Thousands of transgender patients in England are missing out on vital cancer screening because of the way their GP records are drawn up, experts have warned.
Everyone registered as female with their GP is automatically invited to breast screening from the age of 50 to 70, and to regular cervical screenings from 25 to 64.
But warnings from experts at the World Cancer Congress in Geneva this week, underscored by official NHS guidance, show that many trans patients are not invited to undergo the tests.
In England, trans men who were registered female at birth and have changed the gender on their patient record to male are not offered breast or cervical screening, regardless of whether they have had chest reconstruction or a hysterectomy.
Trans women who are still registered male with their GP are also not offered routine breast screening, even if they have been on longterm hormone therapy, which puts them at added risk of breast cancer.
Experts say the problem is the way GP electronic records in England are updated when patients change their gender.
NHS England stipulates that when a patient changes their registered gender, they are given a new NHS number and must be registered as a new patient at their GP practice. All their previous medical history is transferred into their new medical record and their previous name, sex at birth, any other gender-specific terms and old NHS number are removed.
Because the breast and cervical screening programmes use patients’ current gender to generate appointment invitations, many trans patients are missing out.
Wider cancer statistics – such as screening uptake, the stage at diagnosis, adherence to treatment and outcomes – are all also unrecorded for trans cancer patients.
There are estimated to be between 200,000 and 500,000 trans people in the UK.
Speaking from the summit in Geneva, Stewart O’Callaghan, the chief executive of the charity OutPatients, said: “Even if only 10% change the gender on their GP record, that means tens of thousands are unable to easily access a routine mammogram or smear test that could detect cancer early and save lives.”
The NHS guidance says trans patients who are excluded from these national screening programmes can request a mammogram or smear from their GP, but family doctors are not routinely trained on how to discuss screening with trans patients or ensure they have the same access to tests, reminders and follow-ups.
Dr Alison May Berner, an oncologist specialising in cancer care for trans people who was also at the World Cancer Congress, said: “We all have busy lives and rely on these vital systems to remind us to access screening. On top of that, these screenings can be dysphoric for trans people.
“Putting the burden on the individual to approach the GP compounds existing healthcare inequalities for trans patients.”
Gemma Peters, the chief executive of Macmillan Cancer Support, said: “Research shows that transgender people are more likely to be exposed to a number of risk factors for cancer, while their access to timely and effective care is affected by a range of complex issues. From screening and diagnosis through to treatment and support, it is essential that trans people get the care they need and are entitled to. The reality is that health inequities endanger lives.”
O’Callaghan said more could be done. “The system needs to find a way to track trans status without removing a person’s right to privacy.
They added: “A potential solution would be having both gender and sex registered at birth on the patient record, but the latter only being accessible at a system level or by clinicians with permission. But any solution to this issue must be co-created with trans patients directly.”
