Brain tumour patients face at best an uncertain future as research, treatment and support has been stymied by a lack of investment, but a new Midland support group hopes to change that.
Health Correspondent Emma Brady reports from the Brain Tumour UK conference in Birmingham.
Ann Atkins is keeping a brave face. She has to, as her daughter is battling a rare, slow-growing Craniopharyngioma tumour which, despite undergoing surgery at Birmingham Children’s Hospital last year, has returned.
Six-year-old Iona, who was due to have an MRI scan “two or three years’ after her operation”, was called in by doctors amid fears the tumour had returned.
“We were due to come in next month for a check up after our holiday but she’d had bouts of sickness and dizziness so we called the hospital and they brought her scan forward, which happened to coincide with the Brain Tumour UK conference,” said Mrs Atkins.
“Now, less than a year from her operation, we’re already discussing the prospect of other options, such as draining fluid from the tumour to shrink it, because further surgery runs the risk of damaging her optical nerve or even a haemorrhage.
“But we won’t really know what those options are until we get the results of this MRI scan later this week. The only right result would be a miracle, so I’m praying for a miracle.”
Iona is just one of the 50 people who are diagnosed with a brain tumour every day in the UK, according to Brain Tumour UK.
While Mrs Atkins, of Solihull, refuses to give up hope of a full recovery for Iona, she has joined forces with another brain tumour patient - former school teacher Jean Tomlinson - to launch the region’s first dedicated support group.
The West Midlands Brain Tumour UK Support Group will hold its inaugural meeting at Birmingham Central Library’s Health Exchange on September 12, which will be followed by monthly forums.
Mrs Atkins added: “I was gobsmacked at the lack of support for brain tumour patients, of all ages, because they are frightened but totally without any support once they leave hospital.
“We had no idea what to expect when we got Iona home. I’d love her to be able to speak to other children who have had the same type of surgery.
“I’d also like her sister Alex, who is 11, to have some kind of support. She must have tremendous doubt and uncertainty about the future, and that applies to any parent’s or patient’s perspective, too. But there was nothing available.
“While I was with Iona in hospital earlier, a woman came to see the family of the boy in the next bed. She was from the Eye Cancer Trust and started talking to them about all the services and support available to them. Brain tumour patients don’t get anything like that.
“It’s crazy that the Children’s Hospital, which has the second biggest paediatric neurosurgery unit in the UK, doesn’t have any specialist neurosurgery nurses.
“The ward is always full but it’s massively underfunded and could do with more staff.”
Professor Garth Cruickshank, professor of neurosurgery at Birmingham University, claimed brain tumours had been “the Cinderella cancer” for too long.
Speaking at the charity’s conference at Warwickshire County Cricket Club in Edgbaston, Prof Cruickshank said: “The number of brain tumours is increasing by two or three per cent each year, and not just in the ageing population, this is across the board.
“Life expectancy for a malignant tumour is about a year, regardless of age or gender, and of those that respond to treatment 25 per cent can expect to reach two years.
“Despite this brain tumours have been the Cinderella cancer for too long, although it has more impact on people’s lives in terms of days lost than any other cancer.
“About 500 patients are treated for brain tumours at the Queen Elizabeth every year, and that’s just adult cases.
“We know these are caused by genetic changes but we still don’t know or understand what triggers them. It’s not smoking, it’s not mobile phones, so to find out more money has to be spent on research to improve diagnosis and treatment.”
For more information about the West Midlands Brain Tumour UK Support Group, contact Jane Tomlinson on 0121 744 4888 or email firstname.lastname@example.org