Two young people wearing rainbow bracelets hold hands outside in the sunshine.

Provision of care for children and young people when accessing specialist gender dysphoria services

Summary

The national investigation

Background

This investigation explores the care of patients who present to child and adolescent mental health services (CAMHS) with questions about their gender identity and are referred to specialised gender dysphoria services.

Gender dysphoria is a sense of unease, distress or discomfort that a person may have because of a mismatch between their biological sex and their gender identity. For example, a child who is registered as male at birth might feel or say that they are a girl, or feel that neither ‘boy’ nor ‘girl’ are the right word to describe how they feel about themselves. Gender dysphoria is not identified as a mental illness by the NHS, but some people may develop mental health problems because of gender dysphoria.

As an example, which is referred to as ‘the reference event’, the investigation reviewed the care of a young person who was questioning their gender identity. This investigation’s findings, safety recommendations and safety observations are aimed at helping to further direct ongoing national work to improve care across the NHS for children and young people who may be waiting to access gender dysphoria services.

The investigation of the reference event shows the complex range of local services that may provide support to patients waiting to access specialised gender dysphoria services. This may also be the case in other specialist areas of mental health such as learning disabilities or eating disorder services.

The reference event

HSIB identified a patient safety incident involving an 18 year old transgender man. The Patient had been referred to CAMHS at 15 years old with concerns about his mental health and gender identity. At 16 years old, the Patient was referred to the Gender Identity Development Service (GIDS).

At 17 and a half years old, the Patient was advised by the GIDS that he would not be seen within GIDS before he turned 18 years old. His referral was then transferred to the waiting list of an adult gender dysphoria clinic (GDC), where his previous waiting time with the GIDS was accounted for. However, the Patient was told that this would still incur a further 22 month wait before he could access specialist gender dysphoria services.

The Patient continued to receive care from CAMHS beyond his 18th birthday while he waited to access the GDC, during which time expressed frustration at the waiting time to access specialist gender dysphoria services. The Patient sadly died by suspected suicide before his 19th birthday.

The national investigation

HSIB was notified of a patient safety incident relating to the waiting times and support available for patients accessing specialised gender dysphoria services. The notification was made by the Trust, which was concerned about its capacity and ability to care for patients waiting to access specialised services.

At the time of the investigation there was a 24-month wait to access the GIDS, and longer waits to access adult GDCs. The number of patients seen by the GIDS had increased year on year from 77 patients in 2009/10 to 2,383 patients in 2020/21.

The investigation gathered a range of evidence from the Patient’s family, the Trust involved in the reference event, the Patient’s GP, local voluntary and charitable sector (VCS) organisations, the GIDS, the GDC, and national stakeholders.

The investigation was carried out between June and September 2021 so that the initial findings could quickly be made available to inform rapidly progressing national work by:

  • NHS England and NHS Improvement
  • the independent review of gender identity services for children and young people (the Cass Review) which aims to improve gender dysphoria services for children and young people.

Findings

  • There has been a significant increase in the number of patients wishing to access specialised children and young people’s gender dysphoria services.
  • There is significant national work underway to assist in improving care for children and young people waiting to access specialised gender dysphoria services.
  • Child and adolescent mental health services, and other non-specialised services, have been required to provide care to patients and ‘hold the risk’ for patient care while patients wait to access specialised gender dysphoria services.
  • There is a lack of capacity, capability, and specialist skills within non-specialised services to provide support to patients who have specific gender identity concerns. Gender dysphoria services are highly specialised and require specialist professional expertise.
  • There is reliance on local voluntary and charitable sector organisations to supplement knowledge and expertise in caring for patients with gender identity concerns before they access specialised services.
  • There are barriers to information sharing between networks of NHS and non-NHS organisations that may be involved in the care pathway for children and young people accessing and waiting to access specialised gender dysphoria services.
  • There is a lack of capacity within the specialist workforce to support an increase in specialised gender dysphoria services to meet the reported increase in demand for these services.
  • There is a lack of capacity and capability to ensure proactive risk assessment of the health of patients waiting on the GIDS waiting list.
  • There is a lack of capacity and capability to ensure proactive risk assessment of the risk to individual patients who are transferring from the GIDS waiting list to a GDC waiting list.