The petition runs to a few hundred words. Its author says her mother was 42 at diagnosis and died at 51, that she asked several times for genetic testing, and that she was turned down each time because the family history on file was judged too thin. Now 38, Ellie Sullivan has triple-negative breast cancer. She has only now been offered the test.
Sullivan lives in Honeybourne, Worcestershire, and is a mother of four. The Evesham Observer reported in May that she was diagnosed in February, nine years after the death of her mother, Christine. For ten years before that, she had raised her concerns at Birmingham Women’s Hospital.
What the rule said
The record shows the obstacle was a threshold. NHS guidelines, the Observer reported, make family members eligible for testing only if the relative was diagnosed under 40 and a second close relative was also affected. Christine was 42. Sullivan did not know which type of breast cancer her mother had, and that gap closed the door.
“I was refused testing because I did not know what type of breast cancer my mum had,” Sullivan told the paper. “I kept being told I was too young to get it.” She called the process “a tick box exercise” and said that without a complete family history she could not tick the right box.
Testing came after the diagnosis. It found a mutation in the PALB gene, linked to a greatly increased risk of breast cancer. Carriers of a PALB2 alteration can receive annual MRI breast screening from age 30, instead of routine screening between 50 and 53, the Observer noted. Nobody had put Sullivan on that schedule.
The cost of the delay
Sullivan now faces a bilateral mastectomy to cut her future risk, a procedure the paper said carries a high recurrence rate. She told the Observer she would have chosen preventive surgery if she had known, because it “reduces my risk by over 95 per cent”. She has also had to scale back her beauty business in Broadway and, in her words, is reliant on her children, who are aged 11 to 21.
Triple-negative disease develops more often in women under 40 and makes up 15 per cent of breast cancers, according to the same report.
The petition and the response
Sullivan launched a campaign called Test Us Too, backed by the Pink Ribbon Foundation, alongside a UK Parliament petition. It asks that NHS genetic testing eligibility be updated so people whose parent had breast cancer before 45 can be tested when that parent is dead or unavailable. By the Observer’s May report it had drawn more than 6,000 signatures. Her aim was 100,000, the level at which Parliament considers a debate.
The petition closed on 8 October 2026 with 16,428 signatures. On 17 August the Government had already replied. It said it could not discuss individual cases, but that under the current National Genomic Test Directory criteria, people who qualify on family history should not be denied testing because the affected relative is deceased or unavailable.
NHS England had been approached for comment when the Observer went to print.
Sources
- Honeybourne mum-of-four in campaign for earlier testing of cancer risk
- Petition: Ensure people whose parent had breast cancer under 45 can access genetic testing
