Improving and expanding services for children and young people experiencing gender incongruence and gender dysphoria
In September 2020, NHS England commissioned an independent and wide-ranging review of gender identity services for children and young people. The Review, which is ongoing, is being led by Dr Hilary Cass, past president of the Royal College of Paediatrics and Child Health. It was established in response to a complex and diverse range of issues including:
1. A significant and sharp rise in referrals
In 2021/22 there were over 5,000 referrals into the Gender Identity Development Service (GIDS) run by the Tavistock and Portman NHS Foundation Trust. This compares to just under 250 referrals in 2011/12.
2. Marked changes in the types of patients being referred which are not well understood
There has been a dramatic change in the case-mix of referrals from predominantly birth-registered males to predominantly birth-registered females presenting with gender incongruence in early teen years. Additionally, a significant number of children are also presenting with neurodiversity and other mental health needs and risky behaviours which requires careful consideration and needs to be better understood.
3. Scarce and inconclusive evidence to support clinical decision making
This has led to a lack of clinical consensus and polarised opinion on what the best model of care for children and young people experiencing gender incongruence and dysphoria should be; and a lack of evidence to support families in making informed decisions about interventions that may have life-long consequences.
4. Long waiting times for initial assessment and significant external scrutiny and challenge surrounding the clinical approach and operational capacity at GIDS
This has contributed to the current service being unable to meet the scale of rising demand.
In February 2022, Dr Cass published an interim report in which she set out initial findings and advice from her Review. She emphasised the need to move away from the current model of a sole provider, and to establish regional services that work to a new clinical model that can better meet the holistic needs of a vulnerable group of children and young people. She began to describe the need for these new services to work as networked centres that connected with other local services including children and young people’s mental health services and primary care to support all a patient’s clinical needs.
Dr Cass has now sent further advice on the core components of this model. You can read the advice in full here.
In summary, she has said:
- ‘Regional centres should be led by experienced providers of tertiary paediatric care to ensure a focus on child health and development, with strong links to mental health services. These will generally be specialist children’s hospitals.
- ‘They should have established academic and education functions to ensure that ongoing research and training is embedded within the service delivery model’.
- ‘The services should have an appropriate multi-professional workforce to enable them to provide an integrated model of care that manages the holistic needs of this population’.
- ‘Staff should maintain a broad clinical perspective to embed the care of children and young people with gender uncertainty within a broader child and adolescent health context’.
Establishing Early Adopter Services
This latest advice means we are now able to start building a more resilient service by expanding provision and enhancing the focus on quality in terms of clinical effectiveness, safety, and patient experience.
Given the urgent requirement to stabilise current service provision for patients, we are taking immediate steps to establish two Early Adopter services. Consistent with Dr Cass’ advice, these services will be led by specialist children’s hospitals and, once established, will take over clinical responsibility for and management of all GIDS patients – including those on the waiting list – as part of a managed transition.
One Early Adopter service will be based in London and will be led by a partnership between Great Ormond Street Hospital and Evelina London Children’s Hospital, with South London and Maudsley NHS Foundation Trust providing specialist CYP mental health support.
A second Early Adopter service will be based in the North West, led by a partnership between Alder Hey Children’s NHS Foundation Trust and the Royal Manchester Children’s Hospital, where both trusts also provide specialist CYP mental health services.
The Tavistock and Portman NHS Foundation Trust and the endocrine teams based at University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust will play a vital role in supporting both Early Adopters as they establish the new services building on their extensive experience of working with this patient group.
A single national transformation programme is being established to oversee a smooth and seamless transition for patients to the new Early Adopter services, including bringing the GIDS contract to a managed close because of these changes. The establishment of the Early Adopter services will happen as quickly as possible, but crucially at a pace that appreciates the complexity of the change, while minimising disruption and any additional anxiety for patients. The aim is for the Early Adopter services to be fully operational by Spring 2023.
The Early Adopter services will be commissioned against an interim service specification which we will publish in draft as soon as possible for the purpose of engagement and consultation.
Commissioning New Regional Services
The establishment of Early Adopter services represents just a first step in commissioning a national network of regional services across the country over the coming years.
The ongoing work of Dr Cass’ review, alongside our experience in establishing the Early Adopter services, will help shape the development of the new model of care, national standards, and a new national service specification against which regional services can be commissioned. We will engage and consult fully on this service specification in due course.
Further consideration will need to be given to the optimal number of regional services, taking into account the need for good geographical distribution as well as the need to build the clinical workforce over time – an initial view is that this may be around seven to eight services but this will be confirmed in due course. These services may take the form of provider collaboratives, but like the Early Adopter services, each regional service will be led by an experienced provider of specialist paediatric care, consistent with Dr Cass’ advice.
As and when the regional services go live, they will take on their share of the national waiting list.
The new services will require investment to deliver an expansion in service provision given the very large increase in referrals and very long waiting times for the initial assessment of children and young people experiencing gender incongruence.
In Dr Cass’ latest advice, she restates the position she set out in her interim report with regards to the use of puberty blockers in children under 16 years of age- that there is insufficient evidence currently available for her to make any firm recommendations around their routine use.
As we move to the new clinical model of care, she has recommended that NHS England gives ‘consideration to the rapid establishment of the necessary research infrastructure to prospectively enrol young people being considered for hormone treatment into a formal research protocol with adequate follow up into adulthood, with a more immediate focus on the questions regarding puberty blockers’.
NHS England supports this recommendation and will now work in collaboration with the National Institute for Health and Care Research to design and commission the necessary research infrastructure. Other countries have taken similar steps to position access to hormone treatments through a formal research protocol in view of the limited research on short-term and long-term outcomes.
Placing the use of puberty blockers in children under 16 years of age in the context of clinical research will have several important benefits:
- Firstly, and most importantly, it will provide a major international contribution to the evidence base in this area. As Dr Cass points out in her letter, ‘Without an established research strategy and infrastructure, the outstanding questions will remain unanswered and the evidence gap will continue to be filled with polarised opinion and conjecture, which does little to help the children and young people, and their families and carers, who need support and information on which to make decisions’.
- Secondly, it will ensure that there is greater transparency for children and their parents / carers around the uncertain clinical benefits and longer-term health impacts surrounding their use.
- Thirdly, it will further strengthen the consent and information sharing process to support informed decision making by young people.
Research programmes of this nature can typically take some time to establish but we will do everything possible to accelerate usual timeframes, learning the lessons from COVID. In the intervening period, patients will continue to be able to access treatment under current NHS protocols. Where a child under 16 is being recommended for puberty blockers, the role of the Multi Professional Review Group (MPRG) which NHS England established to assure all necessary processes, including obtaining child and parental / carer consent, have been correctly followed will be retained. Once the new Early Adopter services are established, these recommendations will be made to the MPRG by new multi-disciplinary teams which will draw in all the appropriate clinical professions to ensure the holistic needs of the child have been fully considered.
The package of measures set out above represent an important milestone as we look to rapidly improve and expand the support offered to children and young people who are questioning their gender identity.
Finally, we wish to acknowledge and thank the collaborative and decisive leadership that has been shown by Alder Hey Children’s NHS Foundation Trust, Guy’s and St Thomas’ NHS Foundation Trust, Great Ormond Street Hospital for Children NHS Foundation Trust, Royal Manchester University NHS Foundation Trust, South London and Maudsley NHS Foundation Trust and the Tavistock and Portman NHS Foundation Trust. There is an absolute focus on ensuring that children and young people receive the very best care possible from the NHS and there is a commitment across all these organisations to continue working in partnership to make this happen.