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:

'I very much welcome this report. The NHS needs robust mechanisms whereby anybody who has an abnormal brain scan is properly recorded and then assessed by a neuroscience multi-disciplinary team as soon as possible. If we can get that one thing right, then we can go on to deliver the right level of care to the right people at the right time.'
Professor Garth Cruickshank PhD FRCS, Professor of Neurosurgery, Queen Elizabeth Hospital, Birmingham.

'Scientific research to defeat brain tumours depends on robust and comprehensive data. This report makes a clear case for gathering data on all brain tumours so that we can better understand their behaviour and the effects of different treatments over time.'
Professor John Darling MSc PhD FIBiol, Director of the Research Institute in Healthcare Science,University of Wolverhampton.

'Services for patients with brain tumours of any type, grade or site within the head will require planned and coordinated management involving many clinical specialities in hospital and good informed primary care services. The route map to improving care starts with identifying people with tumours and planning required services to ensure people have access to the best services for their individual circumstances.'
Dr Robin Grant MBChB FRCP FRCP, Lead Clinician, Scottish Adult Neuro-Oncology Network.

'In order to deal effectively with a disease that has such a devastating effect not only on patients but also on those around them, the very least we need is accurate recording of numbers. I congratulate Brain Tumour UK on this report. It is about time that this patient population received the same level of understanding, support and investment as other cancers.'
Dr Jacqui Harney MRCPI FFRRCSI, Consultant Oncologist, Belfast City Hospital.

'We very much welcome and support this important work from Brain Tumour UK. Currently neurosurgical services are being reconfigured in Wales and without robust data on all brain tumour patients it will be impossible to design and develop an adequate neuro-oncology service for the people of Wales.'
Mr Paul Leach FRCS and Mr Richard Hatfield FRCS, Consultant Neurosurgeons, University Hospital of Wales, Cardiff.

'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.'
Dr David Levy FRCR FRCP, Consultant Oncologist, Weston Park Hospital, Sheffield.

'There is no doubt that the number of brain tumours has been under-reported for years. The very poor prognosis for brain tumour patients and the unique biology of brain tumours demands a high level of investment, yet spending on patient care is totally inadequate and funding for research is woefully insufficient.'
Professor Geoff Pilkington PhD FIBiol FRCPath, Professor of Cellular and Molecular Neuro-Oncology, Institute of Biomedical and Biomolecular Science, University of Portsmouth.

'I am delighted that Brain Tumour UK has highlighted the serious ramifications of this missing data. Compared to Europe our brain tumour survival rates look poor, but if you are missing large numbers of patients from the statistics, they don't give a true picture.'
Mr Louis Pobereskin, Consultant Neurosurgeon, Plymouth Hospitals NHS Trust.

'Most health service investment is on high grade tumours because they are the ones that get recorded. But low grade and benign tumours can have the same devastating consequences and for longer. Good data on all brain tumours will help in health service planning for all patients who need support.'
Elizabeth Preston RGN BA MBA, Head of Service, Cancer and Palliative Care, NHS Lothian.

 

Please help us in our quest to help you
	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.
	Alternatively you can post your donation to:
	Brain Tumour UK, Tower House, Latimer Park, Chesham, Bucks HP5 1TU
	download a form here