Register ALL brain tumour
patients, demands Brain Tumour UK
18 March 2009
Brain Tumour UK has launched a campaign to have all people who are diagnosed with a primary or secondary brain tumour registered in official health statistics. We estimate that more than 40,000 people affected by brain tumours are missed from the UK's official statistics each year.
And we predict that the brain will become 'the primary battleground against cancer' in the future, as the treatment of other cancers advances.
Here's our story:
In a new report published in March 2009 to mark Brain Tumour Awareness Month, Brain Tumour UK warns that thousands of patients each year are getting inadequate care because no budget or infrastructure exists to meet their needs, particularly at local level. Furthermore, research into brain tumours is woefully under-funded because they are perceived to be 'rare'.
Brain Tumour UK is calling on the respective governments and health services across the UK to ensure that all brain tumours are recorded in the official statistics by the end of 2009, so that effective care can be planned and delivered.
'Brain tumours, by virtue of their dangerous location, can impact on every characteristic that defines us as human beings,' says the charity's chief executive, Jenny Baker OBE.
'It is scandalous that thousands of people, many of them suffering very substantial cognitive and physical impairments as a result of their tumour, are largely overlooked because health services have not recognised their existence and complex needs.'
Brain Tumour UK's report - Register my tumour, recognise me - estimates that 48,000 people develop a primary or secondary brain tumour in the UK every year. The report is supported by experts from around the UK. See our campaigns page.
Although 8,000 primary brain tumour cases are recorded in the official Cancer Registry, studies have shown that half of all primary brain tumours are missing from the Registry. Consequently, another 8,000 tumours are not recorded. Some are malignant but others that are low grade or benign can nevertheless be as deadly as cancer.
Most surprising of all, secondary brain cancer is not recorded, even though for many cancer patients brain cancer may be the actual cause of death. Brain Tumour UK's review of post mortem studies leads it to conclude that around 32,000 people affected by secondary brain tumours are not properly recorded in the official statistics each year.
Secondary cancer in the brain is becoming increasingly common as advances are made in treating other primary cancers. 'In future, the brain is likely to be the primary battle ground against cancer because other cancers can hide from chemotherapy behind the blood-brain barrier,' says Mrs Baker. 'It is essential that our health services monitor this growing danger and prepare to fight it.'