‘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.
Four people have been charged after £7m of damage was caused to two Voyager aircraft at RAF Brize Norton.
The investigation into the incident early on Friday 20 June was led by counter-terror police.
They have been charged with conspiracy to enter a prohibited place knowingly for a purpose prejudicial to the safety or interests of the UK – and conspiracy to commit criminal damage.
Two Voyager aircraft at RAF Brize Norton were damaged. PA file pic
The four charged have been identified as:
• Amy Gardiner-Gibson, 29, of no fixed abode
• Daniel Jeronymides-Norie, 35, from London
• Jony Cink, 24, of no fixed abode
• Lewie Chiaramello, 22, from London
They will appear at Westminster Magistrates’ Court later today.
A 41-year-old woman arrested last week on suspicion of assisting an offender has been released on bail until 19 September.
Meanwhile, a 23-year-old man detained on Saturday was released without charge.
Last month’s incident at RAF Brize Norton in Oxfordshire was claimed by the activist group Palestine Action.
Yesterday, MPs voted to proscribe the group as a terrorist organisation.
The legislation passed with 385 MPs voting in favour, while 26 were against.
UK
No 10 backs Chancellor Rachel Reeves and says she ‘is going nowhere’ after tearful appearance in Commons
Rachel Reeves has not offered her resignation and is “going nowhere”, Downing Street has said, following her tearful appearance in the House of Commons.
A Number 10 spokesperson said the chancellor had the “full backing” of Sir Keir Starmer, despite Ms Reeves looking visibly upset during Prime Minister’s Questions.
Politics latest: ‘A moment of intense peril’ for PM
A spokesperson for the chancellor later clarified that Ms Reeves had been affected by a “personal matter” and would be working out of Downing Street this afternoon.
Politics latest: Reeves looks visibly upset in Commons
UK government bond prices fell by the most since October 2022, and the pound tumbled after Ms Reeves’s Commons appearance, while the yield on the 10-year government bond, or gilt, rose as much as 22 basis points at one point to around 4.68%.
Downing Street’s insistence came despite Sir Keir refusing to guarantee that Ms Reeves would stay as chancellor until the next election following the fallout from the government’s recent welfare U-turn.
Tory leader Kemi Badenoch branded the chancellor the “human shield” for the prime minister’s “incompetence” just hours after he was forced to perform a humiliating U-turn over his controversial welfare bill.
Speaking at Prime Minister’s Questions, Ms Badenoch said: “This man has forgotten that his welfare bill was there to plug a black hole created by the chancellor. Instead they’re creating new ones.”
Turning to the chancellor, the Tory leader added: “[She] is pointing at me – she looks absolutely miserable.
“Labour MPs are going on the record saying that the chancellor is toast, and the reality is that she is a human shield for his incompetence. In January, he said that she would be in post until the next election. Will she really?”
Not fully answering the question, the prime minister replied: “[Ms Badenoch] certainly won’t.
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Welfare vote ‘a blow to the prime minister’
“I have to say, I’m always cheered up when she asks me questions or responds to a statement because she always makes a complete mess of it and shows just how unserious and irrelevant they are.”
Mrs Badenoch interjected: “How awful for the chancellor that he couldn’t confirm that she would stay in place.”
The prime minister’s watered-down Universal Credit and Personal Independent Payment Bill, aimed at saving £5bn, was backed by a majority of 75 in a tense vote on Tuesday evening.
A total of 49 Labour MPs voted against the bill – the largest rebellion in a prime minister’s first year in office since 47 MPs voted against Tony Blair’s Lone Parent benefit in 1997, according to Professor Phil Cowley from Queen Mary University.
After multiple concessions made due to threats of a Labour rebellion, many MPs questioned what they were voting for as the bill had been severely stripped down.
They ended up voting for only one part of the plan: a cut to Universal Credit (UC) sickness benefits for new claimants from £97 a week to £50 from 2026/7.
Ms Badenoch said the climbdown was proof that Sir Keir was “too weak to get anything done”.
Read more:
The PM faced down his party on welfare and lost
Labour welfare cuts ‘Dickensian’, says rebel MP
Ms Reeves has also borne a lot of the criticism over the handling of the vote, with some MPs believing that her strict approach to fiscal rules has meant she has approached the ballooning welfare bill from the standpoint of trying to make savings, rather than getting people into work.
Experts have now warned that the welfare U-turn, on top of reversing the cut to winter fuel, means that tax rises in the autumn are more likely – with Ms Reeves now needing to find £5bn to make up for the policy U-turns.
Asked by Ms Badenoch whether he could rule out further tax rises – something Labour promised it would not do on working people in its manifesto – Sir Keir said: “She knows that no prime minister or chancellor ever stands at the despatch box and writes budgets in the future.
“But she talks about growth, for 14 years we had stagnation, and that is what caused the problem.”
Prosecutors are considering whether to bring further criminal charges against Lucy Letby over the deaths of babies at two hospitals where she worked
The Crown Prosecution Service said it had received “a full file of evidence from Cheshire Constabulary asking us to consider further allegations in relation to deaths and non-fatal collapses of babies at the Countess of Chester Hospital and Liverpool Women’s Hospital”.
“We will now carefully consider the evidence to determine whether any further criminal charges should be brought,” it added.
“As always, we will make that decision independently, based on the evidence and in line with our legal test.”
Letby, 35, was found guilty of murdering seven children and attempting to murder seven more between June 2015 and June 2016 while working in the neonatal unit of the Countess of Chester Hospital and is currently serving 15 whole-life orders.
Letby worked at the Countess of Chester Hospital and Liverpool Women’s Hospital
She is understood to have carried out two work placements at Liverpool Women’s Hospital, where she trained as a student, between October and December 2012, and January and February 2015.
Police said in December that Letby was interviewed in prison as part of an investigation into more baby deaths and non-fatal collapses.
A Cheshire Constabulary spokesperson said: “We can confirm that Cheshire Constabulary has submitted a full file of evidence to the CPS for charging advice regarding the ongoing investigation into deaths and non-fatal collapses of babies at the neo-natal units of both the Countess of Chester Hospital and the Liverpool Women’s Hospital as part of Operation Hummingbird.”
Detectives previously said the investigation was looking into the full period of time that Letby worked as a nurse, covering the period from 2012 to 2016 and including a review of 4,000 admissions of babies.
Letby’s lawyer Mark McDonald said: “The evidence of the innocence of Lucy Letby is overwhelming,” adding: “We will cross every bridge when we get to it but if Lucy is charged I know we have a whole army of internationally renowned medical experts who will totally undermine the prosecution’s unfounded allegations.”
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Three managers at the hospital where Lucy Letby worked have been arrested on suspicion of gross negligence manslaughter.
On Tuesday, it was confirmed that three managers at the Countess of Chester hospital had been arrested on suspicion of gross negligence manslaughter in a separate investigation.
Read more from Sky News:
‘Catastrophic failure’ that led to Heathrow power outage revealed
Man charged with murder of 93-year-old woman in Cornwall
Police said the suspects, who occupied senior positions at the hospital between 2015 and 2016, have all been bailed pending further inquiries.
There is also an investigation into corporate manslaughter at the hospital, which began in October 2023.
A public inquiry has also been examining the hospital’s response to concerns raised about Letby before her arrest.
In May, it was announced the inquiry’s final report into how the former nurse was able to commit her crimes will now be published early next year.
Earlier this year, Letby’s lawyers called for the suspension of the inquiry, claiming there was “overwhelming and compelling evidence” that her convictions were unsafe.
In February, an international panel of neonatologists and paediatric specialists told reporters that poor medical care and natural causes were the reasons for the collapses and deaths.
Their evidence has been passed to the Criminal Cases Review Commission (CCRC), which investigates potential miscarriages of justice, and Letby’s legal team hopes her case will be referred back to the Court of Appeal.
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