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Farmer dies after missing out on treatment amid calls for change Farmer dies after missing out on treatment amid calls for change
(1 day later)
Robin Elcock was unable to access new treatment as not enough brain tissue was saved from his first surgeryRobin 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.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 Aimee believes he was could have enjoyed "crucial" extra months with them.Robin Elcock, 37, from Chippenham, Wiltshire, died in January. But his wife Aimee 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.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.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.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."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.""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.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.
Despite the ordeal, he returned to work on his farm within weeks.Despite the ordeal, he returned to work on his farm within weeks.
Over the next seven years, he underwent radiotherapy and chemotherapy treatment as well as routine scans for surveillance.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.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.""We looked at each other, horrified. That was when we realised this was terminal. It felt surreal, we were shocked into silence."
A routine MRI scan in December 2023 revealed another tumour located behind Mr Elcock's left ear.A routine MRI scan in December 2023 revealed another tumour located behind Mr Elcock's left ear.
He then underwent more surgery, and it was in 2024 that the family explored private DC Vax therapy in London.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 tissue from the first surgery for the procedure to be carried out.This was when doctors told them that there was not enough brain tissue from the first surgery for the procedure to be carried out.
'Taken in an instant''Taken in an instant'
Ms Elcock said: "Only a small fragment from the second surgery, just 2cm, had been frozen.Ms Elcock said: "Only a small fragment from the second surgery, just 2cm, had been frozen.
"It felt like a lifeline had been taken from us in an instant.""It felt like a lifeline had been taken from us in an instant."
Mr Elcock's family raised £60,000 through the local farming community to fund experimental immunotherapy in Germany.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.Over three trips to Germany, Mr Elcock received high-dose nutrient infusions and a personalised DNA vaccine.
He showed improvement in July 2024 before his health sharply declined.He showed improvement in July 2024 before his health sharply declined.
Mr Elcock died at home on 13 January, aged 37, surrounded by his family and loved ones.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.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.""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. Dr 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." He 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."
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