A charity chief has condemned an “appalling” lack of awareness over the number of children dying from brain tumours.
The majority of people still believe leukaemia is the biggest cancer killer of youngsters while, thanks to increased awareness and investment in research, the numbers of those lost to the blood disease have fallen below brain tumours.
In a survey commissioned by the charity Brain Tumour Research 69% of those questioned thought leukaemia was the biggest cancer killer of children with just 7% being aware brain tumours are taking more young people than any other cancer.
The Populus poll also showed that as many as one in three people know someone diagnosed with a brain tumour and around half of respondents (47%) believe the National Cancer Research Institute (NCRI) partners should be spending at least £15m on research into the disease, more than double the current spend.
Brain Tumour Research is calling for a step-change in research investment to fight the disease which, despite claiming the lives of more children and adults under the age of 40 than any other cancer, has been allocated just 1% of the national spend on cancer research.
The charity’s Chief Executive, Sue Farrington Smith MBE, said: “The lack of awareness is appalling. For too long, brain tumours have been a neglected cancer. Our survey shows that although nearly a third of us have had a personal connection with this disease, the overall perception of its impact is wildly inaccurate. Once people are aware of the levels of funding for other cancers, then more than 60% are clear that there needs to be an increase in national research funding for brain tumours. We must not abandon the 60,000 people living with this disease in the UK.
“While we applaud the wonderful advances for many other diseases, through the fantastic research breakthroughs of recent years, it is now time for brain tumour patients and their families to see results.
“Cancer Research UK has conceded that mortality rates for brain cancer are likely to remain unchanged over the next 20 years, despite its prediction that death rates overall from cancer in the UK will fall by 15% by 2035. This disparity is unacceptable; we must offer a fairer deal to brain tumour patients.”
The survey results come after a year of campaigning which included a Petitions Committee report concluding that “successive governments had failed brain tumour patients and their families for decades.” A Government Task and Finish Working Group was convened following last April’s Westminster Hall debate and continues to sit in order to tackle the historic underfunding for research into brain tumours.
The latest figures from the NCRI indicate the money spent on research into brain tumours decreased to just 1.37% in 20154. The financial burden of research investment has fallen heavily on the third sector. In 2015, charities funded 86% of the national research into brain tumours, while the 14% of Government spend on brain tumour research represented just 0.52% of its total spend on cancer research.
Brain Tumour Research is highlighting further stark statistics around this neglected cancer, with fewer than 20% of brain tumour patients surviving beyond five years of their diagnosis, compared with 86% of breast cancer patients. The charity also confirmed that the number of people dying from brain tumours increased by 27%, with the number of new cases rising 19% since 2002.
Sue Farrington Smith continued: “Better outcomes are the result of painstaking research in the lab and the clinic. It is recognised that we need to build capacity, developing a new generation of brain tumour researchers while attracting and retaining talent to the field. This challenge requires dedicated action across the board, from both charities and the Government.”
Joanne Stinson from Bury, Greater Manchester, lost her daughter Ruby to a brain tumour at the age of five. She said: “While we have just marked the eighth anniversary of Ruby’s death, in many ways it still seems like yesterday. If I’m perfectly honest with myself I realise it is only recently that I have started grieving. It is hard to explain my loss but it feels as if I have a large wall of water behind me, it is tall and stormy and every now and then a few drops of water fall down.
“If I look back, the wall will come crashing down so I focus on what is ahead. If I thought about the enormity of it all it would be too much to bear. I can only hope that more people become aware of this horrendous disease which robbed us of Ruby and that a cure is found to prevent others experiencing the pain we continue to endure.”
Brain Tumour Research is campaigning to see the national spend on research into brain tumours increased to £30 - £35 million a year, in line with breast cancer and leukaemia. The charity, which receives no Government funding, is building a network of experts working at world-class Research Centres of Excellence in the UK, with four already established.
“As well as the Government, it is time for the general public and organisations to get behind increasing investment into researching this devastating disease and reverse this chronic underfunding,” said Sue Farrington Smith. “Brain tumour charities don’t have the profile of breast and leukaemia charities so do not get the same level of support and we must change this. By supporting research into brain tumours we will be able to offer game-changing new treatments for patients in the future.”
To get involved, or donate, please visit: www.braintumourresearch.org
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For further information, please contact:
Susan Castle-Smith at Brain Tumour Research on 01908 867206 or 07887 241639 or susan@braintumourresearch.org
Notes to Editors
Brain Tumour Research is the only national charity in the UK focused on funding sustainable research to find a cure for brain tumours. We are building a game-changing network of world-class Research Centres of Excellence in the UK. Embracing passionate member charities nationwide, £5.5 million was raised towards research and support during 2016.
We are campaigning to see the national spend on research into brain tumours increased to £30 - £35 million a year, in line with breast cancer and leukaemia. The charity is celebrating a year of high-profile campaigning on this issue following the unprecedented success of its petition in 2016. Following that, Brain Tumour Research is now taking a leading role in the Government’s Task and Finish Working Group convened to tackle the historic underfunding for research.
Key statistics on brain tumours:
- Brain tumours kill more children and adults under the age of 40 than any other cancer
- They kill more children than leukaemia
- They kill more men under 45 than prostate cancer
- They kill more women under 35 than breast cancer
- Just 1% of the national spend on cancer research has been allocated to this devastating disease
- In the UK 16,000 people each year are diagnosed with a brain tumour
- Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers
- Incidences of, and deaths from, brain tumours are increasing.
Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website including our latest Report on National Research Funding. We can also provide case-studies and research expertise for media.