Cass Review – Implications for Scotland - letter from Chief Medical Officer Professor Sir Gregor Smith

Dear Convener

Cass Review – Implications for Scotland 

I enclose a copy of the report I commissioned to consider the recommendations from the Independent Review of Gender Identity Services for Children and Young People undertaken by Dr Hilary Cass for NHS England. This report provides advice on their applicability and implications for clinical services in Scotland. I would like to thank the multidisciplinary clinical team who led on this work and prepared this report.

At the heart of the considerations in this report are the clinical principles of person-centred care for vulnerable individuals with complex problems and the challenges of evidence-based clinical practice in areas of uncertainty. I thought it would be helpful to pull out some key themes from the Report.

We believe we need to expand capacity of the gender identity service for children and young people in Scotland through a distributed service model, based in paediatric services and with strong links between secondary and specialist services. 

The service model in Scotland should be developed in the same way as other specialist services for children and young people. Service planning mechanisms in the NHS in Scotland should assess and make recommendations to Health Board Chief Executives on service and staffing models. Applying the principle "as local as possible and as national as necessary” to these services, as with other NHS service planning, will help ensure that the best care can usually be delivered close to home by local universal and specialist services with prompt access to expert input where necessary.

A key consideration in governance is the need for a senior clinician to take responsibility for the care of an individual in line with standard best practice for specialist services. This individual would be expected to take a lead role in multidisciplinary (MDT) discussions and in the coordination of the care, governance and safety of the service. To achieve this model requires a combination of service planning, national workforce planning, national standards, quality indicators and assurance across a network of services to facilitate ethical oversight, MDT discussion, staff training and professional development, data collection, audit and quality improvement. Aligned with this, there should be professional networks for peer review, support and governance.

We recommend that access to services should be through referral from a General Practitioner after an initial assessment, as is the case for a referral to any other child or adolescent specialist service. Physical, social and psychological needs should all be addressed in tandem, in a single setting such as a combined MDT clinic. After initial multifaceted MDT assessment to address medical, social, psychological and safeguarding needs, including any possible pharmacological measures, an individualised care plan should be agreed with the child or young person and/or their family as appropriate. Follow-up support and needs can then be delivered locally to provide ongoing support closer to home.

Our recommendations have implications for the capacity currently available and this will need to be addressed and resourced. Much of the provision of this care should be normalised within the existing paediatric services with existing staff expertise (e.g. in neurodiversity, speech and language therapy, safeguarding etc.) supplemented by training and specialist staff.

The Cass Review highlighted that the evidence for prescribing gonadotrophin releasing hormone (GnRH) analogue to suppress puberty is inadequate and the risk of short- or long-term harm remains uncertain. Since publication of the Cass Report, the UK Government introduced emergency restrictions on the use of GnRH analogues as part of treating gender dysphoria in children and young people under 18 years of age. (https://www.gov.uk/government/news/new-restrictions-on-puberty-blockers.)

We support the recommendation for rigorous clinical trials and have engaged with the Chief Scientist’s Office (CSO) and with colleagues in the National Institute for Health and Care Research (NIHR) and NHS England about Scotland’s participation in a multicentre trial of puberty-blocking hormones. Developing a better understanding of the needs of this group, their vulnerabilities and the benefits (or harms) of any treatment plans can be helped by careful data collection and follow up.  This needs to be built into the infrastructure of service development for quality and assurance.

Clinicians in NHS GGC and NHS Lothian also identified concerns about the use of gender-affirming hormones in those under 18 years of age due to concern around the short- and long-term use of these medicines in this age group.  For this reason, they have paused the use of these medicines in those aged under 18 years in Scotland. There should be caution and a clear rationale for providing gender-affirming hormones for individuals aged under 18 years as part of a shared decision-making conversation. Further UK-wide research should evaluate the use of gender-affirming hormones in young people aged under 18 years.

Clinicians in the current service that the team spoke to expressed the need to demystify and destigmatise conversations on difficult topics in trusted and safe spaces to avoid the need for children and young people to turn to social media for answers. We agree about the need to create the confidence for conversations in non-clinical areas for young people to open up about difficult subjects (such as body image, thoughts of self-harm, gender etc) and allow them to feel heard and understood. Education also has a key role and that local multi-agency Children’s Services Plans, and individual child plans, provide a framework for ensuring that children and young people and their families have access to appropriate supports.

Finally, in making the transition between existing service provision and newer distributed models, there needs to be some care to maintain service continuity and address the current capacity and demand challenges. 

I hope you find the content of the report helpful. I am sure you share my concern to ensure that the applicable learning from the Cass Review is used to strengthen services for children and young people experiencing gender incongruence and gender dysphoria in Scotland better.

Yours sincerely

Professor Sir Gregor Smith      

Chief Medical Officer for Scotland