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.

Age at interview 58

Gender Male

View profile

But, generally, you just feel as though like you just one thing after another keeps occurring. You just sort of get yourself a little bit better and then something else seems to crop up. I mean as next week, I’m going to one hospital on Monday, one hospital on Tuesday and another hospital on Wednesday for three different problems. So it’s a constant someone saying, You must do this. And then another doctor saying, You shouldn’t do that. You should do this. And it seems, because they’re only treating a condition, but the diabetes I think is the one you have to really look after because that can cause so much damage to you.

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.

Embed Print Transcript
Three connected issues were raised by the people we interviewed:

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.

Age at interview 77

Gender Male

View profile

What’s the main impact that all of these health problems have on your life, right now. Do they limit what you can do or?

Yeah, there, therethere’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, whenwhenever 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 prowith the other problems I’ve got?

Embed Print Transcript

Loraine has static neurological deficit which causes numerous problems. However, her epilepsy gets in the way of potential treatments for other conditions.

Age at interview 56

Gender Female

View profile

So do you see a number of different specialists? You mentioned the neurological.

Oh yeah.

Specialists and the ophthalmologist?

Yeah.

I think.

Yeah and ENT. Ear, nose and throat.

Nose and throat. Right.

Yeah because I wear a hearing aid.

And I also, because like I said, explained earlier, I have static neurological deficit which affects all your zones.

Your eyes, your ears, your mobility, then there’s your cognitive, your epilepsy and also you can’t have it without it, irregular heartbeat.

Even when, you can learn to ignore that but it can be a nuisance.

Cooler weather is worse.

Or if you’re trying to relax sometimes but, I mean my husband has just been in for an angiogram while he was in, the doctor said, I can’t do anything for your wife. Cardiologist, can’t do anything for you. Because the epilepsy gets in the way again.

Okay. I see.

So it’s, the epilepsy can cause a lot of comorbidity but it can also get in the way of fixing the comorbidity.

So there’s a lot of things they couldn’t fix for me because of my epilepsy, they can’t actually give you a grommet.

Embed Print Transcript

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.

Age at interview 80

Gender Male

View profile

So the exercise classes were good and I still do the exercises. Not just at present, well, first of all my arm is not right for pushing up and down but it’s only push-ups from a wall, you know.

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.

Embed Print Transcript

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.’

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.

Gender Female

View profile

So did the hospital try you on a different DMARD or they didn’t?

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?

Therethere 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 youyou 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.

Embed Print Transcript

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.

Age at interview 70

Gender Female

View profile

I think you have to, I think you have to listen very carefully to what your patients are saying. I think you have to choose the questions you ask them very carefully so that you elicit the information that you need, which may not be the information that they understand that you need. I think you have to give them respect and credibility in terms of their own intelligence and their own choices, but I think you have to be a lot quicker at admitting that you don’t know what’s going on, you don’t know what the treatment should be and making sure that you find someone who does and send the patient to that person. And given that all of the GP surgeries are it seems to me operating like small businesses now, the one thing you shouldn’t be doing is looking at the cost of that. The one thing you should be doing is keeping the patient and the problems they have central in all your thinking and everything that you do. And I’m not sure that’s happening now.

Embed Print Transcript

Andrew believes that some conditions, such as diabetes, are more difficult to manage than others. It is also tricky to keep steroid use to a minimum in order to avoid side effects.

Age at interview 65

Gender Male

View profile

I mean the heart disease is easier to monitor because you simply take the pills and if you get the symptoms, which I haven’t had angina symptoms since 2004, I don’t think clearly, I mean I might have had the odd twinge that might turn out to be more than I thought it was, but I don’t think I’ve had it since the stents were put in. So it’s just been a question of taking the pills and watching out. And I think you take certain precautions like, for instance, I wouldn’t dream of walking alone without a mobile phone nowadays, that sort of sensible precaution.

The diabetes is tricky because it’s very inexact. Maintaining good sugar levels, and I’ve had terrible sugar levels and I, they’ve suddenly got a bit better and I was beginning to get a bit of neuropathy in in the toes, which I think relates to poor sugar control over seven or eight years. Because I’d had the sort of job where I’d been going all over the place and been travelling high because it’s safer than risking hypos of one kind of another. So there’s that so that’s a very inexact business is managing diabetes, and I’ve suddenly got a bit better at it. So, for instance, this morning I had a score of four point six, which is brilliant. I mean you wouldn’t want to be any lower in the morning than that and it was a reason to have breakfast and get on with life but the, so there are varying difficulties.

The Addison’s, you, the, you just have to have the hydrocortisone. If you don’t have the hydrocortisone, you’re dead. I mean there’s a, I’ve got a sort of self-help thing, which I’m supposed to do, which if things go wrong, but actually, you just have to have the stuff really. I think managing that is quite hard in the sense that what I’ve found, this is, this probably would be of interest to your research and to other people who are looking at it, is that is that the more steroids you have, the more susceptible you seem to be to be catching infections or viral infections anyway, viral, virus you know, cold viruses of one kind or another. And I had a terrible year, not so much this year as last year, where I just seemed to have, well, they say people have eight colds a year, I think, and a cold lasts for a fortnight, if a cold lasts for a fortnight I had twenty six. It was just one after the other. Now what happens is you then, you’re told that with viruses you don’t increase the dosage. You do with bacterial infections but, in fact, you are sometimes told with viruses it sometimes helps to do it and I’ve actually always increased the dosage with, when a cold has come on, but that gets into a vicious circle where you could be ending up with far too much steroid and you then get a little bit of bone thinning, all that kind of stuff, and I have something for that, actually, a calcium pill every day to, because it’s just a bit of a risk of that and developing osteoporosis and all that.

Embed Print Transcript

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.

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.

Age at interview 68

Gender Female

View profile

The other thing is the COPD. That was a bit of a different thing because I had to get into a bit of an argument with my GP at the time, who’s now retired, and she said to me, You’ve got asthma. So I said, No, I haven’t. Yes, you’ve got asthma and I want you to take these inhalers. So I had a brown inhaler and a blue inhaler and I did as I was told and I used them for oh, about a month and I thought, It’s not making one iota of difference. I know I haven’t got asthma. I’ve got friends who have asthma and I’ve seen them and the way that they can’t breathe and they’re panting and they’re having these terrible asthma attacks, which you can die from, and I’m nothing like that. Why won’t my doctor listen to me? I’m fully aware of my body now because I was told a long time ago, when I’d had a mini heart attack, which isn’t, no evidence of it since, I’ve been fine, listen to your body’ and that was the best advice I could ever have had, because you become very aware of your body and what’s not right, even if you can’t specify what isn’t right, you know that there’s something not right.

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.

Embed Print Transcript

A specialist nurse and a GP disagreed about whether Anne X had COPD or not because she had never smoked, despite an incorrect entry in her medical record that said she had.

Age at interview 79

Gender Female

View profile

But anyway a couple of years ago, at the same time as they did the angiogram, they did a lung test as well.

And it didn’t come up all that well. It said that there was some sort of oh, I don’t know what they called it, but it wasn’t badly not good but the lungs weren’t what they should be, obviously. But I never have been smoker, although somebody wrote, was a smoker’ on a hospital letter, which was nonsense. I’ve never even tried one in my life but it was it was said that I had COPD.

But when I spoke to a top respiratory nurse, for this condition. She said, In fact, you cannot have COPD if you’ve never smoked.

And my doctor said, Rubbish. You have got COPD.

Embed Print Transcript

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.

Farza likes to lead GP consultations and has been fighting to gain access to a Community Psychiatric Nurse (CPN) for some time.

Age at interview 41

Age at diagnosis 15

View profile

How would you describe your relationship with your GP – do they just tell them what to do, do you take your own problems and they respond, do you have any say in the treatments that you have?

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.

Embed Print Transcript

During a hospital stay, Michael Y’s wife Pauline was better able to recognise his seizure activity than hospital staff. After Pauline asked to see a specialist a junior doctor acted on her records in order to control the seizures.

Age at interview 70

View profile

Pauline: In the past, it hasn’t been very it hasn’t been very easy at the hospital, because whenever we’ve gone in with Michael, even people on neurology ward will deny that Michael is having a seizure, when he’s having seizure.

And nobody can sit down with him. In fact, one time, he was in just a couple of years ago and he’d come in on the Sunday with status [epilepticus], and they’d sent him to the neurology ward and he was still, every three minutes or so, he was having some seizure episode. And the junior neurologist came down because they were going to send Michael home and I said, Hang on. I said, I want to see a neurologist. And the junior one came down and I said, Michael cannot go home. You’ve not sorted him out. And he said, What’s the problem? So I said, Well, if you stand here just for two minutes, I said, You will see what I’m on about. And as I’m talking to this doctor, Michael sets off with the seizure episode, and it was only three minutes. He said, How long has he been like this? And I said, Since he came in on Sunday. And I gave him the list that I’d noted down. I went in at nine o’clock in the morning to the hospital, I sat with Michael until he, because he couldn’t eat properly, nobody was feeding him, and I would only leave when Michael had had his evening meal that night. And I gave him the list of all the times Michael was having these seizure episodes and he said, Right. He said, I’m not going to go off what the staff are saying. He said, Carry on taking the notes. He said, Put them at the end of the bed. He said, Now we’ll go off your notes. And bless him, he did do and for the next three days, he was looking at the notes that I’d been taking all day, and then they could give him the right sort of medication and within five or six days, they’d brought his seizures down. And that was after me actually requesting to see him, because I knew there was something going on but everybody was denying it, because they weren’t there all the time. You know, they’re rushed off their feet, fair enough, but even when I said, Look, Michael is having a seizure, come and see it. Oh, we don’t think that’s a seizure. But, you know, so, obviously, even some of the staff on the ward aren’t actually sure what seizures are.

You know, because there are so many different types of seizures.

But so, you know, it has been quite hard in the past, but they are beginning to know us at the hospital [laughs].

Embed Print Transcript

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.

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.

Age at interview 54

Gender Male

Age at diagnosis 7

View profile

What do you call them, house doctors?

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.

Embed Print Transcript

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.

Age at interview 67

View profile

In terms of the interactions that you have with medical professionals.

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.

Embed Print Transcript

*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