Impact on medical care of multiple health problems
• Restricted treatment options due to other conditions or the medicines they took for them (see also ‘Interaction between different symptoms, conditions and medicines’)
• Dealing with uncertainty and confusion, e.g. sometimes not knowing what disease (or medicine) was causing problems
• Disagreements between health professionals (or between doctors and patients) made worse by the complexity of their medical situation
Those who successfully dealt with these difficulties appeared to have become very involved in their own care in terms of educating themselves about diseases or treatments, or assertively expressing their own care needs. However, there were some cases in which people could not or would not become more engaged in their own medical management.
For most common diseases or health conditions there are expert clinical guidelines that set out the recommended treatments. However, where people have another health condition at the same time, or are already taking other medicines, this may mean that they cannot have the recommended or best treatment. Loraine’s epilepsy meant that she was unable to have a grommet fitted to help with her hearing difficulties or have treatment for her irregular heartbeat. Ronald said that a kidney problem limited the diabetes medicines available to him, and David was taken off a particular blood pressure medicine because it could mask symptoms of a diabetic hypo. Rosemary was not allowed a particular medicine because it could raise her blood sugar. John was unable to take non-steroidal anti-inflammatory drugs for a back problem because of his kidney and heart conditions. The back problem also meant that he was unable to do the exercises recommended for his heart condition. Robert was also unable to do recommended exercise and his age and other conditions meant that it was considered too risky for him to have a knee replacement operation that would have made exercise easier. Derrick had bought himself a mobility scooter to aid his mobility but his GP had advised him not to use it because he needed to keep active. An increasing number of conditions and/or medicines can sometimes make it difficult to find what exactly is causing a particular symptom or health problem. Some people reported particularly confusing experiences, e.g. of trying to find a treatment that worked or understanding what was going on when more than one doctor was conducting investigations at the same time as each health condition was being looked at by different specialists During the course of investigations, an initial diagnosis might change in light of later facts. Lottie said that when she was first diagnosed with diabetes the professionals kept changing their minds as to whether it was Type 1 or 2. Several people believed that diabetes is more difficult to control than some other conditions and may involve a degree of ‘trial and error’, Andrew saying that controlling blood sugar levels with insulin is an “inexact science.” Different health professionals sometimes have different views about a diagnosis or treatment. Among the people we interviewed, COPD (Chronic Obstructive Pulmonary Disease — a form of lung disease) emerged as a particular diagnosis that tended to cause disagreement between health professionals. In other instances, people disagreed with health professionals about their diagnosis. Because of the kinds of disagreements, uncertainties, confusion and limited treatment options outlined above, some people we spoke to had taken an active role in the management of their care. However, not everyone has the necessary skills or feels able to do this. Increased patient involvement was mentioned more in interviews with former professional people, including those who had previously been health workers. Gogs, who had herself previously been a nurse, nevertheless felt unable to fully understand clinical information about the management of one of her conditions - rheumatoid arthritis. Val had questioned her fibromyalgia diagnosis and asked for a review of her medicines, which resulted in some being removed. Loraine asked to have regular blood tests after reading on the internet that she should be having these because of the effects of the anti-epileptic medicines she took. When asked about treatment decisions, Jean said of her GP, “We talk about things and we discuss what might be the best path to go, and I might suggest something and he might suggest something”. Both Gogs and Val – who were relatively active in their own care – had paid for private consultations in order to get around long NHS waiting lists for appointments in specialist clinics. However, in both cases having private appointments had ended up complicating their care as they ended up with different doctors with different opinions and the problem of transferring medical information between different departments (see also ‘Continuity of care’). It had been put on Gog’s records that she was a ‘highly complex multiple illness patient’, and so if she phoned the GP surgery for help she could expect her needs to be addressed quickly. Whilst the difficulties of having more than one health condition meant that some people had to become very involved in driving medical care themselves, others were either not able to or did not wish to know the details of their condition. Kevin was disbelieved by medical staff, which he suspects was because of his learning difficulties. Whilst this incident was not about his own care, it did highlight the way that doctors can give different credibility to patients’ accounts according to their individual circumstances. Barry said that he preferred not to know about the details of his medical condition and left decision making to the experts.
*Sinnott, C., Mc Hugh, S., Browne, J. and Bradley, C. GPs’ perspectives on the management of patients with multimorbidity: systematic review and synthesis of qualitative research. BMJ Open 2013;3:9 e003610 doi:10.1136/bmjopen-2013-003610