Campaign for Owain’s Law draws cross-party support in UK Parliament

A wife’s campaign to change the law in memory of her late husband has been debated in the UK Parliament, drawing cross-party support.

Owain James, from Machen, passed away in the summer of 2024 with a brain tumour, leaving behind wife Ellie James and young daughter Amelia.

Ellie has since been campaigning for Owain’s Law – and she watched from the gallery as Caerphilly MP Chris Evans led a debate on the issue in Westminster Hall on Wednesday January 7.

Owain’s Law

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.

Debate

Opening the debate, Labour MP Mr Evans described Owain’s experience as a “real, achievable missed opportunity to extend, if not save, his life”.

“If all the removed tissue had been fresh frozen, around 30 vaccines could have been created. If Owain and his family had been more informed about the practices surrounding brain tissue freezing and storage, Owain could still be with us.”

Mr Evans warned of a postcode lottery of care due to the lack of a national set of standards, with access to tissue freezing dependent on local capacity.

He urged government ministers to introduce national guidance and invest in freezer infrastructure, which he argued would be a one-off cost of just a few hundred thousand pounds – giving the NHS access to cutting-edge treatments and research for every brain cancer patient.

During the debate, several MPs cited an estimated one-off cost of between £250,000 and £400,000 to ensure all NHS trusts have the necessary capacity and capabilities for flash freezing.

Lib Dem MP Monica Harding highlighted both the human and economic cases for change, saying brain cancer is the biggest cancer killer of people under 40. She said: “This proposal would not only save lives at a relatively small cost but has an economic benefit. 70% of carers have to give up work. This is a change that makes sense morally, medically and economically.”

Labour MP Jonathan Brash shared the experience of a Hartlepool constituent, Trevor, who died from glioblastoma after discovering too late that his biopsy sample had not been flash frozen – closing off potential treatment and trial options.

“Families are placing their trust in the system at the worst moment of their lives, without knowing that one unmade request could close off future options entirely,” said Mr Brash. “Access to the best diagnostics and research pathways should not depend on geography, chance or knowing the right question to ask.”

Responding on behalf of the UK Government, health minister Ashley Dalton expressed sympathy towards Owain’s family and agreed to meet campaigners.

She also vowed to explore current tissue freezing arrangements, and work with the devolved governments.

Ms Dalton pointed to the government’s upcoming national cancer plan, due next month, which will included a focus on brain cancer.

‘Outdated and inconsistent practices’

Mr Evans called on the UK Government to work with the Welsh Government to implement Owain’s Law, and said: “Brain cancer is cruel, and one of the deadliest diseases. Patients should not face unacceptable and avoidable barriers to their survival due to outdated and inconsistent practices.

“I am pleased to have been able to lead a debate on Owain’s Law in parliament, and I want to thank Ellie again for her determination in leading this powerful campaign.

“I look forward to meeting the minister with Ellie in due course to explore what can be done to make the changes the Owain’s Law campaign are asking for, to help improve cancer outcomes across the UK.”