How thousands are sent home with aspirin for a faulty heartbeat - and risk a crippling stroke
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Victim: Fiona Birdseye, 59, suffered a serious stroke
When doctors told Fiona Birdseye that she had the heart condition atrial fibrillation, she felt only relief.
Over the past months, she had suffered terrifying episodes at night, waking up gasping for breath with her heart racing. She underwent a 48-hour electrocardiogram (ECG) to measure her heart’s electrical activity, which revealed she had atrial fibrillation, an abnormal heart rhythm.
‘When it was diagnosed I felt like I was finally in safe hands and would receive the correct treatment,’ recalls the 59-year-old catering manager from Bracknell, Berkshire.
But after her diagnosis, the hospital sent Fiona home with nothing more than reassurance and the promise, at some point in the future, of a procedure to try to regulate her heart rate. She now knows that both she and her doctors should have been a good deal more alarmed.
Atrial fibrillation is common, affecting one in four of the over-40s. Untreated, it raises the risk of stroke five times because it causes blood to pool in the upper chambers of the heart, making it more likely to clot — a clot can then travel to the brain.
But experts say medical staff routinely fail to warn patients about this risk. Furthermore, they are also failing to treat the condition properly to reduce that risk.
This can be highly dangerous, as Fiona discovered. Two weeks after being discharged from hospital, she woke up to find she couldn’t see out of one eye. She had suffered a mild stroke (a transient ischaemic attack), often a warning sign of an impending more serious stroke. Yet after three days in hospital she was discharged with just a prescription for aspirin.
But aspirin’s anti-clotting properties are far too mild to have an impact on atrial fibrillation. ‘Every year, 200,000 people with atrial fibrillation are given nothing but aspirin, which is entirely unfit for purpose,’ says Gregory Lip, professor of cardiovascular medicine at the University of Birmingham.
Ten days later, in mid-March, Fiona woke up feeling sick, dizzy and horribly confused. This time she’d had a full-blown stroke.
‘After all the medical attention and the clear evidence that I’d suffered a mild stroke with atrial fibrillation, I was given a drug that’s as useful as a chocolate teapot,’ she says.
She adds: ‘Fortunately, I was able to leave hospital after a couple of days with nothing worse than some facial droop, a tendency to bite my tongue and a reduced sense of taste and smell.
‘It’s the scare factor that’s the worst. I’ve lost my confidence.’
So why aren’t patients with atrial fibrillation being treated to reduce stroke risk? For more than 50 years it has been known that taking a blood-thinning (anti-coagulant) drug reduces that risk dramatically.
Yet what has long been seen as the only effective medication, warfarin, has significant drawbacks and under long-standing guidelines from the European Society of Cardiology, doctors have been advised to give it only to patients at high risk of stroke.
‘Warfarin is a highly potent and very effective medicine but it’s a real faff to take,’ explains Dr Matt Fay, a GP and medical adviser to the Atrial Fibrillation Association. Patients must avoid foods rich in vitamin K, an antidote to warfarin, which include salads and dark-green vegetables.
Several drugs interact with warfarin, including some painkillers, statins, high blood pressure drugs and antidepressants, some types of contraceptive Pill and the herbal remedy St John’s Wort.
Patients must also have weekly or monthly monitoring to test how fast their blood clots.
‘The drug makes it much less likely you’ll have a stroke — but you pay for it,’ says Dr Fay.
The restrictions have created a culture of excessive caution, according to Trudie Lobban, chief executive of the Atrial Fibrillation Association.
Medical staff routinely fail to warn patients about the risk of stroke, experts claim
So while warfarin was meant only for those at high risk of stroke, too few of these patients have actually been getting it — indeed, as many as half of the 850,000 people in the UK who should be receiving anti-clotting treatment are not being prescribed it, says Ms Lobban.
There is ‘a huge lack of understanding about atrial fibrillation and the role of anticoagulants within the medical profession, resulting in a lack of sense of urgency about a dangerous disorder,’ adds John Camm, professor of clinical cardiology at St George’s Hospital, London.
Three months after being diagnosed, Fiona was finally put on warfarin, and last month underwent a procedure for atrial fibrillation known as catheter ablation, in which electrodes are used to burn away the tissue causing the abnormal heart rhythm (this reduces the risk of stroke in half of those with atrial fibrillation). Fiona is now trying to return to normal life. ‘But I feel strongly that all this need not have happened,’ she says.
She is almost certainly right. For warfarin is no longer the only effective anticoagulant.
There are now three new anticoagulant drugs that have been shown to be safe and effective, and which avoid the limitations of warfarin — including the need for regular blood tests and the restrictions on food and other medications.
In May last year, all three drugs — dabigatran (Pradaxa), apixaban (Eliquis) and rivaroxaban (Xarelto) — were approved by the National Institute for Health and Care Excellence (NICE).
As a result, last August the European Society of Cardiology effectively tore up its guidelines and introduced a new test to enable doctors to identify ‘truly low-risk patients’. These people don’t need anticoagulant treatment. But all other atrial fibrillation patients at any risk of stroke should be put on blood-thinning agents, whether warfarin or the new drugs, the organisation has said.
But a year after NICE approval, the drugs are barely prescribed in the UK. This is partly down to cost, says Trudie Lobban. At around £3 a day, they are much more expensive than the pennies that warfarin costs — though it’s a small price to pay compared with the cost of treating strokes.
The main problem is a PR one: over the past year there has been a flurry of litigation in the U.S., particularly around dabigatran, with claims that thousands have been injured or killed by uncontrollable internal bleeding.
Yet the U.S. regulator, the Food and Drug Administration, has confirmed that dabigatran is at least as safe as warfarin.
‘These are powerful anticoagulant drugs, so of course it’s important they are prescribed with care,’ says Professor Lip (who has acknowledged receiving payment from drug companies to give lectures on the new anticoagulants). ‘People with kidney or liver failure should never be given blood-thinning drugs because they have an increased risk of bleeding and many of the reports of uncontrolled bleeding and deaths have been in this category.’
Another problem is that it takes 24 hours for the effects of the new anticoagulants to wear off after halting medication.
‘But in an emergency, bleeding can be stemmed by simply applying pressure,’ says Dr Fay.
A further concern is that dabigatran carries a higher risk of heart attack. Yet a study published in Archives of Internal Medicine says the risk is just 0.2 per cent per year higher, ‘considerably outweighed by the drug’s ability to prevent strokes’.
Despite this, doctors remain resistant. When John Rawlings, a 63-year-old company director, was diagnosed with atrial fibrillation two years ago, he was unable to take warfarin as he was also on pills for high blood pressure and cholesterol. Yet his GP refused to prescribe dabigatran because it was ‘too dangerous’.
Eventually the GP gave in, after being reassured by NICE experts.
Now a website, afibmatters.org, created by the highly authoritative European Heart Rhythm Association, has been set up to provide information on the new drugs.
Meanwhile, Fiona Birdseye says taking warfarin is ‘a nuisance’ and hopes to be prescribed dabigatran. But most of all, she wishes ‘desperately’ that she’d known about her raised stroke risk earlier. ‘I had the right to know everything from the outset,’ she says.
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