LEADING specialists have joined the parents of Skye Hall to demand research to prevent more deaths after the treatment that killed him was suspended.

Five-year-old Skye, from Abingdon, died in August after battling a brain tumour for a year, but he passed away from radio-chemo neurotoxicity.

It meant healthy cells in his brain and spinal cord were damaged by a regime of radiation therapy and chemotherapy known as the Milan protocol.

The protocol, which was recommended by the Children’s Cancer and Leukaemia Group (CCLG) in 2008, has since been abandoned.

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New guidance from the CCLG, which works with all children’s oncologists in the UK, now encourages doctors to stop the treatment.

Skye’s mother, Sally Hall, said: “Initially we were told [Skye’s death] was a unique and exceptional unexpected complication.”

But it became clear that other children across the country were also suffering from severe neurotoxicity.

Skye’s parents have set up the charity Blue Skye Thinking to help research into alternative cancer treatments for children.

Mrs Hall, also mum to three-year-old Jesse, said: “What we have learnt over the past few months is the shocking fact that there is no country-wide formal body in place to gather, monitor and share data for standard guideline treatment as there are with clinical trials.

“Despite the fact we now know other children had been suffering in a similar way and different treatments had been tried, [Skye’s doctor] could not easily obtain this information.

“It was a matter of phoning round individual colleagues to ask them directly all the time having to watch Skye deteriorate.

“This is not acceptable.This is extremely dangerous and raises questions over avoidable deaths.”

Chair of the neuro-oncology special interests group at CCLG Dr Nicky Thorp said the group had suspended the treatment in May last year, as soon as doctors noticed patients becoming ill.

Dr Thorp said: “We did a national audit of the 80 children in the UK who were treated with the Milan protocol.

“We found there were about 10 per cent with severe neurotoxicity.

“Their symptoms varied, but some had devastating effects, losing their mobility and not being able to swallow.”

The consultant clinical oncologist, who works in Liverpool, said: “We definitely agree with Skye’s parents.

"What we really want is a national database to collect information in real time.”

Oxford West and Abingdon MP Nicola Blackwood called for more standardisation and data collection in the House of Commons last month.

Ms Blackwood said: “The architecture for collecting the information is in place, but the lack of a formal data collection requirement and of a single responsible body can have devastating consequences for families.”