The sad news that Dr Evan Harris, the young Liberal Democrat health spokesperson, has temporarily stepped down to be with his girlfriend who has a terminal brain tumour is touching. It is also a genuinely alarming story.
Harris - a qualified medical doctor - yesterday described how his girlfriend Liz O'Hara, 29, who was suffering almost constant severe headaches and nausea, was twice sent away by her GP with headache tablets. When she was finally referred to hospital, a junior doctor ignored Harris's pleas for a brain scan.
She eventually got the scan only when she returned home to Ireland (by which time she did not know what day it was). O'Hara turned out to be suffering from glioblastoma multiforme, a highly malignant cancer that kills most sufferers within 18 months of diagnosis. Harris's outrage is entirely understandable. "I am furious," he said. "If even I, in my position - and they knew who I was - couldn't stop it happening to someone dear to me, what about other people?"
What about us, indeed? The chance that a similar misdiagnosis or medical error will happen to you is scarily high in Britain today. A 2001 study in the British Medical Journal said as many as one in 10 patients admitted to our hospitals experience a medical mistake. According to the National Patient Safety Agency (NPSA), a special health authority created to make the NHS safer, an estimated 850,000 incidents and errors happen every year in the NHS. A third of these "adverse incidents" lead to disability or death. And nearly half (47%) are preventable.
In some ways this is hardly surprising. It has been estimated that healthcare professionals carry around about two million pieces of clinical information in their heads. With staff shortages, marathon shifts and a system of communication that is far from perfect, it's not surprising that occasionally they get things wrong. Harris went further, blaming a "doctor knows best" culture within the health service. "It's an attitude problem," he said. "Doctors sometimes think they are not going to be pushed around by relatives or patients."
The NPSA is working to encourage medical staff to report incidents and "near misses" so that the health system can learn from them. And such endeavours do seem to be paying off. Dr Liza Keating, a specialist registrar in emergency medicine at the John Radcliffe hospital in Oxford, says: "Things are much safer now than they were when I qualified [in 1995]. In my speciality there are more senior people around all the time. The mechanism for dealing with error is more robust than people would like to believe."
"Yes, we do mess things up, and yes, people do die," Keating admits. "But," she says, "there is not, in my experience, a culture of cover-up."
Systems for catching medical errors include, in accident and emergency, regular "morbidity meetings" where each death is analysed, from the moment the person is admitted, to the moment they die. "But at the end of the day - and people don't like to think about this - you are going to be seen by other human beings who are fallible," says Keating.
Denise Parkinson is still wrestling with the emotional fall-out of her particular brush with human beings in A&E. She was considering IVF when she finally became pregnant, but six weeks later she started bleeding and went to accident and emergency. "This was probably my biggest mistake," says Parkinson. A junior doctor diagnosed a miscarriage. A few hours later, she had a D&C (dilation and curettage) under general anaesthetic - an operation to clear the uterus of any fragments, and minimise the chance of infection.
"I was upset at the time," says Parkinson. "But I trusted the doctor." In the weeks following the operation, she felt "progressively worse", with sickness and no energy. "The GP said it could be psychosomatic - a reaction to the loss." She went to Canada for Christmas with her partner, where she snowboarded, ate sushi, drank champagne with friends, and generally tried to forget. "By the end of February [around five months after the operation] I was feeling terrible - vomiting, and bloated".
Parkinson, wondering if she could be pregnant again, did a test and discovered that she was. She went for a scan, believing herself to be around six weeks gone. On the screen, however, she saw a fully-formed baby. "The nurse said, 'Congratulations, you're half way through the pregnancy'." Parkinson, while "awed and overwhelmed at the miracle that had happened" was also, understandably, "very, very upset that I could have had this baby taken from me".
Martha was born a few months later - a perfectly healthy 7.5lb baby. "She truly is a miracle," says Parkinson. "But it still chills me that she might not have existed at all - because of a medical blunder." Her advice to other patients is clear: "Don't put blind faith in doctors. Get a second, third, fourth opinion. Get to know your body more. Read more about your condition. Inform yourself."
Many victims of medical errors - like Robinson or Harris - react by publicising their experience. The rest of us, meanwhile, hear stories like this and blindly hope (or assume) they won't happen to us. Such stories, of course, are legion - healthy kidneys removed in error, toddlers killed when given laughing gas instead of oxygen - not to mention the larger scale nightmares like Harold Shipman's undetected killings, or the deaths of the Bristol heart babies. But it's easy for us to view these as random acts of bad luck, misdemeanor or miscalculation, rather than anything we can actually alter by our own behaviour.
This, apparently, is a dimwitted attitude and we need to snap out of it. We are, at least, improving slightly. A report in last week's British Medical Journal showed we are changing the way we interact with our doctors. We are less compliant, and in this age of internet health and informed choice we expect to discuss and agree treatment options, rather than unquestioningly accept the doctor's advice. We do, however, have a long way to go before we truly become, as they say in the States "an active member of our own healthcare team".
Approximately 40% of all medical errors happen during surgery. In primary care, according to statistics from the Medical Protection Society on settled claims, the most common error is delay in diagnosis, or misdiagnosis (63%). Second are medication errors (19%). According to Peter Walsh, chief executive of the independent charity Action for Victims of Medical Accidents (Avma), the best way to avoid this happening to you is to ask questions and get clear answers. "Take up your stated right to have the proper treatment and any alternatives fully explained to you in language you can understand."
In reality, this does not always happen, says Walsh. Often people are "in a state of emotional turmoil" when treatment is being discussed. "They can feel disempowered, or in awe of the profession," and often "the technical language" is simplyimpossible to grasp. Take a friend or relative with you, says Walsh, who can help you decipher what is going on. Many peo ple say that information goes in one ear and out the other when they have just been given, say, a cancer diagnosis. Once you are clear on your treatment, go that little bit further, says Walsh. "Ask for references - reputable websites or sources - so you can read up on your condition".
Many of us, almost unconsciously, feel that doctors have godlike powers, and we are under them. Not so, says Walsh. "Be assertive. Get to know about your doctor - especially if you are having surgery. Ask what their success rate is, how often they perform the surgery. And if you are unhappy, you can - within reason - talk to your GP about an alternative referral." Finally, if something does go wrong, says Walsh, "you have a perfect right to have things fully explained, and if necessary to ask for a formal investigation."
How to reduce your risk
Check handwriting
If you can't read your doctor's handwriting, the pharmacist might not be able to either.
Ask questions
What is your medicine for? How are you supposed to take it, and for how long? What side-effects are likely? Can you take it with other medicines or dietary supplements?
Demand hygiene
If you are in a hospital, don't be scared to ask healthcare workers whether they have washed their hands. Some nurses now wear badges saying: "Have I washed my hands? It's OK to ask."
Get clarity
Make sure that you, your doctor and your surgeon all agree and are clear on exactly what will be done. Don't be afraid to ask for a second opinion.
Get test results
If you have a test, don't assume that no news is good news. Get the results.
'Brown bag' your medicines
Make sure that your doctor knows about every medicine you are taking, including prescription and over- the-counter medicines and dietary supplements, by taking them all with you to the doctor's at least once a year.
For more information, visit Avma.org.uk and Npsa.nhs.uk
