Cass Review – implications for Scotland: findings report

Cass Review Summary

The Cass review was commissioned for an NHS England operational setting, but we recognise it comes from an appraisal of the clinical, governance and scientific perspectives and we have accepted them where we feel they should apply in a Scottish context.

No. 1. Cass Review Recommendation

Given the complexity of this population, these services must operate to the same standards as other services seeing children and young people with complex presentations and/or additional risk factors. There should be a nominated medical practitioner (paediatrician/child psychiatrist) who takes overall clinical responsibility for patient safety within the service.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Individuals presenting to services will often have complex needs and may require tailored approaches to care.
• It is key that a lead senior clinician take overall responsibility for the child or young person’s care; this could either be a psychiatrist or paediatrician.

No. 2. Cass Review Recommendation

Clinicians should apply the assessment framework developed by the Review’s Clinical Expert Group, to ensure children/young people referred to NHS gender services 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. The framework should be kept under review and evolve to reflect emerging evidence.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Each child or young person’s care plan must include a multidimensional assessment of their needs, considering social, family, welfare, psychological as well as physical needs.
• In the Scottish context, the most suitable framework for this is the forthcoming National Standards, to be published by Healthcare Improvement Scotland (HIS) in summer 2024.

No. 3. Cass Review Recommendation

Standard evidence-based psychological and psychopharmacological treatment approaches should be used to support the management of the associated distress and co-occurring conditions. This should include support for parents/carers and siblings as appropriate.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• A wide multidimensional assessment, which considers the child or young person’s life, education, development, mental health and medical conditions in parallel, is essential.

No. 4. Cass Review Recommendation

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.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Recognising the anxiety and questions that a family or young person may have; it is important that they and their families feel they have support to ask questions and seek timely help.
• There needs to be a balance between creating ready access to services and avoiding a restrictive pathway.
• There is evidence that non-binary people felt pressure from gender identity services to do things that they did not want to do, e.g. undergo treatment or change name to access care. Services should be sensitive, attentive and responsive to the needs of those they care for.

No. 5. Cass Review Recommendation

NHS England, working with DHSC should direct the gender clinics to participate in the data linkage study within the lifetime of the current statutory instrument. NHS England’s Research Oversight Board should take responsibility for interpreting the findings of the research.

MDT Response

Not Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• This recommendation refers both to a statutory instrument that it is not relevant in Scotland and a specific situation regarding data sharing between clinics and the Cass Review in NHS England.
• Nevertheless, a Scottish dataset, including clinical data, which aligns with that used by NHS England should be developed.

No. 6. Cass Review Recommendation

The evidence base underpinning medical and non-medical interventions in this clinical area must be improved. Following our earlier recommendation to establish a puberty blocker trial, which has been taken forward by NHS England, we further recommend a full programme of research be established. This should look at the characteristics, interventions and outcomes of every young person presenting to the NHS gender services. The puberty blocker trial should be part of a programme of research which also evaluates outcomes of psychosocial interventions and masculinising/feminising hormones. Consent should routinely be sought for all children and young people for enrolment in a research study with follow-up into adulthood.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• As highlighted in the Cass Review there is inadequate clinical evidence for the use of puberty-suppressing hormones.
• While these treatments might be appropriate for some young people, there is insufficient evidence to know who will benefit and understand the risks.
• A decision to pause the routine clinical provision of puberty-suppressing hormones has been made by NHS clinicians in Scotland, and to engage with NHS England and NIHR around Scottish participation in their forthcoming research study on this subject.
• The call to research is wider than simply a trial of puberty suppressants and there does need to be a wider understanding of the needs and provision of safe and effective treatments for this population.

No. 7. Cass Review Recommendation

Long-standing gender incongruence should be an essential pre-requisite for medical treatment but is only one aspect of deciding whether a medical pathway is the right option for an individual.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• There should be rigorous entry criteria for medical treatment pathways including longstanding gender incongruence, and this should be clearly documented as part of the multidisciplinary team (MDT) assessment process.
• Work is underway in Scotland to ensure this recommendation is met. Discussions between clinicians, children and young people about the potential risks and benefits of treatment options will be informed by an individualised care plan.

No. 8. Cass Review Recommendation

NHS England should review the policy on masculinising/feminising hormones. The option to provide masculinising/feminising hormones from age 16 is available, but the Review would recommend extreme caution. There should be a clear clinical rationale for providing hormones at this stage rather than waiting until an individual reaches 18.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Clinicians in NHS GGC and NHS Lothian have already paused the use of masculinising and feminising hormones for those aged under 18 years in Scotland.
• Further UK-wide research into the use of these hormones in children and young people under 18 years is recommended.

No. 9. Cass Review Recommendation

Every case considered for medical treatment should be discussed at a national MultiDisciplinary Team (MDT) hosted by the National Provider Collaborative replacing the Multi Professional Review Group (MPRG).

MDT Response

Not Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• This recommendation concerns NHS England structures.
• As in NHS England the principle of holistic assessment by an MDT with person-centred approaches forms the bedrock of how clinical services are provided by the NHS in Scotland.
• This recommendation should form part of the service delivery component of services for children and young people.

No. 10. Cass Review Recommendation

All children should be offered fertility counselling and preservation prior to going onto a medical pathway.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Pre-pubertal children are not offered fertility preservation in Scotland in the context of gender identity healthcare, but services will provide these children with information about fertility.
• Young people will only be referred to fertility preservation services in this context once they have reached sexual maturity.

No. 11. Cass Review Recommendation

NHS England and service providers should work to develop the regional multi-site service networks as soon as possible. This could be based on a lead provider model, where NHS England delegates commissioning responsibility to the regional services to subcontract locally to providers in their region.

MDT Response

Not Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• This recommendation pertains to NHS England’s service model.
• There are potential opportunities for the NHS in Scotland to expand its capacity through a distributed service model.

No. 12. Cass Review Recommendation

The National Provider Collaborative should be established without delay.

MDT Response

Not Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• The National Provider Collaborative is specific to NHS England. The service structure and clinical pathways in Scotland will need to reflect NHS arrangements in Scotland.

No. 13. Cass Review Recommendation

To increase the available workforce and maintain a broader clinical lens, joint contracts should be utilised to support staff to work across the network and across different services.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• While contractual arrangements for NHS England staff are different from those in Scotland, there is a need for adequate staff who must be able to work flexibly and collaboratively across wider services.
• Services are currently experiencing workforce recruitment and retention challenges which makes this currently somewhat aspirational. However, a more distributed model of delivery may help deliver this.

No. 14. Cass Review Recommendation

NHS England, through its Workforce Training and Education function, must ensure requirements for this service area are built into overall workforce planning for adolescent services.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Work to map training resources and identify gaps has started alongside discussions between NHS Education for Scotland (NES) and NHS England. A report identifying available resources/training and gaps is expected by the end of 2024.
• See response to recommendation 15 also.

No. 15. Cass Review Recommendation

NHS England should commission a lead organisation to establish a consortium of relevant professional bodies to:

• develop a competency framework
• identify gaps in professional training programmes
• develop a suite of training materials to supplement professional competencies, appropriate to their clinical field and level.
  • This should include a module on the holistic assessment framework and approach to formulation and care planning.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• NES is working on a commission from the Scottish Government to develop a Transgender Care Knowledge and Skills Framework and explore resources and opportunities for training for NHS staff in Scotland in relation to adult services.
• The Knowledge and Skills Framework for adult services is expected to be completed in summer 2024 and a specific piece of work on young people’s services developed thereafter.

No. 16. Cass Review Recommendation

The National Provider Collaborative should coordinate development of evidence-based information and resources for young people, parents and carers. Consideration should be given as to whether this should be a centrally hosted NHS online resource.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• While the Scottish NHS context is different, the Scottish Government is currently scoping work to develop additional public-facing resources on the NHS Inform website and Healthcare Improvement Scotland’s Right Decision Service.

No. 17. Cass Review Recommendation

A core national data set should be defined for both specialist and designated local specialist services.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• A core national data set should be defined for both specialist and designated local specialist services and this should be done at a UK-wide level.
• Agreeing consensus should not hold back data for quality assurance and improvement purposes and should align with any quality indicators which might be used for service evaluation and improvement purposes.

No. 18. Cass Review Recommendation

The national infrastructure should be put in place to manage data collection and audit and this should be used to drive continuous quality improvement and research in an active learning environment.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• There is a commitment to improve data collection for gender identity healthcare in Scotland and the Scottish Government has already been clear to all Health Boards with gender identity clinics that they are expected to support work to improve data collection.
• Public Health Scotland (PHS) has been commissioned by the Scottish Government to develop a quarterly, aggregate data collection for NHS GIC waiting times.

No. 19. Cass Review Recommendation

NHS England and the National Institute for Health and Care Research (NIHR) should ensure that the academic and administrative infrastructure to support a programme of clinically-based research is embedded into the regional centres.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• The NHS in Scotland is engaging actively with NIHR and NHS England regarding participation in their forthcoming research study on puberty-suppressing hormones.
• The Scottish Government has already awarded a grant to the University of Glasgow to administer a programme of research into the long-term outcomes of people accessing gender identity healthcare.

No. 20. Cass Review Recommendation

A unified research strategy should be established across the Regional Centres, co-ordinated through the National Provider Collaborative and the Research Oversight Group, so that all data collected are utilised to best effect and for sufficient numbers of individuals to be meaningful.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• These objectives in a specialist and low volume service such as gender identity healthcare in children and young people are best achieved via a four nations approach.
• A UK wide collaboration on addressing the research challenges should be progressed. The Chief Scientists Office (CSO) in Scotland has indicated a willingness to cooperate on projects of national relevance.

No. 21. Cass Review Recommendation

To ensure that services are operating to the highest standards of evidence the National Institute for Health and Care Research (NIHR) should commission a living systematic review to inform the evolving clinical approach.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• HIS conducted a rapid evidence review in July 2023.
• A national current and systematic review of the available best evidence should be regularly updated to reflect emerging evidence and best practice.

No. 22. Cass Review Recommendation

Within each regional network, a separate pathway should be established for pre-pubertal children and their families. Providers should ensure that pre-pubertal children and their parents/carers are prioritised for early discussion with a professional with relevant experience.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• As outlined in relation to recommendation 12, services for initial assessment should be as local as practical.
• In Scotland the provision of specialist services for children and young people must address the needs of the pre-pubertal population and this would form part of a regional specialist service.
• Consideration will need to be given nationally to the workforce and service capacity to implement these recommendations.

No. 23. Cass Review Recommendation

NHS England should establish follow-through services for 17-25-year-olds at each of the Regional Centres, 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.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Services in Scotland should review current transfer arrangements to ensure continuity of care and support over this potentially vulnerable period.
• This should form part of any children and young people’s service.

No. 24. Cass Review Recommendation

Given that the changing demographic presenting to children and young people’s services is reflected in a change of presentations to adult services, NHS England should consider bringing forward any planned update of the adult service specification and review the model of care and operating procedures.

MDT Response

Partially Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• There needs to be data collection to better understand the needs of this group that extends into transfer to adult services.
• The Scottish Government has commissioned an external provider to evaluate the impact of Scottish Government funding to Health Boards to improve young people’s and adults’ gender identity healthcare services.

No. 25. Cass Review Recommendation

NHS England should ensure there is provision for people considering detransition, recognising that they may not wish to reengage with the services whose care they were previously under.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• A person’s reasons for stopping medical care or seeking its reversal will be highly personal and may be complex and they should be appropriately supported by their NHS clinical team to do so.
• Processes should also be in place to facilitate someone who is stopping medical care or seeking its reversal being referred to another Gender Identity Clinic (GIC) for support if they do not wish to reengage with the service whose care they were previously under.

No. 26. Cass Review Recommendation

The Department of Health and Social Care and NHS England should consider the implications of private healthcare on any future requests to the NHS for treatment, monitoring and/or involvement in research. This needs to be clearly communicated to patients and private providers.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Private Healthcare in Scotland is regulated by HIS who have already done work in this area, recognising the risks posed by online and international private practice add further complexities to this challenge.
• No clinician should prescribe outside their competence, nor should GPs be expected to enter a shared care arrangement with a private provider, particularly if that private provider is acting outside NHS guidance.

No. 27. Cass Review Recommendation

The Department of Health and Social Care should work with the General Pharmaceutical Council to define the dispensing responsibilities of pharmacists of private prescriptions and consider other statutory solutions that would prevent inappropriate overseas prescribing.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Since the publication of the Cass Review, the UK DHSC has made a temporary Order, having effect for three months, which prevents the sale or supply of GnRH analogues in particular circumstances, and specifically private prescriptions from approved European countries. This applies in Scotland.

No. 28. Cass Review Recommendation

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 and research implications.

MDT Response

Not Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• There are differences between the NHS number in England and the Community Health Index (CHI) in Scotland.
• At present the CHI number contains a sex code which represents the individual’s sex at birth (male and female). Currently trans people can request that their CHI number is updated by asking their GP practice to update their gender.
• The issue with changing NHS England numbers is not applicable in Scotland as when a CHI number is changed, there remains a link between the old and new CHI in the patient’s records.

No. 29. Cass Review Recommendation

NHS England should develop an implementation plan with clear milestones towards the future clinical and service model. This should have board level oversight and be developed collaboratively with those responsible for the health of children and young people more generally to support greater integration to meet the wide-ranging needs of complex adolescents.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• There should be an implementation plan with clear milestones for any future and clinical service model, and this needs to be developed collaboratively across clinical disciplines, as well as with children and young people themselves.
• Work to commission and design a regional service for children and young people should begin immediately and in parallel to address the needs of those currently on waiting lists.

No. 30. Cass Review Recommendation

NHS England should establish robust and comprehensive contract management and audit processes and requirements around the collection of data for the provision of these services. These should be adhered to by the providers responsible for delivering these services for children and young people.

MDT Response

Not Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• While this recommendation covers NHS England contract management systems, these data gaps exist in Scotland.
• PHS has been commissioned by the Scottish Government to develop a quarterly, aggregate data collection for NHS GIC waiting times.

No. 31. Cass Review Recommendation

Professional bodies must come together to provide leadership and guidance on the clinical management of this population taking account of the findings of this report.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• Clinicians must have the support and guidance of national professional leadership bodies and regulators. Ideally, this should be done collaboratively to support multiagency working in practice.
• The implications of this recommendation are for UK wide bodies such as the Medical Royal Colleges, the Royal College of Nursing (RCN), the Royal Pharmaceutical Society and others to consider in terms of developing support and guidance based on evidence-based approaches.

No. 32. Cass Review Recommendation

Wider guidance applicable to all NHS services should be developed to support providers and commissioners to ensure that innovation is encouraged but that there is appropriate scrutiny and clinical governance to avoid incremental creep of practice in the absence of evidence.

MDT Response

Applicable to Scotland

Summary of the MDT Team’s Comments on Scottish Context

• HIS has been commissioned by the Scottish Government to produce national standards for young people’s and adults’ services.
• Other workstreams like the training scoping exercise being undertaken by NES will also support this.