Doctors treating vulnerable patients with gender dysphoria have no way of assessing whether the NHS treatment provided has worked because outcomes are not systematically recorded, a damning official inquiry into the clinics has found.
Waiting times for a first appointment at NHS adult gender dysphoria clinics (GDCs) in England are projected to reach 15 years unless there are improvements, the review found. The number of people seeking treatment is rising significantly and on average patients are already waiting five years and seven months for a first assessment.
The review conducted by Dr David Levy, an NHS medical director and cancer specialist, was commissioned after last year’s Cass report on gender care for children and young people.
Levy, an NHS medical director and cancer specialist, took a team to nine NHS England clinics to assess the effectiveness and safety of each service, interviewing staff and patients.
His report found that the clinics’ failure to study outcomes for their patients made it impossible to judge the safety of these services.
“It is unacceptable that there is no outcomes data to support or guide patients, clinicians and commissioners in understanding which treatments and interventions may deliver the best outcomes for patients,” the review said.
Long waiting lists were also leading to safety issues, driving people to self-source hormone drugs from high-risk online providers abroad. By the time patients were seen by clinicians, staff said it was often challenging to provide appropriate support because in the interim patients had sought information and support online, some of which may have been inaccurate, the report noted.
Aside from the detailed information about waiting times there was “virtually no other data” available from the adult clinics, Levy wrote, making it impossible to analyse how patients responded to a range of treatments, from prescription of cross-sex hormones to psychological support. The adult clinics can refer patients for surgical interventions, but this is provided by a separate NHS service, which was not reviewed by the team.
The review heard that some patients expressed regret and dissatisfaction after treatment, and a smaller number later chose to reverse their gender transition, but it was impossible to estimate what proportion later detransitioned because of the absence of outcomes data.
“These services need robust, high-quality research. While the review heard that some GDCs were involved in national or international research projects, little evidence was shared before or during the review visits,” the report found. Clinicians told the review team that it was challenging to undertake clinical audits on a population “that may feel vulnerable and mistrustful about how data is held and used”.
In her report of last year, Dr Hilary Cass noted that she had been approached by a number of staff members working in adult clinics who were concerned by “out of control” waiting lists and inconsistent standards in the services.
The profile of people seeking help has changed significantly, shifting from a predominantly older to a predominantly younger age group of patients; the majority (57%) of referrals are now for those aged between 18 and 25 years old. The population has also shifted from mostly birth-registered males to a more even ratio of birth-registered females, but getting precise data was difficult because not all clinics recorded sex at birth, using patient-reported gender instead, the report noted.
The review was told that the growing younger cohort of patients had a higher proportion of additional neurodevelopmental conditions, such as autism spectrum disorder, and a broader range of other issues, such as mental health conditions, trauma or abuse during childhood, compared with patients referred in the past.
Only 31.5% of patients were discharged having completed their treatment, raising questions about why patients were not continuing to attend or could not be contacted, the review team found. “This should be an early priority for a national audit,” the report said.
“Gender service provision is an area where there are strongly held views about how care should be delivered and who should provide it. These services have to navigate this challenging landscape, where debate is often hostile and polarised, while continuing to provide patient care,” the report noted.
The review team heard from some staff members that they were not encouraged to raise concerns in team meetings, and “felt clinical curiosity or constructive challenge was discouraged” and that “issues raised were dismissed as transphobia or prejudice”. This atmosphere was not felt in all clinics, the review found, with some workplaces encouraging staff contributions.
Prof James Palmer, national medical director for specialised services, said: “Too many people are waiting far too long to get care, experiences of care are variable, and we need to ensure care is equitable wherever patients live. We have already begun to take action to improve adult gender services by increasing investment and opening more clinics to help bring down long waits but we will use the recommendations in this report to further improve services across the NHS.” The funding available for non-surgical gender care more than doubled from £16m in 2020-21 to £36m in 2024-25
Levy made 20 recommendations, including a requirement that clinics nationally begin reporting outcomes data that include patients’ birth-registered sex. From January he will chair a new national improvement programme for adult gender services.
The campaign group TransActual welcomed recommendations “for a more streamlined, patient centred care pathway”, but raised concerns about the proposed ending of self-referrals and said requiring a first assessment to be done by a senior clinician risked “unnecessarily hampering efforts to reduce waiting times”.
