A MUM who has been spending up to £800 a month on rail journeys to allow her daughter to receive NHS treatment for a rare form of eye cancer today called on the Government to provide extra help with travel costs.

Lucy Deakin, from Shipley, whose four-year-old daughter Eliza was diagnosed with bilateral retinoblastoma as a baby, spoke of her family’s financial struggle as she backed a petition started by charity CLIC Sargent calling for an urgent review of assistance available to families in her situation.

Mrs Deakin, a part-time nurse who works in Seacroft, near Leeds, has been spending an average of £350 per month, but sometimes as much as £800, travelling to London since Eliza’s diagnosis at nine weeks old.

“The cancer is so rare that it can only be treated in two hospitals in the country - in London and Birmingham. I have some family in London so that was the connection when deciding where to go, but really it would have cost around the same had we gone to Birmingham,” she said.

“Sometimes my husband, Jamie, and I would take her every three weeks for treatment. Sometimes we had to go each week. When making appointments in advance I could get off-peak rates of £179 return but when doing that three or four times a month the cost adds up.”

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

The Deakins have three other children - daughters Megan and Freya aged 11 and nine, and a son, Rowan, aged one.

“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,” Mrs Deakin said.

For the first year of Eliza’s illness, her dad was studying to become a physiotherapist, and so the family income was low enough to qualify for the NHS Healthcare Travel Costs Scheme, which meant their travel expenses could be reimbursed. But when Mr Deakin’s studies finished and he started to work as a physiotherapist, they lost that help completely, and are now under serious financial pressure, because of the cost of travelling for treatment.

CLIC Sargent, which supports children and young people with cancer, says parents who have a child with cancer travel, on average, an additional 440 miles per month for specialist treatment, with eight per cent travelling 1,000 miles or more.

It says new research has revealed that just six per cent of parents have received help from the NHS’s Healthcare Travel Costs Scheme, and 78 per cent of those polled were unaware the HTCS scheme even existed.

The charity is calling for a review of all travel assistance available to parents struggling with the extra costs of cancer through its Cancer Costs campaign and petition.

The petition is due to be handed in to 10 Downing Street on July 10.

Mrs Deakin said: “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.

“Eliza is doing well. She lost her left eye and wears a prosthesis which is a perfect match to her good eye and has adapted well. She still has five tumours in her right eye and impaired vision but after the last lot of chemotherapy we were told they were stable. It is the best diagnosis we have had so far.

“Some extra help could make all the difference and I hope the government eventually takes some notice of families in situations like ours.”

To sign the petition visit www.clicsar gent.org.uk/cancercosts