Anna's Hope founders Rob and Carole Hughes, from Barnack, welcome MPs report calling for more investment into research

The parents of a little girl who died from a brain tumour have welcomed a report from MPs which urges more funding be put into researching a cure.

Rob and Carole Hughes, from Barnack, lost three-year-old daughter Anna in 2006 and went on to set up the Anna’s Hope charity which provides post-surgery rehabilitation for children.

They are also both involved in the Brain Tumour Research charity which lobbies politicians and compiled the report for the All-Party Parliamentary Group on Brain Tumours.

It underlines the long-term under-investment for research into this branch of cancer and the low survival rate.

Brain tumours remain the biggest cancer killer of children and adults under 40.

“We are encouraged by what the report is saying and more MPs are becoming aware of brain tumours and the lack of funding," said Rob.

"When you have been at this for so long, you realise this is just a little step on a long road ahead, but we will take it.

“When we started this charity who would have thought what we've achieved, and we’ve done that by little steps."

The report said that just £15 million of £40 million Government funding pledged in 2018 to research cures had been awarded, with "£6 million of this not easily identifiable as relevant to brain tumours".

It also confirms that no new treatments have been found since 2018 and the five-year survival rate for patients remains at just 12 per cent.

"We have not seen nationally these funds being spent, so for a child with a brain tumour the outcomes are no different from when Anna passed away 17 years ago," Rob explained.

"This is why there is this further call to put more effort into it."

Anna was given just a small chance of surviving, and following surgery and fortnightly hospital visits, she died after her cancer returned.

“In Anna’s case it was 10 per cent but you put that to one side," Rob recalled.

"Carole and I had to focus on getting through what’s a really tough treatment for children.

“It’s a journey, like going up Everest. You keep climbing, you never give up until you know there is no chance.

“It’s amazing how you get through that. You either face it or run away, so you face it.

"The thing with brain tumours, and all cancers, it doesn't just affect the child, it has a big impact on the whole family."

Rob is encouraged by advances made in the treatment of other cancers, such as leukemia and breast cancer, and hopes the same progress can be made.

“I lost a nephew to leukemia and back then when children got leukemia their chances were terrible," he said.

"But now if you catch it early most children will survive and we want the same for brain tumours.

“It’s 30 years away before we can make any major progress, but certainly when you look back 10 years to where we are now there are more people researching it and that is a good start.

"Brain Tumour Research has four centres in the UK where research is going on, and we hope to build a community of scientists who have expertise in this field, and attract others to get on board."

As well as founding Anna's Hope, Rob went on to become chairman of the North West Anglia NHS Foundation Trust for nine years.

“I had nine years of working with government bodies so the challenge is that in tough times the Government has to make choices with limited funds.

"We hope that what we are doing will strengthen our case.

“More needs to be spent to get clinical trials going and having tissue banks in place.

“It’s up to us to keep the pressure on."