Parents facing debts over travel costs for child cancer treatment

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Parents of children with cancer are spending thousands on travel to access treatment, new research has revealed, with many plunging into debt to meet their child’s healthcare needs.

The study, from charity Clic Sargent, found that families travel an extra 440 miles on average for their child’s cancer treatment, with eight per cent travelling 1,000 miles of more.

Now, as it emerges just six per cent of parents nationwide are receiving help for travel costs from the NHS, the study has found that some have been left in debt and reliant on credit cards to ensure their child can attend hospital.

“Parents are routinely travelling 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,” said Clare Laxton, assistant director of policy and influencing at Clic Sargent. “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.”

The research from Clic Sargent found that 78 per cent of people surveyed were unaware the NHS’s Healthcare Travel Costs Scheme (HTCS), which can help with travel costs for families with incomes up to £16,000, even existed.

“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,” said Ms Laxton.

Among those backing calls for an urgent review is Lucy Deakin from Shipley, a nurse whose four-year-old daughter Eliza was diagnosed with eye cancer as a baby. The family travel face monthly travel costs of £350 to get to London from West Yorkshire for treatment.

“Over the years we must have spent thousands on train tickets,” said Ms Deakin. “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.”

Since her diagnosis with bilateral retinoblastoma in January 2013 the longest Eliza has ever been off treatment is nine weeks.

For the first year of Eliza’s illness her father Jamie was studying to become a physiotherapist, which meant the family income was low enough to qualify for the NHS scheme and their travel expenses were reimbursed. But when his studies finished and he started to work they lost that help completely.

“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,” said Ms Deakin. “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.”

Last year CLIC Sargent supported 565 children and young people with cancer and their families in Yorkshire and the Humber. The charity is now calling for an urgent review of all travel help available through its Cancer Costs campaign and petition, to be presented to Downing Street next week.