A family whose daughter has to make 200-mile round trips for cancer treatment are calling for more help with the costs of travel.
Elin Rowlands, 13, from Anglesey, was diagnosed with leukaemia in 2013 and has to travel to Liverpool’s Alder Hey hospital to get specialist treatment.
Elin’s mother said it cost them between £35 and £40 for each return trip.
The Welsh Government said some families are eligible to claim for travel costs if they meet certain criteria.
There is a specialist cancer unit for young people in Cardiff but there is no service for those further north.
Alison Rowlands gave up work to care for her daughter Elin and said she had to depend on friends for financial help when their car broke down.
Mrs Rowlands told Newyddion 9: “At the start it was very scary… you don’t think about the journey right, it’s get your daughter there, get her better.
“It’s then as the treatment goes on, that it’s ‘oh my goodness, I’ve got to go there a lot’.
“We were spending roughly £35 to £40 each trip to go there and come back and most of them were day trips, and there’s a lot of them.
“We stayed there quite a lot in the beginning, but then we had to go back about four times a week.
“You had to look at the diary constantly, what time are we going? When do we need to set off? Have we got petrol in the car?
“My husband drove most of the time, but because of his job he couldn’t do it all the time.
“I wouldn’t like to imagine how much I’ve spent on the fuel in that amount of time.
“You worry enough about your daughter going through this horrible treatment without having to worry where the money’s going to come to put petrol in the car.”
Mrs Rowlands said the local community pulled together and collected “a really good amount of money” they were able to spend on fuel.
“If the government did decide to help out with families, that would be amazing – until you go through something like this, you have no idea whatsoever.”
Elin had a relapse in January 2018 and needed a bone marrow transplant, but had to be transferred to a unit in Manchester.
Richard Pugh, from the Wales Cancer Alliance, is also backing the calls for more support: “The cost ramifications are huge because those specialist services aren’t that local.
“You’ve got to travel. Unless you’re in Cardiff and those services are right on your doorstep.”
The charity CLIC Sargent estimated Elin’s family would spend on average £600 a month on travel costs.
The charity want the Welsh Government to create a £250,000 annual travel fund, to help families pay for travel costs.
Mr Pugh said: “What we’d like to see is a travel fund for young people affected by cancer so they don’t have that financial burden.”
The Teenage Cancer Trust unit at the University Hospital of Wales in Cardiff is the only specialist unit for young people with cancer in Wales.
Ashley Bassett, 23, from Pencoed, Bridgend, was diagnosed with leukaemia when he was studying for his GCSEs and visited the unit.
“This unit is very important. It’s a place I can come and relax. It’s a nice environment. There’s a pool table, TV and games,” he said.
“There’s opportunities to try and be as normal as you can in hospital, because hospitals aren’t place to be sometimes, but this unit makes it much more bearable.
“It’s unfortunate that people live too far away to come here for treatment.”
Mr Pugh said “in an ideal world” there would be multiple units across Wales.
“Unfortunately, our workforce isn’t in the condition it should be to do that,” he said.
“We’re at a real cusp of some massive issues with our workforce, not just for children but across the board.
“So we need to make sure that we get the support for patients in the right location, at the right time. At this time, it does mean travelling.”
The Welsh Government said some families can be eligible to claim for travel costs if they meet certain criteria, such as claiming benefits.
A spokesperson said: “Families can be eligible to claim help for travel costs from the NHS if their child has to go to hospital for NHS treatment.
“We are committed to the provision of excellent care for children and young people but recognise that this may require families to travel outside of their health board area.
“While we appreciate the impact this has on families, it is also important to ensure that children and young people can receive expert care for what are often complex conditions from a sustainable service.”