Brave brain tumour campaigner Anna inspires new report calling for research funding

Before her death last month Anna Swabey campaigned to increase awareness and set about raising £100,000 for the charity Brain Tumour Research.

Sadly her condition deteriorated over the summer and she passed away the day before she had been due to marry her fiancé Andy Bell.

Her story touched people around the world, many of whom responded with donations and her fundraising target was achieved by the day of her funeral.

She had worked alongside the national charity Brain Tumour Research, lobbying politicians and giving evidence to MPs.

Now the charity has included her words, published in a House of Commons Petitions Committee web thread, in its new report.

She submitted them less than a year before her death, writing: “Forgive me, for I am not a doctor, a scientist, and I by no means profess to be an expert in the field at all, but if brain tumours kill more people under the age of 40 than any other cancer - why does research into brain tumours receive a mere one per cent of national cancer research funding? ...It does baffle me.  My diagnosis has changed my life forever.

“The only change I wish for the future is that there will be a new found hope; different treatments, and ultimately, the best word I will have ever heard - a cure.”

The charity says its new report is aimed at “addressing historical underfunding of research into brain tumours and the devastating consequences of limited treatment options for patients and families.”

It reveals that less than 10 per cent of people in the UK know that brain tumours kill more children and adults under the age of 40 than any other cancer.

A study of more than 2,000 adults was conducted by Populus on behalf of Brain Tumour Research with respondents citing leukaemia as the biggest cancer killer of children and breast, lung and bowel as the biggest cancer killers of adults.

Every week, a family loses their child to a brain tumour.

In 2015, the number of children dying of cancer was 194, with brain tumours accounting for 67 of these, the charity said.

The report reveals the incidence of brain tumours is rising from 3,546 in 2002 in 4,201 cases in 2014.

The charity said it wants to highlight the need for substantial funding increases.

Anna’s family has pledged to continue her work and her parents Linda and Keith, who live in Richmond, North Yorkshire, welcomed the report.

Her father said: “Anna was bright, brave and beautiful and had so much to live for.

“Despite the shock of her diagnosis and the traumatic surgery and gruelling treatment which followed, she threw herself into campaigning for change.

“It is a great comfort, particularly in these dark times, to know that her voice is still being heard.”

Brain Tumour Research’s chief executive Sue Farrington Smith said: “For too long, brain tumours have been a neglected cancer with successive governments failing patients and their families for decades.

“Stories like Anna’s remind us all that we cannot allow this desperate situation to continue.”

She added: “We are campaigning for fairness in cancer research funding, so that brain tumour patients can see the same improvements in treatments and outcomes that breast cancer and leukaemia patients have.

“Together we will find a cure.”

Brain Tumour Research is campaigning to see the national spend on research increased to £30m / £35m a year, which it said would be in line with breast and leukaemia, in order to advance treatments and ultimately find a cure.

The report describes the stark inequalities in cancer research funding.

Brain Tumour Research say that this funding situation “correlates tragically” to poor survival rates for brain tumour patients. Less than 20 per cent of brain tumour patients survive beyond five years of their diagnosis, whereas 86 per cent of breast cancer and 51 per cent of leukaemia patients survive beyond five years, it said.