When treatments only go so far
Some of the people we interviewed described limitations of treatments, such as those that did not work, only worked for so long (see 'Different views...
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.* Some people interviewed reported harm resulting from treatments or medical procedures whilst others spoke of risks or trade-offs between (potentially) harmful effects and benefits (see also ‘Interactions between different symptoms, conditions and medicines‘ and ‘Side effects of medicines‘). People with multiple health problems also faced non-medical risks, for example losing employment or becoming socially isolated. Three separate but related issues are considered in this topic:
Unintended harmful effects of treatment that could be defined as ‘mistakes’ are rare, but had happened to some people we spoke to. For example, Fred came to discover that ‘articles’ had been left inside him when he was stitched up following an operation and Kevin had a tube to his bladder accidentally cut through during surgery.
There were other kinds of unintended effects that were not due to medical error. For instance, Fred picked up an infection and Robert reported how he developed a deep vein thrombosis whilst in hospital. Others talked about a variety of bad results from taking medicines. For Amy, a long spell in hospital and Intensive Care (during which she had ‘nearly died’) left her with several problems following medical intervention; including asthma from being artificially ventilated several times and mental health and other problems associated with brain trauma. However, these did not appear as ‘unintended consequences’ of treatment but rather the result of extreme measures in order to keep somebody alive during a medical emergency.
There were also instances where people felt that they had been assaulted in some way or experienced psychological harm whilst undergoing investigations or attending for other appointments. When Tammy happened to have a seizure whilst attending the local surgery she found it to be the worst possible place to be; with health care staff stabbing her with needles whilst she was unable to respond. Anne X described how a doctor had ‘stuffed a great lump of wood in my mouth’ for her to bite down on during an investigation she found scary and uncomfortable. Fred had a probe driven into his skull via his ear that made his ‘toes curl’ and Ronald complained about repeated failed attempts to draw blood. Andrew was claustrophobic and unable to use the lift as expected by the health care staff.
Life is full of risks. Health problems bring their own risks, and because these are largely down to an individual illness or problem, we have not considered them in depth here. Information about specific conditions can be found elsewhere on this website.
The risks associated with medical treatments may be magnified for people with multiple health problems, if only because they are more likely to have more contact with health services.
One of the most talked about risks of medical treatments by the people we interviewed was side effects (see ‘Side effects of medicines‘). John had already had several operations, and when considering having a ‘mesh’ put in his abdomen to repair a hernia he had been warned that it would create problems if surgeons needed to ‘go in again.’ There was also a ‘1 in 3 chance’ that an operation would kill him because of his other health problems. Derrick was told that the risks to him of quadruple heart bypass surgery were too high by one surgeon, but other people seemed to criticise him for not having the operation. Anne Y had been advised that surgery was one option for her epilepsy, but that it could leave her brain damaged (see also ‘Prioritising multiple health problems‘). Fred had been discharged from hospital at short notice and without enough supplies or instructions about dressing a wound. He ended up using paper towels which could have been an infection risk. Gogs appeared to have to weigh up different clinical risks against each other: the risks of going outside the safe range of her liver enzymes against the risks of not completing a treatment. Kevin was only given a ‘fifty-fifty’ chance that an operation would work – leaving his mobility worse than beforehand. Again, his case was complicated by previous surgery. Loraine was concerned about having an epileptic seizure whilst left unsupervised in a hospital shower or bath.
As well as medical concerns, people also described other problems of using services that related more to how they felt emotionally or psychologically. For example, Ronald mentioned the possibility of appearing as a ‘whinger’ if he used health services too much. Fiona was concerned about not being taken seriously by doctors. She also believed that much success lay in luck or fate according to which doctor one happened to see at a particular appointment. For Loraine, the clinical relationship could become compromised if patients became too familiar with doctors, e.g. by speaking to them on first name terms (see also ‘Continuity of care‘).
Sometimes, having multiple health problems brought risks associated with other aspects of life. For example, Chris described how he was now nervous of driving on remote routes in case the car broke down and of walking outdoors in icy weather. Sue said that her marriage had broken down after her stroke. Angela had lost her job as a result of her health problems and now faced both social isolation and loss of income. Jean felt shut in as a result of her health problems and generally excluded from life. In her home, she faced the risk of falls. As an elderly person, she felt that she had been ‘thrown on the dung heap’ and suggested that old dogs are treated better than old people as at least dogs get taken out for a walk. Michael X spoke about the risk of his not being able to travel by plane if his health conditions prevented it. Anne X spoke about the many recent stresses in her life (such as being involved in car accidents) which appeared to underpin some of her illnesses. Barry talked about personality changes that could impact on his relations with others.
*National Patient Safety Foundation. Patient Safety Dictionary. Accessed 15th of August 2015.
Some of the people we interviewed described limitations of treatments, such as those that did not work, only worked for so long (see 'Different views...
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...