SIAN Baker-Coopey was diagnosed with a brain tumour just four months after her wedding day.
The 25-year-old from Ross-on-Wye underwent seven hours of surgery at the Queen Elizabeth Hospital in Birmingham and has lost some sight in one eye.
But according to NHS figures, it never happened – because her tumour was described as benign, it’s not in the official statistics of the number of people affected by brain tumours.
The charity Brain Tumour UK says the situation is scandalous and is urging government to give the true figures so effective care can be planned and delivered.
It calculates that, in the West Midlands, 3,492 people are affected by tumours each year – but only about 592 are included in official statistics.
Sian, who was married a year ago, is backing the charity’s bid. She says she was discharged from hospital after five days and claims there was no follow-up care or advice.
“I was lucky to have a very caring family. My husband Martin, mum and dad and a wonderful GP have been helping me through, but there are many people who do not have the benefit of that,” she said.
Sian went for an MRI scan at Hereford County Hospital soon after her wedding because of tinnitus in one ear.
“Two days later my GP called, asking me to come in and to bring my mum,” she recalls.
He broke the news that the scan had revealed a brain tumour, which was not related to her ear problem.
The tumour was relatively big and the surgery Sian underwent, early last October, lasted seven hours.
After five days she went home but Sian said, although the hospital and its technology, coupled with the medical and nursing staff, were wonderful, there was no after-care advice or support.
After the shock of what happened the future could be quite scary, she said.
Sian still has to face six-monthly scans. The first was in February and she is waiting for the result.
She believes the official figures give a false picture.
“If they do not know how many there are, how can they plan the right services to help people?” she said.
Now about to start work at Goodrich Castle, Sian hopes to increase awareness and run a 10km marathon in July to support Brain Tumour UK.
Her plea is backed by Prof Garth Cruikshank, consultant neurosurgeon at the QE, who said clear information about the numbers of patients was essential for NHS planning.
“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,” he said.
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