By Josh Parry, LGBT & identity producer, and Hugh Pym, health editor
BBC News
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 whistleblowers 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.
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.
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. They include considerations around medical interventions, further research, and safeguarding measures.
‘Let down’
Dr Cass calls for better research into the characteristics of children seeking treatment and to look at outcomes for every young person.
In essence, she says children have been let down by a failure to base gender care on evidence-based research.
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.
Addressing children and young people in the foreword to her report, she wrote: “I have been disappointed by the lack of evidence on the long-term impact of taking hormones from an early age; research has let us all down, most importantly you.”
“The reality is we have no good evidence on the long-term outcomes of interventions to manage gender-related distress.”
Image source, James Anderson/BBC News
New clinics are to replace the gender identity service based at London’s Tavistock and Portman NHS Foundation Trust
Dr Cass also raised concerns about what she called “diagnostic overshadowing” – when patients’ other healthcare issues were overlooked in cases of patients questioning their gender.
The report recommends that young people referred to the new clinics should have a “holistic assessment”, which Dr Cass says should include screening for neurodevelopment conditions such as autism and a mental-health assessment.
It also says 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”.
The report warns the “toxicity of the debate” around gender has been “exceptional” and has had a negative impact on the quality and availability of evidence.
Young people have been “caught in the middle of a stormy social discourse”, Dr Cass says.
“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.”
In the weeks leading up to the review’s publication, NHS England announced new policies around the use of puberty blockers and cross-sex hormones.
It said puberty blockers – which Dr Cass defines as hormones that “stop the progress of puberty” – would no longer be routinely prescribed, and that they should only be given to gender-distressed children as part of clinical trials.
Details of those trials are yet to be announced.
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.
Dr Cass also warns parents should be mindful they are not “unconsciously influencing the child’s gender expression”.
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.
About 15 years ago, gender identity services were seeing about 50 predominantly birth-registered boys in childhood, according to Dr Cass.
But over the last 10 years, that number has grown to more than 3,000 young people, she told BBC Radio 4’s Today programme. “And it’s mainly birth-registered girls presenting in early teens, and often with quite complex additional problems.”
She added: “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.
“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.”
Image source, PA Media
Retired consultant paediatrician Dr Cass is a former president of the Royal College of Paediatrics
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. Concerns that had been raised in yesteryear that weren’t heeded and ultimately had to be played out in [the courts] have been justified.
“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 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, it never felt like me, I always felt wrong.
“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.
“It’s not about the money, it’s about the workforce, and a huge part of this that we’ve got to help clinicians from all backgrounds realise that they do have the transferable skills to see these young people.”
“I know there are massive waiting lists for mental health in general, but this particular group has been disadvantaged compared to other similarly-distressed young people.”
An NHS spokesperson said it had made “significant progress” towards establishing “fundamentally different” gender services for children and young people.
They added: “We will set out a full implementation plan following careful consideration of this final report and its recommendations.
“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 welcomed the review, and 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 called on the government to “immediately act” and said a Labour government, if in power, would work to bring in the recommendations.
He added he was committed to working with the health secretary “to put children’s health and wellbeing above the political fray”.
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