by Paul Eastham, Daily Mail 31/3/1995
Don't go making trouble, doctor told breast victim who complained
THOUSANDS of breast cancer victims were 'fooled' into having needless radiation which left them crippled and in agony, four angry women told MPs yesterday They said doctors assured patients whose tumours had been removed that radiotherapy was needed only as a precautionary measure - and did not warn that their bones could crumble and they could lose the use of limbs.
Surgeons were accused of bullying and attempting to intimidate sufferers to prevent them complaining. One patient, the wife of an aristocrat, was warned: 'Don't come around here icoking for trouble.' The four women, all radiation victims and leading members of the lobbying body Rage, which stands for Radiotherapy Action Group Exposure, revealed their anguish at their treatment to the Commons Health Select Committee, which is investigating NHS breast cancer care.
They demanded a radical overhaul of the nation's approach to the disease and State compensation for those allegedly 'misled' over the effects of radiation.
Rage represents 1,000 breast cancer radiation victims and is in touch with 2,000 more.
It is surveying members to assess their loss of earnings before drawing up a formula in the next few weeks which will be the basis of a mass claim.
Health experts say some breast cancer victims suffer worse than others, partly because inexpert radiographers can deliver a double dose of radiation.
The comrnittee was told that the Health Service had recently overhauled the use of radiotherapy. Patients were more carefully-selected, radiation was aimed more precisely, and the number of adverse reactions was falling.
Baron Ironside's wife, Audrey, founder president of Rage claimed something had 'gone dreadfully wrong' for years with the way the treatment was planned and delivered.
She said of her own injuries: 'The radiographers weren't frank with me. All of us in Rage were told that there would be no profound side-effects. We would suffer perhaps temporary nausea and exhaustion but no permanent injury.
Lady Ironside went on: 'Perhaps I was trusting and foolish. Now I suffer severe pain and paralysis. If I had been properly informed about the dangers, I would have walked away and said, 'No, thank you", and taken my chances.'
She said she later discovered that, far from it being a virtually failsafe process, nearly one in five breast cancer patients irradiated at one London hospital suffered severe injuries which wfll steadily get worse.
She had found it impossible to get redress. 'The doctors had a very bullying attitude,' she told the MPs. My husband and I were told not to go looking for trouble, When you are a patient, you are in a very low position, upset and shocked. You are not in a position to do much arguing.'
Doctors 'bitterly resented' the fact that victims had risen up in their own defence, said Lady Ironside. When she had complained, they had reminded her that half of ill breast cancer victims normally died after five years. 'When they cannot think of anything else, they say, "You're lucky to be alive," 'she added. Rage committee member Hazel Thornton, 60, a company secretary from Colchester, Essex, has given herself a 3 1/2 year crash course in breast cancer medicine to tackle the doctors.
She called for the Government's breast screening service to wound up because, she said, it concentrating on older women who were less at risk of death younger ones with often aggressive cancers.
Rage wants the worst performers among 216 hospital-trust cancer units across the nation 'weeded out' and replaced with 200 specialist centres.
Women Condemned To Life of Pain and Handicap
LADY Ironside says her left arm was paralysed and her bones made brittle after her radiation treatment went wrong.
Despite careful questioning of doctors about the consequences of the 'purely precautionary' radiotherapy sessions, she has suffered repeated fractures to her injured arm, collar bone and four ribs.
Lady Ironside, 63, had her breast cancer diagnosed in 1982. She had the lump removed at one hospital in London and radiotherapy at another.
Two years later she had an operation for compression of the nerves, deep pain and the onset of paralysis in the left arm and hand. In 1991, she launched a High Court action seeking compensation from the NHS. She fought on for 31/2 years. In the end, she had to pull out after two weeks in court when she learned that to carry on would cost more than £200,000. She explained that as 'a middle-class woman she did not qualify for legal aid and the weight of the medical establishment was against her.
'Unless you have £200,000 and nothing else to do with it but waste it on a court case, you have to abandon it,' she said.
Former art historian Lorna Patch, 72, was forced to stop working after her right arm was paralysed following radiotherapy.
She said: 'I was never warned about the risks. I am in constant pain. The condition is quite irreversible and progressive.
'They said people like me had physical abnormality that led to this unusual result from a treatment that had otherwise been successful over the years. We were bullied into not going back to hospital and we were never offered any help.'
JAN Millington claims that hospitals distributed leaflets at the time of her treatment declaring that the side-effects were short-lived.
The 55-year-old headmistress and founder member of Rage, from Northiam, East Sussex, was diagnosed as having breast cancer in 1982. She had a lump removed and then radiotherapy. H right arm is now paralysed Several cancer charities and the Royal College of Nursing Breast Care Society echo similar concerns to Rage.