‘You’re going to search the ends of the earth’: Why families travel abroad for brain cancer treatment

Published

2 years ago

August 18, 2023

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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.

UK

Luton teenager who murdered family was planning school shooting

Published

1 hour ago

February 24, 2025

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Luton teenager who murdered family was planning school shooting

A teenager who admitted killing his mother and two younger siblings was plotting a school shooting, it can now be reported.

Nicholas Prosper, 19, appeared at Luton Crown Court over the deaths of Juliana Falcon, 48, Giselle Prosper, 13, and Kyle Prosper, 16.

Their bodies were found at a flat in Leabank, off Wauluds Bank Drive, Luton, in September.

He was also planning a shooting at St Joseph’s Catholic Primary School in Luton, where he and his siblings had all been pupils.

Headteacher Maureen Murphy said staff were “very shocked” to learn of the plot, but that there is no threat to the school.

Prosper’s harrowing plan, said to have left investigators “in shock and disbelief”, was foiled by police who spotted him in the street immediately after the murders.

He was stopped in nearby Bramingham Road, and a loaded shotgun was found hidden in bushes nearby, along with more than 30 cartridges.

As he appeared in court on Monday, Prosper spoke to confirm his identity and to plead guilty to three charges of murder.

Detective Chief Inspector Sam Khanna, from the Bedfordshire, Cambridgeshire and Hertfordshire Major Crime Unit, said: “In all my years working on murder investigations, I have never known a case quite like this.

“Not only were three innocent lives taken in such brutal circumstances, but we then learnt of Prosper’s plans to carry out a shooting at a school, something which left our whole investigation team in shock and disbelief.

“We cannot even begin to comprehend why someone would plan to kill innocent children and are so grateful to those arresting officers who helped prevent this from taking place.”

Leader of Luton Council, Hazel Simmons MBE, branded the murders as “senseless” and said their thoughts were with the victims, their family and friends.

The councillor sought to reassure parents by saying “our schools have robust systems in place to keep children safe and security is constantly reviewed and monitored”.

After recently asking schools to review their security, Ms Simmons said schools will be asked to further review their measures in light of what emerged from court on Monday.

“On behalf of the town I would like to thank and praise the excellent work of Bedfordshire Police for apprehending the perpetrator before he attempted to cause more harm.

“However, we know this case will be unsettling for parents which is why the council is working with schools to put support in place in our schools to anyone who needs it.”

Prosper also admitted a number of other offences, including purchasing a shotgun without a certificate, possession of a shotgun with intent to endanger life and possession of a kitchen knife in a public place.

He will be sentenced on 5 March and has been remanded in custody.

‘A cold-blooded attack’

Chris Derrick, a deputy chief crown prosecutor at the Crown Prosecution Service (CPS), said the victims’ lives “were stolen in a cold-blooded attack”.

Mr Derrick said in a statement “the full extent of Prosper’s actions will be laid bare when he is sentenced, and he can expect to face a very long time behind bars”.

He added: “We hope today’s conviction offers some solace to those who loved and cared for them, as they mourn their loss.”

A friend of Ms Falcon previously described her as someone who “lived for her children” and said she was “a positive person who will be so terribly missed”.

A previous statement on X from the headteacher at Lea Manor High School said they were “deeply shocked” by the death of Giselle.

“Giselle was a beautiful soul and a model pupil, she excelled in all her subjects and will be sorely missed, particularly by her friends in Year 9.”

Kyle’s school described the incident as “devastating” and offered “heartfelt condolences” to his family.

A previous statement issued by Cardinal Newman Catholic School said: “This is devastating news to all those who knew and loved Kyle and it will take some time to come to terms with the profound sense of loss.

“We know this will be a difficult time for students and staff and we will do all we can to support them with love and compassion.

“We extend our heartfelt condolences to Kyle’s family on their immeasurable loss, to his friends and to all those in neighbouring schools who are coming to terms with their own loss.”

UK

Reform in contention in potential nightmare by-election for Labour

Published

4 hours ago

February 24, 2025

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Reform in contention in potential nightmare by-election for Labour

The jailing of Mike Amesbury for 10 weeks for assault means Sir Keir Starmer potentially faces his first by-election test since becoming prime minister.

Officially, the 55-year-old former Labour MP for Runcorn and Helsby now faces a recall petition, but realistically he’s under enormous pressure to resign without delay.

Politics latest: ‘Alarm bells ringing’ for Labour

Amesbury was immediately disowned by the Labour Party, which condemned his actions in the assault as “completely unacceptable” and said it was time for a new MP.

“Local residents in the Runcorn and Helsby constituency deserved better, and we look forward to them getting the representation they deserved in the future with a new MP,” said a party spokesperson.

However, if Amesbury appeals against his sentence, as it’s being suggested he may, that would delay a by-election as a writ can’t be moved unless appeals are exhausted, or he stands down voluntarily.

Amesbury held the Cheshire seat with a seemingly healthy 14,696 majority at the July 2024 general election. But in a potential nightmare for Sir Keir, it was Reform UK – not the Conservatives – in second place.

A challenge for Labour – but Tories in disarray

The current state of opinion polls, with Nigel Farage’s party edging ahead of Labour, suggests Reform will be in contention in a by-election and could pull off a sensational victory.

And so predictably it was Reform’s chairman Zia Yusuf who led calls from opponents for Amesbury to resign, followed by a handful of Tory backbenchers – but not by Kemi Badenoch yet.

“The great people of Runcorn deserve far better than waiting six weeks for a recall petition to take place,” said Mr Yusuf. “We call on Mike Amesbury to do the honourable thing and resign immediately.”

The risk of humiliation by Mr Farage may deter Labour big hitter Jonathan Ashworth – one of five Labour MPs defeated in July last year – from gambling on a quick return to Westminster in this seat.

The Conservatives appear to be in disarray over a potential by-election. Sky News can reveal that party HQ last week invited applications to be Tory candidate, with a deadline fast approaching.

“We are writing to invite applications for Runcorn and Helsby,” said a letter from the party’s candidates team. “We are particularly keen to see applications from people with links to the constituency.

“If you are eligible to stand and interested in applying, please apply through the Microsoft Form here and apply by no later than Tuesday 25th February at 12pm.”

When could a by-election happen?

A recall petition happens if an MP is jailed or receives a suspended sentence of a year or less. It lasts six weeks and if 10% of electors sign it, there’s a by-election – though the recalled MP can stand.

The last MP to be jailed was Tory Imran Ahmad Khan, former MP for Wakefield, who was sentenced to 18 months after being found guilty of sexually assaulting a 15-yar-old boy. Labour won that by-election.

Although Sir Keir and the Labour high command have acknowledged since Amesbury pleaded guilty that a by-election in Runcorn and Helsby was almost inevitable, the party faces a dilemma over the timing of a poll.

Labour’s statement looking forward to a new MP suggests the party favours a speedy by-election, without the delay of a recall petition, rather than waiting until the local elections on 1 May or even later.

But there are dangers in a quick poll, as Sir Keir will recall. He was advised to rush the Hartlepool by-election in 2021, with disastrous results, and he has admitted he considered quitting after that humiliating defeat.

The numbers in Runcorn and Helsby last July were Labour on 22,358 votes (52.94%), Reform 7,662, (18.14%), Conservatives 6,756, (16%), Greens 2,715, (6.43%) and Liberal Democrats 2,149, (5.09%).

Runcorn is on the southern bank of the River Mersey and has expanded as a new town since 1964, and dominates the constituency with a population of 61,000. There are two smaller towns, Frodsham and Helsby.

Amesbury became MP for the processor seat of Weaver Vale in 2017. He was a shadow minister for work and pensions under Jeremy Corbyn, and for housing, communities and local government under Sir Keir until 2022.

UK

Luton teenager who murdered family was planning school shooting

Published

4 hours ago

February 24, 2025

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A teenager who admitted killing his mother and two younger siblings was plotting a school shooting, it can now be reported.

Nicholas Prosper, 19, appeared at Luton Crown Court over the deaths of Juliana Falcon, 48, Giselle Prosper, 13, and Kyle Prosper, 16.

Their bodies were found at a flat in Leabank, off Wauluds Bank Drive, Luton, in September.

As he appeared in court on Monday, Prosper spoke to confirm his identity and to plead guilty to three charges of murder.

Assistant Chief Constable John Murphy, from Bedfordshire Police, said: “We understand the deep shock this case will have on people within Luton and across the country.

“Juliana, Kyle and Giselle were brutally murdered in their home by someone intent on causing the maximum harm and distress on not only his family, but to the wider community.

“We are extremely grateful to our officers who stopped him and prevented him from going through with his plans to target a school.

“We are working closely alongside Luton Borough Council to engage with schools in Luton to provide support, assistance and guidance to both schools and parents.”

Leader of Luton Council, Hazel Simmons MBE, branded the murders as “senseless” and said their thoughts were with the victims, their family and friends.

She then said the “revelation that the perpetrator had plans to cause further harm in one of our schools is extremely shocking, distressing and upsetting”.