Postcode-based testing gap may have cost woman her cancer warning

Heather Morgan lived eight miles west of the English border, but that short distance helped decide whether she was offered a genetic test that might have changed her cancer care. In 2014, women under 50 in England with triple negative breast cancer were immediately put forward for genetic testing, while women in Wales were not.

Morgan was 46 when she had triple negative breast cancer and later learned she carried the BRCA1 gene mutation, which raises the lifetime risk of breast and ovarian cancer. She says that if she had known in 2014, she would have chosen preventative surgery to remove both ovaries and, if advised, would also have considered a double mastectomy. When ovarian cancer was diagnosed in 2021, after a visible abdominal lump triggered further tests, she said the missed warning had “changed everything” and left her “mad annoyed”.

Morgan kept the letter from the all-Wales genetic testing service explaining that she was not eligible. At the time, the Welsh government said it was still working to increase testing capacity and was committed to meeting NICE guidance within the financial year. By 2015, the rules in Wales had changed to align with England, but Morgan had finished treatment and was never invited back for testing.

Her case has become a stark example of how quickly access can diverge across the UK. Target Ovarian Cancer says around 7,000 women are diagnosed with ovarian cancer across the UK each year, about one in 50 women will develop it in their lifetime, one in five die within three months of diagnosis, and one in four wait more than three months after first symptoms before seeing a GP. Ovarian Cancer Action has argued that care and survival still vary by place, and said the 2024 National Ovarian Cancer Audit, covering England in 2021 and Wales in 2022, exposed continuing gaps in emergency diagnosis and treatment.

The policy response has been piecemeal. NICE published guideline NG241 on 21 March 2024 on familial and genetic risk of ovarian cancer, covering assessment, genetic counselling, genetic testing, preventive medicines and risk-reducing surgery. NHS England’s National Genomic Test Directory says genomic tests should only be requested when the result is likely to change clinical management, while NHS 111 Wales now says genetic tests can identify faults such as BRCA1 and BRCA2 that raise the risk of breast, ovarian or prostate cancer.

Campaigners want more than guidance. Ovarian Cancer Action said the national audit, pushed for nearly a decade and backed by more than 12,000 petition signatures in 2018, is essential if the NHS is to close the gaps that let postcode determine who gets warned in time. Morgan now supports the National Hereditary Breast Cancer Helpline, which has opened an information centre in Flint and is expanding support for cancers linked to BRCA mutations.