Distraught families of brain tumour victims are having to raise vast sums for treatment abroad due to broken Tory pledges.
Faced with emotional turmoil, many are being pushed to – and beyond – the financial brink after promises of extra research funding failed to materialise.
One family alone has raised a third of a million pounds to get treatment overseas because it is not available here.
In 2018 the Government vowed to spend an extra £40million over five years in memory of Labour peer Tessa Jowell, who died from the cancer.
But four years later, less than £10million has arrived.
Brain tumours kill more children and adults under the age of 40 than any other cancer.
Yet just 1% of the national spend on cancer research since 2002 has gone to fighting this disease – leaving the UK far behind the US, Japan and Germany in treatments on offer.
In 2021 the amount for research was lifted from £14.2million to £15.5million.
But that it is still only 2.3% of the national spend on cancer research and less than half the sum campaigners are calling for.
Charities say the number of patients diagnosed is increasing, yet research funding still lags behind other cancers.
Government data shows 11,400 in the UK are diagnosed with a brain tumour each year and just 14% survive their disease for 10 or more years.
Jess Mills, who founded the Tessa Jowell Brain Cancer Mission in memory of her mother, said: “Nothing can prepare a patient or family for the bomb that detonates in your life when your most loved person is diagnosed with brain cancer. And in the case of children particularly, it is the stuff of nightmares.
"My mum’s vision was that the latest and greatest science should be available to all patients in their local hospital, so families are not forced to travel at huge cost and stress around the world in the pursuit of hope and other options that don’t exist here.”
Grace Kelly, 11, from Leicestershire, and her family have had to travel to the German city of Cologne to seek alternative therapies, such as immunotherapy and peptide vaccine treatment, for her tumour.
Meanwhile, Louise Fox, 47, from Bedfordshire, has raised an astonishing £330,000 and uprooted her family to fly to Los Angeles for several months while her desperately ill son George, 13, undergoes a clinical trial of CAR T-cell therapy not available in the UK.
Louise said: “It would mean the world to have more funding. Sadly, you don’t know how bad it is until you’re in it.
“We’re not going to be the only family to find themselves in this position. If the world can get together and find a cure for Covid, why is the world not getting together to find a cure for this massive killer?”
Keira Johnson, of Liverpool, waved son Max off to school this month, but the feeling of pride was bittersweet.
Max, five, was diagnosed with a brain tumour when he was 17 months old. He has had four tumours removed after the cancer kept returning.
Keira, 39, said: “I was bursting with pride to see he was able to do something with his friends.
“But it’s not nice living three months at a time knowing it could come back. I wish there were more treatments here so we wouldn’t have to raise thousands of pounds to go to the US if his tumour comes back.”
Families say surgery, chemotherapy and radiotherapy can remove or reduce a tumour but, unlike some pioneering treatments available abroad, cannot stop the cancer coming back.
Charity Brain Tumour Research is campaigning to “level up” investment in brain tumour research to £35million a year – in line with leukaemia.
Campaigners say the current £15.5million is way too low – while the types of treatment available on the NHS have hardly changed in 20 years.
Hugh Adams, from BTR, stressed the importance of experimental research to create new cures, saying: “Without new discoveries, the outlook for patients with brain tumours is very bleak. Whilst high risk, where successful, discovery science can lead to significant progress, new ways of thinking and new treatment strategies.”
Labour’s Wes Streeting, the Shadow Health Secretary, said: “The UK’s status as a leader in medical science and research and development is under threat from the Conservatives’ lack of ambition.
“The Government must honour its promise and the memory of the wonderful Tessa Jowell.”
The Department of Health and Social Care said: “We have redoubled our efforts to find therapies and new treatments.
“We are supporting the research community working on brain cancer by funding every single high-quality research request in this area and providing research training for practising doctors.”
Brave kids who need treatment
Grace Kelly, 11, Leicestershire
Grace’s family are desperately trying to raise £200,000 to pay for immunotherapy treatment in Germany to fight her glioblastoma multiform tumour.
Mum Vanessa says treatment includes bespoke vaccines and electro-hyperthermia.
Diagnostics cost £9,500 and the treatment and vaccines range from £1,100 to £25,000.
Grace would need four rounds. So far, the family has £23,000. It was on a trip to the opticians that a swelling behind Grace’s eye was spotted. She had surgery last September and was given 12-15 months to live.
Vanessa, 32, of Great Glen, Leics, said: “We were petrified, crying all the way home, trying to gather ourselves together to break the news to Grace. Brain cancer is one of the biggest killers of under 40s and children and it’s shocking that the treatment hasn’t changed much and they’re not sinking money into it.”
Vanessa and husband John, 42, were told radiotherapy and chemotherapy was unlikely to help Grace in the long run.
Alexander Josephs, 8, South East London
The Josephs family raised £130,000 to have Alexander cared for abroad – after being shocked by the limited treatment on offer in the UK.
The lad – who dreams of being a builder – was diagnosed with a brain tumour 13 months ago.
He had an op, then learned a glioma of the brain gave him a small chance of survival. But radiotherapy was the only NHS option – with a 20% chance of reducing the tumour. Mum Rhonda, 44, said: “I was absolutely shocked. I know there have been cutbacks but I assumed they were still pulling out all the stops for children.”
Rhonda and Alexander’s dad Jermaine, 45, set up a GoFundMe page to pay for dendritic cell therapy in Germany.
After consulting a US doctor and spending £66,000, Alexander went on the first clinical trial of inhibitor therapy in a child – after radiotherapy at Royal Marsden Hospital.
His spine cancer is fading and his brain tumour is shrinking. Rhonda added: “Inhibitor is not known to cure, so we’re hoping for miracles.”
George Fox, 13, Bedfordshire
Plucky George Fox and his family have just flown out to Los Angeles – in the hope of a cure they could not get back home.
The 13-year-old had 99% of a brain tumour removed last April, only to learn he still had an aggressive glioblastoma.
Mum Louise, 47, said: “It was devastating. Our whole world came crashing down.”
Last May the teen – a huge Arsenal fan and nicknamed “gorgeous George” – was given 12-15 months to live.
Louise added: “We were told, ‘Don’t go searching for a cure’, or ‘You’re wasting your time, just go home and enjoy your son’. We were given no hope.”
But George has now been selected for a clinical trial of CAR T-cell therapy in LA – after Louise and husband Matt, 51, set up a GoFundMe page with a £500,000 target. They have raised £330,000.
The family are angry more treatments are not available here. Louise went on: “He’s had two major brain surgeries, three lots of chemo, six weeks’ intensive radio and chemotherapy, at least 12 MRIs, immunotherapy in Germany, seizures, excruciating headaches, weeks in hospital. It’s too much for anyone to deal with, let alone a child.”
