ONE IN FOUR SUFFERERS VISIT GP FOUR OR MORE TIMES BEFORE REFERRAL
One of the UK’s largest surveys of brain cancer sufferers and carers1, conducted by the Samantha Dickson Brain Tumour Trust2, suggests that GPs and the general public need better guidance on spotting the key symptoms to aid earlier diagnosis and improve survival.
Released to coincide with March’s Brain Tumour Awareness month, the survey shows one in four patients had to consult their GP four times and over before they were referred to a specialist, with nearly one in ten consulting their doctor more than eight times. Over 30 per cent said they waited over four months before receiving a diagnosis. Research has shown that it can take three times as long to diagnose a brain tumour in the UK than in other countries.
It is not only GPs that are missing the ‘red flag’ symptoms of brain cancer. The survey also showed that 67 per cent of those diagnosed with a brain tumour had not been aware of the typical symptoms and therefore did not push for further investigation.
Paul Carbury, CEO of the Samantha Dickson Brain Tumour Trust said: “These results confirm what Brain Tumour Awareness month is all about – we still need to educate the public and the primary health care professionals about this devastating illness and make them aware of the recurring warning signs. Our funding has helped produce national guidelines to enable GPs to spot the early warning signs of brain cancer and we hope that this will make a significant difference in improving quality of life, survival rates and reducing the burden of disability”
He added: “We urgently need to improve the understanding of brain cancer and its signs and symptoms and get people to understand that it does happen and the incidence is growing.”
This year approximately 6,500 people in the UK will be diagnosed with a primary brain tumour and 3,400 will lose their lives to one. Despite being the biggest childhood cancer killer and causing more deaths in the under 40s than any other cancer, it receives a fraction of the funding of higher profile cancers. Statistics also show that higher profile cancers have received up to 20 times the investment and have seen survival rates almost double in 30 years.
Kerry Bubb, whose daughter, Molly, died from a brain tumour aged 4, said: “There is still so much ignorance around this disease. We were repeatedly told by the medical profession that my daughter was suffering from a virus and told to treat her with paracetemol. She was, in fact, in the advanced stages of cancer and this was only established after we fought to get her scanned. With an earlier diagnosis, she would have lived her final few weeks with dignity, and not in the pain that we had to watch her endure.”
The charity is working with health professionals and organisations to raise awareness of brain cancer and later this year will be supporting a groundbreaking national project that will encourage early diagnosis of childhood brain cancer.
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Notes to editors
1. In February, the charity surveyed 350 sufferers and their carers about symptoms and their experience of diagnosis.
2. About Samantha Dickson Brain Tumour Trust (SDBTT)
Samantha Dickson Brain Tumour Trust SDBTT is the leading adult and childhood brain tumour charity dedicated to research in the UK. The charity’s aim is to raise awareness, support and funds for brain tumour research to help fight this devastating disease and give hope to brain tumour patients in the future. It also offers support and information to patients and their carers.
The charity has been working to find a cure for brain tumours since it was set up in 1996 by Samantha’s parents, Neil and Angela Dickson. Since then millions of pounds have been raised for brain tumour research and support services for patients and carers, and the charity has become the largest funder of brain tumour research in the UK.
More information on Samantha Dickson Brain Tumour Trust is available by calling 0845 130 9733 or visiting www.braintumourtrust.co.uk.
General Statistics
Out of the £420million spent on cancer research in the UK, less than 1% is spent on brain tumour research.
6,500 people are diagnosed each year with a primary brain tumour.
3,400 people lose their lives to a brain tumour each year.
Despite being the biggest childhood cancer killer and causing more deaths among the under 40s than any other cancer statistics show that brain cancer has received a fraction of the funding of higher profile cancers. Statistics also show that high profile cancers have received up to 20 times the investment of brain cancer and have seen survival rates almost double in 30 years.
Often dubbed the ‘forgotten cancer’, the UK’s brain cancer survival rates have barely changed in 30 years whereas other cancer types have seen clear improvements.
The average years of life lost (calculated from the shortening of life attributable to brain cancer, compared to life expectancy) to brain tumours is the highest of any cancer at over 20 years and is the biggest killer of adults under 40.
SDBTT Statistics
Record year from 1st April 2008 – 31st March 2009
Record income of £1.3m for the year
Record research expenditure of £1m
Three major research breakthroughs:
University of Newcastle – our research team have pinpointed characteristics of medulloblastoma tumours that could help to determine the severity of an individual child’s cancer. A new project is now trialling a UK-wide system for testing tumour samples and will assess whether this could be used routinely to improve diagnosis and tailor treatment for individual patients.
Queen Mary University, London – our research team has made a major breakthrough with regard to the childhood brain tumour pilocytic astrocytoma. Research has identified certain genetic changes that are frequently found in these tumours, and which relate to a pathway that could be involved in the development of the tumour.
National Hospital University College London – for the first time in the UK adult high grade brain tumour patients are having a chromosome test on their tumour samples. The test identifies approximately one in three patients whose tumour is far more reactive to chemotherapy
6,500 people are diagnosed each year with a primary brain tumour.
3,400 people lose their lives to a brain tumour each year.