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Living with multiple health problems

Different views on prescribed medicines

The people we interviewed expressed a range of views about medicines in general and specific treatment in particular. In common with what is known from research*, some people resisted the idea of taking medicines whilst others rather saw them as a fact of life. People also talked about their experiences of taking medicines, the ones that worked for them and ones that didn’t. 

Medicines as a fact of life

Madelon, who was 93 years old at interview, said that she had got used to taking medicines since being diagnosed over 20 years ago with diabetes and began having “little strokes”. Andrew was in such severe pain during the onset of pancreatitis that morphine was essential for 12 months. When Jeffrey was diagnosed with heart disease and diabetes, he was told that he was going to be put on tablets for the rest of his life. Leonard was on “quite a range of tablets,” and he felt that they were keeping him alive. Loraine had been on anti-epilepsy medicines since aged 5 months old. As a teenager she had also been told that she would be on medication “for the rest of your life.” Lottie and Amy recounted similar tales. Anne X avoided taking medicines until she was diagnosed with heart disease in her 50s. By the age of 70, taking warfarin became a medical necessity. Similarly, Steve’s lack of hormones meant that replacing them was a medically necessity as well as treating the cause of the problem.
 

Madelon has got used to taking her medicines over the years. She uses a weekly dosette box to organise her tablets

Madelon has got used to taking her medicines over the years. She uses a weekly dosette box to organise her tablets

Age at interview: 93
Sex: Female
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And how do you do you find it taking all of these tablets?

Yeah, I’ve got used to it after all this time. I’ve got a little thing to put a week’s supply in and it just seems to make the weeks go quick you know. I fill them up and think, I’ve only just done that [laughs]. And they’re all gone again, yeah.
 

When Steve was diagnosed with prolactinoma it seemed lucky that he wasn't already in hospital. Following diagnosis he was immediately put on a number of medicines essential to treat the condition.

When Steve was diagnosed with prolactinoma it seemed lucky that he wasn't already in hospital. Following diagnosis he was immediately put on a number of medicines essential to treat the condition.

Age at interview: 44
Sex: Male
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I went to see the GP to see if I maybe had glandular fever and he did a load of blood tests, and that was on a Tuesday I saw him, I had the blood tests on the Tuesday, and then the Thursday night – never forget that day – we got a phone call at nine o’clock at night from the GP to say could I come down to the surgery urgently. And it’s like this is the kind of questions you ask – what, right now? And he said, yes. And I said, but it’s snowing. He said, yes, I’m on the way to the surgery myself, I’ll open it up and I’ll be there. And I got there, he took my blood pressure, various other bits, temperature I think and whatever else, and said that my cortisol levels was the lowest that the endocrinologist had seen and the person still be functioning, walking around and not confined to a bed in hospital.

So he spoke to the on-call endocrinologist at our local hospital who then agreed that I didn’t need…because at, at that time they were going to admit me straight to a ward and, you know, give me treatment there and then that, you know, he… the doctor actually spoke to the endocrinologist and said, he’s functioning not too bad, he’s alive, blood pressure’s okay, everything’s fine. So he gave me a prescription there and then for hydrocortisone and told me to take… what to take. And then I saw the consultant… I got that, got those medica… that medication the next day, spoke to the consultant the next day on the phone, and saw the consultant I think it was a couple of days later. And that’s when I got told all the, the prolactinoma, I had no natural steroid, no natural hormones, like thyroid was non-existent, growth hormone was non-existent, testosterone was non-existent, and cortisol was non-existent, and this prolactinoma, which should have been round about fifteen for a man of my age, was in the tens of thousands units per millimetre or whatever it was. He then put me on a drug regime of replacement thyroid, replacement testosterone, and replacement cortisol, and another drug which is cabergoline, which is to suppress the prolactin, and currently that’s… I’m still on that drug regime, and that’s what’s happening, it suppresses the prolactin. And that should in time, given enough time, shrink the tumour.
 

Loraine’s conditions last from birth until death. When, as a teenager she asked her consultant how long she’d have to take medicines for, he confirmed that she will need to take them for the rest of her life.

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Loraine’s conditions last from birth until death. When, as a teenager she asked her consultant how long she’d have to take medicines for, he confirmed that she will need to take them for the rest of her life.

Age at interview: 56
Sex: Female
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Once you’ve had multiple disabilities, with the epilepsy I’ve got and what type I’ve got because of the comorbidities, it would never go away ever it’s from birth to death.

I asked my consultant this at fifteen, because I said to him, “I’m taking medication at college, I’m going to be frustrated and I’m saying, how long am I going to have to be on this medication?” And he says, “For the rest of your life, dear.” And he was a firm guy. And he meant it, you could tell by his voice.

And he said, “Your epilepsy will never go away. You may get clear patches but you’ll never be non-epileptic until your death. And the rest of your conditions will remain with you because of your first seizure and the seizures in the early years after that.” 
Resisting medicines

People often feel unhappy about the prospect of having to take a particular medicine. For instance, Anne X had been reluctant to take antibiotics for cellulitis but did so to avoid being hospitalised, and Pat had felt resistant at first to the idea of using insulin for her diabetes after her tablets stopped working. Robert was among those who said that they “take painkillers as little as possible” and saw painkillers as a last resort when the pain has become “really bad.” Lottie had got fed up having a “huge great bag of pills” and sometimes felt like she didn't want to take them, although she wasn't sure whether the medicines were making any difference or not. Lottie, Graham and others questioned the long term harmful effects that might come from taking medicines. Val described medicines as “toxins” and wondered about the effect on the body of combinations of different ones. Graham was the most extreme in his views about medicines and said outright that he doesn't take medication, although his account revealed that he did use small doses of low level painkillers. He had also stopped taking a medicine prescribed for a balance problem after he found out about some exercises that seemed effective. Barry had become depressed after a stroke and was put on “quite strong tablets” but his wife Margaret was pleased to report that he has now “managed to get off them.”
 

Barry went through a period of depression. His wife Margaret describes how he was put on strong tablets which have now been reduced. The tablets also prevent him from having a knee operation.

Barry went through a period of depression. His wife Margaret describes how he was put on strong tablets which have now been reduced. The tablets also prevent him from having a knee operation.

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Margaret: We did have an episode about a couple of months ago, didn’t we, where you felt really depressed didn’t you.

Barry: Yeah.

Margaret: And wanted to sort of drink your life away, didn’t you.

Barry: Yeah.

Margaret: And you know, that was quite a bad time.

Yes.

Margaret: And you felt depressed and that. It’s was like during the winter months, you know.

Right.

Margaret: Because it was day after day like this really, you know.

Yes, yeah. 

Margaret: And you only thing you could do was like just go and have some lunch somewhere in the car and then come back home, you know.

And that, I mean that weren’t a very good time was it.

Barry: No.

Margaret: But he’s got over the he just wanted to go and be knocked out somewhere. That’s he felt, you know.

Right.

Margaret: Like a chemical cosh, you know, and that type of thing. The doctor put him on quite quite strong tablets.

Right.

Margaret: But we’ve managed to get off them all those haven’t we.

Barry: Yeah, yeah.

Margaret: And sleeping tablets, just down to a small dose now, you know.

Right.

Margaret: So gradually we’ve managed to do that because I don’t like him being on those tablets for very long and, you know, obviously, it is addictive. And another problem, and also this problem that he’s got, it’s stopped him from having a new knee.

Right. Right.

Margaret: So that’s, you know, it’s made his mobility.

Barry: Not good.
 

Graham tries to lead on matters in consultations with his GP. When he challenged a GP about the perceived safety of a specific medicine she got upset.

Graham tries to lead on matters in consultations with his GP. When he challenged a GP about the perceived safety of a specific medicine she got upset.

Age at interview: 66
Sex: Male
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You do all the research, you work out what you want, and then you go in and present that to your GP and say, I want this?

That is quite a lot of the time, but yeah, I’ve got ideas of what I should do and what I shouldn’t do.

And I’m just interested in how that plays out, and how your GP kind of reacts to that kind of level of expertise, do you think they see it as a threat to their own kind of…?

They do, I went to see… I wanted some more naproxen and, you know, the…this doctor, I see different doctors because I’m not worried about, you know, because I’m pretty confident of what I’m about, and I don’t worry about seeing… I just see the first available one. And this woman doctor, you know, did… wanted to, give me something a bit better than, naproxen. She tried to put me on this diclofenac or whatever it’s called. And you know, she got quite upset when I said no, you know, it’s… it’s dangerous. And she says, well, I don’t think it is if you take it for a short time. I said, I’m not taking it, you know, it’s… it’s dangerous, it’s been withdrawn in some countries, it’s killing, Asian vultures, that, you know, they give it to, cattle in Asia, and the vultures that fed off the dead cattle are, dying, because they can’t take this drug, so, you know. She got a bit annoyed at that [laugh]. But that… that is the only time I’ve brought things like that out, you know. But you know, twenty-one years ago, you know, you… you did what the doctor told you, except for me, you know, I said, I’m not to take steroids, I want an alternative.
 

Robert was on morphine in hospital but doesn’t like taking painkillers because they cause constipation. He will take Disprin occasionally and co-codamol if the pain is bad.

Robert was on morphine in hospital but doesn’t like taking painkillers because they cause constipation. He will take Disprin occasionally and co-codamol if the pain is bad.

Age at interview: 80
Sex: Male
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The last time I was in, because I had a bad tummy, you know, with this this blood thing and it was painful.

Yes, yes. 

It really was painful.

Right.

And I could have I could have morphine on the hour every hour if I wanted it.

Right. Right.

But it bungs you up, you know. 

Okay. 

So I got off it as quick as I could.

Right. 

I got down to, you know, disprin. So as you’ve maybe realised, I take painkillers as little as possible.

Yes, yeah.

I have to be really bad to take a painkiller.

Right. Okay.

Sometimes I have them and I do take them and I do actually, get to the co-co’s if I’m bad.
The medicines do work

Some of the people we interviewed spoke of circumstances where the medicines they took were seen to be effective in managing symptoms. Lee’s hay fever was controlled with antihistamines. Ann found her life was greatly improved by tablets and inhalers. Jeffrey’s tablets were working fine and he had never experienced side effects. Robert felt that steroids had helped a swollen foot and that a course of antibiotics had “cleared him out” following a chest infection. Michael X had also found antibiotics effective when he had pleurisy and also to prevent other infections. Leonard was pleased that he had found control by stents and medication, rather than having invasive surgery on his heart. Sue’s colitis and asthma were well controlled by medicines. In contrast to other people with epilepsy, Fiona found that hers was very well controlled since she was put on a new medicine when she became pregnant. Tony’s epilepsy was so well controlled by medicines that he got his driving licence back. Amy found that her medicines were helping her manage her conditions “quite well.” Kevin said that his blood pressure had “gone back to normal” following treatment and that his pain medicines were effective. Steve felt that he was a lot calmer since being put on steroids.
 

Jeffrey has never had any repercussions from the tablets prescribed by his GP, which are seen to be working perfectly. He is very happy with his GP as a result.

Jeffrey has never had any repercussions from the tablets prescribed by his GP, which are seen to be working perfectly. He is very happy with his GP as a result.

Age at interview: 66
Sex: Male
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And this is a bit of a funny question, but how do you know that you’re happy with the care that you’ve received?

How do I know?

Yes.

Because the tablets that I’ve got, there’s been, [tapping sound] touch wood, there’s been no repercussions of anything else like it. The tablets are working and I’m happy with everything as it is. I would never change my GP at all. If I was somewhere else in the country, I’d ask her, pay for her to come down and do it where I was, see [laughs]. I really would. She is lovely, she really is.
 

After Ann’s diagnosis was changed from asthma to Chronic Obstructive Pulmonary Disease (COPD) she was given tablets and inhalers and felt much better.

After Ann’s diagnosis was changed from asthma to Chronic Obstructive Pulmonary Disease (COPD) she was given tablets and inhalers and felt much better.

Age at interview: 68
Sex: Female
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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.” 

So anyway it was improved greatly by the inhalers, wonderful, and I toddled along quite well looking after myself and doing everything I should, and life got much better and I was back to normal, you know, hundred and ten per cent every day. 
 

When Tony was first diagnosed with epilepsy it had a big impact on his life. Now that the condition is controlled with medication he has got his driving licence back and the impact is minimal.

When Tony was first diagnosed with epilepsy it had a big impact on his life. Now that the condition is controlled with medication he has got his driving licence back and the impact is minimal.

Age at interview: 51
Sex: Male
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I was first diagnosed about fifteen years ago, but I had it before then but it wasn’t diagnosed. I was actually relatively old when I was diagnosed. I was like late thirties. So, at the time, it was a bit of a shock, bit of a surprise.

Right. Yeah.

And it took, I think the biggest thing was it was I had to stop driving and it took quite a while to get the medication right.

Right.

Which impacted my job and things like that. At the at the moment, though, it’s fine because now with the medication, they’ve got it under control, I don’t have seizures and I’ve got my driving licence back.

Okay. 

And doesn’t really greatly impact on me on a day-to-day basis. There are some side effects from the medication but nothing drastic. Considering I do know people who have epilepsy and it has a dramatic effect, and they’re not able to have a full life.

I consider myself quite lucky.
The medicines don't work

Tammy had tried more than six different sorts of anti-epileptic treatments over nearly twenty years but had yet to find a medicine that was effective in controlling her seizures. Anne X told a similar story about anti-epilepsy medicines that don’t work. Gogs told how none of the medicines used to treat her rheumatoid arthritis had worked. Others were critical of specific medicines. For Andrew, metformin “didn’t work” with his diabetes. Barry was prescribed various treatments for an eye infection, but the only effective remedy he found was to get drunk. John had two injections into his spine that “didn’t work”. Pat had steroid injections that were “extremely painful,” “neither of which worked.” Robert, Val and John were among those who referred to certain types of pain, e.g. nerve, muscle or joint pain that simply could not be completely cured by medicines. Loraine was reaching the limits of her anti-epilepsy medication as she was now on the maximum dosages of her medicines and was running out of options.
 

Before a medications review, Val was taking at least three medicines to help with pain but none of them seemed to work.

Before a medications review, Val was taking at least three medicines to help with pain but none of them seemed to work.

Age at interview: 70
Sex: Female
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Yeah. The pain meds were for what, at that point, was the osteoarthritis and the fibromyalgia. So, I was taking amitriptyline at night as a muscle relaxant, to help with the pain so that I could sleep. I was taking citalopram in the morning for a similar, sort of, reason. I was taking pregabalin, which the pain clinic had suggested might help with the fibromyalgia. Oh god, what else was I taking, there was something else, I can’t remember what it was. But none of them were helping with the pain.
 

Gogs is concerned about the speedy progression of her condition and she feels that nobody warned her that the treatments might not work. She wonders whether it is worth continuing to see the consultants.

Gogs is concerned about the speedy progression of her condition and she feels that nobody warned her that the treatments might not work. She wonders whether it is worth continuing to see the consultants.

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And you’ve been up and down in that and you’ve tried these things out, then you have a better idea, I’m… if you can say I’m only two years old, I’m still a fairly new rheumatoid patient and in the first year, except for two lots of drugs that I persevered with as long as possible, I had numerous side effects, which necessitated me ending up going to see a third consultant which was a colorectal surgeon, because everybody was making issues about weight. 

Then I changed consultant, rheumatology consultant and she went through all the first bits and then she started me on a drug which I was really hopeful would work, because, according to h yes I was having flares, et cetera, and that was the thing that they were supposed to be bringing under control, but if twelve months later I’ve still got the flares and I’ve had some very highs and lows with them and they limit… the drug… the condition itself is limiting me more and more and more, I’m aware of that after two years, that frightens me, that actually really frightens me, because I thought it progressed, but slow except if you were one of these very unlucky people who just kept progressing and nobody has actually told me I keep progressing and that the drugs won’t work, maybe they don’t do that, maybe they wouldn’t tell you, I don’t really know, I don’t… nobody would tell a patient that, but because I’m stuck with knowledge and being a patient, I’m in a very, very difficult position.

And I want somebody to tell me that this is not going to continue to progress, it’s not going to be a fast progression, you know, that, my lungs are not a mortality of three to five years, and, yeah, there are drugs and we will give them to you and we will bring you under control, and nobody has done that.

So, you know, I…it make me feels that it’s not really worth going to consultants, the GP is wonderful, I can’t find one thing wrong with him.
 

Tammy is frustrated that she has not found an anti-epileptic medicine that works for her. She wonders whether her other conditions or a lack of progress in science are responsible.

Tammy is frustrated that she has not found an anti-epileptic medicine that works for her. She wonders whether her other conditions or a lack of progress in science are responsible.

Age at interview: 45
Sex: Female
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And it’s, you know, the frustration I’ve been through with all the different sorts of tablets and I’ve kind of, you know, had faith in them from time to time and then they’re just they’re just not working. You know, I’ve gathered, after about six different range of epileptic drug, you know, if none of them work, you’re probably never going to find one that does, you know, and on my bad days, you know, when I think [sighs] epilepsy, I would have brain surgery on it, you know, which is on offer. I mean there is that as another.

Right.

Possibility. Yeah, and I again, you know, I swing from that. I do think, “Yep, anything.” You know, to thinking, “Oh, I don’t know.” I don’t, I have talked to my consultant about it and he said, “Yes, you know, that is an option.” But there’s dangers involved in that, you know. You can cause more damage, certainly to your memory after brain surgery and I think possibly, you know, the diabetes would play a part in that with any sort of operation and also I think the fact is mine isn’t as bad as some people who do have to have surgery, you know. 

I think one of my big dissatisfaction at, lies is the fact that the drugs themselves aren’t working, so I can’t really point the finger at the neurologist for that but, at the same time, I am being let down. You know, my epilepsy hasn’t been controlled or managed, so who’s letting me down? I don’t know, you know, the sort of scientists who are coming up with the drugs? So there’s some sort of failure there isn’t there and again, that that is sort of beyond me. I’m doing what I’ told, taking what I’m prescribed but it’s not working. 

And the with the diabetes, I think the dissatisfaction there again, is the you know, the advice I’m given has shown not to always work and here I am, you know, left wondering is it, am I a different sort of case because of the medications I’m on, you know? It’s that same sort of question mark over the two conditions together. So no, it’s not, the root of the dissatisfaction is that I’m still affected by my conditions, you know, the epilepsy and the seizures, I don’t know. If you’d asked me twenty years ago with the first epilepsy and the drugs were working then I’d have said, no, you know, it’s fine. In fact, I would have done, I know because I’d have sort of deluded myself that everything was alright. So there’s not full satisfaction there, no, simply because, at time, the conditions, well, they are, you know, they’re part of me on a daily basis as a sort of rule, to an extent, really determine what I do. So I’m not satisfied, yeah, and that, it’s hard to say whether that’s the healthcare’s, you know, the part they play, sort of thing. I think quite possibly just not advanced enough yet are we really.
Some people we spoke to reported that medicines only seemed to work for a certain amount of time; either because the condition became progressively worse or because the body somehow ‘got used’ to certain medications. This was mentioned exclusively by people with diabetes, epilepsy and asthma, although it could theoretically apply to other conditions (see also ‘When treatments only go so far’).





*Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., & Campbell, R. (2005). Resisting medicines: a synthesis of qualitative studies of medicine taking. Social science & medicine, 61(1), 133-155.
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