Long waits and ‘unacceptable’ lack of data at NHS gender clinics in England, review finds | NHS

Doctors treating vulnerable patients with gender dysphoria have no way of assessing whether the NHS treatment provided has worked because the results are not systematically recorded, a damning official investigation into clinics has found.

Waiting times for a first appointment at NHS adult gender dysphoria clinics (GDCs) in England are expected to reach 15 years unless there are improvements, the study suggests. The number of people seeking treatment is increasing significantly and patients are already waiting on average five years and seven months for a first assessment.

The study led by Dr David Levy, NHS medical director and cancer specialist, was commissioned after last year’s Cass report into gender mainstreaming in children and young people.

Levy, the 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.

Its report found that 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 outcome data to help or guide patients, clinicians and commissioners in understanding which treatments and interventions are likely to bring the best outcomes for patients,” the review said.

Long waiting lists also led to safety concerns, pushing people to self-supply their hormone drugs from high-risk online suppliers abroad. By the time patients were seen by clinicians, staff said it was often difficult to provide appropriate support because, in the meantime, patients had sought information and support online, some of which may have been inaccurate, the report noted.

Aside from detailed information on wait times, there was “virtually no other data” available from adult clinics, Levy wrote, making it impossible to analyze how patients responded to a range of treatments, from prescribing cross-sex hormones to psychological support. Adult clinics can refer patients for surgical procedures, but this is provided by a separate NHS service, which was not examined by the team.

The analysis found that some patients expressed regret and dissatisfaction after treatment, and a smaller number subsequently chose to reverse their gender transition, but it was impossible to estimate what proportion subsequently detransitioned due to a lack of outcome data.

“These services need robust, high-quality research. Although the review found that some GDCs were involved in national or international research projects, little evidence was shared before or during the review visits,” the report said. Clinicians told the review team it was difficult to undertake clinical audits on a population “who may feel vulnerable and distrustful about how data is held and used”.

In her report last year, Dr Hilary Cass said she had been approached by a number of staff working in adult clinics concerned about “out of control” waiting lists and inconsistent standards of services.

The profile of people seeking help has changed significantly, from a predominantly older patient group to a predominantly younger age group; the majority (57%) of referrals now concern people aged 18 to 25. The population also shifted from a majority of males registered at birth to a more equal ratio of females registered at birth, but it was difficult to obtain accurate data because not all clinics recorded sex at birth, instead using patient-reported sex, the report notes.

The review found that the increasingly younger cohort of patients had a higher proportion of additional neurodevelopmental problems, such as autism spectrum disorder, and a wider range of other problems, such as mental health problems, childhood trauma or abuse, compared to patients referred in the past.

Only 31.5% of patients were discharged after completing treatment, raising questions about why patients did not continue to come or could not be contacted, the review team found. “This should be one of the first priorities of a national audit,” the report says.

“The provision of gender equality services is an area where there are strong opinions about how care should be delivered and who should provide it. These services must navigate this difficult landscape, where debates are often hostile and polarized, while still providing care to patients,” the report notes.

The review team heard from some staff that they were not encouraged to raise concerns in team meetings, that they “felt that clinical curiosity or constructive challenge was discouraged” and that “issues raised were dismissed as transphobia or bias”. This atmosphere was not felt in all clinics, the review found, with some workplaces encouraging staff contribution.

Professor James Palmer, national medical director for specialist services, said: “Too many people are waiting far too long for care, experiences of care vary and we need to ensure care is equitable wherever patients live. We have already started to take steps to improve services for adults by increasing investment and opening more clinics to help reduce long waits, but we will use the recommendations in this report to further improve services across the NHS.” Funding available for non-surgical care related to genre has more than doubled from £16m in 2020-21 to £36m in 2024-25.

Levy made 20 recommendations, including requiring clinics nationwide to begin reporting outcomes data that includes patients’ sex recorded at birth. From January he will chair a new national program to improve services for adults.

Campaign group TransActual welcomed the recommendations “for a more streamlined, patient-centred care pathway” but raised concerns about the proposed end to self-referrals and said requiring an initial assessment to be carried out by a senior clinician risked “unnecessarily hindering efforts to reduce waiting times”.