Living with multiple health problems
Prioritising 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.
Ronald’s diabetes is totally under control. The biggest impact comes from mobility problems.
Lottie’s epilepsy has a bigger impact on her life than diabetes does because she can control the diabetes but not her epilepsy.
Lottie’s epilepsy has a bigger impact on her life than diabetes does because she can control the diabetes but not her epilepsy.
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?Being a coeliac affects Leonard more than his other conditions because of the restriction to his diet.
Being a coeliac affects Leonard more than his other conditions because of the restriction to his diet.
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.Nigel prioritises control of his diabetes. Otherwise he will feel terrible and it will impact on his other conditions.
Nigel prioritises control of his diabetes. Otherwise he will feel terrible and it will impact on his other conditions.
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.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.
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.
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.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.
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.
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.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.
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.
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.
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.
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?John encourages people to accept their health problems as see them as an opportunity to do things that they never thought of doing before.
John encourages people to accept their health problems as see them as an opportunity to do things that they never thought of doing before.
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?Derrick has started eating more healthily because he wants to live to see his grandchildren grow up.
Derrick has started eating more healthily because he wants to live to see his grandchildren grow up.
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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