‘I’ve had to become my own doctor’: trans young people on life after the Cass review

After the landmark Cass review into the care of young people questioning their gender this year, puberty blockers have in effect been banned in England, Wales and Scotland for the treatment of under-18s with gender dysphoria.

Dr Hilary Cass, the report’s author, had criticised the lack of evidence surrounding the benefits and risks associated with the drugs, which delay the onset of puberty.

Even before her review was published, NHS England stopped the routine prescription of puberty blockers in March, and NHS Scotland followed in April. In May, the outgoing Conservative government also issued an emergency order banning private prescriptions of the drug.

This temporary order was challenged in court by a transgender advocacy group but it was upheld as lawful, and the new Labour health secretary, Wes Streeting, has defended the ban .

Cass, who said puberty blockers had become “almost totemic” in the debate about the appropriate care for this group of children and young people, suggested they should only be prescribed as part of an authorised clinical trial. This is not expected to start recruiting participants until next year.

In the meantime, the waiting list for children’s gender care is growing. According to NHS England’s own figures, more than 5,700 under-18s are waiting an average of 100 weeks for a first appointment in England and Wales.

The heavily criticised Gender Identity Development Service (Gids) at London’s Tavistock and Portman NHS trust has closed, and two new specialist hubs have launched, with more expected to open.

So what of the children and families affected by the changes? The Guardian spoke to four young people and their parents who are struggling to cope. Names have been changed to protect their identities.

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Hannah was three when she started telling her parents she was a girl, not a boy. Her mother, Sarah, said her daughter had worn skirts and dresses to nursery, and at the age of seven changed her name and pronouns after requesting this for about a year. But once she noticed the physical signs of puberty last year, Hannah – who was then 12 – started a “lengthy and intrusive” assessment process at the Sandyford clinic in Glasgow.

Sarah said: “The doctor was confident Hannah understood what was happening and had the capacity to consent. By February, she told us she would be recommending her for puberty blockers.”

But the following month, NHS England stopped new prescriptions south of the border and a few weeks later the Sandyford confirmed Hannah would not receive the blockers.

“They acknowledged that the timing was very hard on us, assured us nobody was getting discharged, and [said] there would be emotional wellbeing appointments,” her mother said.

The family felt they had no choice but to explore private medicine, but the full ban closed off that option. “We don’t know what’s next,” her mother said. “Hannah had always said she would kill herself if she had to go through male puberty. This is a medicine that’s still very much in use [for children going through early puberty ], but not available for Hannah.”

Hannah had had a difficult childhood, Sarah said, and was first referred to child and adolescent mental health services (Camhs) at the age of six. “She is one of the neurodivergent children who, according to the Cass narrative, is in particular need of protection by this ban,” Sarah said.

“But I cannot stress enough that everyone who knows Hannah, including her GP, Camhs and social work, believe she needs puberty blockers and that the NHS should be providing this care. Her GP and a Camhs psychiatrist both wrote to Sandyford to stress this.

“There are a lot of professionals involved in Hannah’s life; all accept her absolute consistency with regard to gender identification and none have concerns about our parenting. This ban has made an already vulnerable child more vulnerable.”

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The outright ban imposed by the government this year was “a performative gesture”, said Grin, a 17-year-old trans boy and sixth form student. “The chance of getting blockers at a point in your development when they are actually useful was effectively zero before it; there already was no access,” he said.

It was this frustration that prompted him and another trans friend to embark on a protest at the end of June, scaling the front of the NHS England building in London and perching on a ledge for three nights under the banner Trans Kids Deserve Better.

“The reason we used the image of a pawn on our banner is because it feels like young people are being used for political gain and treated as an intellectual exercise, rather than as human beings,” he said.

Grin, who lives in London, joined the waiting list for Gids the week after he turned 13 four years ago. But he had still not got an appointment when he was referred to adult services earlier this year.

“It’s really scary being a young person just working out who you are, and to know that your puberty is progressing in a way that you don’t feel aligned with – you feel trapped,” he said. “My body was changing in a way I actively hated.”

He obtained hormones privately online at 14 with the support of his parents. He has now been on puberty blockers, bought from abroad, for four years and, through his GP, has been taking the masculinising hormone testosterone for three years.

“The whole point of blockers is to be a compromise, so that you don’t have to go through permanent change before you fully know what you want. It’s a scary thing to think about at 11,” he said.

“If I’d had access to blockers at that age, it would have given me time to engage with therapy – no amount of psychological intervention is going to help when you’ve got that huge terror about your body changing. Had I been cis, that would have given me time to figure it out.”

The Cass review urged the NHS to introduce a full research programme for young people treated by gender services, which could include puberty blockers, but Grin believes “the future is DIY hormones” – where people source and administer drugs without professional medical oversight, typically buying them online.

“There is a concern that the next generation getting blockers will not be regulated, but a bigger issue is that there will be a much greater differentiation depending on parents: do they have the money to go private and do they trust their own instincts to go against what the NHS is advising for their children?” he said.

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Coven, an 18-year-old trans girl and student from London, joined the NHS waiting list for youth gender services at the age of 13, when she socially transitioned with the support of her family. “At the time I wasn’t sure about the medication I needed but I knew I needed help. Instead, I’m now on an adult waiting list and still haven’t had my first appointment,” she said.

Although her GP has been supportive, putting her on a waiting list for psychological support, she became too old for that service before she was seen – although she has been able to get some counselling through queer organisations.

“I looked into private healthcare but the money involved meant it just wasn’t possible,” she said. Even before the puberty blockers ban, “nobody was getting healthcare anyway”, she added. “I know one of two people out of a large group of friends who have actually made it off the NHS waiting list, and by then they were way past the need for puberty blockers.”

When she heard that the court had ruled the ban legitimate , it was “crushing, but not a surprise”, she said.

“From my experience, young trans people don’t have access to healthcare. The waiting lists are long and cruel, the prices of a private clinic are unrealistic, and other routes are uncontrolled and not often monitored by medical professionals. Every pathway looks bleak right now.”

Despite her reservations, Coven has been taking non-prescription hormone replacement therapy for two years. “I’ve had to become my own doctor, do all my own research, spend so much time analysing blood tests on my own. Don’t I deserve someone to oversee my care?” she said.

“If I was in the room with decision-makers I’d want to tell them that so many people are drowning in despair because of the decisions they’ve made.”

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Paula’s trans son, Josh, was seen by Gids at the age of 15 after a wait of two years. “I did have worries as a parent because I felt there were a lot of unknowns. The discussion around transgender care is upsetting because people talk with such certainty and there’s so much we don’t know,” she said.

“For me, the concern was about making those choices at such a young age. There does seem to have been a surprising lack of research and relying on received wisdom instead.”

The clinic recommended that Josh experience more of life before making a decision about hormonal intervention. “There’s been a lot of coverage about the Tavistock giving out puberty blockers readily, and that wasn’t our experience,” his mother said. “They weren’t very systematic in their care of Josh, but I didn’t feel they were trying to advocate for puberty blockers.”

Our relationship with our child was more important than anything else

Paula, mother of Josh

She added: “One of the problems I had at the time was that they were presented as a way of pausing, reflecting and giving breathing space, but almost all the young people who started them went on the cross-sex hormones [which are designed to masculinise or feminise a person’s body], so it seemed like a very clear pathway.

“There’s wasn’t always transparency about that, or else a level of knowledge was assumed that parents didn’t have. Josh certainly saw it as a first step. In his mind the only reason to go to Gids was to get on [puberty] blockers.”

Josh, who is now 20, ended up saving money from his part-time job and getting testosterone online without his parents’ knowledge when he turned 18.

“He was so determined. That was when we entered a different phase – do I want to be unhappy for the rest of my life because my child is doing something I worry about? Our relationship with our child was more important than anything else.”

Paula echoed Cass in saying that puberty blockers have become a key focus in the sometimes toxic debate about treatment for young people. “Blockers seem to have become a ‘flashpoint’ for the whole debate about healthcare for gender-questioning young people,” she said. “Sometimes, the vitriol I find in my news feed is horrifying. But Josh is very resilient and clear in himself about who he is.”

In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie . In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org , or text HOME to 741741 to connect with a crisis counsellor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org .