Campaigner to confront party leaders over ‘brain cancer postcode lottery’

Emily Price

A Welsh brain cancer campaigner will confront political leaders in the Senedd over a “hidden postcode lottery” that is denying patients access to life-extending treatment.

Ellie James, from Caerphilly, will take a digital poster van to Cardiff Bay on Tuesday (March 24) as politicians prepare to take part in Plenary.

She will hand-deliver letters to party leaders ahead of the Welsh election calling for urgent action to end inconsistent tumour tissue freezing across the NHS in Wales.

Ellie has warned that the critical step determines whether patients can access modern, personalised cancer care.

Brain cancer remains one of the deadliest cancers in Wales with around three people diagnosed every week.

Only one will still be alive a year later.

Survival has barely improved in decades, with outcomes in Wales consistently worse than in England.

Yet campaigners say many patients are unknowingly missing out on cutting-edge treatments, genetic testing and clinical trials, simply because their tumour tissue is not properly preserved after surgery.

Ellie launched the Campaign for Owain’s Law after her husband, Owain, died aged just 35.

Most of his tumour tissue was not frozen, meaning he was unable to access newer personalised treatment options.

Ellie’s campaign has already gained significant political backing with more than 60 MPs attending a Westminster event last month showing their support.

The widow has also launched a Change.Org petition which has been signed by over 46,000 people.

Ellie is urging the next Welsh Government to introduce national standards so that all suitable tumour tissue is frozen, and patients are properly informed and able to consent.

Ellie James 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.

“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.”

Members of the Senedd are expected to meet Ellie during the day, with some speaking publicly in support of her campaign.

In July last year, the Senedd backed a proposal for a Bill on Owain’s Law to strengthen consent and transparency around brain tumour tissue use.

The debate had been brought forward by Ellie’s MS at the time – the late Hefin David.

The motion was non-binding and only expressed support in principle. To become law, it must be developed into a Member’s Bill or adopted by the Welsh Government.

At the time, Wales’ health secretary Jeremy Miles argued against the motion, warning that introducing a statutory requirement to fresh-freeze all brain tumour tissue could cause unintended consequences.

A Welsh Government spokesperson said: “Our position is that the case has not been made for legislation.

“Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies, and overriding that clinical discretion with legislation could compromise timely diagnosis or create conflict where tissue volume is limited.

“We will continue to work with All-Wales Medical Genomics Service and other bodies, to ensure NHS Wales practices in tissue archiving and access to genomic testing remain in the best interests of our patients.”