MPs are set to debate a proposed change in the law, dubbed 'Owain's Law', following the death of a brain cancer patient who was unable to access personalised treatment due to inconsistent NHS practices. Ellie James, from Caerphilly, south Wales, is campaigning for patients to have the right to consent to the freezing and storage of their tumour tissue after surgery, which would enable access to personalised treatments and genetic tests.
Her husband, Owain James, died in June 2024 from a glioblastoma, a type of brain tumour. He was diagnosed in September 2022 with a 14cm tumour, half of which was safely removed during surgery. The family raised funds for a personalised vaccine, but discovered that most of the tumour had been placed in a chemical, rendering it unusable. Only a small amount of tissue remained, allowing for just three vaccines instead of the estimated 30 needed.
Mrs James told the Press Association that after receiving the vaccines, a scan showed the tumour had 'completely regressed', giving him nine months of clear scans and a normal quality of life. However, the tumour returned, and without additional vaccine doses, he passed away. She believes he would still be alive if the law had been in place.
The issue will be debated in Westminster Hall on Wednesday. Mrs James is calling for patients to have informed consent over what happens to their tissue, saying, 'Owain's Law is really about just allowing patients to have options and choice.'
