Cancer charity accuses NHS in bust-up over tumour girl

Mike Hyman co-created and runs Kids ‘n’ Cancer, which has helped several families whose children have been diagnosed with life-threatening tumours. They have raised money to help send the youngsters to America where they receive proton beam treatment, a type of radiotherapy, which is currently unavailable in the UK.

However, in what Mr Hyman brands his “most desperate case ever”, the charity has been thwarted in its attempts to help five-year-old Nell Connick, who lives with her parents David, 42, and Emma, 37, in Swansea.

Nell has a rare and fast-growing tumour in her spine. But she has been deemed unsuitable for NHS funding for proton beam therapy because the grade of the tumour is considered too high. As a result, the two centres in the USA that normally treat Kids ‘n’ Cancer patients have been asked to “follow their guidelines” by not accepting Nell.

“They are determined to stop her going to the States,” said Mr Hyman. “But they are cutting off a potential lifeline. They are playing God with people’s lives.

“If the NHS doesn’t want to pay for treatment, fine. But don’t stop mum and dad doing it through our charity. If a child has just a 1% chance of recovering, parents are going to take that chance and go to the ends of the earth for it.

“I accept that proton therapy is not a miracle cure. It is not a silver bullet. It is a radiation treatment that can create problems, and it might not save Nell. But it can be the best solution for families who want it. Every child we have helped so far is still alive and well.”

Emma and David say they have been disgusted by the treatment Nell has received from the NHS and claim her condition worsened after an operation. “I don’t know where we’d be without Kids ‘n’ Cancer,” said Emma. “They’ve given us the kind of support we could only wish for.”

With the help of the charity, they are now desperately trying to raise £100,000 to send their daughter for treatment in Germany or the Czech Republic.

NHS Wales said it cannot comment on individual cases, but a spokesman added: “We understand the distress of families of children with cancer. Proton beam therapy is commissioned on a very limited basis from a small number of providers outside the UK. Potential cases are assessed before recommendations are made for treatment following national guidelines.”