A mother has slammed the NHS for refusing her son the same life-saving cancer treatment as Ashya King – because his tumour is so rare it is “not on their list”.
Doctors told Raluca and Phil Vinson that two-year-old Alexander would benefit from proton beam therapy (PBT) after he was diagnosed with a brain tumour in July.
The radiation therapy accurately targets tumours and was successfully used to treat Ashyer, whose parents took him abroad after he was refused the treatment in the UK.
Alexander was also denied funding for the procedure and his parents have now been forced to raise #150,000 to fund the treatment themselves in the US.
Raluca, 35, of Dilton Marsh, Wilts., has accused the NHS of treating her little boy “like a number” and “not a person” by refusing him the life-saving therapy.
She said she was told Alexander would not be given the treatment as “the prognosis was bad” – despite doctors at Southampton Hospital saying it could work.
“We have been advised by the radiotherapist in Southampton,” she said. “We asked him which type of radiation therapy would be better for him and he said proton beam.
“Radiotherapy is a very important part of the treatment. PBT means it doesn’t affect any of the cells around the tumour and that gives him a better chance of living a better life.
“Of course we want PBT because we want the best for him.
“The oncologist made an application to the NHS but it wasn’t on their list. They said the treatment was not suitable for this type of tumour.
“I’m sure they have a whole lot of cases and they need to choose from them. I don’t want to dispute their decision but obviously we want to be chosen.
“I don’t know what to think. We just go with what the doctors say.
“I think they didn’t really look at him as a person. I think they looked at him as a number.”
“They probably don’t have time to look at every case in detail. I felt angry and disappointed.”
Alexander was diagnosed with the rare cancer – teratoid rhabdoid – while on holiday in Romania visiting his mother’s family and has already undergone two eight-hour operations.
He has also had three rounds of chemotherapy with six more to go, and has been given about a 60 per cent chance of survival.
Raluca and engineer Phil, 41, now need to fly Alexander to the US to get him the treatment there, and have set up a fundraising page to reach their £150,000 target.
They hope to raise the money by December 16, when Alexander turns three – the age a child’s brain is developed enough to undergo the radiation therapy.
Mike Hyman, the co-founder of Kids ‘n’ Cancer charity, which has donated £10,000 to the appeal, said: “We never ever get to know the reasons why funding is refused.
“In Alex’s case in particular, the tumour is aggressive and fast growing.
“We have got this two year old boy who could potentially die for lack of radiation therapy.
“If your child has only got a one percent chance to beat the cancer, are you going to exhaust the one per cent or are you going to wait and see what happens?
“We don’t always know everything. We can’t always predict exactly what will happen with cancer.”
“There should be no child refused treatment. We should be doing everything possible to give that child the best chance to beat that cancer.”
An NHS England spokesman said: “There is a set list of cancers that have had clinical evidence that they can benefit from this treatment. It is not on that list.
“Naturally, we can imagine that as a parent you are going to want to try everything. Decisions have to be taken over whether it is or isn’t effective.
“There is no evidence of this treatment being effective. It is a specialist and very rare treatment and the list doesn’t include his particular tumour.
“There is a balance between a family that wants to try everything and the need to make these decisions.”
“We have real sympathy with any family facing these illnesses.
“These are really difficult decisions, which is why they are made by a panel of expert clinicians, based on evidence on which patients would benefit from PBT, and clinical consensus on whether going abroad for treatment risks a negative impact on a patient’s other health and care needs.”
To help raise money for Alexander’s treatment fund visit the: JustGiving page
