A brain tumour is making me go deaf – so why does the NHS refuse to 'zap' it One woman's battle for pioneering treatment
21:11 GMT, 14 July 2012
Anger: Angela Steel faces surgery after she was refused radiotherapy
The surgeon was adamant – the MRI scan showed a tumour on Angela Steel’s brain and it had to be dealt with.
Without treatment it would continue to grow and she could suffer deafness, loss of balance and facial paralysis.
Her doctors recommended CyberKnife – a robotic radiotherapy machine that destroys tumours by ‘zapping’ them with precisely targeted X-ray beams fired from different angles. Patrick Swayze had this treatment during his battle with pancreatic cancer.
For Angela, undergoing radiotherapy would avert the need for potentially dangerous surgery to tackle her benign tumour. But to the 66-year-old’s astonishment, her local NHS refused to fund it.
The decision means she will now have to wait until the non-cancerous tumour – an acoustic neuroma, which grows on the nerve attached to the inner ear – is big enough to be surgically removed.
An operation poses ‘a significant risk’ of making her condition worse, according to Professor Tony Wright, her consultant ENT (ear, nose and throat) surgeon, and could end up costing more than radiotherapy.
Angela, of Southgate, North London, understandably feels ‘upset, angry, and anxious about the future’. The case also highlights the controversy over NHS decisions that can leave doctors disagreeing with the bodies that control funds.
Campaigners are asking if this decision is a sign of things to come, in which a straitened health service will be forced to deny the newest treatments in favour of cheaper, older and less effective alternatives.
Angela’s ordeal started in 2007. She was suffering from tinnitus – her ear felt as if it was blocked and she was unable to walk in a straight line.
Her GP referred her to an ENT consultant at Chase Farm Hospital in Enfield, North London, who sent her for an MRI scan. This showed up the neuroma, while another scan in July 2011 confirmed it had grown.
Angela was sent to Prof Wright, who
recommended CyberKnife and referred her to Dr Nick Plowman, a consultant
radiation oncologist at Barts hospital’s cancer centre in London. Dr
Plowman agreed Angela should have the radiotherapy.
Robo-doc: It was recommended Angela Steele be treated by CyberKnife (pictured), a robotic radiotherapy machine that destroys tumours by 'zapping' them with X-ray beams fired from different angles
As it grows, the tumour – the red dot on the scan image – puts pressure on the brain, causing headaches, facial paralysis, loss of hearing or tinnitus, vertigo and swallowing difficulties
‘Years ago surgery was the only
choice,’ he says. ‘But it’s a major operation and there’s no need for
that now unless the tumour has grown to a large size. CyberKnife would
be the best treatment.’
The machine costs 250,000 a year to
run. Barts Health NHS Trust has used the technique to carry out 15
successful treatments of acoustic neuromas since last July. A
three-session treatment costs 11,000.
But it is not routinely funded by NHS
North Central London, which commissions services in Angela’s area, so
Barts had to apply to the body to foot the bill. However, its request
was refused by an eight-strong panel.
The refusal is all the more
frustrating since Angela’s husband Martin, 67, is a member of the
Masons’ Metropolitan Grand Lodge, which donated the full 3 million cost
of the CyberKnife machine to Barts.
BENIGN – BUT STILL A PROBLEM
An acoustic neuroma is a benign tumour that grows on the acoustic nerve, which controls hearing and balance and runs alongside the nerve that connects the brain to muscles in the face.
As it grows, the tumour puts pressure on the brain, causing headaches, facial paralysis, loss of hearing or tinnitus, vertigo and swallowing difficulties.
Left untreated, it can cause loss of consciousness, fevers and fits.
Angela Steel already suffers headaches, loss of balance and facial numbness. The symptoms are likely to worsen as her tumour grows to a size suitable for surgery.
Every year, about 1,200 Britons are diagnosed with an acoustic neuroma. There are more female sufferers than men, and most are aged between 40 and 60.
Angela, who has two grown-up sons and
a granddaughter, appealed against the decision but earlier this month
she learned that it too had been rejected.
‘I understand they have a limited budget but I’ve paid National Insurance all my life. Now that I need something, they won’t let me have it. It seems very unfair.’
A spokesman for NHS North Central London says: ‘CyberKnife treatment is not routinely funded as there is no robust evidence of it being more clinically effective than other treatments.’
Dr Plowman disagrees. He says CyberKnife had been shown to have an 85 per cent chance of stopping the tumour growing, slightly higher than surgery. It also has a 67 per cent chance of preserving the patient’s hearing – much greater than surgery.
Prof Wright, Emeritus Professor at UCL Ear Institute, adds: ‘Surgery would pose a significant risk. Nerves affecting hearing, balance and facial muscles can be damaged.
'There is a place for surgery when tumours are large, but Angela’s has not reached that stage yet. I don’t understand this decision.’
The Government has demanded ‘efficiency’ savings of 20 billion in the NHS in England by 2015, and Dr Plowman is concerned that more patients could be denied radiotherapy and forced to have surgery.
‘The PCTs kicked up when earlier forms of radiotherapy were introduced, but eventually they accepted that in most cases they were better than invasive surgery,’ he says.
Angela still hopes the decision will be reversed. ‘They’re playing with my health,’ she says. ‘I am nervous to go out because of my balance. I just want to get this tumour dealt with and get on with my life.’