Latest update: June 2023
Today (Friday 9 June) NHS England has published an interim service specification for specialist gender incongruence services for children and young people to support Phase 1 providers in developing their new services. The public consultation on this draft interim service specification ran on the NHS England website for 45 days from 20 October to 4 December 2022. It received 5,183 responses in total. We would like to sincerely thank all those individuals and organisations who took the time to submit responses to this consultation. Read more about the consultation feedback and NHS England’s response.
We have previously made clear, including the draft interim service specification we consulted on, the intention that the NHS will only commission puberty supressing hormones as part of clinical research. This approach follows advice from Dr Hilary Cass’ Independent Review highlighting the significant uncertainties surrounding the use of hormone treatments.
We are now going out to targeted stakeholder testing on an interim clinical commissioning policy proposing that, outside of a research setting, puberty suppressing hormones should not be routinely commissioned for children and adolescents who have gender incongruence/dysphoria.
The purpose of the clinical policy is to formalise this commissioning approach and ensure there is clarity on the position by the time the new service providers begin seeing patients in the context of the new and final interim service specification. The interim service specification and the clinical policy, once finalised, come together to define the overall commissioned service.
NHS England has established a new national Children and Young People’s Gender Dysphoria Research Oversight Board which has now approved the development of a study into the impact of puberty suppressing hormones (‘puberty blockers’) on gender dysphoria in children and young people with early-onset gender dysphoria. More information on the Board and the study can be found in the consultation report.
Updated: 11 May 2023
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 expert 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 international 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 all contributed to the service provided by the Tavistock and Portman NHS Trust being unable to meet the scale of rising demand and provide the level of appropriate care.
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.
In July 2022, Dr Cass sent further advice on the core components of this model. You can read the advice in full here.
In summary, she 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 Phase 1 service providers
Following the further advice Dr Cass’ provided in July 2022, NHS England set out plans for how it would start building a more resilient service by expanding provision and enhancing the focus on quality in terms of clinical effectiveness, safety, and patient experience. These plans were welcomed and supported by the Tavistock and Portman NHS Foundation Trust.
The first phase in these plans is to establish two new nationally networked services which, consistent with Dr Cass’ advice, will be led by specialist children’s hospitals.
These Phase 1 service providers (previously referred to as Early Adopter Services), will take over clinical responsibility for seeing children and young people on the national waiting list as well as providing continuity of care for the GIDS open caseload at the point of transfer. The Tavistock GIDS service itself will be decommissioned as part of a managed transition of the service to the new Phase 1 service providers.
One service – The Southern Hub – is being formed through a partnership between Great Ormond Street Hospital, Evelina London Children’s Hospital (part of Guy’s and St Thomas’ NHS Foundation Trust) and South London and Maudsley NHS Foundation Trust.
The other service – The Northern Hub – is being formed through a partnership between Alder Hey Children’s NHS Foundation Trust and the Royal Manchester Children’s Hospital (part of Manchester University NHS Foundation Trust).
These new services will be commissioned against a new interim service specification. A final version of the interim service specification will be published later in May 2023. This follows on from a period of formal public consultation on a draft specification which generated over 5,000 responses which have had to be carefully considered.
A single national transformation programme has been overseeing all aspects of the work to establish and commission the new services. The initial ambition was for the new services to commence in spring 2023. However, the complexity of the programme, including the need to design, commission and implement a new service model rather than simply transfer the existing service model across to the new providers, as well as the need to recruit and train a new clinical workforce has required revisions to the timetable. The Southern Hub will start seeing patients as soon as possible, with full-service mobilisation by April 2024. The Northern Hub will also be mobilising by April 2024.
During 2023/24 the GIDS at Tavistock will focus on providing continuity of care for their open caseload of around 1,000 patients. Continuing workforce capacity constraints within the GIDS, combined with the need to provide ongoing care for the large open caseload means that the Tavistock is currently not offering any new first assessment appointments. This will be kept under review but may remain the position until the Hubs begin seeing new patients. While this situation may be frustrating, particularly for young people who are towards the top of the waiting list, this is a temporary arrangement. The hubs will contact patients ahead of the services opening and as soon as practical, with offers of appointment dates.
In the meantime, the GIDS team will continue to work with all partners to consider how best to support patients whilst they wait to be assessed. Additionally, NHS England has commissioned new on-line support resources and materials for families of children and young people with gender incongruence and for professionals, and these will be made available in June.
To support the transition of service provision to the new providers, responsibility for managing the GIDS waiting list has now transferred completely from the Tavistock to NHS England, who now holds a single national waiting list from which the new providers will see children and young people. NHS Arden and GEM Commissioning Support Unit (CSU) is supporting NHS England in managing the national waiting list and has been supporting the Tavistock GIDS in managing the waiting list since August 2021. With a single national waiting list in place, NHS England will now write to all children and young people to confirm that we have their referral information, asking them to update this information where needed and to let them know what they can expect to happen next.
Placing the management of the waiting list with the CSU, has a number of advantages, including the ability to transfer children and young people from the waiting list to new providers in a managed way as the new services initially begin seeing patients and then as they ramp up capacity. The CSU will work with children, young people and their families to ensure that the information held is up to date to prevent delays in starting assessments.
A single waiting list has also enabled NHS England to begin to directly address some of the historical challenges in the pathway that have delayed or prevented children and young people progressing through a clinical pathway, such as the cohort of young adults aged 17 and over for whom a transfer to adult gender dysphoria services or to alternative local services has not happened. NHS England has also directly commissioned a specially convened multi-disciplinary team of children and young people’s mental health professionals and gender dysphoria specialists to jointly review referral information held in individual referral notes to identify cases where children or young people may benefit from additional local support while on the waiting list. In such cases the MDT is contacting GPs and local professionals to provide advice on appropriate sources of support.
Commissioning new regional services
The establishment of Phase 1 Service Providers represents the first step in commissioning a network of regional services across the country over the coming years. It remains NHS England’s view that up to 7 or 8 regional services may be required and this will be kept under consideration.
Commissioning the new network of regional services will be informed by the final report and recommendations of Dr Cass’ review, which is expected later this year, as well as experience and learning from the Phase 1 Service Providers. The process of developing, engaging and consulting on a final (rather than interim) service specification will therefore follow the conclusion of the Cass Review.
Notwithstanding this timetable, Bristol Royal Hospital for Children (part of University Hospitals Bristol and Weston NHS Foundation Trust), following Board approval, has recently agreed to enter into a partnership with NHS England to work with Phase 1 providers to explore the viability of establishing a service based in the South West.
NHS England recognises that all 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.
Driving further research and embedding continuous quality improvement
In her July 2022 letter, Dr Cass emphasised the importance of embedding research into the clinical practice of the new services given the substantial gaps that exist in the evidence base. She also urged NHS England to give rapid consideration as to how it could establish ‘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’.
Establishment of a Research Oversight Board
To help co-ordinate the response to these recommendations, a new national Children and Young People’s Gender Dysphoria Research Oversight Board has now been established, chaired by Professor Sir Simon Wessely, a non-executive director of NHS England’s board. 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 dysphoria.
The oversight board includes representation from the Royal College of Paediatric and Child Health (RCPCH), key research funders including the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), other academic experts, clinicians representing the Phase 1 Service Providers and Dr Hilary Cass.
The oversight board will deliver its work with the support of three sub-groups, which will focus on:
Research: Ensuring national and international research findings continue to inform clinical care in England, working with a range of stakeholders to identify and articulate remaining evidence gaps impacting on clinical care and treatment decisions, and promoting and collaborating in new research that will help close those gaps, ensuring research expertise, training and supporting infrastructure is in place in all centres.
Quality improvement: Creating a culture of continuous quality improvement, building a quality improvement network across commissioned providers and embedding a collaborative quality improvement programme (including the development of shared standards and operating procedures) as new services are established.
Data: Determining the standardised information to be collected by children and young people’s gender services to audit against agreed standards, monitor outcomes, support research, learn more about the epidemiology of the patient population, and help inform both current and future assessment and care.
For those children, young people, parents and carers who have been waiting to secure advice and support, and those considering seeking referral, the distress that can be caused by gender incongruence is fully recognised by NHS England and there is a resolute commitment to seek to provide excellent evidence-based NHS services for the future.
The transformation and expansion in service provision that is underway will not happen overnight and this means that many young people will need to consider whether they may be eligible to seek access to adult care in the Gender Identity Clinics (GIC). Young people who are aged 17 and over may be referred into adult services or have their existing referrals into the children’s service transferred to an adult GIC. Time on the waiting list for the children’s service will be fully counted at the point a referral is transferred to adult services.
For both the child and adult services, delivering care in a timely and compassionate way will need clinical staff of many different disciplines to come forward and take up the training opportunities now available. In this way the ambition of the NHS for gender identity care can be realised.