SADLY MISDIAGNOSED BRITS

And an arrogant government doesn't care

For more than two decades, John Simper was resigned to a slow and painful death from multiple sclerosis. Unable to work or drive, plagued by recurrent headaches, bouts of confusion, short-term memory loss and weakness in his limbs, he feared that he would end up paralysed and in a wheelchair. Today he feels mentally and physically stronger than he has in years, after being told that MS was almost certainly misdiagnosed. Instead he has an illness that can be treated with an aspirin a day.

He is one of hundreds who may have had MS, the progressive disease of the nervous system, misdiagnosed. At least 5 per cent of those told that they have MS are believed instead to have Hughes syndrome, which results in the blood becoming thick and sticky and liable to clot dangerously. Patients in whom MS was diagnosed — the disease affects about 85,000 people in Britain — have experienced seemingly miraculous recoveries on learning the true cause of their illness, in some cases after decades of ignorance. Paralysed patients have regained the ability to walk and others have overcome debilitation, headaches, confusion and short-term memory loss with treatments involving blood-thinning drugs such as aspirin and warfarin.

Mr Simper, 60, from Ipswich, a former motorcycle racer and mechanic, went to his GP after reading about Hughes syndrome in a magazine. Recognising his symptoms in the article, he asked his GP for extra tests. They showed that he had Hughes. He is campaigning to increase awareness of the condition. “I’ve got used to the idea of MS over the last 26 years. I’ve always been someone who wants what I want when I want it and I have not let my condition get in the way of that,” he said. “But people are needlessly suffering because they don’t know the truth about their illnesses, and the Government has to take notice of that.” An estimated 150,000 people in Britain suffer from the syndrome, first reported by Graham Hughes in the British Medical Journal in 1983. It has since been confirmed as the cause of one in five recurrent miscarriages, one in five strokes in younger people and one in five deep vein thromboses.

Yet Dr Hughes, now a professor at the London Lupus Centre, says that few GPs are alert to the condition and lives are still being ruined because simple tests are not offered as a matter of routine. “It is still totally under-recognised. People have been told they have MS and treated as such yet received no benefit, and the true cause has been under our nose the whole time,” he said.

Hazel Edwards, 48, a mother of two from Wrexham, North Wales, was paralysed from the neck down and received no benefit from chemotherapy and intravenous steroids after MS was diagnosed in 2001. She can now walk again, after a diagnosis from Dr Hughes. “As soon as I started warfarin, my memory improved and I found I could walk,” she said. “Professor Hughes and his team gave me back my life.” She first suffered repeated miscarriages, memory loss, confusion and a loss of coordination 28 years ago.

The Department of Health was “not aware of any evidence that population screening would be beneficial”. Yet a survey at the lupus centre indicated as many as 32 per cent of patients suffering from Hughes syndrome had been diagnosed wrongly or treated for MS. “The indications of MS and Hughes syndrome are extremely similar, even down to the MRI scans,” Professor Hughes said. “They can be extremely difficult to diagnose, but a simple blood test can make all the difference.” He recommends that two blood tests be offered routinely to any MS patient who has suffered recurrent headaches, problems with clots, a family history of autoimmune diseases, or who has had recurrent miscarriages

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18,000 patients harmed by hospital mistakes in New South Wales

Thousands of patients a year are being harmed by often avoidable mistakes such as being given the wrong drugs, incorrect treatment or falling down while in the care of public hospitals or other parts of the health system. An analysis, to be released today, of the first full 12 months of data from a NSW program designed to encourage reporting of so-called "adverse events" has found there were 125,000 notifications in the year to July 2006, of which 18,750 resulted in some level of injury or harm to patients.

NSW accounts for about one-third of the healthcare episodes across Australia, so on a national basis the figures could be expected to be three times higher. But because reporting events to the system is voluntary, the true level of mistakes and problems in the public hospital system is likely to be higher still. Falls represented the biggest category of adverse events, accounting for 26 per cent of all notifications or 32,500 incidents. Medication errors -- patients given the wrong drug or the wrong dose -- came next, accounting for 18 per cent of notifications or 22,500 incidents.

Incorrect clinical management -- in cases where the patients' conditions may have been misdiagnosed, diagnosis was delayed, or the wrong treatment given -- accounted for 13 per cent of notifications, or 16,250 incidents. The figures were compiled by the NSW Clinical Excellence Commission, whose CEO Cliff Hughes will present some of the findings at today's Australasian Conference on Safety and Quality in Health Care in Melbourne. Professor Hughes told The Australian that all but about 400 to 500 incidents a year resulted in minor or no harm to the patients. About 37,000 of the 125,000 notifications were of a non-clinical nature, such as lost or stolen property, or complaints over how a patient was spoken to. However, he conceded many incidents could be prevented by better hospital procedures, and said the data was being used to change the times at which some common yet potentially dangerous drugs were given.

An example was the blood-thinning drug warfarin, which is commonly used to reduce the risk of strokes and heart attacks or for patients with irregular heart rhythm. Too large a dose could cause haemorrhage, while too small a dose meant the drug would not work, Professor Hughes said. For historical reasons, such as the fact the results of blood tests ordered in the mornings would only be available in the evening, warfarin was usually given to patients at about 8pm to 9pm. But the figures showed a three-fold spike in adverse drug events at about that time. NSW was changing procedures to have the drug administered at about 4pm, when more staff would be on duty to monitor effectiveness and handle adverse consequences, he said. "That's a pretty good example of how this data can be used to drill down and look at the trends, and make changes in healthcare to make it safer for patients."

Professor Hughes said analysing the figures showed inadequate knowledge or skills on the part of doctors or nurses was linked to about 56 of the 500 or so serious adverse events. Over three times more (170) were due to communication issues -- for example, when key details about the patient's condition were not transferred to another ward or hospital department. "Any adverse event is the end-point of some deficiency in the system," Professor Hughes said.

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For greatest efficiency, lowest cost and maximum choice, ALL hospitals and health insurance schemes should be privately owned and run -- with government-paid vouchers for the very poor and minimal regulation. Both Australia and Sweden have large private sector health systems with government reimbursement for privately-provided services so can a purely private system with some level of government reimbursement or insurance for the poor be so hard to do?

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