Cass Review – Final Report

Picture of Dr Hilary Cass

Dr Hilary Cass

Cass Review – Final Report

“Medicine’s ground state is uncertainty. Wisdom – for both the patients and doctors – is defined by how one copes with it.” Atul Gawande, Complications (2002)

 

Dr Hilary Cass

This Review is not about defining what it means to be trans, nor is it about undermining the validity of trans identities, challenging the right of people to express themselves, or rolling back on people’s rights to healthcare. It is about what the healthcare approach should be, and how best to help the growing number of children and young people who are looking for support from the NHS in relation to their gender identity.

The Review has not been conducted in a vacuum. There have been many moving parts and a significant, often challenging public debate. I have been buffeted by different issues along the way but have tried to remain focused on my remit.

One of the great pleasures of the Review has been getting to meet and talk to so many interesting people. I want to thank all those who have generously given their time to share their stories, experiences and perspectives. I have spoken to transgender adults who are leading positive and successful lives, and feeling empowered by having made the decision to transition. I have spoken to people who have detransitioned, some of whom deeply regret their earlier decisions. I have spoken to many parents, with very different perspectives. Some have fought to get their children onto a medical pathway and have spoken about how frustrated they have felt to have to battle to get support. Others have felt a medical pathway was entirely the wrong decision for their child and have described their dismay about actions taken without their consent and in ignorance of the various other difficulties their child may have been through, such as loss of a parent, traumatic illness, diagnosis of neurodiversity and isolation or bullying in school.

As well as hearing from those with lived experience, I have spoken to a very wide range of clinicians and academics. Clinicians who have spent many years working in gender clinics have drawn very different conclusions from their clinical experience about the best way to support young people with gender‑related distress. Some feel strongly that a majority of those presenting to gender services will go on to have a long‑term trans identity and should be supported to access a medical pathway at an early stage. Others feel that we are medicalising children and young people whose multiple other difficulties are manifesting through gender confusion and gender‑related distress.

One thing unites all these people; they all believe passionately in what they have told me, and those with either parental or clinical responsibility for children and young people are trying their very best to do what they feel is the right thing to support them.

Despite the best intentions of everyone with a stake in this complex issue, the toxicity of the debate is exceptional. I have faced criticism for engaging with groups and individuals who take a social‑justice approach and advocate for gender affirmation, and have equally been criticised for involving groups and individuals who urge more caution. The knowledge and expertise of experienced clinicians who have reached different conclusions about the best approach to care are sometimes dismissed and invalidated.

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. This must stop.

Polarisation and stifling of debate do 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.

This is an area of remarkably weak evidence, and yet results of studies are exaggerated or misrepresented by people on all sides of the debate to support their viewpoint. The reality is that we have no good evidence on the long‑term outcomes of interventions to manage gender‑related distress.

It often takes many years before strongly positive research findings are incorporated into practice. There are many reasons for this. One is that doctors can be cautious in implementing new findings, particularly when their own clinical experience is telling them the current approach they have used over many years is the right one for their patients. Quite the reverse happened in the field of gender care for children. Based on a single Dutch study, which suggested that puberty blockers may improve psychological wellbeing for a narrowly defined group of children with gender incongruence, the practice spread at pace to other countries. This was closely followed by a greater readiness to start masculinising/feminising hormones in mid‑teens, and the extension of this approach to a wider group of adolescents who would not have met the inclusion criteria for the original Dutch study. Some practitioners abandoned normal clinical approaches to holistic assessment, which has meant that this group of young people have been exceptionalised compared to other young people with similarly complex presentations. They deserve very much better.

On a personal note, I would like to talk through this foreword to the children and young people at the heart of this Review. I have decided not to write to you separately because it is important that everyone hears the same message. Some of you have been really clear that you want much better advice on the options available to you and the risks and benefits of different courses of action and will be pleased by what you will read in this report. Others of you have said you just want access to puberty blockers and hormones as quickly as possible, and may be upset that I am not recommending this. I have been very mindful that you may be disappointed by this. However, what I want to be sure about is that you are getting the best combination of treatments, and this means putting in place a research programme to look at all possible options, and to work out which ones give the best results. There are some important reasons for this decision.

Firstly, you must have the same standards of care as everyone else in the NHS, and that means basing treatments on good evidence. 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. However, we cannot expect you to make life‑changing decisions in a vacuum without being able to weigh their risks and benefits now and in the long‑term, and we have to build the evidence‑base with good studies going forward. That is why I am asking you to join any research studies that look at the longer‑term outcomes of these interventions so you can help all those coming behind you. We have to show that the treatments are safe and produce the positive outcomes you want from them. People in research studies often do better than people who are on regular treatment because they get the chance to try new approaches, as well as getting much closer follow‑up and support.

Secondly, medication is binary, but the fastest growing group identifying under the trans umbrella is non‑binary, and we know even less about the outcomes for this group. Some of you will also become more fluid in your gender identity as you grow older. We do not know the ‘sweet spot’ when someone becomes settled in their sense of self, nor which people are most likely to benefit from medical transition. When making life‑changing decisions, what is the correct balance between keeping options as flexible and open as possible as you move into adulthood, and responding to how you feel right now?

Finally, I know you need more than medical intervention, but services are really stretched, and you are not getting the wider support you need in managing any mental health problems, arranging fertility preservation, getting help with any challenges relating to neurodiversity, or even getting counselling to work through questions and issues you may have. We need to look at all the elements that are needed in a package of care that will help you thrive and fulfil your broader life goals.

The first step for the NHS is to expand capacity, offer wider interventions, upskill the broader workforce, take an individualised, personal approach to care, and put in place the mechanisms to collect the data needed for quality improvement and research.

Expanding capacity at all levels of the system will not only allow for more timely care and space to explore, but also free‑up the specialist services for those who need them most. I know there are many who have waited too long already and will continue to do so, and that like me, colleagues across the NHS are deeply concerned about this. We can’t fix everything overnight, but we must make a start.

I would also like to share some thoughts with all my clinical colleagues. We have to start from the understanding that this group of children and young people are just that; children and young people first and foremost, not individuals solely defined by their gender incongruence or gender‑related distress. We have to cut through the noise and polarisation to recognise that they need the same standards of high‑quality care to meet their needs as any other child or young person. When you talk to these young people and their parents/carers, they want the same things as everyone else: the chance to be heard, respected and believed; to have their questions answered; and to access help and advice. It is only when they have been on very long waiting lists, and sidelined from usual care in local services, that they are forced to do their own research and may come to a single medical answer to their problems.

As experienced clinicians, you are familiar with dealing with complexity in presentation, but for this group of young people expertise has been concentrated in a small group of people, which has served to gatekeep the knowledge. We have heard many clinical staff question their capacity and capability and this has made them nervous about working within this population. I know you just need the appropriate training, support and most importantly the confidence to do what you have been trained to do and treat this population as you would any other young person in distress.

In conducting this Review I have had to make recommendations based on the currently available information. I am very aware that this is a point in time and as new evidence is gathered different insights might emerge. I have recommended a service model that has inbuilt mechanisms to be able to evolve and adapt with the emerging research overseen by appropriate governance structures both within individual NHS organisations and at a national level.

It is not just children and young people with gender‑related distress who are facing emotional and social challenges, but the wider population of adolescents. We can only do our job by being ambitious for all children and young people and prioritising development of services to meet their broader needs.


Dr Hilary Cass, OBE

 

About Raiz Humana

Ser un referente para comunidades educacionales y organizaciones que se ocupan por el bienestar de niños, niñas y adolescentes y sus familias, en cuanto a su necesidad de orientación e información en temáticas de sexualidad, identidad y afectividad.