Glioblastoma affects around 3,000 people in the UK each year. Here's what you need to know about treatment options, costs, and what families are doing when the NHS can't cover their treatment. Visit https://gofund.me/c11576b0 to learn how one family is funding their battle against cancer.
In today's episode, we're discussing a form of cancer called glioblastoma. Let's start with the basics. Glioblastoma multiforme, or GBM, is the most common and most aggressive primary brain tumour in adults. The average survival time is just twelve to fifteen months, and fewer than five percent of patients survive five years. The tumour's rapid growth and resistance to standard treatments make it especially difficult to manage.
So, what does the NHS offer? The standard of care is a combination of surgery, radiotherapy, and chemotherapy. According to a recent study in England, only about twenty-nine percent of patients receive all three treatments, while twenty-one percent receive no treatment at all. Even with the best NHS care, recurrence is common, and options become limited quickly.
The NHS covers surgery to remove as much of the tumour as possible, radiotherapy to target remaining cancer cells, and chemotherapy—usually a drug called temozolomide. But here's the reality: cutting-edge therapies like immunotherapy, tumour-treating fields, and gene-targeted drugs are generally not available on the NHS. They're still considered experimental or too costly for routine use.
When NHS options run out, families often look to private clinics in the UK or abroad. These treatments can include immunotherapy, tumour-treating fields, and targeted molecular therapies—drugs tailored to the tumour's genetics. But these options are expensive. Private treatment plans can easily exceed one hundred thousand pounds, and most are not covered by insurance or the NHS. Travel, accommodation, and ongoing care add to the financial strain.
So how are UK families funding treatment? Let's look at a real-world example. Earlier this year, Asta Pratapaviciene and her partner Raimondas launched a fundraising campaign after Raimondas was diagnosed with glioblastoma. Their goal: raise one hundred thousand pounds for private, potentially life-extending therapies unavailable through the NHS.
In four months, the campaign has raised just under seven percent of its target—about six thousand six hundred pounds from one hundred and thirty-two donations. Most donations are small, between five and twenty-five pounds, with a handful of larger gifts making up the bulk of the total. The average donation is about fifty pounds, but the median is closer to ten. At the current rate, it could take over two years to reach the target time most glioblastoma patients simply don't have. And this isn't unusual. Many UK families in similar situations turn to crowdfunding, but the gap between what's needed and what's raised is often vast.
If you're weighing your options, here are five key factors to consider. First, understand the standard pathway. Start with NHS care—surgery, radiotherapy, and chemotherapy—since these are proven, accessible, and covered. Second, know the limits of the NHS. Be aware that advanced therapies are rarely available on the NHS. If you want to pursue them, you'll need to plan for private costs. Third, research experimental options carefully. Not all private or overseas treatments are backed by substantial evidence. Use trusted resources to check for clinical trials and new therapies. Fourth, plan for the financial reality. Private treatment is expensive. Crowdfunding can help, but most campaigns fall short of their targets. Consider all costs, including travel and aftercare. And fifth, seek support early. Connect with charities for advice, emotional support, and help navigating the system.
Glioblastoma is a devastating diagnosis, and the UK's best minds are working to improve outcomes. For now, most families face tough choices between standard NHS care and costly private alternatives. If you're considering your options, start by gathering information, talking to your care team, and connecting with others who've walked this path.
For a real-world look at the challenges and hope involved, you can read more about Asta and Raimondas's journey or support their campaign by visiting the link in the description.
That's it for today's episode. Stay informed, stay hopeful, and remember—you're not alone. Asta Pratapaviciene City: Basildon Address: 28 Gilbert Drive Website: https://gofund.me/c11576b0 Email: asta72922@gmail.com