Self-management of medicines

It is common for people living with one or more health conditions to seek to take control of some elements of their care themselves. This might be through researching information about the condition(s), active discussion with doctors and pharmacists about which medicines to take and at what dose, arranging certain medical tests themselves, or deciding when and how much of a particular medicine to take.

Nigel was among those who stressed that it is a patient’s own responsibility to take the medicines they have been prescribed. However, Barry noted that his medicines, some of which he had been taking for a long time, had never been reviewed by a doctor. He doubted that there was time to do that within the constraints of a typical GP appointment slot. Amongst the people we interviewed the extent to which they were actively involved in their own medical care varied (see also ‘Strategies used to cope with multiple health problems‘). Graham was unusual in reporting that he takes his own blood pressure twice a day. On the other hand, Anne Y didn’t always manage her asthma in the ways she had been advised as she didn’t see it as a serious problem. Pat said that she wouldn’t normally read medicine information leaflets but that she checked on one occasion as she felt so ill. She found that she had been prescribed a medicine that needs to be used with care in people with diabetes. Because she has a large number of health problems, including some that stemmed from brain trauma, Amy is unable to manage her own medicines and her mum makes sure she takes the correct tablets at the right time.

Barry feels that doctors focus on diagnosis. He feels his GP should have reviewed his medicines in the last 8 years, but he does get hands-on advice from his local pharmacist.

Age at interview 67

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Pat got pneumonia and was prescribed a medicine that the information leaflet said was unsuitable for people with diabetes. This made her hesitant about seeing her GP in the future.

Age at interview 80

Gender Female

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Following a brain injury, Amy finds it difficult to organise her medicines, so her mum oversees the 40 or so tablets she must take every day. She previously tried to overdose on one of her prescribed medicines.

Age at interview 25

Gender Female

Age at diagnosis 22

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An important aspect of people managing their own medicines is being able to discuss the prescription of drugs with doctors and pharmacists. Pat appeared unusual in that she was able to communicate with her GP by email, including about changing her prescription for blood pressure medicines. When Anne Y started with a new consultant, she took all her prescribed drugs in for them to look at, with a view to getting the number of tablets reduced. Lee talked about how information gathering via an online forum had given her the confidence she needed to ask her doctor about stopping a particular medicine. Several people said that they preferred to control their conditions without medicines where possible. Ann’s doctor had advised her to lose weight and start taking insulin but Ann preferred to try to lose weight first since it might prevent her from needing insulin (see also ‘Prioritising multiple health problems‘). Mohammed was pleased that he was able to control his diabetes mainly through diet rather than medicines. However, he was prepared to take prescribed drugs for a heart condition which he viewed as being ‘out of my hands’.

Pat is able to communicate with her GP by email if she needs to change her blood pressure medication.

Age at interview 80

Gender Female

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Mohammed was pleased that he could control his diabetes with diet and a low dose of medication. He sees his heart condition as being beyond his control and is prepared to take drugs for it.

Gender Male

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Anne Y has seen many doctors for her epilepsy over the years. When she started with the latest one she took all of her medicines in with a view to reducing the number of tablets she takes.

Age at interview 61

Gender Female

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Warfarin is an anticoagulant used to prevent blood clots that lead to heart attacks, strokes, pulmonary embolisms and deep vein thromboses. The amount of warfarin needed may change according to a person’s clotting time or INR (International Normalised Ratio), which is measured in regular blood tests. People taking warfarin play an active role in managing this medicine through direct contact with the testing centre over blood test results and instructions regarding dose, as well as avoiding certain foods that can affect clotting time. During a recent stay in hospital, Robert had been injecting fragmin (another anticoagulant used to prevent blood clots) himself. For home medication, Steve was using a reminder app on his smartphone whilst Kevin and Madelon were both using dosette boxes to organise their tablets. Loraine had forgotten some of her medicines when travelling, but managed to find a doctor (via a train guard’s announcement) who issued her with a private prescription. Michael X and Barry had chest complaints and kept emergency supplies of steroids and antibiotics at home in case they got an infection. This was very much valued. Robert talked about how he used a food supplement to counteract the side effects of prescription medicines and added, ‘I do a lot of doctoring myself I suppose.’

Anne X has to take her own blood test samples in order to know if she needs to take more or less warfarin. She also has to be careful about what she eats.

Age at interview 79

Gender Female

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Michael X was pleased that his practice trusted him enough to give him antibiotics and steroids to keep at home in the event he had a chest infection.

Age at interview 82

Gender Male

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When Robert was in hospital he injected a clot busting medicine himself rather than have nursing staff do it. He prefers not to use drugs where possible and takes a food supplement to counteract side effects.

Age at interview 80

Gender Male

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See also related topics: ‘Side effects of medicines‘, ‘Dealing with multiple medicines‘, ‘Advice for people living with multiple health problems‘, and ‘Interactions between different symptoms, conditions and medicines‘.