‘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

Two children and a woman die after shooting in Northern Ireland

Published

8 hours ago

July 23, 2025

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Two children and a woman die after shooting in Northern Ireland

Two children and a woman have died in a shooting in County Fermanagh, police have said.

Two people were killed in the shooting on Wednesday morning, and a third, who was seriously injured, died in hospital in the afternoon.

A fourth person, a man, was seriously injured in the shooting in County Fermanagh, Northern Ireland.

All victims were from the same household, Superintendent Robert McGowan, district commander for Fermanagh and Omagh, said at a news conference.

Police have cordoned off the scene in the village of Maguiresbridge, about 75 miles (120km) southwest of Belfast.

“We can advise there is no ongoing risk to the public,” a Police Service of Northern Ireland spokesperson said.

There was no mention of a motive behind the shooting.

A murder investigation has been launched, with enquiries being at an early stage.

Supt McGowan said at the news conference that police don’t anticipate any arrests being made at this stage.

Emergency services were called to the Drummeer Road area of the village at around 8am on Wednesday following a report raised from the property, Supt McGowan said.

Two people were found dead at the scene, and two others seriously injured.

One patient was taken to the Royal Victoria Hospital, Belfast, by air ambulance and the other to South West Acute Hospital by ambulance. Supt McGowan said the third person died at the South West Acute Hospital.

Drummeer Road is currently closed, police said, warning that this could lead to delays on alternative roads.

Secretary of State for Northern Ireland Hilary Benn said: “The news from Maguiresbridge is tragic and deeply distressing.

“My thoughts are with the victims, their relatives and the local community in Fermanagh. I would urge the public not to speculate and to allow the PSNI to continue their investigation.”

Sinn Fein MP Pat Cullen has expressed her deep shock over the shooting, saying: “Firstly, my thoughts are with the victims and their families at this tragic time.”

DUP MLA Deborah Erskine, who represents the area in the Northern Ireland Assembly, said that the community was “stunned” by the shooting in “a rural, quiet area”.

“Everyone is deeply affected by what has happened this morning,” she said.

UK

Five ‘dangerous’ gang members guilty of murdering boy and man at music video shoot

Published

11 hours ago

July 23, 2025

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Five 'dangerous' gang members guilty of murdering boy and man at music video shoot

Five “violent” and “dangerous” gang members have been found guilty of murdering a boy and a young man at a music video shoot in a north London estate.

The men had gone to the Elthorne Estate in Archway “with the intention of killing anyone they could”, the Metropolitan Police said.

And the group mistook those they attacked for rival gang members.

Lorik Lupqi, 21; Jason Furtado, 28; Abel Chunda, 29; Xavier Poponne, 22; and Eden Clark, 31, were convicted of murdering 15-year-old Leonardo Reid and 23-year-old Klevi Shekaj and attempting to murder 28-year-old Abdullah Abdullahi.

Leonardo and Mr Shekaj were fatally stabbed and Mr Abdullahi was badly hurt when knifemen descended on the event on the night of 29 June 2023.

Leonardo and his brother had been watching a music video being filmed with friends.

Police said Lupqi, a gang member from Islington, saw the gathering at around 8.30pm and took it as an opportunity to hurt those he thought were gang opponents.

He messaged his girlfriend stating that “opps were outside”. She advised him to remain inside, but Lupqi decided to contact his close friend and gang associate Jason Furtado.

They formed a plan and recruited gang members Chunda, Clark and Poponne to travel to the estate.

Lupqi had booked a taxi to pick up the three men from the area of Furtado’s home address in Canonbury, north London, telling the cab firm: “I’m in a little bit of a rush,” the jury heard.

They had worn masks and were armed as they went to the Elthorne Estate where they met Lupqi, the court was told.

By the time they arrived, the filming had ended, and most people had left, but some local children and teenagers remained in the area.

The group then carried out their deadly attack.

The alarm was raised as a black-clad figure wearing a balaclava was spotted crouching down and moving towards Leonardo, his brother and others, with a large knife.

Three more males in black stood up from where they had been hiding behind cars as they edged towards the group, the court was told.

Leonardo was stabbed in the chest, with the wound cutting through his left lung and one of the major blood vessels in his body, causing fatal blood loss.

Leonardo’s brother had run away from the scene but later looped back and saw his sibling lying motionless on the ground, the court heard.

Mr Shekaj was stabbed in the back, with the wound cutting through his left lung and deep into his body.

He was driven to Whittington Hospital by members of the public but he died on arrival.

Detective Inspector Jim Barry said: “These violent men went into this estate with the intention of killing anyone they could, under the false impression that those there were rival gang members.

“This was a senseless, violent act which has shattered the lives of so many, especially Leonardo and Klevi’s loved ones.

“This dangerous group of men will now spend a long time behind bars but the effect of what they did will be felt by the victim’s shattered families for longer.”

The five killers will appear at the same court on 25 and 26 September for sentencing.

UK

Third person dies after shooting in Northern Ireland

Published

11 hours ago

July 23, 2025

admin

A third person has died in a shooting in Co Fermanagh, police have said.

Two people were killed in the shooting on Wednesday morning, and a third, who was seriously injured, died in the afternoon.

A fourth person was seriously injured in the shooting in County Fermanagh, Northern Ireland.

All victims were from the same household, Superintendent Robert McGowan, District Commander for Fermanagh and Omagh, said at a news conference.

They have cordoned off the scene in the village of Maguiresbridge, about 75 miles (120km) southwest of Belfast.

“We can advise there is no ongoing risk to the public,” a Police Service of Northern Ireland spokesperson said.

There was no mention of a motive behind the shooting.

A murder investigation has been launched.

Supt McGowan said at the news conference that police don’t anticipate any arrests to be made at this stage.

Emergency services were called to the shooting in the Drummeer Road area of the village at around 8am on Wednesday, a spokesperson for the Northern Ireland Ambulance Service said.

They confirmed that two people had been injured.

“Following assessment and initial treatment at scene, one patient has been taken to the Royal Victoria Hospital, Belfast, by air ambulance and another to South West Acute Hospital by ambulance,” the spokesperson added.

Drummeer Road is currently closed, police said, warning that this could lead to delays on alternative roads.

Secretary of State for Northern Ireland Hilary Benn said: “The news from Maguiresbridge is tragic and deeply distressing.

“My thoughts are with the victims, their relatives and the local community in Fermanagh. I would urge the public not to speculate and to allow the PSNI to continue their investigation.”

Sinn Fein MP Pat Cullen has expressed her deep shock over the shooting, saying: “Firstly, my thoughts are with the victims and their families at this tragic time.”

DUP MLA Deborah Erskine, who represents the area in the Northern Ireland Assembly, said that the community was “stunned” by the shooting in “a rural, quiet area.”

“Everyone is deeply affected by what has happened this morning,” she said.