AN Oxfordshire MP has demanded a database to be set up to inform families about the effects of brain tumour treatments during a parliamentary debate.

Oxford West and Abingdon MP Nicola Blackwood spoke in front of a packed gallery on Monday of the need for a shared public record documenting treatments and side effects children have experienced.

Miss Blackwood told the story of Abingdon youngster Skye Hall, who died aged in 2014 from the side effects of radio-chemo neurotoxicity, having battled the tumour for a year, to emphasise the importance of having such records.

Skye's mum Sally, 37, was present and told the Oxford Mail she wanted to "give a voice" to a subject she said many parents found difficult to talk about.

She said: "It is easy to see why this despicable cancer has not been subject to too much public attention.

"It is all too easy to lash out and apportion blame when faced with such terrible circumstances but I, like many others present, know it will never bring our innocent children back."

Miss Blackwood said: "Cancer treatment is a brutal regime and can cause long-term disability, which is particularly true of childhood brain tumour survivors, 60 per cent of whom are left with life-altering disability. In a few cases like Skye, these effects can be fatal.

"Currently, there is no formal infrastructure to collect and share data about standard treatment guidelines.

"Now I don’t think that this is good enough because all lifesaving cancer innovations are very difficult and given the stakes, I simply cannot accept that it is an insoluble problem."

Although a pilot is being developed to improve data gathering by the National Cancer Registration Service and Public Health England, currently there is no formal infrastructure to collect and share data about standard treatment guidelines.

Ms Blackwood added: "In Skye's case when his consultant noticed that his condition was deteriorating fast, she could not easily find out if any other children... had experienced the same side effects and she was reduced to phoning round individual colleagues to ask their opinion one by one as Skye got worse.

"And, in the end, it was too late."

Dr Nicky Thorpe, chairwoman of the neuro-oncology special interests group said: "We definitely agree with Skye’s parents. What we really need is a national database to collect information in real time, rather than doing it retrospectively."

Mrs Hall added: "All we can hope for is to impress upon Government the need for the allocation of funds for the number one cancer killer in children and young adults, be addressed as a matter of urgency."

"My husband and I have had several meetings with Dr James Nicholson, chairman of the prestigious Cancer and Leukaemia Group (CCLG), to discuss how the Government can support them in introducing a data collection system and we will not rest until this is done."