John
John had a heart attack at 52 after which he retired. A spinal condition has the biggest impact on his life. He is not allowed to take some of the recommended treatments because of his other health conditions. John advises people to talk to others about their health problems and seek advice on the Internet.
John is a retired consultant in microbiology. He has volunteered for patients’ groups and acted as a hospital trust board member. He is married with one grown up child. Ethnic background: White British.
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When John had a Myocardial Infarction in 1989, hospital waiting times were long, but John was able to obtain quintuple bypass surgery privately through a company insurance scheme. He quit work after a hospital consultant suggested that his current lifestyle would likely lead to further heart problems. Eight years later four of the bypasses had to be re-done and in 2002/03 he had stents fitted following a further attack. Kidney (renal) problems were diagnosed during the second coronary artery bypass graft and followed later by a left renal artery bypass graft in 1998.
John’s day-to-day life is mostly affected by problems with nerves trapped in his spine. He has had repeated operations for this, which lasted over a course of 4 or 5 years. He also has a large hernia at the site of a previous surgery scar, although he has decided not to intervene in this as doing so might make it harder if “anybody needs to go in again” and there is a one-in-three chance of death with the operation. Having multiple health conditions has limited the number of treatments available to him. He is also allergic to opioids, which limits the drugs he can take for the pain in his spine. At the time of interview, John had been suffering repeated urinary tract infections following the removal of a “small tumour” from his bladder.
Managing health conditions and multiple medications has caused problems, especially when away on holiday. His changing health and responsiveness to treatments (or not) means he has to be prepared to move lifestyle goals that he sets himself. There’s nothing more that can be done surgically for John’s back and the recommended physiotherapy seemed to make things worse. His account suggests that once treatment options have been exhausted one simply has to learn to cope with a certain level of pain or limitations on what can be achieved.
John’s biological employment background and the expertise he has gained from being involved in patients’ groups, hospital management and research projects seems to make it easier for his GP to involve him in a care “partnership”, where his opinions and feelings are valued. However, his recent involvement with the health service leads him to point to low staff morale, money wasted on senior managers and the high level of cuts imposed on health services. John is an advocate of electronic health records “accessible on demand by whoever needs to have access.”
When asked what advice he would give other people with multiple health problems to help them cope better, John advises talking to family members, getting informed about symptom progression (e.g. via resources on the Internet) and finding support groups.
Because of John’s multiple health conditions and existing medicines list his treatment options are limited. This affected a recent episode of recurrent urinary tract infections.
Because of John’s multiple health conditions and existing medicines list his treatment options are limited. This affected a recent episode of recurrent urinary tract infections.
Yeah, there, there…there’s a cumulative thing because it’s not just one condition.
There are lots of little things. For example, because of the, kidney problems then I’m not able to take non-steroidal anti-inflammatory drugs for the back and the nervous problems. I can’t take things like diclofenac, which is a, an anti-inflammatory thing, because not only is it not recommended for kidney problems, it’s also got, not recommended for cardiac patients.
Right.
Because of the exercise that I should take for the cardiology side of it I’m not able to do because of the back problems. And every time we’re looking at, um, medications they’ve got to take all these ramifications into account. So the medications that I’m able to take are restricted.
And how many medications are you taking at the moment?
On a daily basis, six. And because some of the medication that I take caused stomach problems, I take proton pump inhibitors maybe once a week or so, when…whenever I feel as though the… that I need to take that I take proton pump inhibitors. I use an anti-inflammatory gel when on a, on a bas… the basis of if I… my back is so bad and then I take it and rub it on, but it’s not the best thing to take, even though on television it says it is. The… all these little things knock on. I’ve just had, almost 12 months of recurring urinary tract infections, and again which antibiotics can you take with the pro…with the other problems I’ve got?
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.
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.
A surgeon told John that an incompletely healed wound from a hernia operation could be repaired using sheets of mesh. However, this comes with risks and would create problems if he needed surgery again.
A surgeon told John that an incompletely healed wound from a hernia operation could be repaired using sheets of mesh. However, this comes with risks and would create problems if he needed surgery again.
It will be at least eight hours of reconstructive surgery, and, by the way, there’s a one in three chance it’ll kill you [laughs]. So we decided not to have that done and put up with the thing.
John does not tolerate opioids, including codeine. He has to be careful he doesn’t use too many products containing aspirin for pain relief.
John does not tolerate opioids, including codeine. He has to be careful he doesn’t use too many products containing aspirin for pain relief.
Right.
…from, you know, sort of Codeine onwards, every single side effect that there is I get, so I can’t take those. So painkillers are not much… are no more use than anti-inflammatories as far as I’m concerned. But I can’t keep taking aspirins, and not allowed to take the ibuprofen and derivatives because they’re aspirin derived originally and cause the problems.
John encourages people to accept their health problems as see them as an opportunity to do things that they never thought of doing before.
John encourages people to accept their health problems as see them as an opportunity to do things that they never thought of doing before.
Yeah, I… it’s a sort of philosophical thing, and that is, you’ve probably come to a turning point in your life where things have got to change. Accept, accept it, and try to do something that you’ve always wanted to do. Don’t sort of think, well, because of this I can’t do this job I keep going to, whether it’s an engineer or road sweeper or whatever. What is it that I wanted to do? maybe this is an opportunity to do something that I would never have done, like, okay, I’m, I’m 58, I left school at 15 with no qualifications, why don’t I see what I can do with the Open University? See if I can get a grant for it. Why don’t I have a look at the local, university or polytechnic, whatever we have here, and see if I can get, a mature student grant. Maybe I would b… maybe I would be extremely good at teaching Esperanto. I don’t know. I’ve never done it. So this could be an opportunity to actually change my life about and change it for the better even though my health is not what I would have wanted. Make sense?
John wants to see better health records in the NHS accessible to patients and anyone involved in their care. For example, it would help with getting prescriptions on holiday.
John wants to see better health records in the NHS accessible to patients and anyone involved in their care. For example, it would help with getting prescriptions on holiday.
So for an old duffer I’m actually way ahead of most people on health informatics. Besides which, I’m a board member of the UK Faculty for Health Informatics. And I, you know, I can see the sort of, the 13, 14 year olds now in five years’ time saying, what do you mean I can’t see my records? What do you mean they’re not digitised? You know, what do you mean they’re only on paper? I can do my bank, I can order my…I can order groceries from Waitrose and Tesco, have them delivered. I can go on to Amazon and, have medications off there, non-prescription stuff, delivered to me tomorrow morning. You know, why, why, why are we messing about with bits of paper…
That, you know, you’ve got a, you’ve got a medical record at the hospital this high that takes half an hour to find, why can’t you just look at it.
So, yeah, my hope for the future is that we do get a workable, electronic health record which is accessible on demand by whoever needs to have access to it. Sorry, that’s my rant for the day.
John’s advice is don’t keep your problems to yourself, work out what might cause most problems in the future and find support via the Internet.
John’s advice is don’t keep your problems to yourself, work out what might cause most problems in the future and find support via the Internet.
That’s a difficult question, isn’t it? Because everyone is an individual. But basically, don’t keep it to yourself. Talk about it with your family. Make sure people who should know do know, and they know what likelihood is gonna happen or what progress could be made, what you can and cannot do, rather than pretending that you can do things that… And try to work out what the progression is of your multiple problems. What is the… What is gonna give you the most problem? Because that’s what you need to sort out first. And try to find the… And for that, look on the internet, find support groups. Not just in this country. And you may or may not feel that you can talk to other people who have the problem. Because people who’ve had the problem, particularly ones who’ve had it maybe longer than you have, lived with it longer, may well have a solution, or a coping mechanism that will help you. And you don’t need to invent the wheel. Yeah.