Emma and Shaun Gilchrist, 41 and 45, and their daughter Lita Ruskin Gilchrist, 17, 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(1). 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(2).
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.
Lita was 13-years-old when she was diagnosed with a brain tumour in July 2014.
Lita’s brain tumour went undiagnosed for around six months after her symptoms were initially dismissed. By the time she was diagnosed, the tumour was 10 centimetres long and 8 centimetres wide.
The family was transferred to Alder Hey Children's Hospital in Liverpool – a 120 mile round-trip from the family home – to begin treatment. Lita underwent 18hours of surgery on her brain, later followed by one on her sinus cavity.
During the first year of Lita’s treatment, the family made more than 50 trips to Alder Hey, spending around £30 in petrol each time. The family also faced a daily car parking charge of £2 per day, before a new system was brought in and saw charges jump to £6 per day.
After Lita received the all-clear, the family travelled back and forwards for regular check-ups and scans.
Sadly, in early 2018 the family discovered that Lita’s tumour had grown back and she had to undergo a further three operations. Last month, Lita began a course of radiotherapy which sees her travel in patient transport to Liverpool daily to receive her treatment.
“When we found out about Lita’s diagnosis it was horrific. We were transferred straight to Alder Hey and couldn’t really process what was going on.
“The extra travel costs from travelling up to Liverpool and Shaun driving each time have put an additional strain on us as a family. I’ve had to give up months and months of work, which only adds to the financial strain.
"Shaun's company continued to pay him in his absence, but he's been going in at 4am every day since we got home from Lita's surgery in May to make up the hours.
“We were fortunate in a way to have some savings that could be used, although if treatment continues after radiotherapy we could suffer much more of a financial impact.
“It’s affected every aspect of our lives. Lita is strong and brave though; she’s coped amazingly with everything that has been thrown at her.”
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 – one family is currently travelling over 800 miles to get to the specialist treatment centre.
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 6% of families receive financial support with travel costs(3).
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(4).
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 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, countless back and forth to the hospital, there is the constant worry and need to have enough petrol in the tank and 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. Please sign the petition at: www.clicsargent.org.uk/ccam