NHS England’s updates today gave much welcomed clarity on the current and future provision of youth gender health services, but we remain concerned about the ever-growing waiting times.
What has NHSE said?
“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. It is now anticipated that the early stages of service provision at the Southern Hub will begin in autumn this year (2023) – with the Northern Hub 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.”
What does this mean?
The past 10 months have left young people and families distressed about their future or continued care, following the premature announcement of the closure of GIDS in “Spring 2023” to be replaced by two Phase 1 services, or Hubs. This has clearly not happened.
NHSE’s update clarifies that:
- GIDS will remain open into 2024, continuing to provide care to current patients
- The Southern Hub of new services will open in Autumn 2023, seeing patients from the waiting list
- The Northern Hub of new services will open in April 2024
- Additional support will be provided for people on the 3+ year waiting list (via referrals to local support and online resources) in June 2023
- The interim service specification (how the new Hubs will run), following last year’s public consultation, will be released at the end of May 2023
Kai O’Doherty, Head of Policy at Mermaids, said: “Mermaids welcomes clarity from NHS England on the current and future gender healthcare of young people in England, including the continued care for current patients at GIDS, and future services opening late 2023 and 2024.
“The growth of the 3+ year waiting list remains a core concern for the young people we work with, however, and it is not good enough that no one will be taken off this list until later this year. Trans young people deserve better.”
What happens next?
In addition to the new services opening, and an interim specification being finalised, the Cass Review’s work is continuing. This includes a set of research work they commissioned, and ultimately Dr Cass’ final report. This report will inform the new services, and the future Hubs planned in the future.