The plight of a mum whose five-year-old son died from side effects of brain cancer treatment has been championed in Westminster.
Sally Hall was joined by Abingdon MP Nicola Blackwood in Parliament on Monday evening to bid for a boost in funding for brain cancer research.
Mrs Hall and husband Andrew launched brain cancer research charity Blue Skye Thinking in 2014 in legacy of their son Skye, who died that year.
The debate was held after an e-petition calling on the Government to allocate more money to the disease gained over 120,000 signatures.
Mrs Hall said: “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.
“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.”
Blue Skye Thinking was earlier this month voted as the Oxfordshire Guardian Charity of the Year for 2016.
Government funding for site specific cancers in 2014 was £230million, with only £7.7m going to brain tumour research.
In 2013 the figure was even lower at £6.8m.
According to a report published by the Government’s petition committee, it could take up to 100 years for brain cancer treatment to catch up with treatment progress already made in other types of cancers.
It also said brain tumours are the biggest cancer-killer of children, and in one type of brain tumour, Diffuse (Intrinsic) Pontine Giloma, more than 90 per cent of children die within 18-months of diagnosis.
Ms Blackwood addressed the Government’s petitions committee in Westminster Hall on behalf of Blue Skye Thinking.
She told them: “I’m here because of Skye. Skye’s mother Sally is here in the gallery and since his death his family has shown extraordinary bravery. [Brain cancer] is the most common form of cancer affecting children, and the most lethal. This is an investment that will reap rewards.”
Oxford East MP Andrew Smith also attended and spoke to point out research is also needed to investigate cancers that grow after the patient has survived a first cancer.
The debate was triggered by Maria Lester, who set up the online petition after her brother Stephen Realf lost his life to a brain tumour. It gained 120,129 signatures since it launched in September last year.
Following the debate Mrs Blackwood explained that ‘unlike most cancers, brain tumours are on the rise and underfunded’.
She added: “Children’s cancers are biologically very different from adult cancers and to treat them effectively requires specifically tailored research and treatment.”
Blue Skye Thinking works closely with the renowned Children’s Cancer and Leukaemia Group (CCLG), based in Leicester, and is also campaigning for a database to be set up for doctors treating cancer patients, where they can access information about treatment side effects.
Chairman of the neuro-oncology special interests group at CCLG, Dr Nicky Thorpe, 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.”
Dr James Nicholson, chair of the CCLG, added: “We need to know how effective our treatments are in order to be able to provide the best possible treatment for patients now and in the future.”
Skye died from the side effects of his treatment, known as the Milan protocol, for one of the more common types of brain tumour called medulloblastoma.
At the debate, the Minister for Health Science George Freeman concluded by saying he will put together a working group to explore issues raised, including data collection, trails, and off label drugs.
Mrs Hall added: “Where funding leads, breakthroughs follow.
“It was incredible to see direct democracy in action and heartening that there was a unified message across the house. Now is the time to act when researchers are on the cusp of breakthroughs yet research projects are often put on hold because there is simply not enough money to fund them.”