Dear Sir,

Inquest into the death of Leia Dorothy Pandora Sampson-Grimbly Regulation 28 Response

I am writing on behalf of The Tavistock and Portman NHS Foundation Trust in response to your Report to Prevent Future Deaths made on 25th July 2025, following the conclusion of the inquest touching on the death of Leia Dorothy Pandora Sampson-Grimbly.

At the outset, I would like to reiterate how sorry the Trust was to learn of Leia’s death.

The Trust is grateful to you for raising the matters of concern in your Report which you have outlined relating to the services available to patients who are being treated by or are on the waiting list to be treated by the Gender Identity Clinic (‘GIC’) at the Trust.

The role of the GIC is detailed in the service specifications published by NHS England for Gender Identity Services for Adults (Non-Surgical Interventions). The treatment pathway commissioned under the service specification is as follows:
1. Referral to a specialist Gender Dysphoria Clinic (self-referral; or by primary, secondary or tertiary care).
2. Assessment for gender dysphoria, and diagnosis.
3. Individuals who meet the criteria for diagnosis of gender dysphoria related to gender incongruence are accepted on to the NHS care pathway and an individualised treatment plan is agreed.
4. Therapeutic interventions delivered by the specialist Gender Identity Clinic; and/or referral for interventions with other providers.
5. Ongoing review and monitoring during and after interventions.
6. Conclusion of contact: discharge to primary care.

The service specification states that Gender Dysphoria Clinics assess and diagnose individuals; directly provide some interventions and arrange for referrals to other services, including for medical and surgical treatments.” We are working with NHS

England and other providers to develop innovative ways of reducing the waiting list and providing support to patients while on the waiting list.

The Trust undertook a Mortality Review Report, dated 19.11.24 which was then updated following additional information received from the GP 17.1.25. Leia had been referred to the Tavistock GIDS service in January 2022, in line with referrals at the time this referral was immediately forwarded to the NRSS (the Children’s Gender waiting list) held by Arden & Gem CSU. As such Leia was never a patient in the GIDS. Leia received a letter in February 2024 asking them to attend their GP and request a referral to adult gender services. The GP confirmed this was the last time they had met with Leia. The GP said that they made a referral to the Adult Gender Clinic. There is no record on the Trust electronic patient record of this referral being received by this Trust. A GIC nurse investigated this discrepancy by contacting the GP surgery. From this investigation it was ascertained that the referral for adult gender services was written by the GP but had not been sent over to the Trust’s Service via the electronic referral system. There is evidence on HIE that a referral was made to the Haringey Recovery and Enabling adult mental health team by Leia’s GP in March 2024. The referral was not accepted due to her age at the time, (17yrs) following MDT discussion, advice was given to either refer to Tavistock or to re-referred in August 2024 when Leia would with be 17.5yrs old. There is no further documentation in our system suggesting that she was referred to CAMHS at this Trust.

The Trust has identified there was a gap in care in that the young person was taken off the Arden & GEM child waiting list in February when they were 17 and 1 month. They were then referred to the adult gender clinic when they were 17 and 2 months, however the referral was not received by this Trust as it had not been correctly sent by the GP surgery. The gap in care had not been identified at the time of death and therefore as such it does not seem that it would have an impact on the predictability and preventability of death.

The waiting times for such GIC assessments is currently around 2.5 years, which is broadly in keeping with the national picture, though there is some variation in waiting times. NHS England (NHSE) is the direct commissioner of specialised services for individuals with a diagnosis of gender dysphoria. Prior to 2019/20, seven specialist centres were commissioned in England, based in or near Newcastle, Leeds, Sheffield, Northampton, Nottingham, London and Exeter. Each of the Gender Dysphoria Clinics (GDCs) is operated by a Mental Health NHS Trust and is staffed by a multidisciplinary team to include the wide range of clinical professionals needed to deliver highly individualised care and meet the presenting needs of the whole person (typically and variously: clinical psychologists; specialist physicians; consultant psychiatrists; consultant endocrinologists; clinical nurse specialists; voice and communication therapists; counselling therapists).

The consultant-led services provided by the GDCs when adult patients are referred to them are amongst those intended to commence within 18 weeks of referral. Unfortunately, NHSE has been unable to commission sufficient capacity to meet that expectation because of the lack of specialist clinical staff (recruitment and retention) – against a backdrop of significant increasing demand, reflecting an international trend. Unfortunately, waiting times for a first appointment at a GDC remain very high. The Trust will continue to engage with its commissioners, NHS England, to develop provisions to reduce waiting times where possible.

The Trust is grateful for your careful consideration of this matter, and hope this letter assists in reassuring you, and Leia’s family and friends, that the Trust and the GIC are continually exploring avenues to provide the best possible service to their patients. This includes measures to reduce the length of the waiting list for the GIC, as the priority has always been, and remains, to ensure that patients have prompt access to the service.

Dear Mr Walker,

Thank you for the Regulation 28 report of 25 July 2025 sent to the Department of Health and Social Care about the death of Leia Dorothy Pandora Sampson-Grimbly. I am replying as the Minister with responsibility for Gender Services.

Firstly, I would like to say how saddened I was to read of the circumstances of Leia’s death, and I offer my sincere condolences to her family and loved ones. The circumstances your report describes are deeply concerning and I am grateful to you for bringing these matters to my attention.

The report raises concerns over the length of waiting lists to access a first appointment at a Gender Service.

In preparing this response, my officials have liaised with NHS England to ensure we adequately address your concerns.

NHS England is the direct commissioner of specialised services for children and young people with a diagnosis of gender dysphoria. All specialised services that NHS England commissions are defined by national service specifications. A proposed service specification for the service is currently subject to a process of public consultation. In the interim, the commissioned providers work to an interim service specification that is published.

I understand that Leia was on the waiting list for NHS Children and Young People’s Gender Services until the age of 17 years. This response to HM Coroner’s report, therefore, focuses on NHS England’s efforts to build clinical capacity and reduce waiting times to the NHS Children and Young People’s Gender Services, but it also provides information on commissioning initiatives for NHS adult gender services.

NHS Children and Young People’s Gender Services

From 2023 the national waiting list for Children and Young People’s Gender Services has been held and managed by NHS England on an exceptional basis, through a National Referral Support Service managed by NHS Arden & GEM Commissioning Support Unit.

The Government and NHS England have acknowledged that waiting times, and waiting lists, for children’s gender services are unacceptably high. I acknowledge that this must be difficult for children, young people and their families in this situation and we are determined to change that.

NHS England accepts that the service is consultant-led for the purpose of the Referral to Treatment standard (NHS Constitution) and that consequently the consultant-led treatment of patients referred to the service should start within 18 weeks of referral. However, NHS children’s gender services have been unable to comply with this standard. In recent years there has been a considerable imbalance between an increasing demand for gender services and the ability of the NHS to increase the specialist clinical workforce because of historic recruitment and retention challenges in this field.

The increase in demand for children’s gender services has been exponential: from 51 referrals in 2009 to 2,600 referrals in 2020. In June 2025 there were 5,699 individuals on the waiting list, with a mean average waiting time of 113 weeks.

Although NHS England is the responsible commissioner of specialised services for the population of England only, around 7% of the waiting list held by NHS England is accounted for by children who reside outside of England. This is because their responsible health administration does not commission its own children’s gender service (mainly Wales, Republic of Ireland and British Crown Dependencies).

Until 31 March 2024 there was only one commissioned provider of NHS gender services for children and young people – the Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS Foundation Trust. In 2021 the service was rated as “inadequate’ following a focused inspection by the Care Quality Commission, who highlighted concerns about the absence of clinical risk assessment of the waiting list. By this time, NHS England had commissioned an independent review of how the NHS should respond to children and young people who present with issues of gender incongruence (chaired by ) citing the increasing demand and long waiting times as key drivers for the review.

The GIDS was decommissioned by NHS England in March 2024, in line with the emerging findings and recommendations of the Cass Review.

The final report of the Cass Review was published in April 2024. The Review made a number of recommendations for the reconfiguration of children’s gender services, which NHS England and the Government have accepted.

In August 2024 NHS England published a plan for implementation of the Cass Review recommendations, delivered through an ambitious transformation programme, with clinical oversight by NHS England’s National Medical Director for Specialised Services. NHS England’s focus is on building clinical capacity (and reducing the waiting list) through the

establishment of up to 8 new regional gender services for children and young people by 2026, managed by NHS children’s hospitals, and working to a fundamentally different clinical model to that followed by the former GIDS. This is funded in full by NHS England through an increase in direct investment in children’s gender services from £8m in 2023/24 to £36m in 2025/26. Financial investment will increase further from 2026/27 as new centres are established.

It may assist HM Coroner to know that new clinical capacity cannot be built quickly given the specialist skills that are needed to staff the multi-disciplinary team comprised variously of psychologists, psychiatrists, psychotherapists, paediatricians, social workers, nurses and endocrinologists (not exhaustive). Clinicians require training and experience to build their expertise and competencies. That is why, to support a rapid build of a new clinical workforce, NHS England has commissioned the Academy of Medical Royal Colleges and University College London to design and deliver a professional competency framework and training curriculum by 2026.

Since April 2024 NHS England has established three new NHS centres for children with gender incongruence in the North-West (managed by Alder Hey Children’s Foundation NHS Trust); South-West (managed by University Hospitals Bristol and Weston NHS Foundation Trust); and London (managed by Great Ormond Street Hospital for Children NHS Foundation Trust). A fourth new service will be operational by January 2026 (Cambridge University Hospitals NHS Foundation Trust). By 2026 it is planned that additional centres will be operational in North East and Yorkshire, and the Midlands.

NHS England is supporting the new providers to establish and lead regional integrated networks that comprise the various statutory services that are likely to be involved in the care and support of children who present with gender incongruence, so that there is a more coordinated and joint approach to the care for these children and young people, and their families, including wellbeing support while on the waiting list. This model will also enable and facilitate support to the various health and other statutory professionals across the network who may have infrequent experience of children and young people with gender incongruence.

To support the new providers in focusing their available clinical capacity on new patients from the waiting list, NHS England has also commissioned a separate service at Nottinghamshire Healthcare NHS Foundation Trust from April 2024 to provide psychological and psychosocial support to young people who were receiving endocrine intervention through a shared care arrangement between the former GIDS and one of two commissioned endocrine providers (Leeds Teaching Hospitals NHS Trust and University College London Hospitals NHS Foundation Trust) at the point of closure of GIDS.

Given the scale and pace of change that was necessary from July 2022 when NHS England announced that the GIDS would be brought to a managed closure, no new patients were taken from the national waiting list between April 2023 and October 2024. There was agreement amongst senior clinical leaders that it would not be clinically appropriate to commence the new assessment of children while the GIDS was being decommissioned and before the new commissioned services were operationally ready to begin the process of clinical assessment of new patients (the priority of the new services between April 2024 and

September 2024 was the ongoing care of children transferred to them from the former GIDS). This arrangement therefore inflated the national waiting list and waiting times during this period. However, as of August 2025, all three of the new services are taking patients from the waiting list, and the number of patients being transferred into the services from the waiting list each month is now higher than the number of new referrals each month (a net reduction). The fourth new service is planned to begin accepting new referrals from the waiting list in early 2026.

NHS England has taken a number of measures to identify and address clinical risk, including risk of deterioration in mental health and global functioning of those on the national waiting list. This is important, in view of the evidence that children and young people referred to gender services (and adolescents in particular) have more complex presentations, with greater mental health and psychosocial needs, as well as additional diagnoses of autism and/or attention deficit hyperactivity disorder. The Cass Review described an increase in children and young people presenting with issues around gender identity alongside mental health difficulties.

NHS England established a funded mental health support offer for children and young people who were on the waiting list between April and August 2024 (and who were not already under the care of NHS mental health services). The process for obtaining consent to the referral to mental health services, and the transfer of patient records to the correct local mental health team, was overseen by the National Referral Support Service. The support offer involved a face-to-face assessment by the patient’s local NHS Children and Young People’s Mental Health Team to assess mental health needs and risks; review neurodevelopmental needs, if present; review safeguarding needs; and to allocate or refer to the appropriate service and pathway for further assessment or support. Triage and prioritisation was dependent on clinical needs and risks of the individuals, which recognised the vulnerabilities of this group of children and young people.

More than 2000 children and young people consented to the mental health support offer and were assessed by their local NHS mental health team. This was achieved against the backdrop of NHS mental health services for children and young people managing unprecedented demand, with around 100,000 new referrals each month, nearly 8,000 more than in the same period last year and circa 37,000 more per month than pre-pandemic levels.

Additionally, from September 2024, NHS England ended the ability of GPs to directly refer to children’s gender services. All children and young people who are considered for referral to the national waiting list for children’s gender services must now first be assessed by a local NHS mental health team or NHS paediatrics team. This arrangement ensures that an individual care plan is in place for the child or young person, as clinically indicated, before they are added to the waiting list. Clinical oversight remains with the local NHS team while the child or young person waits to be seen by the gender service. These arrangements are formalised in an ancillary service specification that is published.

I acknowledge that the offer of support to those on the waiting list did not come in time for Leia. According to the information available to NHS England, Leia had left the national waiting list for children’s gender services by April 2024, when the mental health support offer

was initiated. This is because, at the time, young people were necessarily removed from the children’s waiting list from the age of 17 because of the service’s age cut-off of 18 years. Young people removed from the children’s waiting list are advised to discuss with their GP whether a referral to an adult gender clinic is appropriate, and if such a referral is made by the GP, the receiving adult gender clinic will honour the original waiting time from the date of referral to the children’s waiting list as a measure to reduce time on the adult waiting list.

National Review of Adult Gender Services

This response has focused on waiting times to Children and Young People’s Gender Services and NHS England’s efforts to increase clinical capacity in this field. However, it may assist HM Coroner to learn that in April 2024 NHS England took the decision to conduct a review of the operation and delivery of adult Gender Dysphoria Clinics (GDC), in line with the recommendations of the Cass Review and in recognition that waiting times for adult gender services are also unacceptably high.

The review’s terms of reference and key lines of enquiry have been published, and they describe that the review will examine the operating procedures in each service; the appropriateness of the service model for the presenting population; areas of concern, and any action being taken to improve quality. It will identify areas for improvement in relation to service quality, good practice that could be shared with other clinics, and any support that should be made available to services to assist improvement.

The review is led by , Medical Director of Lancashire and South Cumbria Integrated Care Board, and previously NHS England’s North West Regional Medical Director. Following on-site visits to every GDC in England, the report detailing the review’s findings and recommendations will be published in the autumn of 2025. The report will inform NHS England’s work to build a new service specification for the GDCs over 2025/26, which will involve a process of public consultation. In the context of reducing waiting times and waiting lists, NHS England will particularly want to learn the review’s findings and recommendations around productivity and efficiency within each of the GDCs.

Thank you for bringing these concerns to my attention. I would like to, once again, express my condolences to Leia’s family. I hope this response is helpful.