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Regional model for gender care announced for children and young people

The Tavistock and Portman NHS Foundation Trust’s statement in response to the announcement of a new model and Early Adopter services by NHS England following recommendation from the Cass Review.

Last year, referrals to our Gender Identity Development Service stood at over 3,500. In addition, the referral support service set up by NHS England for GP referrals recorded over 1,500 referrals. This is another doubling in demand for support with gender identity. This level of need cannot and should not be met by a single highly specialist national service. It is crucial that gender-diverse children and young people can access care and support in a timely fashion within a joined-up system.

The announcement by NHS England, about a new model to support young people, which once fully operational, should increase capacity and improve access to care. Dr Cass has recommended new regional centres be led by specialist children’s hospitals. As a first step, NHS England are establishing two new Early Adopter Services – one in London and one in the North West. It is hoped these services will be operational by Spring 2023 to serve all patients across England. Once operational, these services will take over clinical responsibility for all GIDS patients and those on the waiting list, with the current GIDS contract being brought to a managed close.

The London-based service will be formed as a partnership between Great Ormond Street Hospital for Children and Evelina London Children’s Hospital, with specialist mental health support provided by South London and Maudsley NHS Foundation Trust.

The North West-based service will be formed as partnership between Alder Hey Children’s NHS Foundation Trust and Royal Manchester Children’s Hospital, who both provide specialist Children and young people’s mental health services.

The expertise that resides within the current GIDS service and the endocrine services based in Leeds and UCLH will be critical to the successful formation of the new Early Adopter services and achieving a smooth transition for patients. We will work to ensure that our patients are at the heart of what is being developed and, as a Trust, we will do all we can to contribute to the best possible care model for this patient group. GIDS will also have a role in the national transformation programme which will oversee a smooth and seamless transition for patients to the new Early Adopter services.

We appreciate how difficult it must be as a young person or parent facing current long waits for children’s gender services. This package of measures represents significant progress in expanding capacity to ensure that the NHS can deliver a more responsive care for children and young people.

We know from the experience of the last couple of years that changes to care pathways can be unsettling to patients. We will work with the Early Adopter services to ensure that patient care is not interrupted wherever possible. Whether patients are accessing our endocrinology services or are being seen by our psychosocial team, they will be able to continue with their care and accessing the treatments they may require until the new services are operational and a safe transfer has been made. Those currently seeking physical interventions will be able to access these under the current protocol (via the Multi-Professional Review Group for under-16s) until a new research protocol is in place.

We have over 30 years of experience and expertise in this field. We will work closely with our partners and commissioners to ensure a smooth transition to the new model of delivery. Over the last couple of years, our staff in GIDS have worked tirelessly and under intense scrutiny in a difficult climate, delivering not just high-quality patient care during a pandemic, but an entire service transformation programme. We are proud of them and thankful for their unrelenting patient focus and extraordinary efforts. As we move forward, we will ensure the work which has been done informs the final specifications for gender services for young people. We will support our staff as they bring their skills, experience, and unique insights to the design of future services and fulfil their potential in the structures which will be put forward.

NHS England will run a consultation on the new service. We will share details of how you can contribute as soon as we have them.

Answers to common questions

What change will this mean for me as a current patient at GIDS?

There will be no immediate changes or interruption to your current care. The early adopters will be established by Spring 2023 and all parties are committed to achieving a smooth and seamless transfer for all patients, minimising any disruption. Endocrine care will continue under the current protocols.

Will I need to wait for a research protocol to start hormone blockers?

The proposed research is likely to take some time to design and implement. In the meantime, referrals into endocrine services can continue under current arrangements, which includes the need for assurance by the Multi-Professional Review Group (MPRG) in regard to children under 16.

Will the Multi Professional Review Group that reviews referrals for puberty blockers be disbanded?

Until the research protocol is operational the MPRG will continue to review the process followed by GIDS and by the Early Adopters once operational. This will still only apply to patients under the age of 16.

I am / my child is on the waiting list for GIDS; what will happen to my / their referral?

Once established, the new Early Adopter services will take a share of the national waiting list currently held by GIDS. The new services will then begin to review the waiting list to determine what the most appropriate care pathway is for each young person at that point.

What does that mean for my place on the waiting list?

Current waiting list positions will be honoured by the new services.

How do patients get referred into this new children’s gender service?

The changes will not happen until the Spring of 2023. Until that time, new referrals will continue to be made under current arrangements. Once the Early Adopters are established, new referrals and patients on the waiting list for GIDS will be held by one of the Early Adopter services.

How will the Early Adopters operate differently to GIDS?

The Early Adopter services will have a multi-disciplinary team (MDT) of specialist clinicians so that assessment and care planning is delivered in an integrated way. These MDTs will include gender specialists, specialists in paediatric medicine, mental health, autism and neuro-disability so that a young person’s overall health needs are met holistically. There will also be more support offered to local services so that children and young people can receive care more locally where this is clinically appropriate.

Will this change reduce waiting times, and how quickly?

By increasing both the number of providers and clinical capacity within the service, we expect to see waiting lists and waiting times reduce over time once the Early Adopter services are fully up and running by Spring 2023. These are just the first steps of a major transformation programme that will ultimately result in a network of specialist centres of expertise being established in every region of the country which will further increase capacity and bring down wait times over the coming years.

Who can I contact if I want to find out more?

For existing GIDS patients:

GIDS London

Tel: 020 8938 2030/1

GIDS Leeds

Tel: 0113 247 1955

For patients on the GIDS waiting list:

GIDS London

Tel: 020 8938 2030/1

For patients who have been referred by their GP (separate waitlist)

Gender Dysphoria National Referral Support Service

From prospective patients / general public:

NHS England

Telephone: 0300 311 22 33

For questions specific to the Cass Review recommendations, please contact the review.