Cass Review: What are the recommendations on child gender care?

NHS adult gender services in England will undergo a major review after the doctor behind a long-awaited report on children’s services said teenagers are “falling off a cliff edge” in their care when they reach 17.

The announcement came as the Cass Review’s final report said children have been let down by a lack of research and evidence on medical interventions in gender care, in a debate which it said has become exceptionally toxic.

Among the 32 recommendations in the near-400 page report, the independent review of gender identity services for children and young people said a “follow-through service” should be put in place for 17-25-year-olds, with regional centres either extending the age range of their patients or through “linked services”.

The Cass Review was commissioned by NHS England and NHS Improvement in 2020 following a rise in the number of youngsters seeking help for issues with their gender.

The review made 32 recommendations in total. Here, we provides a summary of what Dr Cass has said:

The NHS should put in place a “full programme of research” looking at the characteristics, interventions and outcomes of every young person presenting to the NHS gender services, with consent routinely sought for enrolment in a research study which follows them into adulthood.

Gender care is “an area of remarkably weak evidence”, the review stated, but results of studies have been “exaggerated or misrepresented by people on all sides of the debate to support their viewpoint”.

Dr Cass said there is currently “no good evidence on the long-term outcomes of interventions to manage gender-related distress”.

Alongside a puberty blocker trial, which is expected could be in place by December, there should be research into psychosocial (therapeutic) interventions and the use of the masculinising and feminising hormones testosterone and oestrogen.

On the latter, the review warned giving such hormones to 16-year-olds should be an approach taken with “extreme caution”.

The care of children and young people questioning their gender identity or experiencing gender dysphoria “needs to be holistic and personal”.

Services “must operate to the same standards as other services seeing children and young people with complex presentations and/or additional risk factors”.

The review says assessments of needs with a view to informing “an individualised care plan” should include screening for neurodevelopmental conditions, including autism, as well as a mental health assessment.

The approach to care for the youngest children should be different to that for teenagers.

There should be no lower age limit to accessing help and support and parents and families should be helped to ensure options “remain open and flexible for the child”.

For those yet to hit puberty, there should be a “separate pathway” of care within each regional network of services, and young children and their parents should be prioritised for “early discussion with a professional with relevant experience”.

There should be “follow-through services” for 17 to 25-year-olds, rather than being transferred straight into adult services, with regional centres either extending the age range of their patients or through “linked services, to ensure continuity of care and support at a potentially vulnerable stage in their journey”.

The review said all children should be offered “fertility counselling and preservation” before going down the route of medical intervention.

Referrals into the now-closed Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS Foundation Trust were “unusual” in that they were accepted directly from GPs and from non-healthcare professionals including teachers and youth workers.

Dr Cass said she supports the NHS England proposal for all referrals to come via secondary care.

There was “no clear evidence” that social transition in childhood has any positive or negative mental health outcomes and “relatively weak” evidence for effects in adolescence.

But children who socially transitioned – changing names, pronouns etc – at an earlier age or before being seen in clinic “were more likely to proceed to a medical pathway”.

Partial transition “may be a way of ensuring flexibility”, the review said, adding that appropriately-trained clinical staff should advise on the risks and benefits of social transition “referencing best available evidence”.

It warns parents must be careful not to unconsciously influence the child’s gender expression.

Professionals have been reluctant to engage in the clinical care of gender-questioning children and young people due to the weak evidence in the area, a lack of consistent professional guidance and support, and long-term implications of making the wrong judgment about treatment options, the review said.

There is a need for the “appropriate skill mix to support both individuals who require medical intervention and those who do not” as work continues to increase the available workforce.

The workforce should include a wide range of specialists including paediatricians, psychiatrists, clinical nurse specialists, social workers, specialists in neurodiversity, speech and language therapists and occupational health specialists.

Endocrinologists and fertility specialists should also feature “for the subgroup for whom medical treatment may be considered appropriate”.

The review said NHS England must identify gaps in professional training programmes and develop training materials “to supplement professional competencies, appropriate to their clinical field and level”.

NHS England should consider whether a separately commissioned service is needed for people who wish to detransition – where someone discontinues or reverses a medical gender transition – given that people who regret going through this process might be hesitant to return to the same service they had previously used.

The review states that “better services and pathways” are needed for a group of whom many are “living with the irreversible effects of transition and no clear way to access services”.

The percentage of people treated with hormones who then detransition remains unknown because of the lack of long-term follow-up studies, but the review stated there is suggestion numbers are increasing.

Anyone detransitioning should be carefully monitored in a supportive setting, especially when coming off hormone treatments.

With puberty blockers no longer being prescribed to children on the NHS, the review stated that no GP should be expected to “enter into a shared care arrangement with a private provider” if a young person has been given access to them via that route.

The review said GPs had “expressed concern about being pressurised to prescribe hormones after these have been initiated by private providers and that there is a lack of clarity around their responsibilities in relation to monitoring”.

Dr Cass said the Department of Health and Social Care and NHS England must “consider the implications of private healthcare on any future requests to the NHS for treatment, monitoring and/or involvement in

research”, noting that a young person’s eligibility to take part in the NHS study into puberty blockers could be affected if they took puberty blockers outside the study.