exists to clearly indicate the number of trans+ people who have had ongoing prescriptions withdrawn, neither across the NHS as a whole nor at most individual gender clinics. Prescription refusals, which occur when a person tries to start the treatment, are sometimes documented but not at a national level.

TBIJ sought to collect its own data and Emily was among more than 60 trans+ people who replied to our survey on the subject.

While the survey cannot be considered representative of the trans+ community as a whole, responses included others who say they have experienced withdrawals of care. Emily, who is 25, was not the only respondent who had been taking HRT for years when their prescription was stopped by a GP.

Staff at multiple NHS gender services also said that the issue of care withdrawal has become more frequent in the past year.

Gender-affirming healthcare

While HRT is best known for its use in treating symptoms of the menopause, it is also a form of gender-affirming healthcare for trans+ people, as it can help them feel more aligned with their gender. It’s a lifelong treatment. Studies have found it to be safe and that its many benefits to the health and wellbeing of transgender people usually outweigh the risks. As another person who replied to our survey put it, “this prescription is life-saving for me.”

The reasons given for why such treatment is withdrawn or refused vary. Some people have been told their GP doesn’t feel qualified to provide the care, whereas other GPs have declined the work on the grounds they don’t have the resources to provide it. Some GPs are refusing to prescribe HRT due to a contractual dispute.

The HRT which would later be prescribed by her GP made life feel more livable. Her doctor had been prescribing and monitoring it – until this summer, when this suddenly changed without consultation.

No one spoke to her face-to-face about the decision. Instead she was informed by text message. “I’m in limbo,” she said. “My mental health has been in such a precarious position because of the struggle to get healthcare.”

Emily doesn’t believe all staff at her practice were on board with the decision. “I feel sympathy for the members of staff who are having to go along with [withdrawing prescriptions] … it’s obviously a systemic problem.”

Elijah, 33, also used a private service to avoid waiting for an NHS clinic. He waited six months for an appointment and paid a fee before receiving a gender dysphoria diagnosis.

The testosterone he was prescribed after this diagnosis had made him feel confident, grounded and happier. His GP had been so supportive that he hadn’t imagined losing access to it. But, after moving house and registering with a different practice, his new doctor decided to discontinue the prescription he had been receiving for two years.

“I found it so paralysing that she had made that decision for me,” said Elijah. “I had no say, despite having proof that everything had been fine for the last two years.

“You’re trying to do your life, trying to work … it’s totally destabilising.”

The inaccessibility of gender-affirming care has driven some people to resort to drugs bought online from unregulated sources or shared within their community.

“There’s a reason why so many people don’t go through the system,” said Elijah. “Some of that is to do with wait times and more of that is to do with bad experiences and having to have awful conversations with medical practitioners.”

Wider rollback

Kamilla Kamaruddin, who has been a GP for two decades, sits on the board of Spectra, a sexual health and wellbeing organisation, and is currently a lead clinician at the East of England Gender Service. In her experience, the issue of care being refused or withdrawn from trans+ people has become more frequent.

“GPs who refuse to prescribe are still in the minority but we’re seeing more and more GPs who are refusing to prescribe on the basis that they don’t have the expertise … even though they have already done the prescribing for a very long time,” she said.

“If a GP didn’t know how to treat a heart condition they’d ask a cardiologist – they’d get advice and guidance … for some GPs this doesn’t seem to apply to treating trans people.” The General Medical Council, the regulator of doctors in the UK, has previously stated to GPs that the provision of HRT prescriptions to transgender adults is not a highly specialist area and does not require specific expertise.

Staff at other NHS gender services also told TBIJ the issue of HRT withdrawal, though it has affected a minority of their patients, has become more frequent in the past year.

In response to TBIJ, NHS England said it had more than doubled investment in gender dysphoria services and increased the number of clinics from seven to 12 since July 2020. A review of gender services for adults “will look at how to overcome the challenges that some individuals face in accessing a timely prescription”, it added.

The Department of Health and Social Care said it was waiting for the outcome of that review, adding: “We know that adults questioning their gender identity have struggled to get the support they need.”

Though anecdotal evidence suggests an increase in HRT withdrawals, evidencing the scale of that increase is very difficult. The NHS does not always record each time a GP withdraws a person’s medication or refuses a recommendation.

The information kept by gender clinics is similarly inconsistent. In response to freedom of information requests submitted by TBIJ, some NHS gender clinics confirmed they do not routinely record when a GP decides not to prescribe HRT to trans+ patients. Others said they would make a note in a patient’s file but the information is not recorded systematically.

Manchester’s Indigo Gender Service, on the other hand, has been recording data on the prescriptions it recommends for patients. Between 2022-23, 8% of its HRT requests were refused by GPs. The following year this rose to 11%, meaning more than one in 10 of their service users were unable to access HRT via their GP, despite being recommended the treatment by an NHS specialist service.

Tavistock and Portman, the UK’s largest gender identity clinic, said refusals to prescribe HRT were a “frequent occurrence” but it was not able to provide the relevant data due to the format it was held in. The Gender Identity Service in Leeds said it had experienced an increased number of GP practices that were unable to begin or continue prescribing HRT. It also could not provide specific figures.

The picture is complicated by the fact that some trans+ people opt for private services. Different NHS practices will have their own policy on whether they collaborate with private healthcare providers. Gender Plus, a private provider, told TBIJ that 35% of the adults it had recommended HRT prescriptions for received these privately, not from their NHS GP.

Not enough funding

One reason cited – both to patients and to services – by GPs who have declined to provide care for their trans+ patients, is a lack of funding.

It was reported by the Health Service Journal in November that prescriptions, including for mental health conditions and eating disorders, were being cancelled by GP practices, potentially as a form of “collective action” in response to a lack of funding. The article cited a letter written by GPs in Dorset in which they said they would be declining “shared care” requests including those relating to gender dysphoria.

A spokesperson for the British Medical Association, told TBIJ that the “collective action” is about GPs “stopping work that is not properly paid for or resourced”, adding that it recommends alternative arrangements are put in place by NHS Commissioners so patients are not “adversely impacted by these actions”.

“Overstretched practices continue to do a considerable amount of work that is not commissioned by the NHS but should be,” they said.

“Many GPs are not trained to provide the specialist care these patients need and therefore fear risking patient safety. Because of this, some are refusing to take on new shared care agreements until there is a proper agreement that protects both patients and practice staff.”

Before 2022, the responsibility for starting and monitoring a HRT prescription rested solely with GPs. Then two years ago, some NHS gender clinics became able to prescribe directly to their patients for a limited period before transferring to GPs. But they aren’t designed to prescribe and monitor HRT for their patients on a long term basis.