Knowing about multiple medicines
Listen to patients and health professionals talk about how knowing about multiple medicines is helping people to manage their conditions.
People who take multiple medicines are among those who have the most experience of taking medicines, often over a long period of time. Most of the people we spoke to estimate that they have been taking five or more medicines for at least 20 years. The majority feel that it is extremely important to know as much as possible about the medicines they are taking.
They mostly want to know about possible interactions between their medicines and side effects, both short term (such as intermittent pain or nausea) and long term (such as permanent changes to their capacity to function, for example reduced vision). This helps them to make decisions about taking a medicine. They tend to feel confident that they have made the right decision if they have enough information. However, some people we spoke to say it can be difficult to know what they need to know and they value information regarding what to ask about their medicines. This is particularly the case when a condition or medicine is new.
Sources of information
Most of the people we spoke to approach their health professionals for information about their medicines before any other source. One participant always asks for a copy of his blood test results, as he finds it helpful to keep a record of changing results and where he is improving. Many people did not realise when they first started taking their medicines that their pharmacist can answer many of their questions and offer helpful suggestions for managing their medicines. One participant says she was distracted by the fact that pharmacists ‘work in a shop’, which is not a place she associates with accurate and credible information.
Suzanne asks her health professionals where to find credible information.
Micaela has only recently discovered that her pharmacists are a readily available resource for medicines information.
Consumer organisations and hospitals
A large number of consumer organisations provide high-quality and up-to-date information. Several of the people we spoke to make use of these and find them extremely helpful in learning about every aspect of their condition, including medicines.
Many hospitals offer education services that teach people how to manage their conditions. Services are available to outpatients (meaning you do not have to be admitted to hospital to access them), usually with a referral letter from a GP. These services were invaluable to the people we spoke to who had used them. One participant attended a diabetes clinic for a month and learned how to use an insulin pen. He was able to phone the educator each day until he was confident in administering the pen independently.
Lesley joined Diabetes Australia and became involved as a volunteer. She has learned a great deal about diabetes through her various roles in the organisation.
Russell attended information sessions conducted by a consumer organisation and joined an association which he has found helpful in managing his type 2 diabetes.
The internet
Many people we spoke to access the internet for information, particularly if they cannot find what they are looking for any other way. Others go to the internet first because it is convenient.
The best course of action is to verify information found on the internet with doctors, which is what a number of people we spoke to do. They say that it is important to assess the accuracy of the information and, most importantly, how it applies to their situation. Some people also find the internet useful in sharing experiences with other people in similar situations to them, and in drawing their attention to other options, which they can then explore further with their health professionals. One person we spoke to found her current specialist through the recommendation of another chat room participant; another was suggested a treatment for a side effect that had bothered her for a long time and for which she had not found another solution.
Some people are uncertain about the credibility of internet resources, whereas many others have found reliable websites that they visit regularly. People also have mixed experiences with internet support groups, online forums and blogs. Again, people find it helpful to discuss their concerns with their doctor.
Micaela found online forums helpful when she needed to discuss what she was going through, but did not want to join a face-to-face support group.
Diana has found the internet can be depressing and scary and does not always meet her need for information.
Helen’s work in health policy means that she knows which websites are the most trustworthy. She finds credible information on the internet by limiting her searches to these sites.
People they know
Researchers and health professionals know that people often receive information about their medicines from family, friends and acquaintances. This was not common among the people we spoke to, as most of them have a great deal of experience of their conditions and have found reliable sources elsewhere. A number of them also say that they do not know anyone who has all of their conditions or takes the same medicines. Their family, friends and acquaintances are thus not at risk of the same drug–drug interactions.
The exceptions to this are the people we spoke to who are health professionals, or who work in healthcare areas and have access to colleagues who are health professionals. These people are often a convenient and trusted source of useful information. Those who work in health still need information about medicines for application to their own situation, which sometimes surprised their treating doctors and allied health workers.
Peter S’s health professionals assumed that, because he was a nurse, he would not need a great deal of information when he was diagnosed with diabetes. That was not how Peter felt.
Inadequate or conflicting information
People’s efforts to find trustworthy, credible information are not always successful. This is a frustrating experience shared by many people we spoke to. They found it important not to give up and to keep looking for information and communicating with their health professionals, even if they need to ask the same question a number of times before they have a satisfactory answer.
Jan has sought information about calcium supplements from a number of sources and has received contradictory information.
Micaela was dissatisfied with the limited information her doctors offered before she commenced a new medicine. She is proactive about finding information, but sometimes does not know where to look and would like more help from her doctors.
Suggestions when searching for information
Most of the people we spoke to are now highly experienced in finding information, as they have been managing multiple medicines for some time. They have suggestions for people who are new to medicines about what they need to know and how to find relevant information, such as the Consumer Medicine Information (CMI) for prescription and pharmacist-only medicines.
Glenn suggests that people look for information regularly and review what they know, so that it is up-to-date.
Jane emphasises the importance of knowing about medicines, keeping records and having a trusted friend or family member at medical appointments if necessary.
Views of health professionals
We also asked the health professionals what it is most important for people to know if they are taking multiple medicines.
Dr Elisabeth Wearne, GP, gives her views on what people should know about their medicines.
Associate Professor Sarah Hilmer, clinical pharmacologist and geriatrician, gives her views on what is important for people to know about their medicines.
What people also talk about
The Living with multiple medicines project was developed in collaboration with
