Independent review of gender identity services for children and young people: Final report

Omschrijving

Dr Hilary Cass has submitted her final report and recommendations to NHS England in her role as Chair of the Independent Review of gender identity services for children and young people.

The Review was commissioned by NHS England to make recommendations on how to improve NHS gender identity services, and ensure that children and young people who are questioning their gender identity or experiencing gender dysphoria receive a high standard of care, that meets their needs, is safe, holistic and effective. 

The report describes what is known about the young people who are seeking NHS support around their gender identity and sets out the recommended clinical approach to care and support they should expect, the interventions that should be available, and how services should be organised across the country.

It also makes recommendations on the quality improvement and research infrastructure required to ensure that the evidence base underpinning care is strengthened.

In making her recommendations, Dr Cass has had to rely on the currently available evidence and think about how the NHS can respond safely, effectively, and compassionately, leaving some issues for wider societal debate.

Context

Exploration of identity is a completely natural process during childhood and adolescence and rarely requires clinical input. However, over the past five – ten years the number of children and young people being referred for NHS support around their gender identity has increased rapidly.

As a result, young people are waiting several years to receive clinical support and during this time they and their families are left to make sense of their individual situations, often dealing with considerable challenges and upheaval.

There has been a similar pattern in other Western countries, with clinicians noting not only the rising number but also a change in the case mix of the young people seeking support.

There have been many more birth-registered females being referred in adolescence, marking a shift from the cohort that these services have traditionally seen; that is, birth-registered males presenting in childhood, on whom the previous clinical approach to care was based.

Clinicians also noted that these young people often had other issues that they were having to manage alongside their gender-related distress.

The Independent Review set out to understand the reasons for the growth in referrals and the change in case-mix, and to identify the clinical approach and service model that would best serve this population. 

To provide an evidence base upon which to make its recommendations, the Review commissioned the University of York to conduct a series of independent systematic reviews of existing evidence and new qualitative and quantitative research to build on the evidence base.

Dr Cass also conducted an extensive programme of engagement with young people, parents, clinicians and other associated professionals.

Overview of key findings

• There is no simple explanation for the increase in the numbers of predominantly young people and young adults who have a trans or gender diverse identity, but there is broad agreement that it is a result of a complex interplay between biological, psychological and social factors. This balance of factors will be different in each individual.

• There are conflicting views about the clinical approach, with expectations of care at times being far from usual clinical practice. This has made some clinicians fearful of working with gender-questioning young people, despite their presentation being similar to many children and young people presenting to other NHS services.

• An appraisal of international guidelines for care and treatment of children and young people with gender incongruence found that that no single guideline could be applied in its entirety to the NHS in England.

• While a considerable amount of research has been published in this field, systematic evidence reviews demonstrated the poor quality of the published studies, meaning there is not a reliable evidence base upon which to make clinical decisions, or for children and their families to make informed choices. 

• The strengths and weaknesses of the evidence base on the care of children and young people are often misrepresented and overstated, both in scientific publications and social debate.

• The controversy surrounding the use of medical treatments has taken focus away from what the individualised care and treatment is intended to achieve for individuals seeking support from NHS gender services.

• The rationale for early puberty suppression remains unclear, with weak evidence regarding the impact on gender dysphoria, mental or psychosocial health. The effect on cognitive and psychosexual development remains unknown.

• The use of masculinising / feminising hormones in those under the age of 18 also presents many unknowns, despite their longstanding use in the adult transgender population. The lack of long-term follow-up data on those commencing treatment at an earlier age means we have inadequate information about the range of outcomes for this group.

• Clinicians are unable to determine with any certainty which children and young people will go on to have an enduring trans identity.

• For the majority of young people, a medical pathway may not be the best way to manage their gender-related distress. For those young people for whom a medical pathway is clinically indicated, it is not enough to provide this without also addressing wider mental health and/or psychosocially challenging problems.

• Innovation is important if medicine is to move forward, but there must be a proportionate level of monitoring, oversight and regulation that does not stifle progress, while preventing creep of unproven approaches into clinical practice. Innovation must draw from and contribute to the evidence base.

Overview of Recommendations

The recommendations set out a different approach to healthcare, more closely aligned with usual NHS clinical practice that considers the young person holistically and not solely in terms of their gender-related distress. The central aim of assessment should be to help young people to thrive and achieve their life goals.

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

• Expand capacity through a distributed service model, based in paediatric services and with stronger links between secondary and specialist services.

• Children/ young people referred to NHS gender services must receive a holistic assessment of their needs to inform an individualised care plan. This should include screening for neurodevelopmental conditions, including autism spectrum disorder, and a mental health assessment.

• Standard evidence based psychological and psychopharmacological treatment approaches should be used to support the management of the associated distress from gender incongruence and cooccurring conditions, including support for parents/carers and siblings as appropriate.

• Services should establish a separate pathway for pre-pubertal children and their families. ensuring that they are prioritised for early discussion about how parents can best support their child in a balanced and non-judgemental way. When families/carers are making decisions about social transition of pre-pubertal children, services should ensure that they can be seen as early as possible by a clinical professional with relevant experience.

• NHS England should ensure that each Regional Centre has a follow-through service for 17–25-year-olds; either by extending the range of the regional children and young people’s service or through linked services, to ensure continuity of care and support at a potentially vulnerable stage in their journey.  This will also allow clinical, and research follow up data to be collected. 

• There needs to be provision for people considering detransition, recognising that they may not wish to re-engage with the services whose care they were previously under.

• A full programme of research should be established to look at the characteristics, interventions and outcomes of every young person presenting to the NHS gender services.
• The puberty blocker trial previously announced by NHS England should be part of a programme of research which also evaluates outcomes of psychosocial interventions and masculinising/ feminising hormones.

• The option to provide masculinising/feminising hormones from age 16 is available, but the Review recommends extreme caution. There should be a clear clinical rationale for providing hormones at this stage rather than waiting until an individual reaches 18.  Every case considered for medical treatment should be discussed at a national Multi- Disciplinary Team (MDT).

• Implications of private healthcare on any future requests to the NHS for treatment, monitoring and/or involvement in research, and the dispensing responsibilities of pharmacists of private prescriptions needs to be clearly communicated.