Living with multiple health problems
Impact on medical care of multiple health problems
Just as multiple health problems create difficulties for patients they can also create problems for health professionals.* Our study was based on patients’ experiences; we did not ask doctors and nurses what they think about managing people with several conditions. However, sometimes the people we interviewed talked about how they felt that having multiple health conditions had complicated their care and how they dealt with that (or not).
Nigel feels like he gets one health problem after another. He attends many health appointments where different doctors give him different advice. He refers to his GP because she knows him best.
Nigel feels like he gets one health problem after another. He attends many health appointments where different doctors give him different advice. He refers to his GP because she knows him best.
And if you do get, you mentioned there that you perhaps see a different specialist and there’s a different focus.
Yeah.
For each of those.
Yeah.
How do you deal with that?
I always refer back to my GP.
Right.
Because she knows me best. These people see me once or maybe twice. My GP sees me maybe twice a month and she knows how I react to certain situations. I’ve suffered with depression since I was twenty and she knows if I’m on a certain tablet, that can trigger a depression again. So she’ll advise me or she’ll advise me not to take that tablet and to give an alternative. I always I always go back to my GP because she knows me best and she knows more about me than the people at the clinics, at the hospitals.
• 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.
Because of John’s multiple health conditions and existing medicines list his treatment options are limited. This affected a recent episode of recurrent urinary tract infections.
Because of John’s multiple health conditions and existing medicines list his treatment options are limited. This affected a recent episode of recurrent urinary tract infections.
Yeah, there, there…there’s a cumulative thing because it’s not just one condition.
There are lots of little things. For example, because of the, kidney problems then I’m not able to take non-steroidal anti-inflammatory drugs for the back and the nervous problems. I can’t take things like diclofenac, which is a, an anti-inflammatory thing, because not only is it not recommended for kidney problems, it’s also got, not recommended for cardiac patients.
Right.
Because of the exercise that I should take for the cardiology side of it I’m not able to do because of the back problems. And every time we’re looking at, um, medications they’ve got to take all these ramifications into account. So the medications that I’m able to take are restricted.
And how many medications are you taking at the moment?
On a daily basis, six. And because some of the medication that I take caused stomach problems, I take proton pump inhibitors maybe once a week or so, when…whenever I feel as though the… that I need to take that I take proton pump inhibitors. I use an anti-inflammatory gel when on a, on a bas… the basis of if I… my back is so bad and then I take it and rub it on, but it’s not the best thing to take, even though on television it says it is. The… all these little things knock on. I’ve just had, almost 12 months of recurring urinary tract infections, and again which antibiotics can you take with the pro…with the other problems I’ve got?Robert cannot do exercises at present due to his health problems. He might benefit from a knee operation but his age and conditions mean he cannot undergo a general anaesthetic.
Robert cannot do exercises at present due to his health problems. He might benefit from a knee operation but his age and conditions mean he cannot undergo a general anaesthetic.
Yes, right. Okay.
All various ones, you know, and you’ve got to start up by warming your body up and you know, the bottom ones, I’m not very good with my legs you see with this hip job, so stepping up and stepping down is a no you see, so anything like that I can’t do.
Right. Right.
But all the above the waist ones, no problem.
Yes, yeah.
And bending, of course, is out. I can’t bend.
I the elasticity has gone in my back, it’s be in a state I would think.
My back with one thing and another, with the disc going and that sort of thing.
Right. Okay.
You know, it’s, well, it’s just the way it goes. I have a knee that’s quite bad. I suppose it doesn’t help when your fluids stop flowing and would be dried up so it would be bone to bone. Because I could get, sometimes it collapses on me, you know.
Right. Right.
But that’s age. It’s age-related. The only way you’re going to get any cure is is a new knee and there could be a lot of problems with, they can’t put me out completely.
Yes.
It’s only real emergency I with the COPD, they’ve no chance really of the last time I went out completely, actually, was some time ago now and I think they had some problems, actually, and I think it was double pneumonia. I was in hospital mind you.
Right. Right.
But it created a lot of problems. I’ve never been out again. The last time that happened I had to I had I had my prostate done. And the anaesthetist comes round and have you done that before, you know, talks to you and that. That night as well, had internal things like that and anyway, he said, “I’ve got three things I could do in three ways now. Put you out completely,” he said, “In your case really, you don’t want to do that because you’re not, you know, you’re not a good candidate.”When Gogs developed lung problems related to her rheumatoid arthritis it was decided that the chest doctors should lead her care. She tried a variety of medicines, several of which she couldn’t tolerate due to side including weight loss.
When Gogs developed lung problems related to her rheumatoid arthritis it was decided that the chest doctors should lead her care. She tried a variety of medicines, several of which she couldn’t tolerate due to side including weight loss.
Well, no, what happened was that they decided that, you know, yes, I’d got this rheumatoid lung, so rheumatology said, well, we won’t have anything to do with you, err, we’ll be guided by what the chest physician says.
So this rheumatoid lung, is that a separate condition or is it part of…
No, it’s part of it, yeah.
It’s part of it.
So if I have, my understanding is, if I have flares and it becomes quite active, then the inflammatory process takes place in the lungs as well.
Okay.
Which means that they become more and more fibrosed.
Right.
Yeah.
So is your treatment sorted out, such that you don’t have side effects now?
There…there was, yeah, I went through a few processes there, I had another drug which was equally unpleasant and that had to be stopped and then I spent possibly a year, err, just being covered by steroids. So, you know, you can go back to the days when you…you knew about it. And the steroids caused havoc, but the other drugs also caused havoc with my digestive system and I lost a tremendous amount of weight, in fact, I haven’t put any weight on, I’ve only lost weight since I was on steroids and lots of weight, you know, I was, oh, sixty-six kilos when I started, and I’m about fifty, fifty-one now, kilos. Err, it’s fairly stable at the moment, but what I’m on is not affecting me either now.Val feels that GPs need to be quicker to admit when they don’t know what’s happening or what the treatment should be, and referring on to specialists.
Val feels that GPs need to be quicker to admit when they don’t know what’s happening or what the treatment should be, and referring on to specialists.
Ann was sure that her breathlessness was not caused by asthma despite her GP being adamant that it was. She was later diagnosed with COPD.
Ann was sure that her breathlessness was not caused by asthma despite her GP being adamant that it was. She was later diagnosed with COPD.
So I knew that I had not got asthma and it was nearly three years before I, I wouldn’t say bullied my doctor, but I said “It’s not asthma. It’s got to be something else.” So eventually, they discovered or decided that it was COPD. Apparently, they’re very, very closely related, the two. So never having heard of COPD there was quite a learning curve to find out what had gone wrong here and again, I was given tablets and inhalers and so on and, consequently, felt much better, because before then I was finding I wasn’t able to go upstairs. I wasn’t able to walk great distances and I certainly couldn’t walk fast and that was not a good thing. In fact, sometimes I got so slow that I had to stop after about twenty paces. At my time of life, I think I was just about fifty then, I thought, “Well, this is not right. I have to get something done about it.” Farza likes to lead GP consultations and has been fighting to gain access to a Community Psychiatric Nurse (CPN) for some time.
Farza likes to lead GP consultations and has been fighting to gain access to a Community Psychiatric Nurse (CPN) for some time.
I think [pause], I tell him what to do.
Right, okay.
Because I'm, yeah, I'm the one in charge, really.
Okay.
No him. sometimes, yeah, he tells me what to do and I do it. But it's not him telling me what to do, so I, I prefer that, I think I prefer it the way it is.
Right, okay.
Because I'm the one who's suffering.
Yeah.
So I'm the best to tell someone, what I'm going through. He's not the best...well, he is, he's got, he's got, he's very knowledgeable. But I am the one who experiences it, on a day to day basis. And I can tell him what's this, what's happened, this, and he can revert back, and I can...you know, we help each other that way.
And how responsive is he? So if you say, look, I really need to see a CPN, does he kind of help you to achieve that, that goal?
Well, he hasn't. I asked to see a CPN, but he seemed to brush it under the carpet, he brushed it under the carpet.
I've been fighting for it for a very long time, for a CPN, a very, very long time. But my psychiatrist says, you know, I think, you know, I think he's gonna see if he, if I can, if he can put a word in for me, and see if I can get one. But it's not easy now, it's not easy. I've explained that to him. It depends on each area.Kevin was in hospital at the same time as his father, who was dying. Kevin had problems visiting his dad because some staff did not believe he was his son. There was no apology when an aunt confirmed that he was.
Kevin was in hospital at the same time as his father, who was dying. Kevin had problems visiting his dad because some staff did not believe he was his son. There was no apology when an aunt confirmed that he was.
The what, sorry?
House doctors.
House doctors, yeah.
Yeah, I was trying to tell him what… who I was and what dad had, but the bloke said, you ain’t his son, he said the only son he’s got is up in [county], so I was telling him, he wasn’t even listening to me and I was fuming, we were up on the ward, we all went back to the sister… the nurse who was looking after me, she said, right, she said, give it until about quarter past 10 when the night shift come on and she said you can go and see your dad and that and I went down there and the nurse who was looking after dad, I said to her, oh, I’m his son and she didn’t believe me, so she said… because dad’s sister come down all the way from [town], she said, because I think she got there about two o’clock in the morning, up at the hospital to see dad, and she said… the nurse said to her, she said, we’ve just had a bloke off ward 15 come down and see him, she said, yeah, that’s his son, he’s been in here for at least three weeks for an operation. Then the doctors and the nurse didn’t even come back and apologise.
And why do you think they didn’t believe you? Do you think it’s because you’ve got learning disabilities?
I’ve got… yeah, because I have learning disabilities.Barry prefers to be told what to do by medical professionals rather than having input into decisions himself. He prefers not to know much about the details of his conditions.
Barry prefers to be told what to do by medical professionals rather than having input into decisions himself. He prefers not to know much about the details of his conditions.
Yeah.
How do you find that? How do you find, do you feel you have input.
No.
Into discussions there? No?
No, not at all because I know. I don’t know. I was like you. I mean you’re an expert in your job and the doctors are the experts in their job. They know what they’re talking about and, as I say, about this doctor I went to see up with my eye, you know, a five minute job or you can go for a forty-five minute job, it’s up to you [laughs].
So do you feel that you’re ever asked what you would like or?
No, never.
Right.
I’m never asked what I’d like at all and I I find that okay with me because I think if I was to tell somebody what I told the doctor about that and he just piffled it off. So what can you do?
Would you like more input into decisions.
Not really.
About your treatment?
Not really.
Right.
No, no. I don’t, I think that, because we used to have, keep a medical dictionary, when I was bad, and that’s the worst thing you can do.
Right.
[Laughs] chuck it out the door because you’ve bona fide got something wrong with you [laughs]. I don’t want to know too much. Do your job or a hobby, which but you don’t want to know too much about anything really. Because you get too involved then and, like I was with the medical dictionary, if you had a look through it, you’d find you’d got something.
*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
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