‘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.
The last blast furnaces left operating in Britain could see their fate sealed within days, after their Chinese owners took the decision to cut off the crucial supply of ingredients keeping them running.
Jingye, the owner of British Steel in Scunthorpe, has, according to union representatives, cancelled future orders for the iron ore, coal and other raw materials needed to keep the furnaces running.
The upshot is that they may have to close next month – even sooner than the earliest date suggested for its closure.
Read more: Thousands of jobs at risk as British Steel consults unions over closure
The fate of the blast furnaces – the last two domestic sources of virgin steel, made from iron ore rather than recycled – is likely to be determined in a matter of days, with the Department for Business and Trade now actively pondering nationalisation.
The upshot is that even as Britain contends with a trade war across the Atlantic, it is now working against the clock to secure the future of steelmaking at Scunthorpe.
The talks between the government and Jingye broke down last week after the Chinese company, which bought British Steel out of receivership in 2020, rejected a £500m offer of public money to replace the existing furnaces with electric arc furnaces.
The sum is the same one it offered to Tata Steel, which has shut down the other remaining UK blast furnaces in Port Talbot and is planning to build electric furnaces – which have far lower carbon emissions.
These steel workers could soon be out of work
However, the owners argue that the amount is too little to justify extra investment at Scunthorpe, and said last week they were now consulting on the date of shutting both the blast furnaces and the attached steelworks.
Since British Steel is the main provider of steel rails to Network Rail – as well as other construction steels available from only a few sites in the world – the closure would leave the UK more reliant on imports for critical infrastructure sites.
However, since the site belongs to its Chinese owners, a decision to nationalise the site would involve radical steps government officials are wary of taking.
They also fear leaving taxpayers exposed to a potentially loss-making business for the long run.
The dilemma has been heightened by the sharp turn in geopolitical sentiment following Donald Trump’s return to the White House.
The incipient trade war and threatened cut in American support to Europe have sparked fresh calls for countries to act urgently to secure their own supplies of critical materials, especially those used for defence and infrastructure.
Read more:
Car manufacturers fined £461m for collusion
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Gareth Stace, head of UK Steel, the industry lobby group, said: “Talks seem to have broken down between government and British Steel.
“My advice to government is: please, Jonathan Reynolds, Business Secretary, get back round that negotiating table, thrash out a deal, and if a deal can’t be found in the next few days, then I fear for the very future of the sector, but also here for Scunthorpe steelworks.”
British Steel declined to comment.
UK
Prince Andrew’s Pitch@Palace branded ‘crude attempt to enrich himself’ as Chinese spy documents set to be released
Prince Andrew’s efforts to make money from his Pitch@Palace project have been branded as a “crude attempt to enrich himself” at the expense of “unsuspecting tech founders”, as new documents may shed more light on what he and his team have been attempting to sell.
Today is the deadline for documents to be released relating to Prince Andrew‘s former senior adviser Dominic Hampshire and his interactions with the alleged Chinese spy Yang Tengbo.
In February, an immigration tribunal heard how the intelligence services had contacted Mr Hampshire about Mr Yang back in 2022. Mr Yang helped set up Pitch@Palace China, a branch of the duke’s scheme to help young entrepreneurs.
The alleged Chinese spy, Yang Tengbo, has links with Prince Andrew
Yang Tengbo. Pic: Pitch@Palace
Judges banned Mr Yang from the UK, saying his association with a senior royal had made Prince Andrew “vulnerable” and posed a threat to national security. Mr Yang challenged that decision at the Special Immigration Appeals Commission (SIAC).
Since that hearing, media organisations have applied for certain documents relating to the case and Mr Hampshire’s support for Mr Yang to be made public. SIAC agreed to release some information of public interest. It is hoped they may include more details on deals that he was trying to do on behalf of Prince Andrew.
So what do we know about potential deals for Pitch@Palace so far?
In February, Sky News confirmed that palace officials had a meeting last summer with tech funding company StartupBootcamp to discuss a potential tie-up between them and Prince Andrew relating to his Pitch@Palace project.
The palace wasn’t involved in the fine details of a deal but wanted guarantees to make sure it wouldn’t impact the Royal Family in the future. Sky News understands from one source that the price being discussed for Pitch was around £750,000 – there are, however, reports that a deal may have stalled.
Photos we found on the Chinese Chamber of Commerce website show an event held in Asia between StartupBootcamp and Innovate Global, believed to be an offshoot of Pitch.
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Who is alleged Chinese spy, Yang Tengbo?
Documents, released in relation to the investigations into Mr Tengbo, have also shown how much the duke has always seen Pitch as a way of potentially making money. One document from 21 August 2021 clearly states “the duke needed money at the time, and saw the relationships with China through Pitch as one possible source of funding”.
But Prince Andrew’s apparent intention to use Pitch to make money has led to concerns about whether he is unfairly using the contacts and information he gained when he was a working royal.
Norman Baker, former MP and author of books on royal finances, believes it is “a crude attempt to enrich himself” and goes against what the tech entrepreneurs thought they were signing up for.
Read more:
Who is Yang Tenbo?
Virginia Giuffre says she has days to live
Emails between Andrew and Epstein revealed
He told Sky News: “The data given by these business people was given on the basis it was an official operation and not something for Prince Andrew, and so in my view, Prince Andrew had no right legally or morally to take the data which has been collected, a huge amount of data, and sell it…
“And quite clearly if you’re going to sell it off to StartupBootcamp, that is not what people had in mind. The entrepreneurs who joined Pitch@Palace did not do so to enrich Prince Andrew,” he said.
Rich Wilson was one tech entrepreneur who was approached at the start of Pitch@Palace to sign up, but he stepped away when he spotted a clause in the contract saying they’d be entitled to 2% equity in any funding he secured.
He feels Prince Andrew is continuing to use those he made a show of supporting.
He said: “It makes me feel sick. I think it’s terrible – that he is continuing to exploit unsuspecting tech founders in this way. A lot of them, I’m quite grey and old in the tooth now, I saw it coming, but clearly most didn’t. And a lot of them were quite young.
“It’ll be their first venture and you’re learning on the trot, so to speak. So to take advantage of people in such a major way – that’s an awful, sickening thing to do.”
We approached StartupBootcamp who said they had no comment to make, and the Duke of York’s office did not respond.
With reports that a deal may have stalled, it could be a big setback for the duke – especially with questions still about how he’ll continue to pay for his home on the Windsor estate now that the King no longer gives him financial support.
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