NHS England’s Response to the Final Report of the Independent Review of Gender Identity Services for Children and Young People

The final report from the independent review of gender identity services for children and young people was published on 10 April 2024. NHS England has sent the following response to Dr Hilary Cass who led this four year review.

To:

Dr Hilary Cass, Chair, Independent Review of Gender Identity Services for Children and Young People

Dear Dr. Cass,

We would like to thank you and your team for your comprehensive work on this important review into how the NHS can better support children and young people who present with issues of gender incongruence, and their families.

Your expert advice and guidance since 2020 has been invaluable in helping the NHS introduce a fundamentally different model of care and to expand service provision for this vulnerable group of children and young people. Since receiving your interim report and advice in 2022, the NHS has made considerable progress:

• carefully bringing about the managed closure of the Gender Identity Development Service at the Tavistock and Portman NHS Foundation Trust on 31 March 2024
• establishing two new children and young people’s gender services- the first of up to eight regional centres, based within specialist children’s hospitals, to be commissioned over the next two years. The new services based in the North West (a partnership between Alder Hey Children’s and Royal Manchester Children’s Hospital) and London (a partnership between Great Ormond Street Hospital, Evelina London and South London & Maudsley NHS Foundation Trust) opened on 1^st April 2024
• setting a new interim service specification, following extensive public consultation and engagement, which underpins the operation of the new specialist children and young people’s gender services. This service specification reflects the fundamentally different approach to the assessment, diagnosis and treatment of children and young people presenting with gender incongruence your review has described
• publishing, following full public consultation and engagement, a new evidence based clinical policy on puberty supressing hormones (also called puberty blockers) that makes clear access is no longer routinely available as part of the NHS children and young people’s gender service
• establishing a new, national Children and Young People’s Gender Dysphoria Research Oversight Board, chaired by Professor Sir Simon Wessely, to support the wider research into children’s gender services highlighted by your review. Sir Simon’s appointment reflects the commitment of the most senior leaders in the NHS to high quality, evidence-based care for children and young people experiencing gender incongruence
• putting in place enhanced mental health support for all children and young people under the age of 18 years on the waiting list, or who are awaiting their first appointment with the new services

Next Steps

We will set out a full implementation plan, following full consideration of your final report, in due course, and this will include the detail and structure of our approach. In the meantime, weare able to confirm on behalf of NHS England the following immediate priorities as we continue to build a new service configuration with increased capacity and that works to an evidence-based model of care:

1. NHS England will continue to fully support the newly opened children and young people’s gender services based in London and the Northwest as they operationalise and expand their new services. Helping them to overcome challenges around staff recruitment will be a top priority as this will determine the pace at which they will be able to see new patients from the waiting list in addition to supporting the care of all those patients who have been transferred as a result of the closure of the Tavistock GIDS.
2. NHS England will do everything possible to accelerate its programme of work to bring on board additional regional service providers in line with your interim advice to mobilise regional centres led by experienced children’s hospitals. We are supporting Bristol Royal Hospital for Children (part of University Hospitals Bristol and Weston NHS Foundation Trust) to develop a mobilisation plan that describes how a new service will open in the autumn this year. In addition, paediatric specialist hospital Trusts across the country are working with us to explore the possibility of hosting additional Children and Young People’s Gender Services.
3. The clinical approach set out in our published interim service specification remains consistent with the findings and recommendations of your review and we will continue to apply this as we look to bring on board additional regional centres. As we look to develop a final version of this service specification, we will particularly strengthen the description of the infrastructure that will be needed for the new services to operate within regional networks to ensure the specialist regional centres are connected with a matrix of local secondary care paediatric services, children and young people’s mental health services, primary care, and school nursing. We would expect to launch a public consultation on any revisions to the service specification during the course of 24/25 and to provide Integrated Care Boards with the guidance and support they will need to build the local services.
4. NHS England will publish a separate, but related service specification by June 2024 that defines access into the new children and young people’s gender services. We are currently considering the responses during our public consultation that closed in March. As part of this, we will consider relevant findings and recommendations in your final report, including the importance you attach to ensuring all parents have access to support in understanding the importance on keeping options open and the risks of enabling a premature social transition. We also note your support for our consultation proposal to only allow referrals into the specialist services from secondary care providers which would bring an end to direct referrals from primary care.
5. NHS England will commission the required professional training curriculum and competencies framework, not just for staff working in the new gender services but also for clinicians working in secondary care, primary and community care.
6. NHS England will review the use of gender affirming hormones through a process of updated evidence review and public consultation, similar to the rigorous process that was followed to review the use of puberty suppressing hormones. In the meantime, you have made clear that the new providers should be ‘extremely cautious’ when considering whether to refer young people under 18 years for consideration of hormone intervention. In order to support the providers in following your advice we have established a national multi-disciplinary team (MDT) that will review and need to agree all recommendations for hormone intervention, and we are pleased to confirm that Professor Judith Ellis has agreed to chair this MDT on an interim basis while a permanent chair is appointed. The first meeting of this new national MDT will take place later this month.
7. NHS England has already announced that it is bringing forward its review of the adult service specifications, and we have written to the Chief Executives of the organisations that host the GDCs to inform them that this will be undertaken in the context of a broader, systemic review of the operation and delivery of the GDCs. NHS England will provide more detail very soon, but we envisage it will be informed by the deployment of external quality improvement experts into the services. In view of your advice about the need for caution in the initiation of medical interventions for young people under 18 years of age, our letter instructs the adult gender clinics to implement a pause on offering first appointments to young people below their 18th birthday. This letter also makes clear that NHS England expects full cooperation from the GDCs in the delivery of the data linkage study, on which we have corresponded separately.

We are aware that children, young people and their parents and carers have been distressed by delays in accessing services. The transformation and expansion of the service will take time to fully deliver, and the pace of progress will continue to be impacted by staffing challenges. However, NHS England will continue to work with the NHS and wider system partners to drive change as quickly as possible whilst also ensuring appropriate engagement and consultation.

Can we once again thank you and your team for stepping up to lead such a complex review. Your final report will not just shape the future of healthcare in this country for children and young people experiencing gender distress but will be of major international importance and significance.

John Stewart, National Director, Specialised Commissioning, NHS England

Professor James Palmer, Medical Director, Specialised Commissioning, NHS England