Rachel O’Neil, from Overton, spent more on petrol to travel to Clatterbridge Hospital and Alder Hey Children’s Hospital in Liverpool where her son Reece Holt was receiving treatment for a brain tumour.
The mum-of-two is backing a petition from charity CLIC Sargent calling for an urgent review of the government assistance available to help families like hers cope with the extra travel costs a cancer diagnosis brings.
“Financially the extra costs we’ve had during Reece’s treatment have been difficult,” said Rachel.
“Before this happened we had no comprehension of how much it would all cost.
“During Reece’s treatment, we spent every penny of our savings, borrowed from our family, and our credit card balance went from zero to £1,600 in six months. I’d never used our credit card before, but without it I would have struggled to even get Reece to hospital for treatment.”
A grant was given to Rachel from the charity to help pay for some of the fuel costs.
According to CLIC Sargent, which supports children and young people with cancer and their families, parents who have a child with cancer travel an additional 440 miles per month for specialist treatment, with eight per cent travelling 1,000 miles or more.
CLIC Sargent argues that with a maximum household income threshold of £16,000 to qualify for the NHS’s Healthcare Travel Costs Scheme, too many families where a child has cancer are left struggling.
The petition, via www.clicsargent.org.uk/cancercosts, will be handed to 10 Downing Street on July 10.
Reece was diagnosed with a brain tumour in May 2016 after being taken ill after a trip to his grandma’s.
He was taken by ambulance to hospital in Lancaster, where a scan found he had a massive bleed on his brain, after which he was transferred to Alder Hey Children’s Hospital, on a life support machine and admitted into critical care.
Treatment at Alder Hey Children’s Hospital, a 130-mile round-trip from their home, included two surgeries to remove the tumour. He then needed radiotherapy on the remainder of the tumour at Clatterbridge Hospital, a 180-mile round-trip away from Overton.
Treatment took place five days a week for six weeks, and the family paid out £30 - £40 a day on their credit card for petrol - spending around £700 extra in just a month.
Clare Laxton, Assistant Director of Policy and Influencing at CLIC Sargent said: “Parents like Rachel routinely travelling hundreds of miles for their child’s cancer treatment every month.
“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.
“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.”
Last year CLIC Sargent, which works across the UK, supported 398 children and young people with cancer and their families in Lancashire, and awarded more than £56,000 to young people and families in need to help them meet the extra costs a cancer diagnosis brings, like travelling to hospital, and parking fees.
Reece went back to school in September and is now on maintenance chemotherapy, with scans every three months to check it has not returned. He is also in physiotherapy to regain his mobility, as his left side was paralysed after surgery.
Rachel is proud that despite all Reece has been through this year, he passed his 11-plus exam and is looking forward to starting grammar school in September.