Living with multiple health problems
When treatments only go so far
Some of the people we interviewed described limitations of treatments, such as those that did not work, only worked for so long (see ‘Different views on prescribed medicines’), or could not be used due to existing conditions and/or prescribed medicines. John was one of the people who said that the drugs he had taken had not made any difference, in his case pain relief for a back problem. He also described how there is sometimes nothing more that can be done following previous operations. John also mentions how the relief of pain after an operation (in his case on his spine), can be short lived. Kevin already had a metal plate screwed into his hip which made further surgery potentially too complicated. Jean had been told that she could not have heart surgery as she would not be able to cope with a general anaesthetic.
A surgeon has told John there is nothing else that can be done for his back pain. A hip operation would not help as his condition is caused by trapped nerves, not joint problems.
A surgeon has told John there is nothing else that can be done for his back pain. A hip operation would not help as his condition is caused by trapped nerves, not joint problems.
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Makes it worse. I’ve been through the NICE recommended…
Right.
…back pain physiotherapy, and it makes it worse [laughs], so that’s the problem. The surgeon who did the original work on my back says there’s nothing more he can do… and he’s not an orthopaedic surgeon, he’s a neurosurgeon and one of the, the most highly regarded neurosurgeons in the area. If he says that nothing more can be done, got to accept it. And, um, that’s the problem. I’ve tried these support corset things. The only trouble is you try to sit down and they ride up, so they finish up [laughs], they actually finish up under your armpits…
In terms of painkillers I have had the epidural injections into the spine twice. Neither of them didn’t work.
They didn’t do anything at all.
Have you been told what the cause of the back trouble was?
Yeah. Basically all…most of my lumbar discs don’t exist. They’ve been mashed up. Probably because of all the driving and…I did and the fact that some of the work that I did quite often involved squeezing through small spaces sort of thing, particularly when I was working as a consultant in the brewing industry, in, in microbiology, I was climbing in and out of beer vessels and tanks and things to, to take samples in there, climbing up, yeah, climbing them twisting them, whatever. Yeah. But whatever it was then the discs were mashed up, and the, I don’t know what the technical term is, but the holes in the spine that the nerves come out of were… at the lumbar end again were blocked basically, and they were pushing on the nerves. They were cleared out, as I say, by the neurosurgeon, but that only lasted about five years. So I get what most people would describe as sciatica although it’s… I… it’s not only on the back part of my legs, I also get it on the femoral nerve, particularly the right hand side, as well. So it’s…which is like sticking red hot needles in. Most people… Anybody who’s had sciatica knows what it feels like, but I get it front and back. And, as I say, the… from that possibly the tendons tend to tighten up, because that’s a normal body reaction to pain… so that kind of locks my, my hip movement, even though I have normal hip movement. It’s not a joint problem. You know, most people with hip problems, new hip, fine, go away. A new hip wouldn't make any difference to me.
Surgeons would only give Kevin a “fifty-fifty” chance of an operation on his hip being successful as there is already a metal plate attached from previous surgery for Perthes disease.
Surgeons would only give Kevin a “fifty-fifty” chance of an operation on his hip being successful as there is already a metal plate attached from previous surgery for Perthes disease.
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Well, I normally get stiff in my, with my left hip.
Right.
And I gets a lot of pain, because it’s the same when they’re in the…it’s only like, get a really sharp pain and I can’t move, laying on… laying on my left side to ease the pain off and take some paracetamols.
So the hip that’s causing you the problem is not the same hip that you had a problem with when you were younger…oh, it is the same one?
Yeah.
So that’s, kind of, gone on over the… over the years.
Yeah. I’m still under [a hospital], but they won’t do the operation, they would only… they would only give me fifty/fifty.
What a fifty/fifty chance of it working or…
Yeah.
…a fifty/fifty chance of you being alive afterwards?
Well they said it could be walking again or else I’ll end up in a wheelchair for the rest of my life, so…
Right. And would you have preferred to have the operation then, do you think? Did they try to put you off?
I think they… I think they tried putting me off a little bit, because they would only give me, like, fifty/fifty and I wasn’t, happy. So I walked away out there and so I saw another doctor and he said, he said we could do the operation, but he said it would be… because there’s a plate I’ve got in there now, they’ll have a job to remove it.
Right.
And the, because I’ve got three screws in my… in the plate on… in the plate as well.
Right. And the plate is related to this…
Perthes Disease.
Pat could not tolerate drug treatments for high cholesterol so she manages it using diet. Diet is also seen as the best way of managing her IBS (Irritable Bowel Syndrome).
Pat could not tolerate drug treatments for high cholesterol so she manages it using diet. Diet is also seen as the best way of managing her IBS (Irritable Bowel Syndrome).
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I have raised blood pressure of course, but I don't know whether that's cause or effect. My cholesterol is higher than they like it, but none of the statins or fibrates suit me at all and I've tried about five different types. And so now I just manage it partly through diet but also…well, this is commercial, Benecol, the drink which the consultant advised me to use. And I mean it's not terribly high, it's five point two which in most people would be considered okay, but with diabetes obviously they like it to be lower.
Blood pressure treatment, I have two tablets a day, I was on three and recently I had quite a low blood pressure, it was actually a hundred and fourteen over forty seven. So I was passing out, so that had to stop.
I have irritable bowel syndrome for which I recently had a colonoscopy, and everything was normal and with irritable bowel syndrome they don't seem to be able to do anything basically, other than diet and that's how I control it. But I do self-medicate, I have a probiotic which I told the consultant I was using and he seemed to think that was okay. They offered me hypnotherapy, for a thousand and something pounds, so I stick with the probiotic.
Tammy is worn down by trying drugs that don’t work and have unwelcome side effects. When she was prescribed the contraceptive pill her epilepsy worsened. She links shortfalls in current treatments to lack of scientific progress.
Tammy is worn down by trying drugs that don’t work and have unwelcome side effects. When she was prescribed the contraceptive pill her epilepsy worsened. She links shortfalls in current treatments to lack of scientific progress.
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It had been on the Sunday and I’d just joined a running club. I was all sort of like being, you know, poor me, kind of thing, and he and he just sat there looking at me and I quite understand that as well. I don’t expect him to say, “Oh dear, yeah, yeah, yeah.” So, you know, he’s not cold. It’s not like he was looking at his watch, you know, “Who’s next?”
But yeah that’s the difference and perhaps my GP, I don’t know what she’d have done about it either but he, you know, he’s clearly, he just wants to prescribe and let you go and try it, you know. I don’t think it’s in his interest to sort of really understand that the instant impact it has on me, but that that’s exactly what was on my mind at the time. And, you know, I’m, underneath that, I’m thinking, “It won’t work anyway. It won’t bloody work.” And it hasn’t, you know, that’s the thing. So it’s a really tricky sort of area to be in, you know, and I think that’s similar with the diabetic consultant, not really, but I’ve seen one recently and I don’t tend to see the same consultant for my diabetes, which I wonder if that’s a problem. The benefit I think with the diabetic clinic, it’s at the same hospital with the neurologist, specialist nurse, diabetic specialist nurses again, they’re very approachable.
I became pregnant but lost it actually, which again, like you say, you know, was that such a bad thing really. Then so those drugs, yeah, quite, affected me more. Either I’ve grown used to them, haven’t I, or become immune to some of the side effects or drugs have got better, sort of thing.
I know one of the big mistakes, shall we say, which happened again sort of through these different departments that I visit, I saw a chap, I think he was like a dietician, and it was to do, it wasn’t to do with trying to get pregnant, at that stage. It was more to do with, what came up in conversation was my menstrual cycle and it wasn’t good, you know. It was very erratic and I guess I was discussing with him was this to do with my diabetes or medication and everything. Well, he suggested I went on the pill, you see, a contraceptive pill.
Right.
To regulate periods. So I did that and, funnily enough, you know, I seizured, you know. This this is almost at the point where I had to leave teaching, were worse, much worse, I did get three in one day. I remember calling it like my freak week, you know, when I just seemed to have so many all, you know, peculiar, god knows why, and, at the same time, I just think that way, no, there isn’t a reason why. However, saw my neurologist very soon after that and he, I mean he wasn’t sort of openly appalled, but he was not happy with the fact that I’d been prescribed the contraceptive pill because it is known to reduce the effects of one of the drugs I was on for epilepsy you see so.
Would you say that you’re satisfied with the care that you’re receiving at the moment?
Yeah, 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.
Following a worsening in Ronald’s diabetes, new treatments affected his kidneys. After having his gall bladder removed it took a long time for the wound to heal but his GP performed a minor operation to help the healing.
Following a worsening in Ronald’s diabetes, new treatments affected his kidneys. After having his gall bladder removed it took a long time for the wound to heal but his GP performed a minor operation to help the healing.
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And you mentioned that you also had a cholecystectomy?
[mm mm]
I’ve written here that keyhole surgery, not a success and then.
No.
You required open surgery?
That’s right, yeah.
And you had some infection, which took.
A lot of infection.
Right.
Yeah.
And that took quite some time to heal?
Quite some time, yeah. It was so bad that my GP I had at the time, he happened to be a surgeon before he was a GP and the settee where you are sitting now, he actually performed a minor surgery to assist the healing process because it wasn’t going the way he’d have liked. And eventually, it did clear up, you know, because the antibiotics that they gave me, they tried me on god knows how many different ones, and I was going through course after course of these without much effect at all and, eventually, it cleared it. But it was a far bigger, had a far bigger effect on me, the operation, than I ever thought it would be.
Right.
You know, because it really, not psychological, but it sort of felt really bad to the system. They explained to me that obviously, foods that I’d eaten before would be not tolerated due to the sort of the part of the stomach being moved, removed and by and large, it hasn’t done that much sort of damage but the thing is I, what it has done, and I’m pretty sure it’s led to my not processing my food the same. My weight has increased quite a lot and it’s not very pleasant.
Sue found that there wasn’t much GP input following a stroke, or physiotherapy provision in the community. She found a personal trainer to supplement her care.
Sue found that there wasn’t much GP input following a stroke, or physiotherapy provision in the community. She found a personal trainer to supplement her care.
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Not really. Not really. The GP surgery were very supportive but that was about it.
Right.
If I’m honest with you.
Would you have liked more GP input or?
I guess, knowing it was there, oh god, I don’t know, to be honest. It was like, it’s like having a friend on the end of a phone, you know they’re there if you want them. That’s the only way I could describe it. So if my husband hadn’t heard about this centre, then there is no way, any other way we would have heard about it I don’t think.
Right.
So I guess that sort of answers your question. There wasn’t a great deal of input.
And yes, perhaps there should have been more input. A lot of, like I say, a lot of the things that we have done has been off our own backs. For example, the trainer, I found a personal trainer for when I came out of [rehabilitation centre], where I was having forty-five minutes of physio, forty-five minutes of occupational therapy, forty-five minutes of psychology if I needed it, forty-five minutes of speech and language therapy, again, if I needed it. And that was every day and every patient had their own individual schedule timetable tailored to their needs, which was set up by the, what do they call it, like the management team they have.
Yeah.
Is it SMT, something like that, senior management team.
Right.
Where all the therapists, the doctors, the consultants get together so I had my own timetable. I shared a room with a lady who was in her thirties, who had her own timetable and that that’s the difference. Forty-five minutes a day, five days a week as opposed to an hour a week in the community and there’s the difference. No wonder I am where I am
Steve found that health professionals were really good but social care fell short of his needs. He didn’t qualify for the social support he wanted as he didn’t need help with going to the toilet.
Steve found that health professionals were really good but social care fell short of his needs. He didn’t qualify for the social support he wanted as he didn’t need help with going to the toilet.
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The health professionals I think have been really good. Social care I think has been not so good. Because my partner’s not been very well, when I came out of hospital the second time we arranged for carers to come in and help me, because obviously being under precautions for a hip replacement I can’t put shoes on, put socks on, put pants on, that kind of thing. So we’d arranged for carers to come in twice a day just to help me get dressed so it wouldn’t affect her so that she could kind of carry on. And the carers that came in, themselves the carers were fantastic, but the organisation of that care was atrocious. They’re saying, you know, a forty-three year old man, forty-four, can, can expect somebody to get them up and dressed somewhere between, you know, half past seven and twelve to get dressed, to get a wash and dressed, and then any time from three till eight to get ready for bed. It’s not, not practical for ninety per cent of the population I think, you know, to be told, oh, somebody will be there between this time and this time to get you washed and dressed. So, you know, the latest they could come in is one o’clock in the afternoon to get, to get me washed and dressed, and then potentially they could be here at three o’clock to get me ready for bed, you know, where’s the just general decency in that. That was the biggest thing I think that we found.
And also generally not having people understand, you know, people coming to do assessments and then not understanding the effects of fatigue, the effects of [pause] just the, just the general, you know, just, oh, because, because my partner doesn’t wipe my bum, doesn’t help me to the toilet, I, you know, we’re not entitled to anything. When we’re not asking for anything huge, just…I think at the time we were asking for just some help to keep us going as a couple, you know, something so…because I was off work, I was not very well, you know, just maybe just someone to come in and talk to me so [partner] could go off and do something else, which is not what we were told, we were not allowed, we’re not entitled to it because she didn’t wipe my bum, didn’t do enough personal care.
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