Wife’s bid to change law in husband’s memory backed by Caerphilly MP

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.

Since Owain’s passing, Ellie has been fighting to change the law to help others in Owain’s memory.

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 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 14,500 signatures.

Her aim is to bring about changes to the law in both Wales – where health is devolved – and in England.

The campaign has received the backing of Caerphilly’s Labour MP Chris Evans, after he met Ellie in his Parliamentary office in London.

In support of the campaign, Mr Evans has vowed to write to the Human Tissue Authority, back events in Parliament supporting Owain’s Law, and submit written parliamentary questions to the UK Government.

Mr Evans said: “It was a pleasure to meet Ellie in my London office recently to hear about her and Owain’s story, and what I can do to help. Her campaign for Owain’s Law has been tireless and inspiring.”

He continued: “I think it is right that patients should have some control over how their tissue is kept and what is done with it. In cases of brain tissue, certain kinds of storage can limit options for further treatment, which should not be the case.

“I will be raising Owain’s case in Parliament wherever I can, and I will be urging the government to change the law and give patients more rights over what is done with their tissue.”

Ellie’s campaign received strong support from the late Caerphilly Senedd Member Hefin David, who raised the issue in the Senedd in July, just a month before his untimely passing.