A Spalding family who spent hundreds of pounds on petrol taking their young son to hospital for vital cancer treatment say the Government needs to do more to help other families struggling financially.
Jo and Gareth Devaney are backing a campaign by charity CLIC Sargent after new research, released for September’s Childhood Cancer Awareness Month, found that children with cancer are having to travel twice as far, and spend twice as much, on getting to and from hospital than adults.
On average, families of children and young people with cancer face a round trip of 60 miles to get to hospital for treatment, adding up to at least £180 a month in petrol costs.
Now CLIC Sargent is urging the Government to set up a Young Cancer Patient Travel Fund to help thousands of families afford to get to hospital and back for vital cancer treatment.
Lucas was just three-years-old when he was diagnosed with acute lymphoblastic leukaemia in March 2015.
The family had to travel 140 miles round-trip to Addenbrooke’s Hospital in Cambridge for specialist treatment, ensuring their petrol tank was always full at a cost of around £50. At times Lucas had so many tests across a couple of days that Jo or Gareth would also pay to stay in a local hotel for up to £80 a night.
In November 2015 Lucas moved on to less intensive treatment and was transferred to Peterborough City Hospital - still a 60 mile round trip from home. Lucas had to go to hospital every week or two until his treatment ended in June 2018.
Mum Jo (33) said: “The whole cancer journey has been very costly. The first year was the hardest when we were going back and forth to Addenbrooke’s all the time which was a 140 mile round trip.
“Gareth was self-employed at the time, so if we didn’t go to work we didn’t have money. That meant that I stayed with Lucas by myself a lot of the time and it was a struggle to keep the family together and have any sense of normality.
“We drove every time so petrol costs were a big problem for us. We’d always have to make sure we had a full tank of petrol because we were driving such a long way.
“We have cars on finance so a major worry was not having enough money to pay the bill each month, because the extra costs just mount up when your child is on treatment. I don’t even want to think about how stressful it would’ve been to lose the car if we hadn’t been able to keep up with the payments.”
Because of the nature of childhood cancer, different cancer types require specialist treatment which is only available at a small number of specialist treatment centres across the UK. That often means families have to travel around the UK to get to treatment.
Cancer treatment for young people can take anything from months to over three years, consisting of hundreds of journeys back and forth to the hospital, whether that’s for chemotherapy, routine blood tests or their child falls suddenly ill in the middle of the night and needs urgent medical care.
Under the current NHS’s Healthcare Travel Costs Scheme, just six per cent of families receive financial support with travel costs.
The cost of getting to hospital and back is just one of the added costs faced by families when a child is diagnosed with cancer. On average, a family of a child with cancer faces spending £600 a month extra, on top of every day expenses and bills, which is often money families struggle to find.
Kate Lee, CEO at CLIC Sargent, said: “Being told that your child has cancer is one of the most horrendous situations that any parent can imagine. No parent should ever have to worry about not having enough money to take their child to hospital for cancer treatment.
“The current government travel cost scheme is not fit for purpose and is available to too few families. The NHS’ provision of universal healthcare is free at the point of entry yet, in reality, families are footing the bill for it.
“On top of what can be years of treatment and countless back and forth to the hospital there is the constant worry and need to have enough petrol in the tank and to make sure the car is roadworthy so the family know they can make it to hospital whenever they need to.
“We know that cancer costs and families are really struggling financially, leaving families counting pennies, relying on charity grants, borrowing money from family and friends, wiping out savings or facing being plunged into debt.
“This is not good enough and the Government needs to set up a Young Cancer Patient Travel Fund so that families can focus on their child, rather than worrying about mounting bills.”
CLIC Sargent is asking the public to sign its petition calling on the Government to set up a Young Cancer Patient Travel Fund. The petition can be signed at: www.clicsargent.org.uk/ccam.