Introduction
Dr Hilary Cass, former President of the Royal College of Paediatrics and Child Health, was asked by NHS England and NHS Improvement to chair an independent review and make recommendations on how to improve services for children and young people experiencing issues with their gender identity or gender incongruence, and ensure that the best model/s for safe and effective services are commissioned.
The final Cass Review of gender identity services for children and young people was published on 10 April 2024. Taking 4 years to complete, it is the most thorough scientific review of the evidence for treatments for gender questioning and gender distressed young people ever undertaken. It was supported by a series of systematic reviews, commissioned from the University of York, on a range of issues from epidemiology through to treatment approaches, and international models of current practice. The Review also heard from a wide range of people including children and adolescents, parents, carers, young adults, and professionals.
The research programme, led by the University of York, comprised appraisal of the published evidence and guidelines, an international survey and quantitative and qualitative research. A Clinical Expert Group (CEG) was established by the Review to help interpret the findings. The final report provides full details of the research approach and methodology used by the research team and a synthesis of the findings alongside interpretation of what they mean for the Review. The peer reviewed systematic reviews have been published alongside the report.
The Cass Review will have a profound effect on practice not only in England but in the devolved nations of the UK and around the world.
Understanding history and context
As well as making recommendations for service improvement, the Cass Review also looks at the wider context, seeking to understand the reasons for the rapid increase in referrals to GIDS which began in 2014. It questions why a particular pathway of care was developed and became widespread, what evidence underpinned it, the failings in the existing services, and what lessons can be learned.
Issues for wider societal debate
The Review is focused on the clinical services provided to children and young people who seek help from the NHS to resolve their gender-related distress, and “can only set out what is known and unknown, and think about how the NHS can respond safely, effectively and compassionately.” While it did touch on and make recommendations about some issues related to that purpose, Cass made it clear that this “necessarily leaves some issues for wider societal debate.”
Summary of key findings and recommendations
Fundamentally different service model
Cass recommends a fundamentally different service model, one in line with normal paediatric provision, providing holistic evidence-based care to gender questioning children and young people. The Review proposes moving away from the “affirmative” pathway of puberty blockers and hormones to a service based on psycho-social support. This will involve giving attention to all the factors that may be contributing to the child or young person’s difficulties or distress, including mental health issues, social problems and neurodiversity.
Reasserting principle of safe, evidence based care
Fundamental to the Cass Review is the principle that children and young people experiencing gender related distress should receive safe, holistic evidence-based health care of the same standard and quality as any other child or young person, including the support they need to thrive. This group of young people often has complex problems, including mental illness, neurodiversity, and a variety of social problems that may be contributing to their distress.
Cass highlights concerns about the risk of “diagnostic overshadowing”, when there is a single focus on gender and the need for puberty blockers. This then prevents the other issues affecting the child or young person from being addressed. For that reason, the care for gender related distress should be part of mainstream health provision for children and adolescents. The Review makes practical proposals for how change will be implemented, with recommendations for referral pathways, assessment, treatment, service organisation, staffing, training, data collection, research, and governance.
Puberty blockers and cross sex hormones should not be routinely prescribed
Central to the findings is the recognition of very poor evidence for the safety and efficacy of current treatments for gender questioning children and young people. This is due to both poorly designed research and lack of long term follow up. Due to their potential risks to neurocognitive development, psychosexual development and longer-term bone health, the recommendation is that puberty blockers should not be routinely prescribed and should only be offered under a research protocol. Furthermore masculinising/feminising hormones should be used with extreme caution under the age of 18, and NHS England should review its policy on these hormones.
Psycho-social support recommended as first line of treatment
Psycho-social support is recommended as the first line of treatment. Cass calls for the development of an explicit clinical pathway for non-medical interventions, as well as a research strategy for evaluating the effectiveness of non-medical interventions.
NHS services must change to meet children and young people’s needs
Children and young people referred to gender services have a broad range of complex needs that extend beyond gender related distress, and this needs to be reflected in services offered to them by the NHS, and for that reason gender services should be integrated with local secondary care services such as Child and Adolescent Mental Health Services and paediatric services. This is within the context of a significant rise in mental illness and neurodiversity problems in children and young people, especially girls, which needs to be understood and appropriately provided for, both in terms of prevention and the provision of mental health and paediatric services.
The unacceptably long waiting times, and the pressure youth gender services are under is acknowledged: “At its heart are vulnerable children and young people and an NHS service unable to cope with the demand”
Research
The systematic reviews, commissioned from York University, make an important contribution to our current knowledge and understanding of the field of gender medical care. Gaps in the evidence are highlighted. These include all aspects of gender care for children and young people, from epidemiology through to assessment, diagnosis, therapeutic support, and treatment. Cass advocates for a research programme which builds evidence about all potential interventions (not just hormones) to determine the most effective ways of supporting children and young people to thrive. A living systematic review should be established which would be continually updated to reflect new evidence as it becomes available to inform the clinical approach of the new services, ensuring it remains up-to-date and dynamic.
Data collection
Safety and effectiveness of care, and improvement in services, requires adequate collection of data and long term follow up. Unfortunately, the Cass research team was blocked from carrying this out through the non-cooperation by adult gender services. There is a strong case made for NHS England to ensure the data linkage research takes place.
Clinical governance
One of the problems that has been exposed by the Cass Review is the poor governance of innovative clinical practice: good clinical governance should require collection of data and evidence with appropriate scrutiny to prevent the incremental creep of new practices without adequate evidence of safety and efficacy. Cass says, “at a local level, regulation of innovation should be integrated with regulation of clinical care. Responsible innovation requires anticipatory governance processes to be put in place, organisational safeguards, and submission of innovation to external review. Reporting must include failure as well as success.”
Safeguarding
The Review rightly identifies safeguarding as an important consideration. It reports that clinicians working with children and young people experiencing gender dysphoria have highlighted that safeguarding issues can be overshadowed or confused when there is focus on gender, or in situations where there are high levels of gender-related distress. It recommends that clinicians should assess and consider safeguarding across each domain of the assessment framework.
There are accounts of children and young people at safeguarding risk being lost to follow up, and / or of young people presenting to the emergency department with a safeguarding history, that staff were unaware of because of changes of name and NHS number.
NHS Numbers
The NHS and the Department of Health and Social Care needs to review the process and circumstances of changing NHS numbers and find solutions to address the clinical, safeguarding and research implications.
Other significant recommendations
Review of services for 17-25 year olds
There are recommendations for a review of services for 17-25 year olds. There is evidence that 70-80% referrals to adult clinics are females under the age of 25, with complex presentations, reflecting the changes in demographic and complexity seen in referrals to child and adolescent services. It is likely that similar factors are affecting referrals to adult services and there is an urgent need to understand this change and think about the best way to help these young adults, including ensuring there is an adequate evidence base for safe effective treatment.
Advocating services for detransitioners.
The Review recognises there are people who have regretted transition and no longer identified as transgender, some who stopped taking hormones or sought to reverse aspects of the physical changes that had been made to their bodies, whether or not they continue to identify as transgender, and some who desisted on the pathway before receiving hormonal or surgical intervention. Estimates of the percentage of individuals who embark on a medical pathway and subsequently have regrets or detransition are hard to determine from gender clinic data alone. Regardless of the numbers who detransition, there is a lack of adequate service provision for this group of individuals who have a range of physical and psychological needs. The Review recommends services be developed for detransitioners.
Evidence based guidelines
There is criticism of the currently available guidelines, in particular the WPATH guidelines, which have been very influential in UK practice and teaching.
“The World Professional Association of Transgender Healthcare (WPATH) has been highly influential in directing international practice, although its guidelines were found by the University of York appraisal process to lack developmental rigour.”
New evidence-based guidance is needed to aid decision making by patients, their families, and clinicians.
Gay and Lesbian youth
Cass recognises the concerns about care for gay and lesbian youth, citing evidence that a large percentage of young people referred to gender clinics are same sex attracted.
In the original Dutch study (de Vries etc al., 2011), 89% of the 70 patients were same-sex attracted to their natal sex, with most of the others being bisexual. Only one patient was heterosexual. Similar findings were published about the GIDS cohort. (Holt et al., 2014)
The Review was not able to obtain recent data relating to the sexual orientation of the GIDS patient cohort. This data is no longer routinely collected. Mixed responses were given by GIDS clinicians about the extent to which they explore sexuality with patients seen in the service, reflecting possible differences in practice.
Recommendation is made that clinicians should seek to understand the child/young person’s emerging sexuality and sexual orientation, consistent with assessments in other adolescent settings, where deemed appropriate to age and context.
Social Transition
The growing phenomenon of social transition is highlighted. Up to 60% of children and young people having undergone some form of social transition before being seen in gender clinics, a significant change from the early days of the service. The University of York’s systematic review on the impact of social transition which formed the basis of Cass’ findings concluded that the quality of the studies was not good enough to draw any firm conclusions, and did not find support for any of the suggested benefits of social transition.
Because of the lack of good evidence, the Review does not make strong recommendations on social transition. It recognises the possibility that social transition in childhood may change the trajectory of “gender identity development” for children with early gender incongruence. For this reason, a more cautious approach is advised for children than for adolescents.
Cass says it is important that school guidance can utilise some of the principles and evidence from the Review to help schools respond when a pupil says they want to socially transition. It is recommended that children and their families be advised on the risks and benefits of social transition, referencing best available evidence, and that this is not a role that can be undertaken by staff without appropriate clinical training. Parents should be actively involved in decision making unless there are strong grounds to believe that this may put the child or young person at risk.
The Review concludes by saying that clinicians should help families to recognise normal developmental variation in gender role behaviour and expression. Avoiding premature decisions and considering partial rather than full transitioning can be a way of ensuring flexibility and keeping options open until the developmental trajectory becomes clearer.
Suicide Risk
The fears of some children and young people, their families, and clinicians if puberty blockers and hormones are no longer available, that they will somehow be denied “lifesaving” treatments, is known. However, the systematic review of the evidence did not show that medical transition reduced suicide risk. It recognises that suicide risk in children and young people with gender dysphoria is higher than in the general youth population but appears to be comparable to other young people with a similar range of mental health and psychosocial challenges.
“Tragically deaths by suicide in trans people of all ages continue to be above the national average, but there is no evidence that gender affirmative treatments reduce this. Such evidence as is available suggests that these deaths are related to a range of other complex psychosocial factors and to mental illness.”
This clearly demonstrates the need for better availability of mental health services for this vulnerable cohort.
Private Sector
The Review understands and shares the concerns about the use of unregulated medications, and of providers that are not regulated within the UK. It strongly advises that any clinician who ascertains that a young person is being given drugs from an unregulated source should make the young person and their family aware of the risks of such treatment.
It notes that GPs have expressed concern about being pressurised to prescribe hormones after these have been initiated by private providers and says that GPs should not be expected to enter into a shared care arrangement with a private provider, particularly if that private provider is acting outside NHS guidance. Additionally, pharmacists are responsible for ensuring medications prescribed to patients are suitable.
Ending culture of fear within health professions
Dr Cass expresses concerns about the adverse impact on clinicians who have questioned the current provision of services and those who provide them of the toxicity of the debate which has made some healthcare professionals afraid to openly discuss their views.
“The knowledge and expertise of experienced clinicians who have reached different conclusions about the best approach to care are sometimes dismissed and invalidated.”
She said that this must stop, because “polarisation and stifling of debate to nothing to help the young people caught in the middle of a stormy social discourse, and in the long run will also hamper the research that is essential to finding the best way of supporting them to thrive.” Instead what is needed is open, respectful and constructive debate to find the best ways to help children and young people and their families.
Conversion therapy
Reference is made to potential legislation banning conversion practices and how this could impact the provision of professional support to gender-questioning young people. There is a real risk of it affecting recruitment of the necessary workforce for the new gender services. As children and young people with gender dysphoria may have a range of complex psychosocial challenges and/or mental health problems impacting on their gender-related distress, it is essential to explore these issues to provide diagnosis, clinical support, and appropriate intervention. It is harmful to equate this approach to conversion therapy, as it may prevent young people from getting the emotional support they deserve. The intent of psychological intervention is not to change the person’s perception of who they are but to work with them to explore their concerns and experiences and help alleviate their distress, regardless of whether they pursue a medical pathway or not.
Understanding the changing cohort
The changes in the types of patients being referred is well known. The report describes “the very altered profile of the children and young people who are now being seen in NHS gender services.” and says “To inform how to best care for them, it is essential to understand more about the factors that are influencing the change in patient profile.” There are a multitude of socio-cultural influences affecting young people, including societal acceptance; changes in concepts of gender and sexuality; manifestation of broader mental health challenges; peer and socio-cultural influence; and availability of puberty blockers.
It is possible that the availability of puberty blockers has stoked demand. The sharp rise in demand has coincided with wider availability of these drugs. Whilst “It is not possible to attribute causality in either direction to this association”, Cass says, ” it remains a possibility that a lower threshold for medicalisation has had an influence on the number of young people seeking this intervention.”
Lessons to be learned
Cass said there are lessons to be learned in relation to how and why the care of these children and young people came to deviate from usual NHS practice, how clinical practice became disconnected from the evidence base, and why warning signs that the service delivery model was struggling to meet demand were not acted on sooner.
Professional responsibility
Cass says professional bodies must come together “to provide leadership and guidance on the clinical management of this population taking account of the findings of the report.”
Conclusion
In conclusion, it is our view that the Cass Review is a profoundly important and thorough piece of work that will resonate around the world. We believe it will help protect our children and young people from harm and ensure they receive safe evidence-based care and support in future. It is now vitally important that the government implements the recommendations, and provides the resources to do so.
Dr Cass herself acknowledged there are issues outside the Review’s terms of reference which are for wider societal debate. This Review is only the beginning. There is more research needed and many more questions to be answered by those who care about safe, holistic, evidence-based care for children and young people, and we should all play our parts in making that a reality.
References
de Vries, A. L. C., Steensma, T. D., Doreleijers, T. A. H., & Cohen‐Kettenis, P. T. (2011). Puberty suppression in adolescents with gender identity disorder: A prospective follow‐up study. The Journal of Sexual Medicine, 8(8), 2276–2283. https://doi.org/10.1111/j.1743-6109.2010.01943.x
Holt, V., Skagerberg, E., & Dunsford, M.(2014). Young people with features of gender dysphoria: Demographics and associated difficulties. Clinical Child Psychology and Psychiatry, 21(1), 108–118. https://doi. org/10.1177/1359104514558431