THE DESPERATE mother of a boy overcoming cancer is campaigning for a change in policy to allow relapse patients the right to NHS funding for cutting edge treatment.
Charlie Ilsley, 12, from Emmer Green in Reading, recently underwent treatment for brain and secondary spinal cancer in Turkey, which cost more than £81,000.
Charlie was diagnosed with medulloblastoma, the most high-grade brain tumour found in children, when he was only eight years old, following weeks of unexplained vomiting and neck pain.
Following treatment, he went into remission in 2015, but in March 2018 the cancer returned after a routine scan picked up five tumours on his spine.
After researching online, Charlie’s mother, Toni, 49, discovered a treatment involving a targeted radiotherapy called CyberKnife combined with the drug Avastin, which destroys the blood supply to tumours, and other chemo drugs.
Children with the same type of brain tumour as Charlie had received the treatment which had proved successful.
Although CyberKnife is available in the UK on the NHS, she was told by Charlie’s local hospital that he failed to meet the criteria as he was a relapse patient, in line with the current policy.
It is available privately, at a cost of more than £30,000, so Toni contacted various private hospitals in the UK asking if they treated children, but never received a reply.
Toni then came across the Memorial Hospital in Ankara, Turkey, which offers children the treatment, but for more than double what it would cost in the UK.
The treatment is backed by an established protocol and is used in America.
Toni felt this was the only option left for Charlie, but the question of where the £80,000 cost would come from was a major stumbling block.
More than £60,000 was raised after Toni’s cousin set up a GoFundMe page, with donations received from hundreds of generous well-wishers, including one amount for £20,000 donated by the boss of a hotel chain.
The rest was paid for by Charlie's parents, who had to borrow the money to cover the costs.
Although he has had the mian treatment, there are still further scans and trips to Turkey required, so Charlies parents have been left with a big bill to pay.
Toni said: “Charlie’s NHS consultant said we were doing the right thing - her hands were tied by NHS funding - but I was still very apprehensive.
“We were after all parting with a colossal sum of money and really throwing caution to the wind, but we couldn’t afford to wait.
“Crowdfunding has helped keep Charlie alive.
“We still need another £30,000 in donations to pay the total bill.
“It makes me very sad and angry that our NHS hospital turned us down, and I urge a review of their current policy denying access to potentially lifesaving treatment for sick children.
“I’ve heard some horror stories of parents going abroad for treatment — one paid £250,000 upfront for treatment for their child at a U.S. hospital, then their consultant here refused to let them fly and the hospital wouldn’t give them a refund.
“They had to charter a boat to take their child to Spain for the same treatment.
“Things have got to change, families in the UK should not be risking everything to seek unaffordable treatment abroad when our own health service can provide the treatment here.”
A spokeswoman from NHS England said: “The NHS funds this treatment for lung cancer as well as research into its use for other types of cancer.
“However It is not always clinically appropriate or a better treatment than other options already available on the NHS – these are difficult decisions which is why they are made by clinical experts.”

Charlie's gofundme page can be viewed here.