THE CAMPAIGNE for Owain’s Law has welcomed concrete ministerial commitments that could help end the postcode lottery facing brain cancer patients needing frozen tumour tissue.
Fresh-frozen tumour tissue can be vital for advanced testing, research, clinical trials and future treatment options, but many NHS hospitals lack the freezer capacity or systems needed to store it. As a result, access can depend on where a patient is treated, creating a postcode lottery for people with brain cancer.
Responding to yesterday’s Westminster Hall debate, the Minister said “no one can fail to be moved by Ellie’s story” and confirmed she had “asked the NHS to take action.” She said NHS England had “completed a gap analysis of the need for freezer capacity” and was looking to support “an equitable expansion.”
She also committed to examine how trusts can expand freezer capacity, work with professional bodies including the Royal College of Pathologists on national tissue-retention guidance and consent, and update colleagues in the autumn.
The debate, resulting from a Brain Cancer Justice-led Parliamentary petition backed by more than 109,000 people, drew around 35 MPs and saw patients and bereaved families come to Parliament to call for urgent change. MPs made emotional and passionate contributions on the wider brain cancer crisis, including the need for better access to clinical trials, stronger research funding, and clearer national leadership to drive improvements for patients and families.
Access to fresh-frozen tumour tissue is inconsistent across the NHS. Without it, patients can lose opportunities for advanced diagnostics, whole genome sequencing, clinical trials, personalised treatments and research before they know those options exist. Beyond brain cancer, frozen tissue is increasingly important across cancers and future innovation aligned with Government cancer and life sciences priorities.
Chris Evans MP, who attended the debate on behalf of his constituent Ellie James, said there should be “no more cases like Owain’s” and called for guidance so patients “do not lose future options”, asking that the changes be designated “Owain’s Law.”
Ellie James, campaign lead for Owain’s Law, said: “When Owain was diagnosed, we did everything we could to find hope. Surgery, radiotherapy, chemotherapy and personalised vaccines made from his tumour tissue.
“Against all odds, his remaining tumour fully regressed, giving him months of clear scans and normal life that was a blessing at the time.
“But because all of his tumour tissue had not been correctly frozen, doors that should have been open were already partially closed. I strongly believe that if all his tumour tissue had been correctly frozen, Owain would still be here today.
“No family should have to find out too late that where their loved one was treated meant they missed out on future options.
“Yesterday felt like a real breakthrough. The Minister has listened, and these commitments could be the start of ending this postcode lottery. But we have to keep going until every suitable patient, in every part of the country, has the same chance.”
Ruth Jones MP told the debate that Owain’s Law “seeks to end the postcode lottery across the UK in accessing brain tumour tissue freezing,” adding: “No one should have a postcode lottery on those important matters of life and death.”
The Campaign for Owain’s Law will continue working with ministers, clinicians, researchers and patient groups to ensure these commitments lead to practical change. The campaign will keep pressing for dedicated funding to close tissue-freezing capacity gaps, national guidance that delivers a consistent and standardised NHS approach to freezing suitable tumour tissue, and updated consent protocols so patients are fully informed of their options before surgery.
