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Living with multiple health problems

Self-management of medicines

It is common for people living with one or more health conditions to seek to take control of some elements of their care themselves. This might be through researching information about the condition(s), active discussion with doctors and pharmacists about which medicines to take and at what dose, arranging certain medical tests themselves, or deciding when and how much of a particular medicine to take. 

Nigel was among those who stressed that it is a patient’s own responsibility to take the medicines they have been prescribed. However, Barry noted that his medicines, some of which he had been taking for a long time, had never been reviewed by a doctor. He doubted that there was time to do that within the constraints of a typical GP appointment slot. Amongst the people we interviewed the extent to which they were actively involved in their own medical care varied (see also ‘Strategies used to cope with multiple health problems’). Graham was unusual in reporting that he takes his own blood pressure twice a day. On the other hand, Anne Y didn’t always manage her asthma in the ways she had been advised as she didn’t see it as a serious problem. Pat said that she wouldn’t normally read medicine information leaflets but that she checked on one occasion as she felt so ill. She found that she had been prescribed a medicine that needs to be used with care in people with diabetes. Because she has a large number of health problems, including some that stemmed from brain trauma, Amy is unable to manage her own medicines and her mum makes sure she takes the correct tablets at the right time.
 

Barry feels that doctors focus on diagnosis. He feels his GP should have reviewed his medicines in the last 8 years, but he does get hands-on advice from his local pharmacist.

Barry feels that doctors focus on diagnosis. He feels his GP should have reviewed his medicines in the last 8 years, but he does get hands-on advice from his local pharmacist.

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And do you feel that, the medical professionals you deal with, do you feel that they view you and your conditions as a whole or do they tend to focus on individual things or how does that?

They, I think they diagnose you and that’s the end of the story. I’ve had my medication for the last eight years, never been reviewed at all. I’ve got five different types of inhalers. Medication, I take as well and I and I’m sure I’ve no need to take a lot but just allow it.

Is that something you’d ever ask your GP about or?

No, never, never. I you hear so much about they’re so busy but you know to ask them to review is, you’re not ill are you. And the chemist up there is very good. The chap is, he checks it all and he’ll say to me, he says something to me like, go to your doctor to see.

And I’ll say, “Why?” And he’ll tell me and I’ll go and sort it out. Now my grandson’s doctor gave him medication for a man and told [pharmacist name] about it, the pharmacist up there, and he says, “This is for a man, how old?” I says, “My grandson, he’s only nine.” “Well, he can’t have this,” he says. So when I go to the doctor, he realises that he’s made a mistake but not, you know, the pharmacist shouldn’t have to sort this out.
 

Pat got pneumonia and was prescribed a medicine that the information leaflet said was unsuitable for people with diabetes. This made her hesitant about seeing her GP in the future.

Pat got pneumonia and was prescribed a medicine that the information leaflet said was unsuitable for people with diabetes. This made her hesitant about seeing her GP in the future.

Age at interview: 80
Sex: Female
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You ended up feeling quite poorly because of something that the health service had prescribed, is that…?

Well, no, I ended up feeling quite poorly 'cos I had pneumonia.

Right.

But the drug that was prescribed for me, really it was contraindicative for people with diabetes. And I read that in the information leaflet. I tend not to read information leaflets until after, because I think if I read them before I'm going to say oh, I've got, you know, and I tick all those boxes. That's not quite true, but generally speaking I believe that the experts are prescribing me the appropriate drug. But in this case, I'd thought well, this is something different, and I do feel quite ill, and I'm going to read this before I start taking it.

And it was there quite clearly. And it was… I don't remember the name of it now, but it was one of the…not Erythromycin but that group of drugs.

Okay.

But, so yeah. So that was dreadful and it…it made me very hesitant about consulting a GP in the future.
 

Following a brain injury, Amy finds it difficult to organise her medicines, so her mum oversees the 40 or so tablets she must take every day. She previously tried to overdose on one of her prescribed medicines.

Following a brain injury, Amy finds it difficult to organise her medicines, so her mum oversees the 40 or so tablets she must take every day. She previously tried to overdose on one of her prescribed medicines.

Age at interview: 25
Sex: Female
Age at diagnosis: 22
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The kind of way that you have to manage the regimens for all these drugs, is that something that you’ve had to work out for yourself along the way, or…?

My mum does it for me. I had… she counts them, I’ve to have 18 tablets at night, and then I have [pause] oof, about 20, 22, something like that, during the day. But my mum lays them out for me; because of my brain injury I kind of… I used to put an alarm on my phone, but it’s kind of like I’d see that it was there but I wouldn’t…it wouldn’t kind of take it into my brain, so I’ll just… I just won’t take the tablets because my brain’s kind of somewhere else. So she even handles my drugs for me. Also because of my mental health problems as well, because I do have quite low periods, and I think it was about a year and a half ago that I tried to overdose with my Oramorph, so she kind of keeps my meds for that, just to make sure that if I’m having a bad moment that there’s kind of nothing around that can make me feel… make me do something that I’d kind of regret or something like that. Because when I’m ha-, when I’m kind of happy I’m happy [pause] but I just drop low very easily, I can be laughing at one minute and then I’ll be on the floor the next, crying, kind of devastated and… for no reason. So, yeah, she looks after my tablets during… I’ll have to learn soon though.
An important aspect of people managing their own medicines is being able to discuss the prescription of drugs with doctors and pharmacists. Pat appeared unusual in that she was able to communicate with her GP by email, including about changing her prescription for blood pressure medicines. When Anne Y started with a new consultant, she took all her prescribed drugs in for them to look at, with a view to getting the number of tablets reduced. Lee talked about how information gathering via an online forum had given her the confidence she needed to ask her doctor about stopping a particular medicine. Several people said that they preferred to control their conditions without medicines where possible. Ann’s doctor had advised her to lose weight and start taking insulin but Ann preferred to try to lose weight first since it might prevent her from needing insulin (see also ‘Prioritising multiple health problems’). Mohammed was pleased that he was able to control his diabetes mainly through diet rather than medicines. However, he was prepared to take prescribed drugs for a heart condition which he viewed as being “out of my hands”.
 

Pat is able to communicate with her GP by email if she needs to change her blood pressure medication.

Pat is able to communicate with her GP by email if she needs to change her blood pressure medication.

Age at interview: 80
Sex: Female
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GP, well, I have, have good contact by email if need to change my blood pressure medication, I can just send one of the practice an email and he will respond very quickly. I think partly because they know at the practice, 'cos I have got access to help within the family really. So although I don't like ever to ask my daughter, 'cos she's very busy, but she's always saying, 'for goodness sake, mum, ask me if you're worried about something.'
 

Mohammed was pleased that he could control his diabetes with diet and a low dose of medication. He sees his heart condition as being beyond his control and is prepared to take drugs for it.

Mohammed was pleased that he could control his diabetes with diet and a low dose of medication. He sees his heart condition as being beyond his control and is prepared to take drugs for it.

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I don’t have anybody in my family background that is diabetic or was diabetic and maybe I still psychologically believe that maybe it’s because of my sweet tooth rather than necessarily being diabetic. But with a blood sugar of seventeen, you know, clinically that’s what you are a diabetic, so and I I’m very happy that I was able to control it myself, rather than going on the dependency of having injections daily to be able to control it because once the body gets used to is then, you know, that’s it. You’re stuck with it and I want to be able to control it myself rather than be totally dependent on medication.

Okay. So you mentioned there that insulin was suggested for you but you said that you’d prefer to try and do it differently.

The very lowest strength of metformin or something I said would do it because maybe it’ll give me mental satisfaction that I’m taking medication rather than actually.

Okay.

It will remind me that I need to control the intake of my starch and sugar and what not.

Okay, and how was that received when you said that that was what you’d prefer to do?

Oh they said fine because even if it doesn’t come down then, you know, we we can consider that at our next appointment but since then, no fine. Seems to have gone down to a fairly what they would classify as an acceptable level. What is normal is very vague I’m afraid but it has, from seventeen it has come down to about six and a half and over the last five six years or rather five years, yeah, it’s stayed around that level so they’re quite pleased. The GP is pleased and the hospital is pleased that I was able to control it and bring it to that level and retain it at that level.

And in terms of impact I suppose on your life of your two conditions, which would you say is more important, for want of a better word?

Well, I suppose my heart condition would obviously be considered. Of course, diabetes is of concern but I feel that diabetes is to a degree, controllable. You can’t eradicate it you can’t, but you can do a lot of things to control it. Regarding my heart condition, I often feel it is outside my hands. I can stick to specific diets and I keep on taking my medications on time but beyond that, I don’t have much control over it because the difficulty lies, when you do have a a heart attack, you can speculate the percentage of damage that has occurred to your heart but you can never be exact. So there is a dilemma of how far you can push yourself with that condition and it’s always in the back of your mind, especially if you if you travel a lot like me, but that that is of concern at time, rather than the diabetes. But then again, having one doesn’t help the other, so I’m told by medical professionals that. 
 

Anne Y has seen many doctors for her epilepsy over the years. When she started with the latest one she took all of her medicines in with a view to reducing the number of tablets she takes.

Anne Y has seen many doctors for her epilepsy over the years. When she started with the latest one she took all of her medicines in with a view to reducing the number of tablets she takes.

Age at interview: 61
Sex: Female
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Could I ask you what your opinion is of the treatment you receive?

I think it’s fine now. I think, obviously, before I was very ill, I, it bothered me that I had to keep trying to explain myself to more to the doctor, I think, to make her take notice of the fact that I was so ill.

And I didn’t like, at the time, because there was quite a variety of epilepsy doctors I was seeing.

Right. 

Whereas now, the consultant, you know, I’ve been seeing him for quite a few years.

So I feel better with him and I, it worries me sometimes that he’ll go and then who will the next one be? But. 

Right. Okay, so that continuity…

[mm]

…is important?

Yes, I, yeah, I yeah, I find that is that is important now, you know. At one time, when the nurse left, he did think he would be getting a replacement nurse and, of course, that’s just drifted on and he hasn’t got another one. So but as I feel at the moment, seeing him is fine and I did like it when the nurse was there because that was quite a quite a while but, you know, it’s it’s fine as it is now. So I think better, I feel better with him because, when they changed me to him, because I was taking so much medication, I took it all in in a big carrier bag, when I, when they first gave me my first appointment.

Right. 

And said to him I was concerned about taking so much medication so, of course, from then, it’s when he started trying to change things and make my amount of tablets less and different and that’s when, you know, things started to get a bit better. So it’s taken a while.
Warfarin is an anticoagulant used to prevent blood clots that lead to heart attacks, strokes, pulmonary embolisms and deep vein thromboses. The amount of warfarin needed may change according to a person’s clotting time or INR (International Normalised Ratio), which is measured in regular blood tests. People taking warfarin play an active role in managing this medicine through direct contact with the testing centre over blood test results and instructions regarding dose, as well as avoiding certain foods that can affect clotting time. During a recent stay in hospital, Robert had been injecting fragmin (another anticoagulant used to prevent blood clots) himself. For home medication, Steve was using a reminder app on his smartphone whilst Kevin and Madelon were both using dosette boxes to organise their tablets. Loraine had forgotten some of her medicines when travelling, but managed to find a doctor (via a train guard’s announcement) who issued her with a private prescription. Michael X and Barry had chest complaints and kept emergency supplies of steroids and antibiotics at home in case they got an infection. This was very much valued. Robert talked about how he used a food supplement to counteract the side effects of prescription medicines and added, “I do a lot of doctoring myself I suppose.”
 

Anne X has to take her own blood test samples in order to know if she needs to take more or less warfarin. She also has to be careful about what she eats.

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Anne X has to take her own blood test samples in order to know if she needs to take more or less warfarin. She also has to be careful about what she eats.

Age at interview: 79
Sex: Female
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I’ve got to manage my warfarin and I self-test, I treat myself, in other words. If it’s too high, I’ll give it less warfarin, if it’s too low, I give it more warfarin

So I do need a reasonable diet because, people don’t realise, it plays a huge part in how much vitamin K you get in broccoli and greens and things like that, and what you’re eating plays a huge part. So if I don’t eat and decided to go and have a bowl of cereal, then I know I’m going to have trouble with my warfarin because I’m going to have to test it more often to see what it’s up to, and I don’t want to do that. I don’t mind doing it once a week at the very most, sometimes usually about every ten days, but I don’t really want to be keep doing my warfarin test.
 

Michael X was pleased that his practice trusted him enough to give him antibiotics and steroids to keep at home in the event he had a chest infection.

Michael X was pleased that his practice trusted him enough to give him antibiotics and steroids to keep at home in the event he had a chest infection.

Age at interview: 82
Sex: Male
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Is there anything that a healthcare professional has done that you’ve found particularly useful or helpful, or has really made a difference to you?

Physically useful?

In any way, in any way that someone has done something and you think, “Oh that’s, you know, that really helped.” And that might be useful for them to know, for other people?

I suppose I suppose the only thing that comes to mind is is the fact that some years ago they became very willing to give me prophylactic course of antibiotics and indeed of steroids in in hand.

Right.

And trusted me enough to know when to put myself on such courses. They obviously realised that I knew when an infection threatened. That that kind of that kind of support I have found valuable. 
 

When Robert was in hospital he injected a clot busting medicine himself rather than have nursing staff do it. He prefers not to use drugs where possible and takes a food supplement to counteract side effects.

When Robert was in hospital he injected a clot busting medicine himself rather than have nursing staff do it. He prefers not to use drugs where possible and takes a food supplement to counteract side effects.

Age at interview: 80
Sex: Male
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I am quite understanding in, you know, in life in general and people can slip up I suppose, and the days when I got DVT was was the days when it was elastic stockings.

Right.

And that’s all gone now you see. Now that fragmin has come in, and it used to be heparin before they used to.

Yeah.

It’s fragmin from that but fragmin is the clot buster now and you go into hospital, no elastic stocking. It’s fragmin.

And when I first started with it, they used to give you a jab in your tummy midnight, same time every day, midnight and the sister used to come round, fragmin in.

Right.

Now, in actual fact, I was in in January and I was jabbing myself fragmin, you know.

Right. Okay.

Well, it saves the nurse coming out to do it at home and I’d been on it right from the first week.

Yes.

So I do it myself.

Right. Right.

And I don’t mind doing it myself actually. It’s not painful and I like to watch it go in, see what I’m doing.

Right. 

If I see what I’m doing, it’s so much easier but I can injecting fragmin, I can’t feel a thing. I don’t feel a thing. In it goes, squeeze it down, out it comes and if you don’t move the needle about inside, you know, straight in and it’s straight out, you don’t know you’ve done it, don’t feel a thing.

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.

Yes.

But I do, in actual fact, stop the constipation by having Maca Gold.

Right. Yes. Okay.

[Laughs] I do a lot of doctoring I suppose myself.
See also related topics: ‘Side effects of medicines’, ‘Dealing with multiple medicines’, ‘Advice for people living with multiple health problems’, and ‘Interactions between different symptoms, conditions and medicines’. 
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