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Brain tumour statistics 'missing' Brain tumour statistics 'missing'
(about 2 hours later)
Over 2,300 people with brain tumours are missing from official statistics in Wales every years, a charity has said.Over 2,300 people with brain tumours are missing from official statistics in Wales every years, a charity has said.
Brain Tumour UK says thousands of patients are getting inadequate care as a result because there is no budget or provision to meet their needs.Brain Tumour UK says thousands of patients are getting inadequate care as a result because there is no budget or provision to meet their needs.
It wants the assembly government and NHS Wales to ensure all brain tumours are recorded by the end of 2009.It wants the assembly government and NHS Wales to ensure all brain tumours are recorded by the end of 2009.
The assembly government said national cancer standards for brain tumours would be developed.The assembly government said national cancer standards for brain tumours would be developed.
Brain tumours are regarded as rare because of under-reporting, which the charity says affects funding levels for research into the condition. Brain tumours are regarded as rare because of under-reporting, which the charity says affects funding levels for research into the condition. In future, the brain is likely to be the primary battle ground against cancer Jenny Baker
The charity's report "Register my tumour, recognise me" estimates 2,833 people in Wales are affected by primary or secondary brain tumours every year, but that only around 470 are included in statistics.The charity's report "Register my tumour, recognise me" estimates 2,833 people in Wales are affected by primary or secondary brain tumours every year, but that only around 470 are included in statistics.
Of these patients, 944 will have primary brain tumours and a further 1,889 have secondary ones arising from cancer which has spread from another site in the body.Of these patients, 944 will have primary brain tumours and a further 1,889 have secondary ones arising from cancer which has spread from another site in the body.
In future, the brain is likely to be the primary battle ground against cancer Jenny Baker
A study of post mortem examination reports have shown half of all primary tumours are missing from official statistics, while secondary tumours are rarely recorded, even when the brain tumour may in the end be the actual cause of death.A study of post mortem examination reports have shown half of all primary tumours are missing from official statistics, while secondary tumours are rarely recorded, even when the brain tumour may in the end be the actual cause of death.
"Brain tumours, by virtue of their dangerous location, can impact on every characteristic that defines us as human beings," said the charity's chief executive, Jenny Baker OBE. "Brain tumours, by virtue of their dangerous location, can impact on every characteristic that defines us as human beings," said the charity's chief executive, Jenny Baker.
"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.""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."
Paul Leach and Richard Hatfield, consultant neurosurgeons at the University Hospital of Wales, said they welcomed and supported the charity's claim.Paul Leach and Richard Hatfield, consultant neurosurgeons at the University Hospital of Wales, said they welcomed and supported the charity's claim.
"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.""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."
The charity said secondary cancer was becoming more common as advances were made in treading other primary cancers.The charity said secondary cancer was becoming more common as advances were made in treading other primary cancers.
Mrs Baker added: "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.Mrs Baker added: "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.
"It is essential that our health services monitor this growing danger and prepare to fight it.""It is essential that our health services monitor this growing danger and prepare to fight it."