On average, parents who have a child with cancer travel an additional 440 miles per month for specialist treatment, with 8% travelling 1000 miles or more, according to survey results released today by children and young people’s cancer support charity CLIC Sargent .
Last year research from CLIC Sargent revealed that parents face extra living expenses of £600 a month when their child is on treatment, plunging 3 in 5 into debt, with the top extra expense found to be spending on additional travel at £131 per month .
Now the charity’s new online survey has revealed that just 6% of parents have received help from the NHS’s Healthcare Travel Costs Scheme (HTCS), the national assistance scheme that reimburses hospital travel costs. And 78% of those polled were unaware the HTCS scheme even existed.
This is despite over 40% of respondents stating that assistance from the Government with travel expenses could help them better cope financially.
Families left struggling
CLIC Sargent argues that with a maximum household income threshold of just £16,000 to qualify for the HTCS, too many families where a child has cancer are left struggling without the financial support they need.
The new survey found that 66% of families rely on some form of non-state assistance in order to meet additional travel costs during treatment, for example, charity grants, help from friends and family, and loans.
CLIC Sargent is calling on governments across the UK to conduct urgent reviews of all travel assistance available to parents and young cancer patients to help them meet extra costs, and the charity’s Cancer Costs petition, due to be handed-in to 10 Downing Street next week (10 July), currently has over 10,000 signatures.
Clare Laxton, Assistant Director of Policy and Influencing at CLIC Sargent said:
“Parents are routinely traveling hundreds of miles for their child’s cancer treatment every month, and despite the huge financial burden this causes, tell us they are left largely unsupported by existing government schemes."
“Too many are left relying heavily on charities, family and friends or credit cards to meet travel costs when they could be better supported by government schemes, there to help those in need.
“With a large proportion of families we asked not knowing about the scheme and many families not eligible for some assistance there is a clear need for governments across the UK to review the travel assistance schemes that currently exist and whether they are getting to the people that really need them.”
This week, ahead of the hand-in of CLIC Sargent’s Cancer Costs petition, parents across the UK are speaking out about how the issue affects them to encourage even more people to show their support by signing the petition.
£350 a month on train fares
Eliza, four, from Shipley, West Yorkshire has three siblings and was diagnosed with bilateral retinoblastoma, eye cancer, when she was just a couple of months old in 2012. The longest she has ever been off treatment is nine weeks. Treatment at a specialist hospital in London means that recently, the family has been paying up to £350 per month in rail fares, and relying on charities to help them meet this huge extra expense.
For the first year of Eliza’s treatment her dad Jamie was studying to become a physiotherapist, so the family income was low enough to qualify for the HTCS and all travel expenses were reimbursed. But when his studies finished and he started to work they lost that help completely, and are now under serious financial pressure.
Part-time Nurse Lucy Deakin, Eliza’s mum, explains:
“Over the years we must have spent thousands and thousands on train tickets. They have eaten up all our savings, and we use our credit card a lot."
“The cost is a constant worry but thank goodness we’ve had financial support from charities to help us cope. Even so, we have had to cut back to the essentials. I feel sad that our other children have missed out on things, because we just don’t have the money.
“The threshold to get support for travel expenses is too low and it's something that I talk about a lot with other families at the hospital. We don’t even have the worst of it. I know families who are flying down from Scotland for treatment in London!
“I think the current system is designed more for people who can’t afford a bus fare to the local hospital, rather than families like ours who are doing really long trips for specialist cancer treatment over the course of many years, and it needs reform.
“Some extra help could make all the difference and I hope the Government eventually take some notice of families in situations like ours! Please sign the petition to show your support for families like ours struggling with all the extra travel costs a cancer diagnosis brings.”
Reece Holt, 11, from Overton, Lancashire was diagnosed with a brain tumour in May 2016. He was transferred to Alder Hey Children’s Hospital in Liverpool, a 130-mile round-trip away from their home. After surgery he needed radiotherapy at Clatterbridge Hospital on the remainder of the tumour, an 180-mile round-trip away. Treatment took place five days a week for six weeks, and the family paid out £30 - £40 a day on their credit card for petrol.
Rachel said: “Financially the extra costs we’ve had during Reece’s treatment have been difficult. Before this happened we had no comprehension of how much it would all cost. Rachel, our CLIC Sargent Support Worker has been a big help with that side of things.
“During Reece’s treatment, we spent every penny of our savings, borrowed from our family, and our credit card balance went from zero to £1,600 in six months."
"I’d never used our credit card before, but without it I would have struggled to even get Reece to hospital for treatment.
“Rachel arranged a charity grant to pay for some of the fuel, so that we didn’t have so much debt hanging over us as well as the stress of Reece’s treatment, which was a huge help, and she helped us apply for benefits to help with all the extra costs we had.
“We wouldn’t have been eligible for the Healthcare Travel Costs Assistance Scheme, but some extra financial help could have really made this total nightmare less stressful, and I hope the Government take a serious look at the issue.”
CLIC Sargent provides a £170 grant to families following diagnosis, to help with initial costs, and gave out £1.1 million in grants in 2015/16. It also provides free accommodation at 10 Homes from Home around the UK near hospitals where children are treated for cancer, which save families from paying expensive hotel bills. CLIC Sargent also funds support workers who help people claim the sickness benefits they are entitled to, and provide emotional support.
Sign the Cancer Costs petition and add your name to the 10,000 others calling for change.
 As part of our ongoing Cancer Costs campaign, we developed an online survey around the costs of travel during a child’s cancer diagnosis. The survey was promoted on our website, social media channels and through CLIC Sargent’s networks. 106 parents/carers from across the UK responded to the survey.
To produce our Cancer Costs report, we conducted interviews with parents/carers), young people, and CLIC Sargent staff. We also developed two online surveys (one for young people and one for parents/carers) around the costs of cancer which were completed by 149 young people and 279 parents/carers across the UK. Recruitment took place through CLIC Sargent networks and social media channels.
For more information, photographs or interviews please call Claire Monger in the PR team on 020 8752 2938 / 07932 666 163 or email firstname.lastname@example.org
About cancer in children and young people
Today, 11 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.
About CLIC Sargent
When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit www.clicsargent.org.uk