Young cancer patient Dylan Jeffs led campaigners to No.10 Downing Street on Tuesday to call for support with hospital travel costs.
The brave five-year-old knocked on Rishi Sunak’s door to deliver a petition carrying more than 11,000 signatures. He was joined by lymphoma survivor Victoria Jones, 23, and representatives from Young Lives vs Cancer.
The charity is urging the Government to create a fund for cancer patients aged up to 25 to ensure they can afford to travel for care.
Its research suggests families spend an average of £250 per month on costs including petrol, congestion charges, public transport and taxis, while typically travelling 350 miles to hospital.
Dylan, from Birmingham, was diagnosed two years ago and visits Birmingham Children’s Hospital at least once a week.
His trips were more frequent while undergoing chemotherapy, costing his parents Rachael and Russell around £200 in fuel every month.
Rachael said: “Other things have to take a backseat. There might be days out or holidays that we can’t afford because that budget is taken up by travel costs.
“There are other things like he was wetting the bed more, so we needed more bedsheets, the washing machine was on more. He was on steroids so was eating more food. And then there are the travel costs on top of that.”
Dylan is now stable and going through maintenance treatment, which he is due to finish in April. Rachael added: “This is so important. It’s not just us, there are other families going through this.
“Something so simple that can make that journey a little easier, a bit of money from the Government to help with travel, would make a difference.”
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When prison officer Victoria was diagnosed two years ago, she discovered she would have to travel from her home on the Isle of Wight to Southampton for treatment.
She underwent eight cycles of gruelling chemotherapy and three weeks of radiotherapy, requiring 20 ferry trips.
Each crossing cost upwards of £200 and Victoria struggled to afford the tickets, eventually having to leave her rented flat and skip meals.
She said: “I just couldn’t find the money. It was either have the life-saving treatment or keep the roof over my head. There were countless times when I considered just stopping my treatments.
“I went into hospital one day and just completely broke down. I said: ‘I can’t cope with this anymore, I just want to stop it. I’ll take my chances and get my finances in order so my partner doesn’t have to deal with it when I’m gone.’”
Victoria was supported by a social worker Kate Wheeler from Young Lives vs Cancer, who helped her access grants to help keep her head above water.
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But the experience has left her determined to ensure other young patients do not continue to struggle. Victoria added that going through treatment meant “watching your body fall apart”.
She said: “You lose your hair. I was on steroids so I gained weight. You’re trying to cope with that, as well as the fact you feel horrendous, and then you’ve somehow got to scrape together money on top of that.
“It can be really isolating because you don’t have money to go out for coffee with friends.”
Rachel Kirby-Rider, chief executive at Young Lives vs Cancer, said children often have to travel further than adult patients to receive treatment at specialist centres.
She said: “The guiding principle of the NHS is that it is free at the point of use, but if you’re having to spend hundreds of pounds to even get through the hospital door, then that principle is not working.
“We know families are having to pay £250 on average every month just to travel to treatment. We don’t think that is right or acceptable, so we’re asking the Government to work alongside us to develop a Young Cancer Patients Travel Fund so we can help support those families.”
A Government spokesperson said: “We know people are struggling which is why we’re bearing down on inflation and providing record financial support worth an average £3,300 per household.
“We are capping bus and rail fares and people on low incomes can apply for help with their health costs through the NHS Low Income Scheme.”
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