This Healthcare Safety Investigation Branch (HSIB) 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.
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.
HSIB recommends that NHS England and NHS Improvement incorporates the findings of this investigation into plans to further review and develop the service specifications for specialised gender dysphoria services. This should include further work with relevant stakeholders to:
- Identify the role of relevant voluntary and charitable sector organisations in supporting patients with gender identity concerns and facilitate information sharing between these organisations and regional professional support services.
- Identify work to improve the transfer of care, management, and proactive risk assessment of patients who are moving from the Gender Identity Development Service waiting list to a gender dysphoria clinic waiting list.
These safety observations are made in support of ongoing national work exploring the care of children and young people with gender dysphoria.
- It may be beneficial if professional bodies produced further advice and guidance to assist NHS staff who may need to provide care to patients with gender identity concerns while patients are waiting to access support from specialised gender dysphoria services.
- It may be beneficial if local healthcare commissioners had up-to-date and easily accessible resources to identify all relevant services within a locality that could provide support to patients with gender identity concerns.
- It may be beneficial if further work considered the ability to allow for shared record systems and ways to appropriately share information between NHS and non-NHS services involved in the care of patients with gender identity concerns.
- It may be beneficial if further work considered the availability and accessibility of specialist training to help in the care of children and young people who have gender identity concerns or gender dysphoria.