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Robert

Age at interview: 80
Brief Outline: Robert has had a back problem his entire adult life. He developed Chronic Obstructive Pulmonary Disease (COPD) due to his occupation. Steroid treatment for COPD caused osteoporosis in his right hip and shoulder. He has had a deep vein thrombosis (DVT), pulmomary embolism and heart attack.
Background: Robert lives alone and is a retired fireman. Ethnic Background: White British.

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Robert explains a history of problems with his legs and back going back to 16 years of age. He was found to have a trapped nerve on investigation. He has vertebrae missing in his back. He refused surgical intervention as he would have had to give up work. Instead, he used to wear a corset and avoid sideways movement, e.g. by giving up playing cricket and gardening.

Robert lives alone. He had a fall outside a year ago whilst maintaining the outside of his home, which he thinks damaged a nerve in his arm and is causing problems with writing. Physiotherapy initially worked, but after 3 sessions he was “back to square one” and stopped going. 

Earlier in the year he had to call 999 because he couldn’t breathe and was admitted to hospital via A&E. On investigation, it was found out that he had been bleeding internally, attributed to being on warfarin.

Robert feels he has received very good care that does not square with media reports about NHS services. There are eight doctors at his local practice and he doesn’t mind which one he sees. He has to adapt to what he does as his conditions progress. Currently, any exertion causes difficulties.

He offers the following advice for patients: “And absolutely the best way, I accept what I’ve got and I think that’s the main thing you’ve got to do. If you’ve got anything, especially if it’s chronic, you’ve got to accept it and, what’s more, carry out the instructions and take the medication that you’re given.  I think they’re quite good people, intelligent people, the folk who deals with you and I try and understand …the instructions I carry out, and then I do my own work as well and I do attend lectures actually. I’m in a Breathe Easy group.”
 

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.

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.

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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.”
 

Robert’s previous doctor told him that they cannot operate on his hip due to his other medical conditions. He puts up with a limp as a result.

Robert’s previous doctor told him that they cannot operate on his hip due to his other medical conditions. He puts up with a limp as a result.

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But I found this morning, actually, my breathing was better and my walking was a little bit better but I do walk with a stick.

Right. 

Because of my hip actually and the other doctor I had, he retired on New Year, he said, “They won’t do your hip.”

Right. Right.

Because he said, “With that crumbling bone and with your heart attack, with your COPD, with.” 

Right. 

So he said, but he said, “You can get it done. You can get it done. There is, you know.” He said, “For instance, if you’re out and about and had an accident and broke your hip, they’d do it.”

Right. Right. 

 “They’d take you in and they’d do it.”

Okay.

He said, “Its hard work to get into hospital.

Yes, and.

But I can understand where they’re coming from so I limp.
 

Robert doesn’t mind which doctor he sees at his local practice as they are all good and have equal access to his medical record.

Robert doesn’t mind which doctor he sees at his local practice as they are all good and have equal access to his medical record.

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But normally I see I don’t mind seeing any doctors, about eight doctors in this surgery practice. I don’t mind who I see.

Right.

They’re all good so I don’t mind who it is and, of course, they’ve got my record up to see so there’s no problems there.
 

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.

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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.
 

Robert’s GP sent him for a bone test because he’s had a lot of steroids over the years. He was found to have osteoporosis and has symptoms in his hips and legs.

Robert’s GP sent him for a bone test because he’s had a lot of steroids over the years. He was found to have osteoporosis and has symptoms in his hips and legs.

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Called me in and said that, “I’m going to send you for a densitrometry test.” I said, “What do I want a densitrometry test for?” And he said, “Really, you’ve had a lot of steroids.”

Right.

He said, “And there’s some new publications out on steroids and.” He said, “If you’ve had a certain amount, you really need a densitometry test.”

Right.

So I went for a densitometry test and the result was that I’ve got osteoporosis it seems and it had attacked my hip, that’s the right hip and the right shoulder. So here I am with osteoporosis and I’m being treatment for the same. I am treated, of course, for the COPD. They took me into hospital and got rid of the, well, your body gets rid of the blood clots I know but they did, they, treatment wise, you know, obviously, organised it, they treated me with fragmin in there for the first time.

Right.

The clot buster, and I came out cured from the pulmonary embolism. I have, in actual fact, got all sorts wrong with me through the osteoporosis. I have a lot of problems with my hips and my legs going downwards and my right leg is giving me some trouble now, although it’s the left leg that’s got a DVT and my right leg has is going. 
 

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.

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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?
 

Robert’s GP asked him to be seen by medical students as part of their training. Robert self-medicates in emergencies and puts in his own test samples without prompting from the surgery.

Robert’s GP asked him to be seen by medical students as part of their training. Robert self-medicates in emergencies and puts in his own test samples without prompting from the surgery.

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In fact, he did used to use me as not a stooge but it was an actual, you know, he said to me, “Would you mind, actually?” Because he has students coming through.

Yes, yeah.

 “Would you mind if this young lady saw you?” And I said, “I don’t mind at all.” So he did it once or twice, actually, and then he used to come in, actually, while I was there.

Right.

Sat there and he’d say, “Now then, what’s his diagnosis? What have you, tell me what you’ve found?”

Yeah.

And she used to tell him and one of the things I remember him saying to one young lady, he said, “Now then, you’ve got to realise this, this chap knows more about his illnesses than you do. If you ask him the right questions, he’ll give you the right answers that you need. You’ve got to rely on him. He knows. You just have to ask the right questions and you’ll get the proper information out of him.”

And do you find that that generally the GPs are subscribed to that same idea that you are the expert in your conditions, or do you find that that varies or?

Well, reasonably, I think reasonably. I mean I haven’t had, I don’t, I wouldn’t put myself up that high and I don’t think they would either, but they do ask me the right questions and I do know, in actual fact, if I’m coughing up and it’s brown or coloured, I’ve got an infection.

Right.

And, in fact, I do self-medicate of course.

Right.

I’ve got prednisolone and antibiotics.

Right.

In fact, just at present, it’s usually amoxicillin for chest but the last time I did it with amoxicillin, this is before Christmas actually, the last time I did it with amoxicillin, I did it for the week, you know, and prednisolone.

Yes.

And it’s cut down, they’ve cut prednisolone down, well, completely really, six a day, that’s it. There’s no run-on period or anything and when he when I’d finished and I was coughing and, of course, you cough quite regularly if you’ve got an infection, and it was coloured still after the amoxicillin. So I had.

Right.

Some sputum and I put some in, I coughed and, you know, put some in and I took it down to the surgery, and I just said to one of the girls down there, “Would you send this in for me?” 

Yeah.

I didn’t see a doctor or anything like that. I just, I just and it hadn’t got anything written on it. I said, “I can’t write on them round things plus I can’t write with my right hand actually.” So anyway, she wrote on it and it went in. The doctor rang me up, my own doctor rang me up a couple of days later, he said, “You’re on the wrong medication.” He said, “You’re not, you need doxycycline.”

Right. Right.

He said, “Come down. I’ve written a prescription. Come down and get this prescription.” And it was for doxycycline and he and he said on the phone, he said, “I’ve given you two weeks’ supply. Take the two weeks.”

Right.

And it cleared me out.
 

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.

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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.
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