Prioritising with multiple health problems

Dealing with the consequences of multiple health problems can be complex. Both patients and doctors will have ideas about which conditions or symptoms are the most important. For example, Tony prioritised his epilepsy over his asthma, as it was seen to have potentially more serious consequences. Most of the people who spoke to us did prioritise. Andrew was unusual in that he felt that all of his health problems were equally important. Ann was the only person who said she didn’t think that doctors prioritised her conditions but that they were all treated equally. Mohammed, David and Fiona suggested that specialist doctors tend to prioritise the condition which they are expert in.

One of the main ways in which people prioritise their health conditions is according to whether they are successfully controlled by treatment (or self-management) or not. Pat prioritised her IBS (irritable bowel syndrome) as outings needed to be planned around access to toilets. Many people with epilepsy prioritised this condition, for a variety of reasons. Tammy said she did so because seizures come without warning. Loraine prioritised her epilepsy as it affects ‘everything else.’ Lottie was concerned about the impact her epilepsy could have on her diabetes control. Tony prioritised his epilepsy as he thought it had the capacity to cause serious harm, whereas asthma was seen as an annoyance. Anne Y said that epilepsy is more annoying than asthma and needs more explanation for friends and family members.

Ronald’s diabetes is totally under control. The biggest impact comes from mobility problems.

Age at interview 70

Gender Male

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I think the biggest impact would be the pace pacemaker, followed by the cholecystectomy and then diabetes because diabetes is, you know, it’s totally under control. They are doing the best that they can sort of do at the moment, and the rest of them just seem to be in the hands of the gods, so to speak. But no, I don’t really let them bother me. It’s just my mobility that, you know, affects me more than anything but psychologically, not at all. I just accept I’ve got it and just get on with it.

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Lottie’s epilepsy has a bigger impact on her life than diabetes does because she can control the diabetes but not her epilepsy.

Age at interview 37

Gender Female

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And in terms of your conditions, how do you decide what to do first? So I mean if you had to make a decision about what to address first or something like that, how would you go about that and what would take priority?

I think, do you mean with regards sort of because I mean if my epilepsy at the moment, is my priority to try and get under control.

Has more of an impact currently on my life and I suppose because I, it’s something I can’t control. The diabetes I know is controllable and I know what the consequences are if I don’t look after myself.

So it’s, at the moment anyway, because it’s not a sort of, it’s not complicated in that I do just take the same amount of insulin every morning and every night, and I take the metformin every morning and every night, it’s I can control, as I say, at the moment, I can control it and it’s stable. The epilepsy, you know, if somebody was to grant me one wish, it’s just that they could take away so at the moment, that is my priority.

And that’s, I suppose when I take the insulin and when I take the metformin, I know that it’s doing something, so it’s.

I think the difficulty is, I take the tablets for the epilepsy and I just think is it is it making any difference whatsoever, or am I just shoving more drugs into my body for no apparent reason?

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Some health conditions are more serious than others and the consequences vary for individuals. For example, one person’s asthma may result in nothing more than a rasping noise when they breathe, whereas another’s may require night time oxygen and repeated hospitalisation. People prioritised their conditions according to the different effects they had on them. Leonard found that coeliac disease had the biggest impact as it affected his diet. Barry’s stroke had the biggest impact on his life, partly because it had resulted in changes to his personality. Nigel prioritised his diabetes because if it was not well controlled it could impact on his other conditions.

Being a coeliac affects Leonard more than his other conditions because of the restriction to his diet.

Age at interview 73

Gender Male

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Do you feel that one of your conditions is more for want of a better word, important than any of the others?

I think the one that affects me more is coeliac.

Right.

All the others are in the background. I know that I could have another heart attack and the chances are, if I did have another heart attack, I don’t think I’d be here to tell the tale because of all the damage that’s been done, and that might happen one day. I know I’m on tablets to stop hopefully, to stop me having a stroke and the only one that really affects me, and that does affect me badly, is coeliac because the things you see that you know you’ve had and you can no longer, a crusty a crusty bap with bacon in or cheese, can’t have, can no longer have that. People just, certainly the medical fraternity, don’t understand what it is about bread that’s, it’s like, you eat porridge, thick porridge with no taste, it’s claggy and that’s what this coeliac bread is. Starts off okay and what, by the time you go to swallow it, [urgh] you’ve got this lump of claggy mess in your mouth [laughs] and it’s, well, that that affects me.

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Nigel prioritises control of his diabetes. Otherwise he will feel terrible and it will impact on his other conditions.

Age at interview 58

Gender Male

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Okay, and in terms of your multiple, different conditions, how do you decide what takes priority and what you need to do first?

First and foremost I need to keep my diabetes under control because that will reflect on everything else. I know if my sugars are high, I feel terrible, very very very very sluggish, slow, can hardly lift my feet off the ground. But with my heart, I can only take the tablets they’ve given me. They give me digoxin and then with my spray I feel a bit out of breath but I don’t suffer very many angina attacks, maybe one or two a month or maybe less than that.

Okay.

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.

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Jean’s doctor prioritises her heart because it’s packing up. This fits her priorities because her heart condition means she can’t go out for walks, which makes her depressed.

Age at interview 80

Gender Female

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And do you find that your, does your GP concentrate on one of your conditions more than the others or?

No, he treats me, well, well, he treats me for the heart basically because it’s the heart that’s packing up, that’s causing the problem.

And of the conditions that you have, do you find that one perhaps dominates more or impacts more?

Well, the heart dominates more, the heart dominates more. I mean the ankylosing spondylitis I have what fifty, sixty years and it’s always painful and it restricts some of my mobility, but without my heart working properly, you know, I’m sitting in a chair day after day after day, and that and that’s depressing. It’s totally depressing, believe me. Sometimes you think, Well, why am I bothering to go on? Why don’t why don’t I just sort of take a dose of sleeping pills or something? You can get that depressed.

And is that something you’ve shared with your GP or?

Sorry?

Is that something.

Yes, he knows.

He knows I get, I’ve got depression but he knows I’m not a depressive, if you know what I mean. He knows it’s just the circumstances, you know. I’m not I’m not normally given to depression. I’m pretty, I’ve always, they used they used to call me happy because I was always laughing and joking and because I was full of fun. So it’s not it’s not my nature to be depressive, but it gets depressing. Sometimes you feel like a caged tiger.

And there’s nowhere to go. I can’t get out. I can’t get out and walk anywhere. I can’t get down the road. I can’t even, I live in the most beautiful forest. I live in the [area 2]. It it’s glorious and when I had my German Shepherd, when she was alive and I was able to walk, I’d walk up to two miles a day with her and it was lovely. I haven’t been in the forest now for what three, four years.

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In Jean’s case, she and her doctor seem to agree over what her health priorities are. However, this was not the case for other people, who felt that the condition they were getting the most help with from the NHS was not necessarily the issue that they needed the most help with. This situation seemed to partly reflect the specialist nature of health service organisation, and the division between health and social care. Fiona was getting lots of help for her diabetes since she had become pregnant, but she wanted more help with her epilepsy. Angela was getting most help for her asthma, but she wanted more support from her GP following a stroke. However, this was not seen as falling within her GP’s role.

When she became pregnant, Fiona had help from a diabetic team immediately. However, it took 4 months to get an appointment with a neurologist about her epilepsy.

Age at interview 25

Gender Female

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Okay and which of your conditions do you feel that you get the most help with?

From the medical profession?

Yes, yes.

I’d say definitely the diabetes.

Right.

I mean I mean a classic example is when I found out I was pregnant, I told my diabetic team, I was, had a hospital appointment to, literally the next day.

Right.

Pregnancy clinic, the next, you know, straight in the next week and I’ve been there and I go every two weeks now. And the epilepsy side, unfortunately, it’s taken up until being four months pregnant to even get an appointment to speak to someone, unfortunately, because the, I know the neurological services are so stretched in this country that that’s, it’s, yeah, definitely say definitely the diabetes side.

Okay and is that as you would like it? Is that the right thing for you to get the most help with, is that as you would like, or would you prefer more help with other things or?

I’d say that’s definitely the right one to get the help with because I think that’s the one that could most affect the pregnancy and regards to the health of the baby, that’s the biggest fact, biggest one that can affect it, because we did check the meds. Because some epilepsy medication can affect the development of the child and can cause deformities.

Right. Right.

But the one I’m on is what is probably the safest one to be on.

Right.

So I’m sort of lucky in that respect but I mean, I think it’s just been difficult because I’ve had so many questions I want to ask and they’ve been building up over months, and not being able to find anyone who can answer them. But yeah, I have an appointment now for next Wednesday so, hopefully, now I can get into sort of their pregnancy clinic and start being, you know, they can keep an eye on me as well.

Right.

With that, and so they and the diabetes team can start working together now.

Right. Okay so they are, do they talk to each other?

Yeah, they talk to each other and I know, when I was trying to get hold, trying to get into the epilepsy pregnancy clinic, my diabetic consultant was sort of very active in that and sort of writing letters to the neurology department and trying to get me in there ASAP.

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Angela feels that she gets most support for her asthma. She would have liked to have had more domestic help following a stroke, but realises that is not within the GPs remit.

Age at interview 46

Gender Female

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Of your conditions, which would you say you get the most help with? So I mean from the healthcare profession and that sort of thing?

Probably the asthma because I have I have for many years, been going to an asthma clinic every six months and I get automatically invited for a flu jab every winter.

Right.

So I yeah, I think that’s where I get the most support.

And is that right? Is that the right balance or would you like something different to be?

I would have liked much more help with dealing with my stroke, certainly and I really need help with day to day issues like cleaning.

And is that something that you have been able to talk to your GP about or?

No, not really. I don’t know if that’s a GP’s role, to be honest. I mean I’ve been to say welfare rights people and I’m trying to apply for help, but I seem to be a bit slightly too mobile for their liking. They don’t see me as disabled enough to need help.

Right.

And because I live alone and I do I do try my best to do everything for myself, they think I don’t need the help.

So is that something that you think in future you might, you possibly would raise with your GP, and do you think your GP is aware of this or not so much?

Probably not so much but, as I say, I don’t think there’s really any point in raising the issue, so I don’t know if doctors can help you get help with cleaning. I don’t really see it as their role.

Okay. Okay.

She is supporting me in my benefit applications. I think that’s probably as much as she can do. I don’t know.

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Having multiple health conditions is seen to create extra work for both doctors and patients within a system that is set up primarily to treat single problems in medical specialties. When people see lots of different health professionals for different reasons, it is not always clear who is in overall charge (see also, ‘Continuity of care‘). Whilst GPs are often the ones required to maintain an overview, they are not specialists in any single condition. They are also seen as overworked, which can lead people to feel guilty about consulting them too much. Decisions about what to prioritise are made in the light of these organisational issues.

Mohammed says that the medical profession is set up to deal with single conditions. With multiple conditions and specialists, it is not clear who has the overall power to prioritise.

Gender Male

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The issue well, multiple conditions are presented so they become issues. If a single condition is presented to the medical profession, then they know what they’re treating. If multiple conditions are presented, then the treatment has to vary that one does not affect the other. I know a pharmaceutical company will accept the fact that drugs don’t have side effects and the concern is that in treating one condition, is it going to have an effect on the other condition that the person is presenting, of course there will there will be a concern and of course there is concern even for the patients. As to the medication they are taking, is it helping one and making the other worse or is not affecting. One doesn’t know and you know as well as I do, a lot of the data from pharmaceutical companies isn’t quite available at public level, or at medical level for that matter, but so yes. And also having multiple conditions means that you are seeing multiple people. People that are specialists in that area, and so it’s a question of who decides to prioritise what, those would be the patients’ concern whether the cardiologist has the priority over the neurologist, I don’t know.

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Robert had a fall but didn’t mention it to his GP because he doesn’t want to trouble the surgery any more than he already does. He also doubts whether they could do anything about it.

Age at interview 80

Gender Male

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And you mentioned a little bit earlier about you had you had this fall onto your right side.

That’s right, yeah.

And you still experience some problems there, but you said that you haven’t spoken to your GP about it.

No, I haven’t. I haven’t.

I just wondered if you could tell me why you haven’t brought that up?

Well, I’ve got a lot, I mean they’ve got a lot to sort out as it is, you know. Let’s be right about it, a doctor is only, I don’t mean this, I don’t I don’t mean to trivialise this, but a doctor is an is an all-rounder. I know he’s an all-rounder and predominantly, as you said and pointed out, COPD is the controller. I can accept my right arm. I don’t want to be worrying him about my right arm, and I mean I can move it about and I mean I can’t write as good as I could but is there no, is there a necessity to do it. I know it aches a bit sometimes, keeps me awake at night. I can accept that.

The COPD is the killer.

Do you feel?

That is the killer and the doctor has got enough on with me. God, I mean, as I just said, I’m in the doctor’s surgery Wednesday, Thursday, Friday. A double shuffle on yesterday. She’s going to do a double this afternoon when I ask her to do the blood as well and the other nurse yesterday, when she did me, she said, Allow me that. You’ll have to book a half hour appointment for me next to see me.

To come back another half hour one I have to book.

Right. Okay. So you can get a longer appointment if that’s necessary.

Yes, so it’s just that she’s going to do something different but I, you know, I mean I just accept what they’re doing. They’re doing it all for me. It’s very good. Surely, can you accept and understand why I don’t bother about the right arm?

Do you feel, is it a time restriction or do you feel that your GP focuses on your COPD and you feel, you know, you’re unable to bring something else up?

No, I don’t think like that, actually. I just don’t, I feel that I do trouble him quite a lot.

Right.

And I know they’re very, very busy and it really doesn’t affect me too much. So it’s really my decision, not the doctor’s.

Yes, not to mention it.

I don’t want to waste his time.

I feel it is, can he do anything about it or can a specialist do anything about it to put it right, and I don’t think they can.

Right. Right.

They couldn’t cure my leg. It goes out and I mean if it goes out it’s out and it’s very difficult to get, I mean, once again, you can take co-codomol but it’s still there. It’s like a toothache. It’s a nerve ache and it’s very, very difficult to get rid of and, in actual fact, really good to like rest and relaxation and painkillers.

Yes. Okay.

So I mean I accept it and I think to myself, what can be done about it anyway?

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In extreme cases, i.e. where somebody has a large number of conditions and/or is taking many tablets (see ‘Dealing with multiple medicines‘), it is not always clear whether a symptom is caused by an illness, is a side effect of a medication, or is the result of an interaction between one disease and a medication taken for another (see also, ‘Interaction between different symptoms, conditions and medicines‘). In these circumstances it is very difficult for someone to prioritise, as it is not clear what is causing the problem of major concern.

Andrew says it is not possible to say which condition is the most important as they all need careful attention. Some of the tablets he takes can cause other health problems.

Age at interview 65

Gender Male

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If I said if you had to rank your conditions, or if you find one most important, for want of a better word, how would you do that?

Well, you can’t really do that because they all need careful watching. I mean they are they are varying degrees of difficulty in in monitoring. 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 it’s a, 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.

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Whilst the focus of this topic has been on medical and self-management in multiple health conditions, people also have to prioritise issues and activities in their everyday lives. For example, it was evident in Jean’s account (see above) that an important priority for her is the ability to go for walks. Sometimes, people find that they can adapt to the circumstances brought by multiple health problems. For others, changes in their personal or family lives bring a new motivation to try to manage their health conditions better. Priorities are not fixed. They change over time.

John encourages people to accept their health problems as see them as an opportunity to do things that they never thought of doing before.

Age at interview 77

Gender Male

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Is there anything else we haven’t, spoken about that you want to add?

Yeah, I it’s a sort of philosophical thing, and that is, you’ve probably come to a turning point in your life where things have got to change. Accept, accept it, and try to do something that you’ve always wanted to do. Don’t sort of think, well, because of this I can’t do this job I keep going to, whether it’s an engineer or road sweeper or whatever. What is it that I wanted to do? maybe this is an opportunity to do something that I would never have done, like, okay, I’m, I’m 58, I left school at 15 with no qualifications, why don’t I see what I can do with the Open University? See if I can get a grant for it. Why don’t I have a look at the local, university or polytechnic, whatever we have here, and see if I can get, a mature student grant. Maybe I would b maybe I would be extremely good at teaching Esperanto. I don’t know. I’ve never done it. So this could be an opportunity to actually change my life about and change it for the better even though my health is not what I would have wanted. Make sense?

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Derrick has started eating more healthily because he wants to live to see his grandchildren grow up.

Age at interview 61

Gender Male

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Do you feel that there’s anything that is more important, for want of a better word, or is there one that impacts upon you more, or are they all equal or?

Well, you see, it’s hard to know what’s more important I think. For the, in a way that I need to eat healthily to keep to keep the heart going because I’ve got all these grandchildren coming along now and I need to see them growing up and things and.

Yes, yeah.

If you don’t do as you’re told and I don’t eat the proper stuff and things, it’ll affect the arteries and things and I might not see them grow up.

You know, since these grandchildren have started coming along, I’ve been looking at things as a as a on a different perspective.

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Side effects of medicines

The people we spoke to reported different experiences of side effects from medicines which they had been prescribed by medical professionals. Sometimes, the number of...