An overhaul of medical care for transgender minors is exacerbating bottlenecks in England, Reuters found, leaving thousands of patients in limbo and adding to years-long treatment delays. The crisis comes amid a broader debate on appropriate care for rising numbers of teens seeking help in Europe and the United States.
By JENNIFER RIGBY, ROBIN RESPAUT and CHAD TERHUNE Filed Dec. 15, 2022, 11 a.m. GMT
On an October morning in the living room of a modest family home in this coastal town, Miles Pitcher, 17, received a message that would change his life.
It came from GenderGP, a private online health service that treats people suffering from gender dysphoria – the distress of identifying as a gender different from the one assigned at birth. The doctors had reviewed his case, the message said, and would prescribe the testosterone that would help Miles develop the facial hair, deeper voice, broader physique and other characteristics aligned with his gender identity. It would put an end to the menstrual periods he dreaded.
Miles gestured at his phone, speechless. He shook his head, and, beaming, showed the message to his mother as their pet dog Moose bounded around the room.
“Finally,” he said. “Something being done.”
Miles, assigned female at birth, has identified as male since he was 14. Yet until he got that message, he was stuck in limbo for three years, one of at least 8,000 young people in England and Wales waiting to receive gender care from the state-funded National Health Service (NHS) as of October, a Reuters review of NHS documents shows.
SPORT AND STUDY: Miles is a member of a girls’ rugby team. He is a keen player and plans to study archaeology at university. REUTERS/Paul Childs
The UK government has promised to overhaul the youth gender care system, after it was deemed inadequate by England’s regulator of health and social care. Some clinicians had complained that England’s only state-run youth gender clinic was too quick to offer medical treatments to young people. And many families protested over the distressingly long wait for a first appointment – an average of nearly three years, a Reuters analysis of the clinic’s records found.
In July, the NHS said it would close the sole clinic, known as the Tavistock, next year and replace it by spring 2023 with regional centers to better accommodate a fast-growing patient population. Its plan calls for the centers to operate under new treatment guidelines, informed by the best available medical evidence for treating transgender adolescents and the most in-depth review of care conducted by any country.
But the reality is already falling short of those ambitions, creating new delays and uncertainties, according to Reuters interviews with transgender teens and their families as well as physicians and government officials involved. They described a deeply flawed system that is now hobbled by a toxic political climate around gender care.
Young people like Miles say their only option is to turn to private providers such as GenderGP, which is registered in Singapore and thus operates beyond the supervision of the NHS. The company says under-18-year-olds make up a growing portion of its UK patient population, with about 800 youth currently on its books.
GENDERGP: Dr Helen Webberley, whose company prescribed Miles’s drugs. Handout via REUTERS
“I wish we didn’t have to exist,” said Dr Helen Webberley, who founded GenderGP with her husband. Both once worked for the NHS. “But we are years away from the NHS pulling themselves together on this.”
The NHS’s proposed new treatment guidelines were altered after they were reviewed earlier this year by a Conservative government wary of medical interventions for transgender adolescents, Reuters found. Gender clinicians say the proposals now depart from international treatment protocols, which support gender-affirming care. Pioneered more than 20 years ago in the Netherlands, such care can include everything from supporting a social transition – using a person’s preferred pronouns and name – to counseling and medical interventions, including drugs that pause puberty.
The Tavistock, based in London, continues to see existing patients. But first appointments for people who have been on its waiting list since 2019 have slowed to a trickle as staffing and morale drop ahead of the closure, according to NHS data and four people involved in the reorganization. More than 1,500 young people recently referred with gender dysphoria are being kept on a separate list for the future regional centers, with no clarity on when or how they will be treated, three NHS sources told Reuters.
Once assigned to a waiting list, young people have been effectively locked out of state-provided mental health counseling and other specialist support related to their gender dysphoria, because those services were offered only through the gender care system they are waiting to join. Delaying medical treatment also means young people mature in bodies that don’t align with their gender identity – changing that in later life is more difficult.
PROTEST: The parent of a transgender child demonstrates in London. The average wait for gender care on the NHS is nearly three years. REUTERS/Natalie Thomas
The NHS said in a statement to Reuters it is expanding healthcare services for young people with gender dysphoria in line with recommendations from the review, and working on better supporting those on the waiting list. It has previously said it “strongly discouraged” families from turning to private or unregulated providers.
“These have been an exceptionally challenging couple of years for our patients and their families, with a lot of toxicity in discussions around their care and chronic uncertainty about its future,” Dr Polly Carmichael, director of the youth gender clinic at the Tavistock, said in a statement to Reuters.
The Department of Health and the Prime Minister’s office declined to comment for this story.
Both sides in the polarized debate are turning to the courts: patients who say they’ve waited too long, and others who say the NHS moved too fast. At the end of November, transgender rights advocates challenged NHS England in the High Court over long wait times for both youths and adults seeking treatment. In 2020, a young woman who had detransitioned from being a transgender man challenged the Tavistock’s use of puberty blockers in the same court.
Long wait lists are common within the NHS, but its statistics show the three-year wait for transgender youth is extreme. Most young people with a “non-urgent” eating disorder get specialist help within three months of being referred, the figures show. On average, young people seeking mental health support wait just over a month for a first appointment, according to a government analysis of NHS England data.
One mother shared with Reuters a letter she received from the NHS in February after she followed up on her daughter’s October 2021 referral to determine when she might receive attention. The letter said a decision would be made at some point from early 2022 on whether the child “is likely to meet the access criteria” for gender care. She has heard nothing since and suspects her child isn’t even being considered for NHS help.
“We are on a waiting list for a waiting list,” said the mother, Rose, who asked to be identified by her first name only to protect her daughter’s privacy. “She basically feels suicidal every single day.” The NHS declined to comment on the case.
LEGAL ACTION: Transgender care advocates outside London’s Royal Courts of Justice in November 2022. They want the court to rule that long waiting times for gender care are unlawful. REUTERS/Henry Nicholls
“Stop hurting yourself”
Miles plans to study archaeology at university and is a keen rugby player. He has felt like a boy for as long as he can remember, but recalls a moment of delight at the start of a new school year when he was around 9.
The teachers were handing out colored notebooks and lanyards based on gender: blue with wizards and astronauts for boys, pink for girls. He was given blue books – “and wizards and astronauts over everything,” he said.
“It was not like ‘I’m trans,’ but just this amazing sense of joy within myself, ‘This feels amazing, and I don’t know why.’”
By age 11, as puberty began, Miles entered an all-girls’ secondary school. He was bullied by classmates for not wearing a bra or conforming to female norms. To fit in, he tried to be ultra-feminine, wearing skirts and make-up, having his eyebrows threaded, wearing false nails.
“My mood really dropped,” he said. After about a year, “I realized, I can’t do this anymore. I hate this.” Miles was barely leaving his room. He began cutting himself, over a period of four or five months. “In my mind, it was just easier to deal with physical pain than mental pain.”
His mother, Connie Pitcher, noticed the regular, precise lines on his arms. When she asked why he was distressed, Miles said he was struggling to understand his sexuality.
“I said, ‘I don’t care if you’re gay, straight, or whatever – I just want you to stop hurting yourself,’” Connie said. The family considered seeking mental health help, but worried about long waiting lists.
“We saw him really, really dip,” she said. “We were struggling with what to do. Because there is really no support.”