Andrew

Age at interview: 65

Brief Outline: Andrew has had asthma and eczema since childhood. In middle life he developed pancreatitis, which led to diabetes 18 years later. He also has heart disease, a disorder of the adrenal glands, and prostate cancer. He recently had his appendix removed.

Background: Andrew is a catholic priest. He is married with two adult children. Ethnic Background: White British.

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Andrew “always thought of himself as slightly delicate” and describes a lifelong history of various illnesses and repeated contact with health services, especially since he developed pancreatitis “in middle life”. The condition developed slowly at first, but then became persistent. He was hospitalised “once or twice” as symptoms came “in waves.” At the first admission it was “a little bit touch and go as to whether I would survive”. He spent a year on morphine for pain control.

A delay over moving to insulin for his diabetes was explained by a diagnosis of heart disease in 2004, which was judged to be the result of smoking. He had 4 stents put it. Later, he was admitted to hospital after feeling faint and diagnosed with Addison’s disease, a disorder of the adrenal glands. One specialist attributed this to long term use of an asthma medication, although another specialist disagreed. 

Following a CT scan investigating blood in the urine, he was diagnosed with a “small” prostate cancer which is actively monitored. On examination, “some thickening around the appendix area” was also found and he had his appendix removed in 2012, although it was found not to contain cancer. He reports “a bit of muddle” in this regard, following referral to two different clinics simultaneously and a lack of clarity about who was in charge of his care.

He is currently taking “a cocktail of drugs” and reports that with multiple health conditions and increasing age, as time goes on “things get added.” He views diabetes as the most difficult condition to deal with. He feels susceptible to catching viruses following long-term steroid use.

Andrew is very happy with his GP and mentions that he was able to contact her by email when he was abroad. He prefers to see a GP who works part-time, but he realises he can’t always see her when he attends. He has a lot of contact with healthcare and doesn’t see reminders to attend for routine checks to be applicable in his case.

He sees a shortage of resources in some areas of the health service. On communicating with doctors he says: “too much information can actually be quite frightening”.

Andrew believes that some conditions, such as diabetes, are more difficult to manage than others. It is also tricky to keep steroid use to a minimum in order to avoid side effects.

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 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.

Andrew feels he’s had excellent treatment from an endocrinology clinic but he has to retell his story each time to a different doctor. However, one doctor had taken more of an interest than the others.

I think my other comment would be you know, picking at, well, two more things really, one is I think the practice varies from clinic to clinic, but what I found in the endocrinology clinic is I’ve always had excellent treatment there, but what I found is that there’s been very little continuity in the sense that I’ve almost always been seen by a different registrar. And they’ve got better recently, but there was a time when they always seemed to start off with a clean sheet of paper and you had to tell them the whole history again. And sometimes that’s been quite helpful because for instance, on one occasion I had a, I think a biochemist, who did a full kind of analysis on the result of what I said, but other times you think, “Well, don’t you keep records. Can’t we just carry on from where we got to last time?” I think that was a, that was a slight problem at one stage about how they did things.  

Andrew had been treated for claustrophobia, but this was not initially considered when he went into hospital for an operation which required him going in a lift.

The other one the other one is I’m severely claustrophobic, and I mean so much so that it was treated medically. I was sent by the GP for cognitive behavioural therapy. They gave me cognitive behavioural therapy in the 1990s can’t quite remember when, and decided that it wasn’t curable because of my age and how long I’d had it, and the way I’d reacted to it and that, therefore, I’d got to just have strategies for living with it. This meant that when I was admitted to hospital in 2004, with the, with what turned out to be the adrenal deficiency, I was faced with a with a journey in a lift, which I wasn’t prepared to undergo and there was a lot of distress as people tried hard to make me go in this lift. And, eventually, my wife, who is a psychologist sort of said, you know, “For heaven’s sake, you know, pull yourselves together. Start treating the whole person instead of, you know your speciality.” And I was treated on the ground floor of the [hospital] for my stay. As a result of that, when I went into the [hospital 2] for my appendix, I was partly anxious that it was the [hospital 2] because there are, there’s less floors there, so a two floor building rather than a three floor building, rather than an eight floor building. And so I asked for this to be taken into consideration and I have to say that, on that occasion, everybody medical coped with it extremely well. I wasn’t required to go in a lift. 

The failure, and there was a failure, was on the part of hospital managers because, although this need had been firmly indicated and properly discussed at the clinics and by the, and specially flagged up by the GP and discussed with me, the nurse and everybody else, is when I, when it came to it, the operation was on one floor and the ward was on another. And so I was faced, and nobody had done this before this, they all said this was the first time this had happened, is I was faced post-operatively with climbing the stairs and they were all, to be fair to them, they were all very keen to help, and I got I think two nurses and two porters, who were prepared to actually carry me up.

Andrew lists some of the medicines he takes on a regular basis. He concludes, “So I rattle around if I jump up and down.”

The other thing that I sort of, I mean these things pile on as you get older because, of course, all of those bump along and you have the medication for all of them, you know. You have paracetamol and codeine because your gut doesn’t behave terribly well, and doesn’t behave terribly well because of the aftermath of the pancreatitis, and so you get used to controlling that that way a little bit. You end up with a cocktail of drugs for ischaemic heart disease. I have ramipril. I have diltiazem. I have, trying to think what else there is, well, I have omeprazole for the, to control the gas as well. I have, oh yes, I have bendroflumethiazide I think is how it’s pronounced, one of those every morning, a sort of water tablet and I also have furosemide, I can’t remember, they change it actually but whatever that’s called which I have a couple of tablets of, but that’s really to do with the water build up that you get with the steroids. So, you know, but it presumably also helps with the with the heart thing. So I have all that and then then I have a statin and I have, somewhere there was a research to the effect that the largest dose of statin, atorvastatin, eighty milligrams I think a day, big, fat horse pill, this one field study said that that actually reduces the problems with ischaemic heart disease, that it actually, the atheroma is reduced. I don’t think there’s much to back that up but that is one study, so I said to the GP or the cardiologist or somebody about it and they said, “Yeah, fine. Go for it.” And I also have ezetimibe, which is, which is used conjunctively with atorvastatin. It increases the protection so I have all that every day. So I rattle around if I jump up and down. 

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.

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.

Andrew points to the various factors and issues involved in illness. He thinks this is complicated for health services to deal with.

I mean I think we’re I think we’re, I don’t want to get preachy because especially wearing a dog collar, but I think we’re actually getting to the stage now where we’re discovering that illness in all its forms is multifaceted and it isn’t just about something that’s wrong with a bit of your body. There all sorts of different things in play and that, in fact, successful healthcare has got to actually, deal with all of those things at once, and how you do that for everybody when they’re all different, you know, is what makes the situation impossible or very complicated.

Andrew thinks that ‘choice’ in treatment decision making is an illusion when people would rather be told what the doctor thinks about treatment. He believes too much information can be damaging for patients.

Is that something that you’d ever ask for or?

What would I ask for?

For an appointment or a check-up or.

With a cardiologist?

Well, I’ve always, I think that’s probably the last relic of the of the deferential patient culture really, is that I think you just have what you asked, what you, you know, when they ask you to go, you go and they talk about choice and all that and I think to myself, well, I’m not sure what choice means. Does it mean, when I, do I want to go to [town in the north] or do I want to go to [town], you know. I might as well go to [town] and I think there are, there’s a sort of bogus culture of choice around. I mean for instance, when my prostate cancer was diagnosed, I could have elected for a prostatectomy or I could have elected for, you know, radiation therapy or various other things, which would have been inappropriate. So in the end, you’re in their hands because you’re saying to them now, “What’s the appropriate treatment?” You know, they then say, “Well, you have a choice. You have this, this, this or this.” You say, “Well, which do you recommend?” At which point, they say politely, “Well, it’s a no brainer. That one is the obvious one and those three are ridiculous.” But you’ve had the choice and so it’s a it’s a funny business this choice thing really. And, so I think we’re still probably at the end and probably always ought to be at the end of the position where we do want the medical professionals to suggest what we should do, but with as much information as possible. I think they’re, where they go wrong nowadays is I think they can frighten people because I think they’ve actually gone from, I don’t think I’ve ever been unnecessarily frightened by them. Well, I have once, actually. Yes, I was, have once. When I was in hospital first time I think, the surgeon had come along to the bedside and boomed that they’d found something that they couldn’t explain inside my thing and they were investigating it. And I said, “What is it?” And they said, “We don’t know yet. We haven’t investigated it yet.” And I thought well, why don’t you just belt up until you have because I then decided I was dying, that they’d found, you know, a malignancy right in the middle of me and it was going to finish me off. Which is, you know, with prostate cancer you’re, with pancreatitis you, pancreatic cancer is the one you are frightened of because, you know, there is, there’s a not much chance of recovery from that. So there I thought well, too much candour, too much information can actually be quite frightening. So somewhere in the middle of that is an answer to whatever question it was.