Wife campaigning for law change after husband’s brain tumour battle

Owain James was just 34-years-old when he was diagnosed with a brain tumour three years ago.

Sadly, Owain, from Machen, passed away last summer, leaving behind wife Ellie James and young daughter Amelia.

Now, Ellie is fighting to change the law to help others in Owain’s memory.

In August 2022, Owain was diagnosed with a 14cm, malignant, grade-four brain tumour in his right frontal lobe.

He was rushed in for surgery, where half of the tumour was removed.

Owain, a plumber who played football for Church Village, was determined to undergo treatment to beat the disease for his then-18-month-old daughter.

The family were forced to look for other options alongside NHS treatment, and found a personalised vaccine that used a patient’s tumour tissue to educate the immune system to recognise cancerous cells.

This required Owain’s tissue, which 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.

Owain’s 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

Ellie is now fighting for Owain’s Law – which 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.

Last month, the issue was raised in the Senedd by Caerphilly MS Hefin David, before his untimely passing.

Ellie’s campaign was strongly supported by Dr David, and received cross-party support when it was debated in Cardiff Bay.

However, health secretary Jeremy Miles poured cold water on it, warning of unintended consequences.

Speaking in the debate, Mr Miles said: “Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies.

“Overriding that clinical discretion through legislation could compromise timely diagnosis or create conflict where tissue volume is limited, which is why the government does not believe that the case is made for legislation.”

However, Ellie remains steadfast in her determination to change the law in both Wales and England. She is hoping to meet with Mr Miles to discuss the issue next month, and is also due in Westminster to present Owain’s Law to members of the UK Parliament’s All-Party Parliamentary Group on Brain Tumours.

‘One million signatures’

Ellie 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 13,500 signatures.

Speaking to Caerphilly Observer, Ellie said: “It’s really important that the public supports this campaign because clearly at the moment, the Welsh Government seems to think it’s okay that people don’t have ownership or consent for their tissue.

“I need to be able to demonstrate that it’s a public issue by getting as many people to sign the petition as possible.”

The recent passing of Hefin David, a strong advocate for Owain’s Law, has made Ellie even more determined to bring about change, in memory of both Owain and Hefin.

“Hefin was just the most amazing, most compassionate, and driven person,” Ellie said. “He was just so driven to do this for me and in memory of Owain.

“He was so compassionate and did anything he could to help the community and help people around him, and make the world a better place. He was an absolute godsend for that.”

Visit Change.org to sign Ellie’s petition.