Owain James was just 35 years-old when he died of brain cancer, and his widow says that his treatment was curtailed due to a limitation of options which was avoidable.
Ellie James has taken up the cause of warning other cancer patients that there is something positive they can do to create their own life-prolonging treatment. When a brain tumour is removed some tissue is retained for diagnosis, but suitable tissue could also be retained for future treatments and research – if the health board has the facility to do so.
NHS Lothian reported fresh-freezing 60% of brain tumour specimens in 2025, NHS Grampian just 2% and NHS Tayside none.
If the opportunity is missed at the time of surgery then it cannot be recreated later, which reduces treatment options. In Owain’s case seven centimetres of tumour tissue were removed at the surgery stage but only one centimetre was fresh frozen and so only three doses of vaccine could be made – instead of a possible thirty. When he was given the vaccine Owain;s scans showed complete regression of the remaining tumour, but the treatment was only successful for nine months.
Some brain cancer patients are missing out on personalised treatment such as developing a personalised cancer vaccine, simply because their health board has not offered to freeze tumour tissue. The effect of freezing the tissue is that the cancer DNA is kept intact which is essential for personal immunotherapy.
Ellie says that she wants tissue freezing to become standard practice for every brain cancer patient in the UK – and explained that a UK-wide frozen tissue storage model would cost up to £374,000.
Ellie launched the Campaign for Owain’s Law after Owain died from a grade 4 brain tumour. They lived in Wales just outside Cardiff, and at the time he was diagnosed in August 2022, their daughter Amelia was 18 months old. She is now five and has just started school.
Following his surgery, Ellie and Owain pursued a personalised cancer vaccine made using his own tumour. But only a small amount of the tumour removed had been fresh-frozen. When his cancer later returned, no further vaccines could be made because no more suitably frozen tissue remained. Procedures vary between hospitals and Ellie is keen to ensure that there is national guidance established on handling and preserving suitable tumour tissue.
She explained: “As we start to look towards the future in cancer more treatments are going to become personalised based on the molecular profile of your tumour. So we should be freezing tissue, but particularly in the case of brain tumours. The treatment options have barely changed in the last 30 years.
“My husband was offered the same treatment that his grandad was offered for his brain tumour in the 1990s. There is currently testing that is available within the NHS for brain tumour patients. It requires frozen tissue, but less than 5% of patients are getting that currently because the NHS is just not freezing them. I believe the picture in Scotland is slightly worse based on the UK average, so I think Scotland has a real opportunity. There are four neurosurgical hospitals and it is a much smaller area to make quite an impactful change for patients.”
Ellie mentioned that Dr Scott Arthur, MP for Edinburgh South West had been “super supportive” of what she is doing.
Dr Arthur said: “I am proud to support the Owain’s Law campaign. Tissue freezing is crucial because it allows tumour samples to be preserved for future testing, research and potentially life-extending personalised treatments and, currently, too many patients face a postcode lottery in access to these opportunities. I hope policymakers across the UK will continue working to improve access to tissue freezing and the opportunities it can provide for cancer patients.”
The couple had not understood at the time of surgery that the way Owain’s tumour was preserved could restrict options they might want to pursue later. Ellie now wants to stop other families discovering the same problem too late.
On Wednesday she will bring a two metre tall replica medical freezer to The Scottish Parliament where MSPs will be invited to sign it in support of the government taking action.
Brain tumours are the biggest cancer killer of people under the age of 40, and the average survival time for glioblastoma is around 12-18 months. Scottish swimmer Archie Goodburn recently called for greater investment in research and treatment, and met with the Prime Minister to discuss the issues..
More than 65 MPs backed the campaign when Ellie brought the replica freezer to Westminster earlier this year including Dr Scott Arthur who promoted the Rare Cancers Bill which became law in March 2026.
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