Tough economic times are forcing many people to make difficult financial decisions, but for Victoria Jones, the crippling costs involved in travelling for specialist cancer care became a matter of life and death.
Her income had been reduced by her inability to work as a prison officer, but living on the Isle of Wight meant that during the height of the holiday season, the round-trip for the chemotherapy that doctors hoped would save her life often cost more than £200.
Victoria, 22, had already given up the independence of her own flat and moved in with her fiance’s family. Although she only had to pay for food and a share of the utility bills, she was still struggling to cover the cost of the fortnightly journeys to Southampton Hospital.
“It got to a point, halfway through my treatment, where I just thought, ‘You know what, I might as well just stop the treatment, take my chances and enjoy what time I’ve got left’,” she says.
Without fiance Jordan Ward, who she met just three weeks before being diagnosed with aggressive lymphoma in March last year – and the support from the Young Lives vs Cancer charity – Victoria doesn’t know how she would have got through those dark days.
“I lived with constant fear that work was going to stop my money and I wasn’t going to be able to continue my treatment. I don’t know how I would have got through it without Jordan and Kate.”
Kate is one of Young Lives’ social workers, who provide desperately needed emotional and financial support to young adults, and families of children who have been diagnosed with cancer.
This can take many forms, including one-off grants, speaking with employers and helping patients and families navigate the social welfare system to ensure they receive all the benefits they are entitled to.
Red Funnel ferries, which runs regular services between the Isle of Wight and mainland, had chosen Young Lives as the company’s charity of the year, so Kate asked if they could help – and the company offered Victoria free travel to and from Southampton for hospital appointments, as well as access to their VIP lounge.
It was an act of kindness which not only helped financially but also allowed Victoria, whose cancer is now in remission, to focus on her treatment. “It made a huge difference,” she says.
Many cancer patients struggle with loss of income and the additional travel and parking costs associated with their treatment, but research for Young Lives vs Cancer shows it’s particularly difficult for young cancer patients who, on average, travel twice as far for treatment as an adult patient.
Helen Gravestock, Director of Policy, Influencing and Voice at Young Lives vs Cancer, says: “Cancer is different for under-25 year olds. It’s really intense. The treatment often starts immediately and goes on for two or three years. It’s quite bespoke and involves travelling to a specialist hospital, which may be a long way from their hometown, on a regular basis. The needs of young people and children are really unique and need that unique support.”
That’s why, today, the charity is launching a petition urging the Government to provide more support for young cancer patients and their families. To bolster their case, Young Lives vs Cancer surveyed 259 young people, parents and carers with experience of cancer
treatment in the past two years, and the results highlight the difficulties that so many face.
On average, young cancer patients and their families spend £250 on travel and clock up around 350 miles each month for treatment. Half have to make the journey to a specialist treatment centre at least twice a week.
Shockingly, 71% of patients and families have struggled to cover travel costs, and one in 10 has been forced to delay or miss an appointment because they could not afford to travel.
On top of all of the worries that come with a cancer diagnosis and often gruelling treatment, around a third have had to borrow or take on debts to cover the cost of travelling for treatment, 27% have cut back on food, and one in five has sold possessions to make ends meet.
Helen says: “What was hard to hear for us is that families are falling into debt because of the cost of cancer.
“Not only are they managing household bills in a cost-of- living crisis, they are managing their child’s or their own cancer diagnosis. If you’ve fallen into debt and you’re getting further into debt because you’ve got those unexpected massive travel costs, it’s really difficult.
"Many patients and their families are just running on empty in terms of the stress of it all.”
Kaleigh Mason, 34, and her husband Ian, 38, are no strangers to the struggle. When their son Oliver was nine months old he got a small rash on his head that would come and go, but each time it returned, it was worse.
After months of repeated trips to their GP they were referred to a dermatologist when Oliver was two.
But in December 2021, Oliver became unwell. At first he was sick, just once a day for no apparent reason. There was no pattern and he would then be fine until the next day. He also became thirsty, sometimes drinking
six litres of water a day.
Over Christmas he got worse, but Kaleigh and Ian were told it was probably just a bug and Oliver was drinking so much because he had a sore throat.
It was another two months before they were referred to a paediatrician at Lancaster Hospital who told them Oliver had Langerhans cell histiocytosis which affects around 50 children in the UK every year. It involves an over-proliferation of immune cells which can damage bones and organs and is classified as a cancer and treated with chemotherapy.
In Oliver’s case, it also led to diabetes insipidus, which caused his unquenchable thirst and constant need to pee, which added to the stress around travelling for treatment – a round trip of more than three hours from their home in Carnforth in Lancashire to the Royal Manchester Children’s Hospital.
“We were doing that once a week for 12 weeks,” says Kaleigh. Now Oliver is on a drug trial of a new maintenance therapy which involves making the journey every three weeks for chemotherapy followed by five days of steroids.
“On top of that, every time Oliver gets a temperature we have to go to Lancaster Hospital for 48 hours.”
And this happens pretty much every time he ends a course of steroids.
Kaleigh says the car journeys for treatment can be difficult because of Oliver’s need for regular drinks and nappy changes, but hospital has become a familiar routine. “Because he’s so young, he is quite happy and oblivious to it.”
Kaleigh, an office worker, says her employers have been “amazing” and have given her paid compassionate leave to care for Oliver. But Ian is a self-employed outdoor activities instructor who is only paid when he is able to work. During the most intense phases of Oliver’s treatment, this meant a sharp drop in their income.
The couple applied for Disability Living Allowance and discovered that if you call to start the process, payments are backdated to that date, but if you apply online, they are dated from the day your application is actually processed. In their case, the difference was almost a month’s money.
This is typical of the challenges the Young Lives vs Cancer charity helps patients and their families to navigate. “No one tells you these things,” says Kaleigh. “How on earth are you meant to know things like that when you’re already dealing with treatment and everything that goes with that?”
Kaleigh and Ian heard about the charity when one of their social workers introduced herself on one of the family’s regular trips to the Royal Manchester Children’s Hospital.
“As soon as you enter this world, everything is so hard to find, but Young Lives have been amazing. They gave us a grant when our fridge freezer started overheating last summer.
“Just being able to have a conversation and have someone say ‘You’re doing all right, keep going’ can make a huge difference.”
To sign the petition or learn more, go to younglivesvscancer.org.uk
