Posted on Tuesday 23 May 2023
Young Lives vs Cancer launches Running on Empty campaign
Almost three quarters of young cancer patients and their families struggling with cost of travelling to treatment, charity finds
- Children and young people with cancer (0-25) and their families spend an average of £250 a month on travel to and from treatment including petrol, congestion charges, public transport and taxi fares
- 71% of families say they’re struggling to meet these travel costs
- One in 10 have even missed or delayed a treatment appointment because they couldn’t afford it
Young Lives vs Cancer, the UK’s leading charity for children and young people (0-25) with cancer and their families, has today launched a campaign calling on the government for a Young Cancer Patient Travel Fund. The campaign, which asks for better financial support towards travel costs to treatment, comes after findings show seven in 10/almost three quarters of young people with cancer and families are struggling with travel costs during treatment and one in ten have missed or delayed treatment as they could not afford the travel.
New research conducted by Young Lives vs Cancer found that young people and families of children with cancer spend an average of £250 a month on travel costs including petrol, congestion charges, public transport and taxis, and have to travel an average of 350 miles a month. Families are having to find this extra £250 a month as well as other costs that come with a cancer diagnosis such as rising heating bills to keep their child warm during treatment and food while in and out of hospital, which has only become tougher amid the cost-of-living crisis.
Young Lives vs Cancer has launched a petition calling for better financial support to help young people and families face the costs of travel.
Rizwana, from East London, has had experience of the impact of these travel costs ever since her two-year-old daughter Aasiyah was diagnosed with Wilm’s tumour (kidney cancer) at the end of last year.
Since diagnosis, all of Aasiyah’s treatment has been at Great Ormond Street Hospital. Rizwana and her daughter have had to travel to and from hospital every week for chemotherapy, which is over an hour of driving each way.
In March of this year, Aasiyah underwent two weeks of daily radiotherapy, which meant leaving home by 7:30am each day to get to hospital for 9am, and most days not getting home until 6pm.
“The journeys were always in rush hour, and I was the one driving her there and back every day. Those 2 weeks were tiring and rough for both of us as she was being put under anaesthetic every day during that treatment”
Beyond the emotional and physical toll, the financial impact of Aasiyah’s treatment was immense on Rizwana and her family.
“The petrol costs were a lot, every two weeks I was filling up a full tank it would be £80. I was not really using the car before.”
“I had to borrow money off my sister to help with some of the costs and my credit card bill is to the max. We had to put a hold on our mortgage. I have gotten into debt because of it.”
Young Lives vs Cancer provide one-off financial grants to young people with cancer and their families to help face the costs of cancer. However, they are not a long-term solution and while they can help one month, some children and young people’s treatment can go on for years.
Kathryn, 22 from Flintshire, also experienced the impact of travel costs when she was diagnosed with Hodgkin’s lymphoma. Kathryn received the diagnosis news a week before her university exams after feeling unwell during the second year of her degree. After receiving her unimaginable diagnosis, Kathryn went home to North Wales to live with her family. She went on to have treatment in Manchester, which meant travelling 50 miles to and 50 miles from hospital sometimes several times a week.
Kathryn said: “My cycles were in two week increments so the first week Monday, Tuesday, Wednesday I had to go back and forth and then the next week it was just the Monday so four times every two weeks making that journey each time, it was exhausting.”
As well as being emotionally and physically exhausting, it was also expensive. While Kathryn’s Young Lives vs Cancer social worker helped them to organise claiming some money back through the hospital’s travel desk, it didn’t cover the full amount.
As well as fuel costs, Kathryn’s family car broke down multiple times on their way to and from hospital, which led to them having to borrow money from family to buy a new car.
Helen Gravestock, Director of Policy, Influencing and Voice at Young Lives vs Cancer says: “When a child or young person is diagnosed with cancer, they are full of fear of the treatment, its side effects and the impact it will have on their family and friends. The last thing they or their families should be worrying about is whether they can afford to travel to hospital for their treatment.
“It’s awful that we continually hear from families struggling financially while facing cancer treatment, and travel costs play a huge part in this. Having to spend £250 a month on travel alone has left many young people and families running on empty not only financially but emotionally and physically too. This has been the reality for years, even before the cost-of-living crisis which is only making things worse. Knowing young people and families are making the tough decision to miss or delay treatment because of these mounting costs just isn’t right.
“Young people with cancer and their families need better financial support to face these travel costs. We believe a Young Cancer Patient Travel Fund is the solution to ensure they don’t need to worry about the costs and can focus on what matters, getting better.”
The establishment of the Taskforce comes after almost two years of campaigning by Young Lives vs Cancer and Children’s Cancer and Leukaemia Group (CCLG), who together have been calling on UK government to implement a dedicated Children and Young People’s Cancer Plan.
Dominique Davis will take up her new role at the end of January