A MUM who has lived with a brain tumour for five years has welcomed a call by charities for better standards of care.
Carmen Rickard, 42, from Hoddlesden, was pregnant with her daughter, Summer when she first noticed she was losing vision in her right eye.
She consulted her optician and was eventually diagnosed with a benign brain tumour in March 2005.
She said: “At first they said my tumour was inoperable. It's right behind my right eye, in a very dangerous place to access.
“In 2007 a scan showed it was growing dangerously close to my left eye and my neurosurgeon thought it was worth the risk to have part of it removed.
"However this operation then got cancelled and rearranged, a scary nine months after the scan.
“The frustration I find is that each time I have my annual scan, it generally takes five to six months to receive the results.
"You worry, because it's a long time to have that uncertainty.
“I am also under the care of five different consultants at five different hospitals, and very often I have to give feedback to each of them, from each other, on any updates of my condition.”
Now Carmen has backed a UK coalition of charities who are demanding the Government ensure everyone affected by a brain tumour receives consistently high standards of treatment and care.
The manifesto was delivered at a reception attended by the All Party Parliamentary Group on Brain Tumours, plus scientists, clinicians, patients and their families, at the House of Commons.
She said: “I would hope to see guidelines for better treatment of people with brain tumours being implemented as a result of the manifesto."
Around 8,600 primary brain tumours are registered in the UK every year.
However, this is thought to be an underestimate, and the National Institute of Health and Clinical Excellence believes “almost half of intracranial tumours are not recorded by cancer registries”.
Research by Brain Tumour UK suggests the true number is closer to 16,000, while the number of secondary tumours in the brain, which are not recorded, could be as high as 32,000.
Jenny Baker, chief executive of Brain Tumour UK, said: “Far more must be done to diagnose and treat brain tumours more effectively.
“Our manifesto sets out measurable solutions, which have the power to transform the lives of everyone affected by a brain tumour.”
- A brain tumour is an abnormal growth of cells within the brain or the central spinal canal.
- Any brain tumour, whether cancerous (malignant) or non-cancerous (benign) is serious and life-threatening.
- Brain tumours claim the lives of more men under 45 and women under 35, and more children, than any other cancer.
- However, brain tumours, even malignant ones, do not automatically cause death. The threat depends on the combination of factors like the type of tumour, its location, its size and its state of development.
- The most common symptoms of a brain tumour are headaches and fits.