‘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.
UK
Transport Secretary Louise Haigh admits pleading guilty to offence in connection with misleading police in 2014
Transport Secretary Louise Haigh has admitted pleading guilty to an offence connected with misleading the police while a parliamentary candidate in 2014, Sky News can reveal.
Sky News understands Ms Haigh appeared at Camberwell Green Magistrates’ Court six months before the 2015 general election, after making a false report to officers that her mobile phone had been stolen.
Ms Haigh said she was “mugged while on a night out” in 2013. She then reported the incident to the police and gave officers a list of items she believed had been taken – including a work mobile phone.
In a statement to Sky News, the transport secretary said she discovered “some time later” that “the mobile in question had not been taken”.
She added: “In the interim, I had been issued with another work phone.”
The transport secretary said: “The original work device being switched on triggered police attention and I was asked to come in for questioning.
“My solicitor advised me not to comment during that interview and I regret following that advice.
“The police referred the matter to the CPS and I appeared before Southwark magistrates.”
Ms Haigh continued: “Under the advice of my solicitor I pleaded guilty – despite the fact this was a genuine mistake from which I did not make any gain.
“The magistrates accepted all of these arguments and gave me the lowest possible outcome (a discharge) available.”
It’s understood her conviction is now classified as ‘spent’.
However, three separate sources claimed she made the false report to benefit personally, with two of the sources alleging she wanted a more modern work handset that was being rolled out to her colleagues at the time.
The now cabinet minister had been working as a public policy manager at Aviva, but two sources said she lost her job at the insurance firm because of the incident.
Her government profile states she left this role in 2015 before becoming the MP for Sheffield Heeley at that year’s general election.
Sky News understands the incident was disclosed in full when Ms Haigh was appointed to the shadow cabinet.
In the statement given to Sky News, the transport secretary said: “I was a young woman and the experience was terrifying.”
Conservative Party Chairman Nigel Huddleston told Sky News the revelations are “extremely concerning”.
He added: “Keir Starmer has serious questions to answer regarding what he knew and when about the person he appointed as transport secretary admitting to having misled the police.”
Before entering politics, the transport secretary was a special constable in the Metropolitan Police – serving between 2009 and 2011 in the South London Borough of Lambeth, close to where she was convicted several years later.
Louise Haigh was a special constable from 2009-2011. Pic: www.louisehaigh.org.uk
She was appointed shadow policing minister by Jeremy Corbyn in 2017 and frequently drew on her experience in the Met when challenging the Tory government on the rising demands on officers.
As transport secretary, Ms Haigh appoints members of the board that oversees the British Transport Police.
In 2019 she said that Boris Johnson had “deceived the police” and committed a “serious breach of trust” over claims he politicised serving officers during a speech in West Yorkshire.
Sir Keir Starmer promoted the Sheffield MP to shadow Northern Ireland secretary in 2020 before moving her to shadow transport secretary in 2021.
In this brief she has been an outspoken critic of the mass sacking of 800 workers by P&O Ferries in 2022.
In October, while transport secretary, she accused P&O of being a “rogue operator” and called for a boycott of its services.
The comments caused the firm’s Dubai-based owner to review a planned £1bn UK port investment – something that was re-confirmed after ministers held urgent talks with the company.
Louise Haigh has been the Member of Parliament for Sheffield Heeley since 2015
But she was publicly rebuked by Sir Keir who said her opinions were “not the view of the government”.
With connections to former Downing Street chief of staff Sue Gray, there has been speculation her cabinet role could be under threat in a future reshuffle.
Ms Gray’s son, Labour MP Liam Conlon, is Ms Haigh’s parliamentary private secretary and acts as her “eyes and ears” in parliament, while another of her former employees also worked for the former chief of staff before she was sacked after losing a power struggle within Number 10.
As transport secretary, Ms Haigh was one of a handful of cabinet ministers who complained to the Treasury about impending cuts in the budget.
She is considered to be one of the more left-wing members of the cabinet and has vowed to “rip up the roots of Thatcherism” with her plans for rail and bus reform.
In 2015, Ms Haigh was one of a number of Labour MPs to nominate Mr Corbyn for leader – a decision she later said she regretted.
UK
MasterChef’s Gregg Wallace steps down as Kirsty Wark among 13 who claim he made inappropriate sexual jokes
MasterChef host Gregg Wallace has stepped down over allegations he made a series of inappropriate sexual comments on a range of programmes over 17 years.
Broadcaster Kirsty Wark is among 13 people who have made claims, with Wallace being investigated by MasterChef’s production company Banijay UK.
In an interview with the BBC, the Newsnight presenter, who was a celebrity contestant on MasterChef in 2011, claimed Wallace used “sexualised language”.
“There were two occasions in particular where he used sexualised language in front of a number of people and it wasn’t as if it was anyone engaged with this,” Wark said.
“It was completely one-way traffic. I think people were uncomfortable and something that I really didn’t expect to happen.”
Sky News has contacted Wallace’s representative for comment.
Kirsty Wark. File pic: PA
‘Fully cooperating’
Banijay UK said the complaints were made to the BBC this week by “individuals in relation to historical allegations of misconduct while working with Gregg Wallace on one of our shows”.
The company said the 60-year-old, who has been a co-presenter and judge of the popular cooking show since 2005, was “committed to fully cooperating throughout the process”.
“Whilst these complainants have not raised the allegations directly with our show producers or parent company Banijay UK, we feel that it is appropriate to conduct an immediate, external review to fully and impartially investigate,” the company said.
“While this review is under way, Gregg Wallace will be stepping away from his role on MasterChef and is committed to fully co-operating throughout the process.
“Banijay UK’s duty of care to staff is always a priority and our expectations regarding behaviour are made clear to both cast and crew on all productions, with multiple ways of raising concerns, including anonymously, clearly promoted on set.
“Whilst these are historical allegations, incidences brought to our attention where these expectations are not met, are thoroughly investigated and addressed appropriately.”
A BBC spokesman said: “We take any issues that are raised with us seriously and we have robust processes in place to deal with them.
“We are always clear that any behaviour which falls below the standards expected by the BBC will not be tolerated.
“Where an individual is contracted directly by an external production company we share any complaints or concerns with that company and we will always support them when addressing them.”
Previous investigation
Last month, Wallace responded to reports that a previous BBC review had found he could continue working at the corporation following reports of an alleged incident in 2018 when he appeared on Impossible Celebrities.
Wallace said those claims had been investigated “promptly” at the time and said he had not said “anything sexual” while appearing on the game show more than half a decade ago.
In an Instagram post following an article in The Sun newspaper, he wrote: “The story that’s hitting the newspapers was investigated promptly when it happened six years ago by the BBC.
“And the outcome of that was that I hadn’t said anything sexual. I’ll need to repeat this again. I didn’t say anything sexual.”
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Alongside MasterChef, Wallace presented Inside The Factory for BBC Two from 2015.
Wallace and Anne-Marie Sterpini in 2014. Pic: PA
Wallace has featured on various BBC shows over the years, including Saturday Kitchen, Eat Well For Less, Supermarket Secrets, Celebrity MasterChef and MasterChef: The Professionals, as well as being a Strictly Come Dancing contestant in 2014.
He was made an MBE for services to food and charity last year.
Recorded episodes of MasterChef: The Professionals featuring Wallace will be transmitted as planned, the PA news agency understands.
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