Hilary Cass: Weak evidence letting down children over gender care

Children have been let down by a lack of research and "remarkably weak" evidence on medical interventions in gender care, a landmark review says.

The Cass Review, published on Wednesday by paediatrician Dr Hilary Cass, calls for gender services for young people to match the standards of other NHS care.

She says the "toxicity" of the debate around gender meant professionals were "afraid" to openly discuss their views.

NHS England says it has already made significant progress in making changes.

The Cass Review, which looked at gender identity services for under-18s, was commissioned by NHS England in 2020 after a sharp rise in the number of patients referred to the NHS who were questioning their gender.

It was announced after whistle-blowers raised concerns about care at the Gender Identity and Development Service (Gids) - which was the only specialist gender clinic for children and young people in England and Wales.

Gids closed last week, four years after it was rated as "inadequate" by inspectors.

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Regional hubs have now opened in London and Liverpool in an effort to move away from a single-service model and to tackle long waiting lists, which are currently around four years long.

Hospital executives have voiced concern about the cancellation of appointments from the old service, in leaked emails seen by the BBC, but NHS England insisted patients would receive continuity of care.

Dr Cass told BBC Radio 4's Today programme that clinicians were concerned about having "no guidance, no evidence, no training".

She said "we don't have good evidence" that puberty blockers are safe to use to "arrest puberty", adding that what started out as a clinical trial had been expanded to a wider group of young people before the results of that trial were available.

"It is unusual for us to give a potentially life-changing treatment to young people and not know what happens to them in adulthood, and that's been a particular problem that we haven't had the follow-up into adulthood to know what the results of this are," she said.

In the weeks leading up to the review's publication, NHS England announced puberty blockers - which Dr Cass defines as hormones that "stop the progress of puberty" - would no longer be routinely prescribed, and should only be given to gender-distressed children as part of clinical trials.

Details of these trials are yet to be announced.

Clinics overseen by NHS Scotland can continue to prescribe puberty blockers for children.

Some private clinics will also continue to do so, with Dr Cass warning families need to be "made aware" of the risks of "unregulated treatment".

The Cass Review's conclusions are documented in a 388-page report, which makes 32 recommendations on how gender services for children and young people should operate.

It calls for better research into the characteristics of children seeking treatment and to look at outcomes for every young person.

In essence, Dr Cass says children have been "let down" by a failure to base gender care on evidence-based research.

"The reality is we have no good evidence on the long-term outcomes of interventions to manage gender-related distress," she writes.

She is clear that children and young adults using the services deserve the highest standards of care and research, which are expected elsewhere in the NHS.

Her report adds that representatives from the regional centres should form a national group to oversee ethics, training and to ensure everyone receives "the same high standards of evidence-based care".

New clinics are to replace the gender identity service based at London's Tavistock and Portman NHS Foundation Trust

The report recommends that clinicians should address issues patients may have, that are not necessarily related to their gender identity, when they are referred to the new clinics.

Dr Cass says these "holistic assessments" should include screening for neurodevelopmental conditions such as autism, and a mental health assessment.

She said the assessments would address what she called "diagnostic overshadowing" - when patients' other healthcare issues were overlooked in cases of patients questioning their gender.

She told Today that many of the more than 3,000 young people being seen by gender identity services were birth-registered girls presenting in early teens, "often with quite complex additional problems".

She said about 15 years ago only 50 predominantly birth-registered boys were being seen by gender identity services.

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"What's unfortunately happened for these young people is that because of the toxicity of the debate, they've often been bypassed by local services who've been really nervous about seeing them," Dr Cass said.

"So rather than doing the things that they would do for other young people with depression, or anxiety, or perhaps undiagnosed autistic spectrum disorder, they've tended to pass them straight on to the Gid service."

"There are few other areas of healthcare where professionals are so afraid to openly discuss their views, where people are vilified on social media, and where name-calling echoes the worst bullying behaviour," she said.

Her report added that the "exceptional" toxicity has had a negative impact on the quality and availability of evidence.

Under NHS England's latest policy on cross-sex hormones, 16-year-olds can be prescribed feminising or masculinising hormones in the form of testosterone or oestrogen.

Dr Cass' report warns that this should only be done with "extreme caution" and there should be a "clear clinical rationale for providing hormones at this stage rather than waiting until an individual reaches 18".

The report also warns that younger children should be treated with a "more cautious approach" than adolescents when considering whether to allow them to change their names, pronouns or clothing - known as socially transitioning.

It says those who have not yet reached puberty should be "prioritised for early discussion with a professional with relevant experience" and they should be put on a separate care pathway than older, adolescent patients.

Dr Cass repeats previous warnings there was no clear evidence on whether social transitioning had positive or negative mental health outcomes.

She says those who have done so at an earlier age, or before being seen by a clinic, were more likely to go down a medical pathway and that for most, such a path "will not be the best way to manage their gender-related distress".

She also recommends that young people aged 17-25 should have a "follow-through" service rather than going straight into adult services, as it recognised the age group as being at a "potentially vulnerable" stage of their journey.

Dr Cass's review recommended that NHS England should "ensure there is provision" for de-transitioners - people who have experienced regret over medical interventions and wish to live as their birth-registered sex.

The solicitor who represented Keira Bell - a de-transitioner who took legal action against the prescription of puberty blockers after feeling she should have been challenged more about her request for medical treatment - welcomed the findings of the report.

Paul Conrathe told the BBC: "It is very reassuring for young people who are gender-questioning, and their parents. Hopefully there'll be a new service developed that will meet their needs appropriately.

"It is, unfortunately, for many young people too late.

"They live with the ongoing consequences of poor clinical treatment and their lives have been forever changed."

Sonja, a transgender woman, told the BBC that she wanted to transition from the age of 15, but was put on a long waiting list and was transferred to adult services at 18. She chose to get private treatment, costing hundreds of pounds, after realising she would have to wait another two years for a first appointment on the NHS.

She called this time "an incredibly dark period in terms of my mental health".

"It was the lowest I have been during the course of my transition, because of simply me having to wait as long as I did. I went through pretty much the full course of male puberty. During that time I felt incredibly uncomfortable.

"I didn't feel like I could accurately be myself - and that's purely because I had to wait so long to gain any semblance of care."

Dr Cass called Sonja's story "heart-breaking", adding that there were many other stories like hers. NHS England had since put some additional resourcing in place to support local services doing "at least initial" assessment, she added.

NHS to consider findings

An NHS spokesperson said it had made "significant progress" towards establishing "fundamentally different" gender services for children and young people.

They added they would carefully consider the report's recommendations before setting out a "full implementation plan".

"The NHS is also bringing forward its systemic review of adult gender services and has written to local NHS leaders to ask them to pause offering first appointments at adult gender clinics to young people below their 18th birthday."

Prime Minister Rishi Sunak said the government had "acted swiftly" after the interim report in 2022 and "will continue to ensure we take the right steps to protect young people".

He added: "We simply do not know the long-term impacts of medical treatment or social transitioning on them, and we should therefore exercise extreme caution."

Shadow health and social care secretary Wes Streeting told the Sun's Never Mind the Ballot's programme that the review raised "some serious concerns that are pretty scandalous".

He said a Labour government, if in power, would work to bring in the recommendations.