I want it so, so that patients can hanot only have accurate access to, to their records but that they can allow other people to have access to them, so if they’re away on holiday, someone like me, down in Cornwall, decides I’ve got a problem, go to the GP surgery, I don’t want them to have to be ringing the local trust here or themy GP here and not get an answer or what-have-you, I want them to have a look and, and for me to say, yeah, that’s fine, I’m I want If I, decide to stay on for an extra couple of weeks on holiday somewhere cause I like it, and say, oh dear, I’ve not brought enough medications with me, I want to be able to go to a pharmacist and say can you give me a pharmacy prescription please that’s my reference number, that’s my NHS number, you can go on, go on there and get my medications off. Er, can’t do it.

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 myI 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.

Somebody else who comes to this website who’s got multiple health problems, they might have problems coping, they might be worried about the future, what advice would you give to people who are in the same boat as you are?

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.

I’ve actually got one of the largest incisional hernias that, that you will see, and that is an incisional hernia. And we did spend a year We thought it was cosmetic originally, but it, um, it doesn’t actually help because there’s no stomach muscles, so that doesn’t help the back. We did spend a year or so, talking to a thoracic surgeon at a relatively local hospital, and he said that he After about a year he said yes, I can fix it, but it’s gonna be two sheets of A4 mesh going in, one inside, one outside, and if, and that’s gonna be a problem if we need to if anybody needs to go in 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.

The back part, the MSK thing makes quite a significant difference to my lifestyle. Add it to the fact that, I don’t tolerate well any opioid products

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.

Is there anything else we haven’t, spoken about that you want to add?

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?

What’s the main impact that all of these health problems have on your life, right now. Do they limit what you can do or?

Yeah, there, therethere’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, whenwhenever 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 prowith the other problems I’ve got?

They talk about exercise for bad pain these days.

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 allmost of my lumbar discs don’t exist. They’ve been mashed up. Probably because of all the driving andI 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’swhich 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.