In the hospital corridor, Jasmine got ready for yet another round of blood tests – and she couldn’t help but cry.
“She’s never liked needles,” her father, Anthony Freeman, explained, “but since her diagnosis it’s been non-stop, and she’s just terrified of injections now.”
But blood tests are only the start of Jasmine’s day.
Over the following few hours we watch as the seven-year-old girl is pushed in a wheelchair to a series of exams: an ECG, a 45-minute scan in the MRI machine, as well as mobility and brain function tests by her doctors.
All are designed to closely monitor her health, and keep an eye on the growth of the midline glioma – a malignant tumour – in her brain.
But, while the tests themselves seem pretty routine, they’re not happening at an NHS hospital near her home in Bracknell, but at the Princes Maxima children’s hospital in Utrecht, Netherlands, where Jasmine is enrolled on an experimental drugs trial for her rare and incurable cancer.
She was diagnosed in February, and the prognosis was devastating.
Anthony said: “The doctor just told us straight that 90% of kids die within the first nine months of diagnosis. We just sat there – and we didn’t know what to do.”
To make an unbearable situation even worse, they soon realised that treatment options for Jasmine’s condition on the NHS are extremely limited.
“The only thing the NHS offered was radiotherapy, that was it,” said Anthony.
“If she showed any signs of getting worse within six months they couldn’t do anything else. We were just supposed to let nature take its course.
“No parent is just going to sit there and say, ‘Ok well we’ll just get on with it then.’
“You’re going to search the ends of the earth for treatments.”
The first thing doctors told Anthony when he enquired about rolling Jasmine on the treatment was that this wouldn’t cure her.
Oncologist Dr Jasper van der Lugt says the treatment is a big burden with zero guarantees.
Some patients see benefits for a long time, others none at all: “But it’s good to have hope. And at a minimum we learn from it.”
Why families look abroad
In the UK, clinical trials or alternative treatments are exceptionally hard to come by, so like many families, they began looking abroad.
Families, charities and MPs have all lamented the lack of clinical trials and brain tumour research in the UK.
Brain tumours kill more children and adults under the age of 40 than any other cancer, but just 1.3% of the national spend on cancer research has been allocated to the disease since records began in 2002.
A report by the All Party Parliamentary Group for Brain Tumours this year found a number of issues, from too much red tape, no up-to-date database to collate the trials on offer, and crucially not enough money going into brain cancer research.
Five years ago, the government announced £40m of funding for brain cancer research, but just £11.3m of this has been spent.
For families looking for alternative treatment abroad, the treatments can be prohibitively expensive.
Thanks to the generosity of friends and strangers alike, Jasmine’s campaign has fundraised nearly a quarter of a million pounds. But others may not be so lucky.
Then, there is the pain of traveling abroad.
‘Extra stress’
Mark Thompson was 33 year olds old when five years ago he was diagnosed with a grade-three astrocytoma – another type of aggressive brain tumour.
He was only offered radiotherapy and chemotherapy on the NHS, and told he had an estimated three to five years to live. He sought a second opinion and fundraised for privately funded immunotherapy treatment in Germany.
“Being away from the family was horrible. The first time I had to go over to Germany was for 10 days straight, and that was terrible,” he said.
“It was extra stress, having to plan the hotels, the flights, the car hire, and then we tried a different avenue to save money, so we started driving out there – those journeys took about 12 hours each way.”
It cost £120,000, but for now, his scans show no signs of cancer.
Where would he be without this treatment? He doesn’t want to think about it.
What’s going wrong?
Hugh Adams, from the charity Brain Tumour Research, said many of the barriers are “to do with rigid thinking” and a resistance to innovate or prioritise – which explains the lack of a useable database.
But pharmaceutical companies say there are other barriers to operating here.
Biodexa Pharma, based in Cardiff, is currently two running clinical trials for brain tumour treatment, but instead of holding the trails for UK patients at home, they’re happening out in the US.
Dr Dmitry Zamoryakhin, the company’s chief scientific officer, told Sky News the process for approving a clinical trial is much faster in the US – 30 days compared roughly six months in the UK.
He added: “This, also coupled with the consequences of Brexit, makes the UK not an attractive place to conduct clinical trials.”
A spokesperson for the Department of Health and Social Care pointed out the £40m allocated to research the “devastating disease”, and added: “We’ve invested in every suitable research application made and the funding will continue to be available for further studies to develop new treatments and therapies for brain tumours.
“To encourage further successful applications, we are investing in infrastructure, workshops for researchers and training for clinicians.”
A few days after the trip to the Netherlands, Jasmine’s family got some hopeful news: her tumour had shrunk by 25% – so she can continue to receive treatment.
“We’re over the moon,” said Anthony.