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A wife fighting to change the law in memory of her late husband has taken her campaign to the Senedd.

Owain James, from Machen, passed away in 2024 with a brain tumour aged just 35, leaving behind wife Ellie James and young daughter Amelia.

Ellie has since been campaigning for Owain’s Law, warning a “hidden postcode lottery” is denying patients access to life-extending treatment.

As part of Owain’s treatment, his tumour tissue needed to be fresh-frozen. However, of the 7cm of Owain’s tumour tissue that was removed, only 1cm of it had been fresh-frozen. This is something Ellie says was not discussed with the family beforehand.

As a result, Owain could only have three vaccines – when he could have had around 30 created had the entire tumour tissue been fresh-frozen.

His tumour regressed, giving the family a renewed optimism, but it came back again, with no more vaccines able to be produced. Owain passed away on June 26, 2024.

Owain’s Law would require every NHS hospital to freeze suitable brain-tumour tissue the right way, while guaranteeing that the tissue remains the patient’s property under informed consent.

Ellie, who lives in Caerphilly, has set up an online petition calling for Owain’s Law – and is aiming to collect one million signatures supporting the cause. Currently, the petition has more than 46,000 signatures.

Her aim is to bring about changes to the law in both Wales – where health is devolved – and in England, where took her campaign to the UK Parliament in January.

‘One chance to get it right’

On Tuesday March 24, Ellie took a digital poster van to the Senedd and hand-delivered letters to party leaders ahead of the upcoming Senedd election, calling for them to support her campaign.

Ellie said: “This is something every brain tumour patient faces and you only get one chance to get it right. 

“If that tumour tissue isn’t handled properly after surgery, that’s it. The opportunity is gone. You lose the chance for further testing, for personalised treatment, for anything else that might help you fight your disease. And most patients will never even know that chance existed.”

She continued: “In Wales, where outcomes are already worse and too many families are losing loved ones far too quickly, this matters even more.

“Patients here should not be starting from a worse position because of how the system works. That’s what happened to Owain. We didn’t know, and that choice was taken out of our hands.

“No family should have to go through that. This is fixable and it has to change.”

Ellie’s campaign was strongly supported by Labour’s Hefin David, the late Caerphilly Senedd Member who raised the issue in the Welsh Parliament last July – just a month before his passing.

His successor, Plaid Cymru’s Lindsay Whittle, hosted Ellie at the Senedd and said: “Ellie is a brilliant campaigner and I fully back her efforts to end what is an unacceptable postcode lottery.

“Outcomes for patients in Wales need and must be improved significantly.”

Ellie said: “I’m incredibly grateful to Lindsay Whittle for his support. It means a lot to have my local representative backing this, and to Plaid Cymru for committing to tackle this issue.

“I hope all parties will now step up and make the same commitment at this crucial Senedd election.”