Patients suffering from brain tumours in the UK are increasingly forced to crowdfund for treatment abroad due to a critical lack of research and innovation in domestic care, a new report reveals.
Data compiled by The Brain Tumour Charity and GoFundMe indicates that one in ten brain tumour fundraisers on the platform specifically mention seeking medical intervention overseas.
This desperation is exemplified by a food scientist, who, having exhausted all NHS treatment options, is now crowdfunding for care in Germany.
Similarly, a mother-of-two has resorted to raffling her home to finance overseas treatment.
The charity’s report highlights that new brain tumour treatments are “consistently disadvantaged” by a healthcare system primarily structured to address more prevalent conditions. This limited access, coupled with sluggish research pipelines, compels patients to undertake significant financial risks to pursue therapies they have discovered independently online.
Many patients are crowdfunding these alternative treatments themselves.
The charity has called for action to make sure patients can access cutting-edge treatments for brain tumours at home.
Natalie Harding died from an aggressive brain tumour in 2021 when she was 31, just seven weeks after her wedding.
She had crowdfunded treatment abroad, and her mother Liz Paul says the care she received in Germany “bought us time”.
The food scientist from Wellingborough was diagnosed with an aggressive brain tumour in 2017 after she was admitted to A&E following a sudden seizure.
She had four surgeries, radiotherapy and chemotherapy. But after exhausting all options available on the NHS she looked for different options available to her.
She found a cancer vaccine, which is given alongside immunotherapy, in Germany.
But the treatment came with a price tag of £50,000 for each round of three treatments, so Ms Harding set up a fundraising page to fund the cost of care.
Mrs Paul said: “I believe the treatment in Germany did buy us time – a bit more time, at least. Natalie said from the start she wanted to fight, and giving Natalie hope through all this was really important.
“You just think, there’s got to be something out there.
“You’re researching all hours of the day, starting from ground zero.
“And you’re on your own, really. But you will do whatever you can for your child.”
Meanwhile beauty therapist Claire Nutter, 48, launched a £5-a-ticket raffle with the chance to win her £800,000 home in Burnley, Lancashire, in January.
The mother-of-two is hoping to fund specialist surgery and therapy in Germany for her brain tumour, at a cost of £350,000.
Ms Nutter said: “When my partner Gary first came up with the idea to raffle the house I think I laughed, I thought it was ridiculous.
“But the cost of the treatment I’m researching is absolutely astronomical and out of reach otherwise.
“After I was diagnosed in 2023, I had surgery, but only 50% of the tumour could be removed safely.
“Radiotherapy was ruled out due to the fear of severe life-changing side effects, and the nine months of chemotherapy I’ve had haven’t reduced the tumour.
“To be told there weren’t any more treatments I could try was upsetting to say the least.
“I do feel lucky to have had the treatments I’ve had but also a huge part of me is upset and angry that this is happening to me.
“It’s frustrating to know that there are treatments available in other countries which we don’t have in the UK.”
Cameron Miller, director of strategy at The Brain Tumour Charity, said: “Brain tumours present a profound and enduring challenge for individuals and health systems due to the nature of the disease.
“We need to see a cultural and structural shift in how we approach innovation in this country; only then will the UK reach its potential to be the life science super power we all want and need.
“This report outlines the urgent action that is needed to ensure that patients see the benefit of innovation as soon as possible.”
The Department of Health and Social Care and NHS England have been approached for comment.
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