Father lobbies for investment in research

Rob Hughes with the manifesto EMN-150319-093744001
Rob Hughes with the manifesto EMN-150319-093744001

The family of a little girl lost to a brain tumour are calling on the Government to invest more in finding a cure for the devastating disease.

Anna Hughes was just two-and-a-half when she was diagnosed with a brain tumour and lost her fight 15 months later.

Her father Rob, from Pilsgate near Stamford, was among many patients and their families, carers, scientists and charities who jointly presented a new manifesto from the national charity Brain Tumour Research to MPs at a Westminster reception on Tuesday.

The event took place at Speaker’s House, the official residence of the Rt Hon John Bercow MP, Speaker of the House of Commons, and Patron of Brain Tumour Research.

Since their loss in 2006, Rob and his wife Carole have campaigned tirelessly for greater awareness. Their charity Anna’s Hope, a member charity of Brain Tumour Research, is the leading children’s brain tumour charity in the East of England and works to make a difference to the lives of children and young people who have a brain tumour by providing support and rehabilitation during and after treatment to help them reach their full potential.

The Invest In A Cure manifesto is an open invitation and call to action inviting the UK Government to work with Brain Tumour Research and its partner organisations to shine the spotlight on research funding, incentivise and prioritise treatment for brain tumour patients and facilitate innovation by providing a dedicated fund for brain tumour research.

Rob, a trustee of Brain Tumour Research and chairman of Peterborough and Stamford Hospitals Trust, said: “Despite being told Anna’s chances of survival from her brain tumour were less than 10 per cent, my wife and I gave her all the support we could as she underwent 15 months of gruelling and relentless treatment but she sadly lost her battle aged only three years and eight months.

“Today, too little progress has been made and many families continue to face this awful illness. Brain tumours kill more children and adults under the age of 40 than any other cancer ...Yet just 1 per cent of the national spend on cancer research is allocated to this devastating disease. This is unacceptable.”

The Invest In A Cure manifesto calls on the UK Government, over the course of the next parliament, to specifically:

l Increase the national investment in brain tumour research to £30-£35 million per annum (the same level of investment cancers such as breast cancer and leukaemia receive).

l Create a national register of all site-specific cancer research to track all research work, grants and results.

l Ensure the cancer research fund prioritises reducing deaths under the age of 75.

l Create an additional criterion within the Cancer Drugs Fund which prioritises research funding for cancers affecting younger patients.

l Ensure greater repurposing of drugs so that vital research is not wasted.

l Ring-fence an Innovation Fund from existing research budgets to kick-start the next generation of groundbreaking and lifesaving discoveries.

l Devote an absolute amount to research.