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Proton beam failure leaves hundreds of child cancer patients at risk

This article was taken from: https://www.telegraph.co.uk/news/2018/12/02/proton-beam-failure-leaves-hundreds-child-cancer-patients-risk/

By Justin Stoneman  & Henry Bodkin st the Telegraph news

Hundreds of children with cancer are resorting to inferior treatment because of a failure to open two flagship specialist centres, experts have warned.

NHS officials have admitted that no patient has yet received state-of-the-art proton beam therapy (PBT) at either its new London or Manchester sites, despite a Government pledge to be treating 1,500 a year by 2018.

Leading oncologists have called for transparency after two promised opening dates at The Christie NHS Foundation Trust were missed this year and the deadline quietly pushed back.

The centre represents the best hope for more than thousand patients denied funding to be treated abroad, as delays at the sister site at University College London Hospitals (UCLH) NHS Trust mean that will not be ready until at least 2020.

A type of radiotherapy, proton beam uses a precision high-energy beam of particles to destroy cancer cells while leaving healthy tissue unaffected. It is particularly valuable for children, who face higher risks of permanent side effects such as hearing loss and reduced IQ from conventional methods.

The technology came to public attention in 2014 when the parents of a five-year-old cancer sufferer, Ashya King, were briefly jailed after removing him from an NHS hospital where he was due to receive chemotherapy and taking him abroad for proton beam treatment.

They announced this year that the child remains cured of the disease.

Mr Colin Hopper, a maxillofacial cancer surgeon at University College London, said: “We should be told why things are moving slower than expected at the Christie centre. NHS patients are being denied.

“Children will benefit and shouldn’t have to go to other countries for this treatment.”

Costing a projected £250 million in total, the new proton beam centres are arguably the most complex technological projects ever undertaken by the NHS.

The Christie machine alone requires 10km of servicing pipework and 20,000 cubic metres of concrete, meanwhile engineers at UCLH are attempting to embed a similar design into one of the most crowded sections of subterranean London.

Dr Karol Sikora, former chief of the World Health Organization’s Cancer Programme, who now runs a private PBT provider in Wales, Proton Partners, said that while the larger £125 million Varien system selected by the NHS can be more comfortable for children, the health service should have opted for a greater number of simpler machines costing around £20 million each.

“I think they have simply got the wrong machine,” he told The Telegraph. “They should have got smaller machines and disseminated them round the country.”

Since 2008 the NHS has paid for around 200 patients to be sent abroad for PTB each year, mainly to Florida.

Documents obtained by Freedom of Information suggest that only one in five patients have their application approved.

Last month a 20-year-old student, Sabina Makaranga, whose GP mistook her pelvic cancer for a vitamin D deficiency, revealed she had been denied funding despite doctors believing PTB could improve her survival chances by 80 per cent.

While the NHS in Wales is beginning to pay for patients to be treated at a handful of private PTB clinics, English commissioners have preferred to continue sending patients abroad while they wait for their two flagship centres to come on line.

A spokesman for the Christie said: “The Christie proton beam therapy centre has been operational from 20th August 2018 and is running patient selection and assessment, treatment planning, scanning and clinics to prepare patients for their treatment.”

The trust said that the first patients would begin their PBT before the end of “autumn”, but refused to define autumn due to “patient confidentiality”. NHS England told The Telegraph that autumn ends on December 21.