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Risks and potential harms for patients
This topic covers people's experiences of 'patient safety'. Patient safety is defined as the prevention or avoidance of injuries or accidents resulting from health care.*...
The people we interviewed expressed a range of views about medicines in general and specific treatment in particular. In common with what is known from research*, some people resisted the idea of taking medicines whilst others rather saw them as a fact of life. People also talked about their experiences of taking medicines, the ones that worked for them and ones that didn’t.
Madelon, who was 93 years old at interview, said that she had got used to taking medicines since being diagnosed over 20 years ago with diabetes and began having ‘little strokes’. Andrew was in such severe pain during the onset of pancreatitis that morphine was essential for 12 months. When Jeffrey was diagnosed with heart disease and diabetes, he was told that he was going to be put on tablets for the rest of his life. Leonard was on ‘quite a range of tablets,’ and he felt that they were keeping him alive. Loraine had been on anti-epilepsy medicines since aged 5 months old. As a teenager she had also been told that she would be on medication ‘for the rest of your life.’ Lottie and Amy recounted similar tales. Anne X avoided taking medicines until she was diagnosed with heart disease in her 50s. By the age of 70, taking warfarin became a medical necessity. Similarly, Steve’s lack of hormones meant that replacing them was a medically necessity as well as treating the cause of the problem.
People often feel unhappy about the prospect of having to take a particular medicine. For instance, Anne X had been reluctant to take antibiotics for cellulitis but did so to avoid being hospitalised, and Pat had felt resistant at first to the idea of using insulin for her diabetes after her tablets stopped working. Robert was among those who said that they ‘take painkillers as little as possible’ and saw painkillers as a last resort when the pain has become ‘really bad.’ Lottie had got fed up having a ‘huge great bag of pills’ and sometimes felt like she didn’t want to take them, although she wasn’t sure whether the medicines were making any difference or not. Lottie, Graham and others questioned the long term harmful effects that might come from taking medicines. Val described medicines as ‘toxins’ and wondered about the effect on the body of combinations of different ones. Graham was the most extreme in his views about medicines and said outright that he doesn’t take medication, although his account revealed that he did use small doses of low level painkillers. He had also stopped taking a medicine prescribed for a balance problem after he found out about some exercises that seemed effective. Barry had become depressed after a stroke and was put on ‘quite strong tablets’ but his wife Margaret was pleased to report that he has now ‘managed to get off them.’
Some of the people we interviewed spoke of circumstances where the medicines they took were seen to be effective in managing symptoms. Lee’s hay fever was controlled with antihistamines. Ann found her life was greatly improved by tablets and inhalers. Jeffrey’s tablets were working fine and he had never experienced side effects. Robert felt that steroids had helped a swollen foot and that a course of antibiotics had ‘cleared him out’ following a chest infection. Michael X had also found antibiotics effective when he had pleurisy and also to prevent other infections. Leonard was pleased that he had found control by stents and medication, rather than having invasive surgery on his heart. Sue’s colitis and asthma were well controlled by medicines. In contrast to other people with epilepsy, Fiona found that hers was very well controlled since she was put on a new medicine when she became pregnant. Tony’s epilepsy was so well controlled by medicines that he got his driving licence back. Amy found that her medicines were helping her manage her conditions ‘quite well.’ Kevin said that his blood pressure had ‘gone back to normal’ following treatment and that his pain medicines were effective. Steve felt that he was a lot calmer since being put on steroids.
Tammy had tried more than six different sorts of anti-epileptic treatments over nearly twenty years but had yet to find a medicine that was effective in controlling her seizures. Anne X told a similar story about anti-epilepsy medicines that don’t work. Gogs told how none of the medicines used to treat her rheumatoid arthritis had worked. Others were critical of specific medicines. For Andrew, metformin ‘didn’t work’ with his diabetes. Barry was prescribed various treatments for an eye infection, but the only effective remedy he found was to get drunk. John had two injections into his spine that ‘didn’t work’. Pat had steroid injections that were ‘extremely painful,’ ‘neither of which worked.’ Robert, Val and John were among those who referred to certain types of pain, e.g. nerve, muscle or joint pain that simply could not be completely cured by medicines. Loraine was reaching the limits of her anti-epilepsy medication as she was now on the maximum dosages of her medicines and was running out of options.
Some people we spoke to reported that medicines only seemed to work for a certain amount of time; either because the condition became progressively worse or because the body somehow ‘got used’ to certain medications. This was mentioned exclusively by people with diabetes, epilepsy and asthma, although it could theoretically apply to other conditions (see also ‘When treatments only go so far‘).
*Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., & Campbell, R. (2005). Resisting medicines: a synthesis of qualitative studies of medicine taking. Social science & medicine, 61(1), 133-155.
This topic covers people's experiences of 'patient safety'. Patient safety is defined as the prevention or avoidance of injuries or accidents resulting from health care.*...
The more health problems people have, the more medicines they might be using. 'Medicines' include tablets, capsules, liquids, creams, inhalers, eye drops, and injections (e.g....