Transgender patients not called to NHS screenings due to failure to record sex, review finds

Transgender patients have not been called for vital screenings because the NHS is failing to record people’s biological sex, a review has found.

The review, commissioned under the Conservative government and published on Wednesday, found that there had been a “widespread loss of data on sex” across the health, policing and education sectors, with many public bodies replacing sex data for gender identity statistics.

Professor Alice Sullivan from University College London, who led the study, found that the gradual loss of data on sex “poses risks to individuals”, particularly within health and social care. The report warned that the NHS failure to record biological sex on patient records would have “potentially fatal consequences for trans people” who are not being called to screenings for conditions which may affect them due to their sex.

The report said the ability to change their gender marker in NHS England records “means individuals no longer receive appropriate sex-specific cancer screening referrals, and samples e.g. blood tests are incorrectly assessed or even rejected by laboratories”.

Professor Sullivan recommended that the health service stop issuing new NHS numbers or changed gender markers for transgender patients. She highlighted one case of a paediatrician who said they had come across a child who had been brought up in the preferred gender of their mother, rather than the gender they were assigned at birth.

The mother had reportedly gone to the GP and requested a change of gender/ NHS number when the baby was a few weeks old and the GP had complied. The paediatrician said that they had struggled to get children’s social care workers to investigate the case, according to the review.

Professor Sullivan said the change in the way data was recorded was impacting scientific studies and the ability to assess trends. She gave the example of a recorded increase in new HIV-positive diagnoses in women from 2020, saying it is not possible to establish whether this includes transgender women.

The review also recommended that police forces stop allowing changes to be made to individual sex markers on the Police National Computer.

It also called for the UK Statistics Authority to consider “undertaking a review of activism and impartiality within the civil service, in relation to the production of official statistics”.

The review also suggested that when the public is asked about transwomen in surveys, for example in questions about womens’ sports, they should instead be asked about the participation of “males who identify as women”.

The Office for National Statistics ran into difficulties when they asked people in the 2021 Census: “Is the gender you identify with the same as your sex registered at birth?” It was the first time it had asked the nation questions about gender identity and sexual orientation in 200 years of data gathering.

The stats body admitted the responses may be flawed as some respondents with lower English language skills might not have understood the question. The data showed areas with large ethnic minority populations having a higher than expected rate of people identifying as transgender.

Professor Alice Sullivan, Head of Research at UCL Social Research Institute, said: “Rather than removing data on sex, government and other data owners should collect data on both sex and transgender and gender-diverse identities. This will help develop a better understanding of the influence of both factors and the intersection between them, and this is crucial for research and policymaking.”

A government spokesperson said: “This government is clear that the collection of accurate and relevant data is vital in research and the operation of effective public services, particularly when it comes to sex.

“We are grateful to Professor Sullivan for her work, which has been shared with relevant government departments and public organisations, including the ONS.”