Robin Elcock was unable to access new treatment for brain tumours as he did not have the necessary tissue.
Robin Elcock was unable to access new treatment as not enough brain tissue was saved from his first surgery The family of a farmer who died from a brain tumour are calling for people to be given more information about potential future treatments ahead of surgery.
Robin Elcock, 37, from Chippenham, Wiltshire, died in January. But his wife Amiee believes he was could have enjoyed "crucial" extra months with them. They were told he did not qualify for private DC Vax therapy, an immunotherapy which uses a patient's tumour tissue to create a personalised vaccine, due to a lack of tissue taken during surgeries at Bristol's Southmead Hospital. Sanjoy Shah, the hospital's medical director, said it followed NHS best practice when storing tissue and the amount retained was enough for NHS treatment options. Ms Elcock said she had been "shocked and angry" when she realised the DC Vax treatment was not possible. "We were desperate for a lifeline, so we investigated alternative treatment," she said. "We were told that Robin's brain tissue hadn't been stored and what was available wasn't enough to start treatment. "If we'd been told at the start how important tumour storage was, we could have made an informed choice. That knowledge might have given Robin more time."After an initial 13-hour surgery at Southmead Hospital in January 2018 to remove the tumour, Mr Elcock suffered a blood clot on his brain and was rushed in for more surgery.Over the next seven years, he underwent radiotherapy and chemotherapy treatment as well as routine scans for surveillance. Ms Elcock said: "We were told Robin had a life expectancy of 10 years. The doctor strangely asked the ages of our children and said Robin would at least live to see our eldest grow up. "We looked at each other, horrified. That was when we realised this was terminal. It felt surreal, we were shocked into silence."He then underwent more surgery, and it was in 2024 that the family explored private DC Vax therapy in London. This was when doctors told them that there was not enough brain issue from the first surgery for the procedure to be carried out.Ms Elcock said: "Only a small fragment from the second surgery, just 2cm, had been frozen.Mr Elcock's family raised £60,000 through the local farming community to fund experimental immunotherapy in Germany. Over three trips to Germany, Mr Elcock received high-dose nutrient infusions and a personalised DNA vaccine.Mr Elcock died at home on 13 January, aged 37, surrounded by his family and loved ones. Letty Greenfield, community development manager at Brain Tumour Research, said: "Robin's story is a stark reminder that patients and families must be given all the facts about tumour tissue storage from day one. "We urgently need a consistent, nationwide approach so that no one misses out on potential life-extending therapies because of a lack of information." Ms Shah said prior arrangement and consent would be needed in advance of surgery for doctors to take extra brain tissue for experimental techniques outside of standard care. She added: "We extend our condolences to Aimee and the family for their loss and are happy to meet with them if they wish to discuss the care that Mr Elcock received from us."Blood cancer treatments come on 'leaps and bounds'Experts say bureaucracy is "stifling innovation" and that applying for funding to pay for new treatments can be "cumbersome".MP writes to NHS trust about hospital care concerns
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