More than 40,000 patients with brain tumours are not being registered in the nation’s yearly official health statistics, claims Brain Tumour UK.

According to the charity’s new report, Register my tumour, about 8,000 cases of primary brain tumours make it into the health statistics every year, but around half of all cases are estimated to be missed. Some of these are malignant, but the group points out that even those that are benign can be as deadly as cancer.

Surprisingly, secondary brain cancer is not recorded at all, “even though for many cancer patients brain cancer may be the actual cause of death”, the charity says. A review of post mortem studies suggests that as many as 32,000 cases of secondary brain tumours are not being included in the registry, it claims.

The group says thousands of patients are receiving inadequate care “because no budget or infrastructure exists to meet their needs, particularly at local level”, and has called on the government to ensure that all cases are recorded by the end of 2009 so that an effective care strategy can be “planned and delivered”.

“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”, said the charity's chief executive, Jenny Baker OBE.