MPs Unite Behind ‘Owain’s Law’ to End Brain Cancer Tissue Freezing Postcode Lottery

Minister agrees to meet with campaigners as cross-party MPs urge Government to address lack of tissue freezing causing patients to miss out on novel treatments and advanced diagnostics and research

A cross-party debate in Westminster today put renewed pressure on the Government to reform how brain tumour tissue is stored across the NHS, with MPs backing calls for “Owain’s Law” to make the routine freezing of suitable brain cancer tissue standard practice nationwide.

Investment required to ensure the NHS has sufficient capacity to meet the needs of all brain cancer patients would be relatively modest in the context of overall cancer spending, according to leading cancer charities. Several MPs cited estimates indicating it would only “cost £250,000 to £400,000 to ensure that all NHS trusts have the necessary capacity and capabilities for flash freezing.”

The debate, led by Chris Evans MP (Caerphilly), focused on patient access to tissue freezing for advanced brain cancer treatment, diagnostics and research, and was motivated by the case of Evans’ constituent Owain, who died aged just 34 from glioblastoma, survived by his wife Ellie who is now campaigning for Owain’s Law. MPs heard how Owain’s life could potentially have been extended had more of his tumour tissue been flash frozen rather than preserved in paraffin wax, a method that renders samples unusable for many forms of immunotherapy and genomic testing.

Opening the debate, Evans described Owain’s experience as a “real, achievable missed opportunity to extend, if not save, his life”, explaining that only a small portion of Owain’s tumour had been frozen, limiting his access to personalised immunotherapy vaccines. He told MPs:

“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.”

Evans warned that the absence of national standards has created a postcode lottery of care, with access to tissue freezing dependent on local capacity and custom rather than patient need. He urged Ministers to commit to national guidance and modest investment in freezer infrastructure, arguing that for a one-off cost of just a few hundred thousand pounds, the NHS could unlock access to cutting-edge treatments and research for every brain cancer patient.

During the debate, Monica Harding MP (Esher and Walton) underlined both the human and economic case for reform, noting that brain cancer is the biggest cancer killer of people under 40 and frequently forces patients and carers out of work. She told the House:

“This proposal would not only save lives at a relatively small cost but has an economic benefit. Seventy per cent of carers have to give up work. This is a change that makes sense morally, medically and economically.”

Harding stressed that the lack of routine tissue freezing is holding back progress in diagnostics, personalised medicine and research, despite the UK’s ambition to be a world leader in life sciences.

Later in the debate, Jonathan Brash MP (Hartlepool) shared the experience of his 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. Brash described the situation as fundamentally unfair:

“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. Access to the best diagnostics and research pathways should not depend on geography, chance or knowing the right question to ask.”

Brash called on the Government to make flash freezing of brain tumour biopsies standard practice across the NHS, arguing that while glioblastoma remains a devastating diagnosis, patients should not be denied even the possibility of emerging treatments because of outdated storage practices.

Across the debate, MPs from all parties highlighted the wider consequences of inconsistent tissue storage, including barriers to clinical trials, delays in diagnosis, and lost opportunities for research into less survivable cancers. Several speakers pointed to international examples where routine tissue freezing and clearer consent frameworks have accelerated innovation and improved outcomes.

Responding for the Government, Health Minister Ashley Dalton acknowledged the seriousness of the issues raised and the strength of feeling in the debate. She expressed sympathy to Owain’s family, confirmed she would meet campaigners, and committed to exploring current tissue freezing arrangements, including engagement with devolved administrations. Dalton also confirmed that the forthcoming national cancer plan, due in early February, would include a renewed focus on rarer cancers such as brain cancer.

The debate concluded with strong cross-party agreement that ending the tissue freezing postcode lottery is a simple, affordable and achievable reform that could transform access to advanced treatment and research for brain cancer patients across the UK.