A grieving widow's campaign to end a postcode lottery of care for brain cancer patients within the NHS is set to be debated by MPs in Westminster.
The Campaign for 'Owain's Law'
Ellie James, 36, from Caerphilly in south Wales, is spearheading a call for a change in the law following the death of her husband, Owain James, in June 2024. Mr James, a father of one, passed away from an aggressive glioblastoma brain tumour.
Mrs James believes his life could have been prolonged if not for a critical decision made about his tumour tissue after surgery. The campaign, dubbed 'Owain's Law', seeks to give patients the legal right to consent to how their tissue is stored after operations, specifically the option to have it frozen for potential future personalised treatments.
A Crucial Decision and a Lost Opportunity
Owain James was diagnosed with brain cancer in September 2022. Surgeons successfully removed a 14cm tumour, but only half of it was preserved in a way that allowed for advanced treatment. The family later raised funds for a personalised vaccine therapy, only to discover that 6cm of the tumour had been placed in a chemical fixative, rendering it unusable for this purpose.
"We only had a tiny little bit of tissue that could be used to make this vaccine," Mrs James explained. "The more tissue you've got for the vaccine, the more vaccines you can get. But because he only had a little bit, he only had three vaccines, where really he should have had around 30."
Remarkably, after receiving the three vaccines alongside chemotherapy and radiotherapy, scans showed the tumour had completely regressed. Mr James enjoyed nine months of normal quality of life before the cancer returned. With no more vaccine available, he died in 2024.
Call for Patient Consent and Consistent Care
Ellie James argues that the inconsistent approach to tissue storage across the NHS creates an unfair lottery, where a patient's access to cutting-edge treatments depends on where they live and the decisions of individual pathologists.
"I think patients should have control and informed consent over what happens to their tissue," she stated. "For me, Owain's Law is really about just allowing patients to have options and choice."
She firmly believes that had the proposed law been in place, giving them the right to request frozen tissue, her husband might still be alive today. The issue will be discussed in a Westminster Hall debate, putting the campaign for legislative change directly before MPs.
