'Proton beam therapy saved my son's life - but NHS doctors advised against it'

Credit: Good Morning Britain

A British mother whose young son's life was saved by proton beam therapy in the US has told ITV's Good Morning Britain that she defied NHS doctors' advice to pursue the treatment.

Alex Barnes, suffering from a brain tumour, had the successful procedure when he was four years old despite doctors in Britain advising against it.

"Luckily I had read about it on the internet," Ros, Alex's mother, told GMB.

"When we were told that he had to have radiotherapy and that his tumour had come back, we were told that because he was only four, it would cause significant brain damage, he might be in a wheelchair or deaf or blind - if he made it at all.

"So when I asked the NHS about proton therapy, the oncologist said it's not tried and tested and if you go over there [to the United States], they're only after your money.

"And I said well, they can have my money. If it works, I don't care. We'll get him there and we'll do what we've got to do.

"Most of the doctors I spoke to advised against it."

The Barnes family managed to raise £130,000 to take Alex to the US to have the proton therapy treatment.

"Obviously it saved his life. He's here and he's perfect."

"I think the doctors want to have proton therapy here, but it's so expensive to put the machines in that they have to follow what the budget says. And it's wrong. It's wrong to do that."

Dr Hillary said proton therapy could be cost effective in the long term because it causes less damage to other parts of the body. Credit: Good Morning Britain

Dr Hillary Jones explained that the proton therapy equipment itself is "very bulky, you need a lot of space - and it is very expensive to purchase.

"But that said, it is very effective. It is similar to conventional radiotherapy, except for the fact that you get less scatter.

"The proton beams are positively charged particles. They are focus on the tumour and cause less collateral damage to structures around the tumour, so the complication rate is less.

"So in effect it could be more cost effective."

Most of the proton therapy units are in Japan, the United States, or scattered around Europe, he added.