Posted on Tuesday 13 June 2023
Young Lives vs Cancer’s #RunningOnEmpty report looks into the impact travel costs have on young people with cancer and their families
Embargo: 00:01 Tuesday 13 June 2023
- 28-page report demonstrates need for Young Cancer Patient Travel Fund
- Young Lives vs Cancer’s campaign petition gathers over 4,000 signatures
- 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
- 27% of young people/families cut back on food to pay for travel to treatment
Young Lives vs Cancer, the UK’s leading charity for children and young people (0-25) with cancer, has launched its new #RunningOnEmpty report, detailing the impact of travel costs on young people with cancer and their families. The report comes after the charity launched its #RunningOnEmpty campaign on 23 May 2023, which includes a petition for a Young Cancer Patient Travel Fund.
The new report from Young Lives vs Cancer, which includes data gathered via a survey and research interviews with young people with cancer and families, will be presented at a Parliamentary event on Tuesday 13 June attended by MPs, as well as young people and parents/carers with experience of travel costs during treatment.
Between February and April 2023, over 250 young people with cancer and parents/carers of children with cancer took part in the charity’s survey, sharing their experience of the travel costs to get to their treatment and care. The report includes data gathered from both the survey and research interviews as well as first-hand experiences from young people and families who have had to travel for treatment and care. The new report sets out the experience of travelling to and from treatment, and the impact this is having on young cancer patients and their families.
Key findings on the direct costs of travel:
- Young people and families spent £250 on average per month to travel for cancer treatment and care
- Almost two thirds (65%) said they were forced to incur parking costs while receiving treatment
- 24% reported having to obtain a newer or more reliable vehicle to ensure they were able to get to and from their treatment
- 93% of respondents say they used a car to make all or at least part of their journeys to treatment. Participants described how public transport presented significant infection risk for young cancer patients when immunosuppressed
The report outlines the impact these travel costs have on young people’s and families’ wider finances too, with many cutting back on other expenses. Among the sacrifices that young cancer patients and their families make, the most common is going without much needed social and recreational activities.
Four in five young cancer patients and their families (82%) reported cutting back on things like holidays, leisure, entertainment and social activities, to help meet the costs of travelling to treatment. One respondent said: “Our daughter was so poorly, at one point she was on palliative care, we were like, ‘but how do you say no?’ You’ve got to be sensible because there’s not a never-ending pot of money. But also, when you think there’s a possibility your daughter is dying, you also don’t want to say ‘oh no, we can’t do that’. So that was quite difficult.”
The survey found that, while less common, there are young people with cancer and families having to cut back on things like food (27%), falling behind on bills (20%) and selling their possessions (20%) as they juggle trying to find the extra money for travel.
The research found it was common for young people and their families to struggle to see an end to the negative financial impacts, one respondent said: “we’re in financial disaster because of everything and it’s not ending […] everything else we can cope with, all the stuff that comes with the illness, but it’s the financial impact that having a sick child totally strains you.”
There are healthcare schemes providing travel support in each country in the UK, which primarily target those on lower incomes such as the Healthcare Travel Costs Scheme and non-emergency patient transport services. However, Young Lives vs Cancer’s research found that just three in 10 young cancer patients and their families (30%) were able to access any support and only 12% said it actually covered the costs for them.
Young Lives vs Cancer’s specialist social workers support young people and families with the financial impact of cancer by helping to access benefits and providing one-off financial grants. However, this support can only cover so much of the costs and many young people and families need ongoing support. This is why Young Lives vs Cancer is calling on the government for a Young Cancer Patient Travel Fund, to provide better financial support to young people with cancer and their families.
Helen Gravestock, Director of Policy, Influencing and Voice says: “Our new #RunningOnEmpty report demonstrates the vital need for better financial support for young people with cancer and families having to travel for treatment and cancer care.
“The last thing they or their families should be worrying about is whether they can afford to travel to hospital for their treatment. This is why we are asking for a Young Cancer Patient Travel Fund to provide better financial support and help young people and families focus on what matters, getting through treatment.”
Young Lives vs Cancer will be presenting the #RunningOnEmpty report to MPs from across the UK at an event in Parliament on Tuesday 13 June. Young people and parents/carers will be sharing their experiences of the impact of travel costs. Three Young Lives vs Cancer social workers will also be attending to share how they have supported young people and families facing these costs. The charity hopes the event will encourage MPs to take their ask of a Young Cancer Patient Travel Fund through Parliament, so that the government will take action.
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