40,000 BRAIN TUMOUR PATIENTS 'MISSING' FROM OFFICIAL STATISTICS EACH YEAR

By Lorraine Connolly, Community Newswire

HEALTH Tumour, 18 Mar 2009 - 11:28

A national charity has today released figures that show more than 40,000 people affected by brain tumours are missing from the UK's official statistics each year.

Brain Tumour UK forecasts that the brain will become "the primary battleground against cancer" in the future, as the treatment of other cancers advances.

In a new report, Register My Tumour, Recognise Me, published to mark Brain Tumour Awareness Month, the charity has warned that thousands of patients each year receive inadequate care because no budget or infrastructure exists to meet their needs, particularly at local level. Furthermore, research into brain tumours is woefully underfunded because they are perceived to be "rare".

Brain Tumour UK is calling on the 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.

Jenny Baker OBE, Brain Tumour UK chief executive, said: "Brain tumours, by virtue of their dangerous location, can impact on every characteristic that defines us as human beings.

"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."

The report - supported by experts from around the UK - estimates that 48,000 people develop a primary or secondary brain tumour in the UK every year.

Dr David Levy, consultant oncologist at Weston Park Hospital, Sheffield, said: "There are probably around 1,500 patients with high grade brain tumours missing from the official statistics as well as thousands of patients with lower grade and benign tumours.

"Brain Tumour UK rightly makes the point that unless we record this 'lost' group of patients, we cannot ensure that they benefit from the minimum standards of care they should expect."

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, while 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 believes 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.

Ms Baker added: "In future, the brain is likely to be the primary battle ground against cancer... It is essential that our health services monitor this growing danger and prepare to fight it."

end