‘You’re going to search the ends of the earth’: Why families travel abroad for brain cancer treatment
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.”
Jasmine Freeman was diagnosed with a brain tumour in February
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.”
Jasmine with her father Anthony Freeman
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
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.”
Jasmine is continuing to receive treatment in the Netherlands
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.
It’s like The Godfather, one reformed drug trafficker tells me.
The mythical gangster film centred on an organised crime dynasty locked in a transfer of power.
Communities in Scotland currently have a front row seat to a new war of violence, torture, and taunts as feuding drug lords and notorious families grapple for control of Glasgow and Edinburgh.
There have been more than a dozen brutal attacks over the past six weeks – ranging from fire bombings to attacks on children and gun violence.
A firebomb attack in Scotland
Victims left for dead, businesses up in flames
Gangsters have filmed themselves setting fire to buildings and homes connected to the associates and relatives of their bitter rivals.
The main aim, they boast, is to “exterminate” the opposition.
The taunting footage, accompanied by the song Keep On Running by The Spencer Davis Group, has been plastered over social media as part of a deliberate game of goading.
A 12-year-old boy and 72-year-old woman were left for dead when teenagers wearing balaclavas burst into a home in north Glasgow.
Garages and businesses have gone up in flames. Shots were fired at an Edinburgh house.
Signals are being sent of who wants control of Scotland’s dark criminal underworld.
A firebomb attack that saw a man throw an incendiary device through a building window
The fire attack set to the song Keep On Running by The Spencer Davis Group
What’s caused the gang war?
The former director of the Scottish Crime and Drug Enforcement Agency, Graeme Pearson, explains how a “vacuum of leadership” is playing a part.
Last October, Glasgow-based cocaine kingpin Jamie Stevenson, known as The Iceman, was jailed after orchestrating a £100m cocaine shipment stashed in banana boxes from South America.
The mob leader was one of Britain’s most wanted, running his business like another on-screen criminal enterprise: The Sopranos.
The 59-year-old fugitive went on the run before eventually being hunted and apprehended by police while out jogging in the Netherlands.
Jamie Stevenson. Pic: Police Scotland
Pic: Crown Office
‘Old scores to settle’
But paranoia was running rife about how this notorious gangster could be brought down. Was there a grass? Was it one of their own?
It further fuelled divisions and forced new alliances to be forged across Scotland’s organised criminal networks.
It wasn’t until The Iceman case came to court that it was revealed an encrypted messaging platform, known as EncroChat, had been infiltrated by law enforcement.
It ultimately led to Stevenson pleading guilty.
Ex-senior drug enforcement officer Mr Pearson told Sky News: “It is a complex picture because you have got people who are in prison who still want to have influence outside and look after what was their business.
“On the outside you’ve got wannabes who are coming forward, and they think this is an opportunity for them, and you have got others have old scores to settle that they could not settle when crime bosses were around.”
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Graeme Pearson
Mr Pearson describes a toxic mix swirling to create outbursts of violence unfolding in Scotland.
He concluded: “All that mixes together – and the greed for the money that comes from drugs, and from the kudos that comes from being a ‘main man’, and you end up with competition, violence, and the kind of incidents we have seen over the past four to six weeks.”
New wave of violence ‘barbaric’
Glasgow man Mark Dempster is a former addict, dealer, and drug smuggler who is now an author and respected counsellor helping people quit drinking and drugs.
He describes the “jostle for power” as not a new concept among Glasgow’s high profile gangland families.
Mark Dempster
“There is always going to be someone new who wants to control the markets. It is like The Godfather. There is no difference between Scotland, Albania, or India,” he said.
Mr Dempster suggests a shift in tactics in Glasgow and Edinburgh in recent weeks, with 12-year-olds being viciously attacked in the middle of the night.
“It is barbaric. When young people, children, get pulled into the cross fire. It takes it to a different level.
“At least with the old mafiosa they had an unwritten rule that no children, no other family members. You would deal directly with the main people that were your opposition.”
Police Scotland is racing to get control of the situation, but declined to speak to Sky News about its ongoing operation.
It has been suggested 100 officers are working on this case, with “arrests imminent”.
But this is at the very sharp end of sophisticated criminal empires where the police are not feared, there are fierce vendettas and, clearly, power is up for grabs.
UK
Laws may need to be bolstered to crack down on exploitation of child ‘influencers’, senior MP suggests
Laws may need to be strengthened to crack down on the exploitation of child “influencers”, a senior Labour MP has warned.
Chi Onwurah, chair of the science, technology and innovation committee, said parts of the Online Safety Act – passed in October 2023 – may already be “obsolete or inadequate”.
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Experts have raised concerns that there is a lack of provision in industry laws for children who earn money through brand collaborations on social media when compared to child actors and models.
This has led to some children advertising in their underwear on social media, one expert has claimed.
Those working in more traditional entertainment fields are safeguarded by performance laws, which strictly govern the hours a minor can work, the money they earn and who they are accompanied by.
The Child Influencer Project, which has curated the world’s first industry guidelines for the group, has warned of a “large gap in UK law” which is not sufficiently filled by new online safety legislation.
Official portrait of Chi Onwurah.
Pic: UK Parlimeant
The group’s research found that child influencers could be exposed to as many as 20 different risks of harm, including to dignity, identity, family life, education, and their health and safety.
Ms Onwurah told Sky News there needs to be a “much clearer understanding of the nature of child influencers ‘work’ and the legal and regulatory framework around it”.
She said: “The safety and welfare of children are at the heart of the Online Safety Act and rightly so.
“However, as we know in a number of areas the act may already be obsolete or inadequate due to the lack of foresight and rigour of the last government.”
Victoria Collins, the Liberal Democrat spokesperson for science, innovation and technology, agreed that regulations “need to keep pace with the times”, with child influencers on social media “protected in the same way” as child actors or models.
“Liberal Democrats would welcome steps to strengthen the Online Safety Act on this front,” she added.
‘Something has to be done’
MPs warned in 2022 that the government should “urgently address the gap in UK child labour and performance regulation that is leaving child influencers without protection”.
They asked for new laws on working hours and conditions, a mandate for the protection of the child’s earnings, a right to erasure and to bring child labour arrangements under the oversight of local authorities.
However, Dr Francis Rees, the principal investigator for the Child Influencer Project, told Sky News that even after the implementation of the Online Safety Act, “there’s still a lot wanting”.
“Something has to be done to make brands more aware of their own duty of care towards kids in this arena,” she said.
Dr Rees added that achieving performances from children on social media “can involve extremely coercive and disruptive practices”.
“We simply have to do more to protect these children who have very little say or understanding of what is really happening. Most are left without a voice and without a choice.”
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The researcher pointed to one particular instance, in which children were advertising an underwear brand on social media.
She said: “The kids in the company’s own marketing material or their own media campaigns are either pulling up the band of the underwear underneath their clothing, or they’re holding the underwear up while they’re fully clothed.
“But whenever you look at any of the sponsored content produced by families with children – mum, dad, and child are in their underwear.”
Dr Rees said it is “night and day” in terms of how companies are behaving when they have responsibility for the material, versus “the lack of responsibility once they hand it over to parents with kids”.
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