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.'

If you want to talk, we're here to listen: Call our Helpline 0845 4500 386

For information and support, whether you have a brain tumour or are caring for someone, you can call our Helpline 0845 4500 386 from 10am - 1pm and 2pm – 5pm, Monday to Friday.

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Almost 100 delegates from throughout Scotland met for a one-day meeting titled ‘Diagnosis and Management of Brain Tumours in the Twenty-first Century’ during International Brain Tumour Awareness Week. Jenny Baker of Brain Tumour UK spoke at the seminar and other speakers included Dr Alasdair Rooney (Psychiatry, Edinburgh (on depression, particularly how it affects glioma patients), Prof. Donald Hadley (Neuroradiology, Glasgow) on current imaging techniques and how they are being used, and Dr Willie Stewart’s (Neuropathology, Glasgow) on moving towards individualised therapy.

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We want to do all we can to help anyone affected by a brain tumour. For more than ten years, we've provided a Helpline, support groups, regular newsletters and funded vital research into the causes and effects of brain tumours, and their treatment.
We also run the Denny Care & Relief Fund, a very personal fund which helps people with a brain tumour to have whatever they most need, whether that is a wheelchair, a washing machine or a holiday.

Our work makes such a difference to people who need our help and support. To continue this valuable work, however, we need your help to raise much-needed funds.

Click on the Charity Choice logo to make a donation online. This service is free and administered by a secure system with the Co-operative Bank plc.

By registering with Charity Choice there are no added costs to you. They do not charge a commission or any administrative/set-up fees. Their service also does not take any credit or debit card charges from the donor when a donation is made which means that the full donation amount comes to Brain Tumour UK.

Alternatively you can download our form and send it to our finance office at:
Brain Tumour UK, Freepost RRAT-GBTJ-TRKG, PO Box 27108, Edinburgh EH10 7WS

Click here to download donation form