Background
Methods
Sample and recruitment
Data collection
Sample and participant demographics
Number | Percent | ||
---|---|---|---|
Gender | Female | 15 | 57.69 |
Male | 11 | 42.31 | |
Age group | 65–74 | 10 | 38.46 |
75+ | 16 | 61.54 | |
Prescribed medicines | ≤6 | 7 | 26.92 |
7–10 | 8 | 30.77 | |
11+ | 11 | 42.31 | |
Long-term conditions | 2–3 | 7 | 26.92 |
4–5 | 7 | 26.92 | |
6+ | 12 | 46.15 | |
Requires mobility aid | Yes | 9 | 34.62 |
No | 17 | 65.38 | |
Living status | Alone | 7 | 26.92 |
With partner | 16 | 61.54 | |
With family member | 3 | 11.54 | |
Index of Multiple Deprivation (IMD) Decilea
| 1–2 | 9 | 34.62 |
3–4 | 12 | 46.15 | |
5+ | 4 | 15.38 | |
Total number of patients | 26 | 100.00 |
Data analysis
Patient and public involvement
Results
Threats to patient safety
Themes | Examples |
---|---|
Everyday management of: | |
Health | • Struggles to accept limitations and does too much. • Views old age as cause of or reason for health problems. |
Treatment | • Has side-effects of medication or treatment. • Limits use of medication or treatment. |
Primary care: | |
Access | • Finds it difficult to get an appointment, esp. with preferred provider. • Restricts primary care attendance. |
Coordination | • Received contradictory or conflicting information or advice. • Unable to obtain prescribed medication from pharmacy. |
Breakdowns in: | |
Communication | • Did not receive results or feedback. • Is unforthcoming about health problems. |
Relationships | • Sees healthcare staff as unhelpful, rude, or disrespectful. • Feels they are not always believed. |
Everyday management of health
Threats to patient safety also arose where patients struggled to accept their functional limitations. Some appeared frustrated by their difficulties and, at times, tried to move too quickly or do too much. On a few occasions, this led to injury as a result of falls when, for example, throwing a football back over a wall or carrying too much shopping. Some patients identified how their behaviour had contributed to these incidents but others blamed cumbersome mobility aids, or questioned the quality of joint replacements.“I have gone to see different people … they all tell you different things … you’ll try anything when you’re in pain.” (Deborah, interview transcript)
Those who had sustained injuries appeared to fear falling again, and tried to avoid certain activities, such as going for walks during Autumn and Winter when the ground may be slippery. However, this could further threaten patient safety by reducing mobility and fitness, which could increase social isolation and effect patients’ ability to manage their weight and health through exercise:“I had a fall … my own fault doing something stupid.” (Ruth, interview transcript)
Patients worried about their health declining and whether they were developing additional problems, such as dementia. These concerns persisted when patients did not discuss them with a care provider:“…with my bones being creaky, I can’t exercise as much and because I can’t exercise the weight is going up. When the weight goes up that contributes towards cholesterol so it doesn’t help.” (Richard, interview transcript)
However, patients often attempted to normalise their symptoms in relation to age. This perspective was substantiated when providers indicated particular health problems were “not uncommon for people of my age”, and by the similar experiences of friends and family:“Memory has changed, not spoken to anyone, hope it’s not Alzheimer’s.” (Deborah, field notes)
Issues arose when patients were not aware how serious certain symptoms or conditions could be. One person developed chronic kidney disease before learning more about his diabetes and how to manage his diet.“I don’t sleep very well but that’s another one but then again I put that down to old age because everyone I know doesn’t sleep…” (Ruth, interview transcript)
“I’ve had enough. I’m getting stressed out with it all. I just don’t want another one [operation]. I’m too stressed out. … I can’t do it [put weight on joint] and it gets me. It hurts…” (Edward, interview transcript)
Everyday management of treatment
A number of patients knew why they were taking medications but struggled to remember or pronounce their names and tended to differentiate according to shape, size, and colour. This could potentially cause confusion when patients needed to discuss medications with care providers, request repeat prescriptions, or if the appearance of a medication changes. At times, these problems appeared to arise because of the sheer volume of healthcare information patients needed to retain:“I’ve put on a lot of weight. That’s another problem you see because with the COPD [chronic obstructive pulmonary disease] they tell you not to put on any weight. It’s bad for you but you put it on because of the steroids.” (Ruth, interview transcript)
Whilst some patients received blister packs put together by their pharmacist, others relied on a family member to manage their medications. However, carers could become overwhelmed and confused when changes were made:“I do get occasional problems where I have to use the, what’s it. I’ve forgotten the name of that as well now, you can see how much of my brain is filled up with these medical things…” (Michael, interview transcript)
Some patients sounded flippant when referring to the sheer quantity of medications they take but also expressed reluctance to take yet more. One patient described medications as “the bane of my life” and some preferred to live with minor health problems rather than take extra tablets. Others seemed concerned about all aspects of their life being medicalised, or the combined effects of the medications they take and their potential to cause harm:“Are they blood pressure? I don’t know, they changed them you see. He’s just had them all changed and I’m not with it myself.” (Edward’s wife, interview transcript)
Patients did admit to making mistakes in taking medications, such as missing a dose, but more frequently mentioned intentional non-adherence, especially in relation to painkillers. Patients, particularly those with diabetes, also talked about being unable or unwilling to follow other medical advice, with some choosing quality of life over strict adherence:“I don’t like taking tablets … because it’s not a natural thing to be doing. I don’t think. … It must be doing something wrong to your insides.” (George, interview transcript)
“…if you live like they want you to live you wouldn’t have a life … you’ve got to enjoy what you’ve got while you’ve got it.” (George, interview transcript)
Primary care access
Some services seemed to place responsibility for managing appointments on the patient, whereas others sent reminders. Where GP surgeries normally assumed this responsibility, some patients appeared to depend on these reminders, and would wait to be contacted even when they were aware appointments were overdue:“…my biggest problem is getting in to see the doctor, because you want to see your own doctor. So I’m usually there at half past seven in a morning, if I get there at half past seven, I can get myself an appointment for the same day.” (Elizabeth, interview transcript)
The patients’ role in accessing care was further highlighted by those who reported not having seen a dentist for years, and restricting or delaying attendance at their GP surgery, preferring to try and diagnose or deal with health problems themselves. For some, this appeared to be about avoiding the “bother” of an appointment but for others the approachability of care providers was an important factor. Failures to access care could also represent uncertainty about what symptoms were a ‘normal’ part of aging and what is a ‘good enough’ reason to request an appointment:“…it’s supposed to be happening about now but it hasn’t happened, I don’t know. I don’t set that up. It comes from them or else it won’t happen”. (Thomas, interview transcript)
“It would be useful to have a booklet, ‘what to expect when you get older’, so you know when to go to the GP.” (Ruth, field notes)
Primary care coordination
Whilst patients continued to attend review appointments with practice nurses, some expressed concern that these were a waste of time and NHS resources, and questioned the point of being asked “the same questions all over again”. This was especially true when patients did not “feel any wiser” after an appointment, and seemed to be compounded by care providers’ explanations that they have “got to fill all this in”.“I couldn’t understand why she’d crossed it out. I mean she shouldn’t have done that. … Four puffs four times a day is what it said on the prescription and I said add it up and when she added it up she realised, yes, I did need what I was getting but it took a lot of convincing with her. I was very angry over that.” (Ruth, interview transcript)
Contradictions also arose from discrepancies between a person’s experience of health and healthcare and that of their friends or relatives. Such uncertainty could be compounded when patients’ symptoms were normalised in the context of their older age.“…he said you have a 40 per cent chance of a heart problem or a heart attack within the next ten years. Hardly looking at me to tell me this … and your diabetes is poorly controlled. … I came away and I was really, I was quite upset by it and … my wife said ring your consultant … He was angry that I’d been told that my, I was a poorly controlled diabetic. … he said words to effect that that doctor does not know what it means to control diabetes”. (Thomas, interview transcript)
Coordination issues also arose in relation to community pharmacies, with patients finding that prescribed medications were not available when needed. One patient suggested such problems arose because of a lack of organisation and planning by the pharmacy and a lack of communication between the pharmacy and general practice. As well as leaving patients without medication, these issues necessitated repeated visits and phone calls by already burdened patients, and appeared to create additional work for both pharmacists and GPs.“…how did they come to the conclusion I’d got it because I just happened to go to the doctors one day, feeling a bit out of breath, and she put me on this machine … and that was all I had to diagnose that I’d got COPD. Now, other people I know they’ve been sent to hospital and had all different tests done…” (Ruth, interview transcript)
Breakdowns in communication
Lack of communication also resulted in some patients being unaware of how and when, or when not, to take medications or supplements, until these were discussed with a pharmacist at a later date.“Nobody explained what had happened at all in the hospital. All they were doing was making your chest better, which is fine and fair enough, but nobody ever said why I had got a bad chest.” (Thomas, interview transcript)
Patients reported operating on the assumption that ‘no news is good news’ when it came to test results, as these were often not communicated:“He said I don’t know why they’ve send you [Frances], I’ve nothing … he said what’s the matter? I said well, I don’t know, I said because I have everything what you’ve given me, so that were it.” (Frances, interview transcript)
As noted earlier, some questioned the point of their long-term condition review appointments, as these were repetitive with little opportunity to have a discussion and learn from the consultation:“…I see [practice nurse] for the diabetic checks or blood tests. … I had to come in here for another blood test, but I’ve not heard anything since, so I take it, it’s alright.” (Elizabeth, interview transcript)
In some cases, the patients themselves appeared unforthcoming about their health problems, seemingly preferring to think of themselves as “lucky” or their conditions as “nothing to worry about”:“‘Don’t feel wiser’ after COPD review with practice nurse, ‘would rather have a discussion’, nurse just checks.” (Ruth, field notes)
“During the interview, Martha seemed to be breathless, she also had difficulty walking … but she did not report problems in either of these areas.” (Martha, field notes)
Breakdowns in relationships
Some patients were concerned about how knowledgeable their primary care providers were and expressed a preference for seeing specialists in relation to their long-term conditions. Although the perceived competence and expertise of staff had an impact on patients’ perceptions of their care, the manner of staff was particularly important. Some providers were seen as “better” because they were more likeable:“…when I do [see the GP] it’s a case of in and out … they show you the door as soon as you get in … I’d like to not feel the way I feel when I go to the doctors because believe you me I feel as though I no rights to be going. You don’t get a warm welcome let’s put it that way.” (Ruth, interview transcript)
Relationships had broken down where healthcare staff, including receptionists, were perceived as unhelpful or rude. Examples included care providers eating during, or looking at their computer screens throughout appointments; not asking if it was okay to have students present; and criticising patients for their actions or help-seeking behaviours rather than offering assistance or advice:“…the nurse I saw last time, she was very nice… some are better than others and, I’m not saying better but you know, she, well, I liked her very much…” (Gloria, interview transcript)
Patients seemed annoyed, angry, and offended when discussing these encounters but it was their experiences of not being believed that seemed to leave them feeling most vulnerable. Difficult situations became more troublesome when healthcare staff were seen as portraying themselves as infallible and their patients as wrong:“It’s as though [GP] doesn’t want to bloody touch you. A normal gentleman would help you on with your coat because I was really struggling and it was, he didn’t want to do it because he said to me you should have put the other arm in first.” (Ruth, interview transcript)
One patient reported great success at managing a number of his health problems through diet, in combination with medications where necessary. He found it impossible to work with providers who did not take this seriously, and vowed “never to go to” those doctors again.“With some doctors … the ones that think they’re absolutely right, they know it, the statistics tell them that and the computer tells them that, they are the ones that are really difficult to deal with.” (Thomas, interview transcript)
“That fibromyalgia is really debilitating … I could hardly walk about until it was diagnosed. They just kept saying it was arthritis but I was so weary. Then I went to see another doctor … and he said straight away what was the problem, and actually knowing you’ve got a problem it takes a lot of the stress away when people say they don’t believe you … once you know that you’ve got something you face up to it and you can tackle it better.” (Brenda, interview transcript)