So what kind of information have you been given specifically about the kidneys? it might have been as part of your general diabetes information?

Nothing really. I’ve learned more from that leaflet that I had come from you [referring to Patient.co.uk leaflet on mild to moderate CKD that GP sent out together with the study invitation], than I have from anyone in the surgery.

Right

In the doctor’s surgery.

Have you ever requested any additional information?

No. Perhaps that’s my fault; I should have asked a lot more questions.

Do you feel able to ask questions of the doctor or nurse?

I think sometimes it’s which doctor you see. I think you have more confidence in some of them than you have in others.

I’ve never been told how bad my kidneys are.

Mm

I’m not sure whether I’m a low sort of category one, or a medium or a high category.

Have you been told about different stages of kidney disease?

No. No I haven’t been told, some- as I said, I’ve learnt more from that little pamphlet there.

And there isn’t a lot in it is there?

No! I’ve learnt more from that than whenever I’ve been to the doctors.

Mm oh hang on, so you have got the Patient Co UK, so who gave you that?

That come from you

No.

No, from the doctors, that come from the doctors.

OK?

That come from the doctors.

How did they give that to you when you saw them or did they say?

No it come through the post.

Together with the invitation for the study?

With the invitation and I filled the invitation out and sent it back, the invitation to you, and I kept that and it was funny, when you rung me up I was sat down reading it. Because I couldn’t find it and I did have it, it was over and amongst the paperwork over here.

Oh, I see that’s what they’ve done.

And so I was just reading it a bit. I had read it about three weeks or more ago.

Mm

And then I picked it up again and I was just going through it and I went through it more thorough and . there was more information on there than I’ve ever had.

So this is the Patient Co UK leaflet?

Yeah, yeah.

And can you remember was there anything in particular that stuck in your mind that your learnt that you didn’t know before?

It was the thing that I didn’t know about proteins.

Mm

In your you know, why it does go through our kidneys and what you can have in your water, and I never knew any of that.

Mm

The same as I said, I knew that your kidneys were a purifying system for the body.

Mm

And it’s not like the liver, you understand that renews itself, but with the kidneys they don’t, they just either get worse, they don’t get better.

Mm. Yeah so that’s your understanding that they don’t get better regardless of what you do?

Yeah. what happens or you can’tI think sort of they may be able to give you some sort of medication that helps it.

Hm mm

And this is what I said should you be drinking lots of- of water? So that it either flushes through your kidneys, makes them flushes them out more, but I’m not certain about it.

So is there anything in relation to kidney checks or the kidneys themselves that you feel you do not know as much about as you would like to?

[Sighs]…I think I would like to know more of what is wrong or why the kidneys are going wrong but I’m not sure how to ever go about it you know, how to ask questions or I just- I just don’t know enough about it.

Do you feel in any way reassured by having the tests?

Well I did, but nobody tells you nothing so I’m going to I think I’m going to make a little list. I realise that I’ve been letting them sort of- but that’s me. I think I’ve perhaps been letting them walk all over me. I’m going to make myself a little list and I’m going to say, “Well blood test right what’s happening?” and I’m going to start questioning.

Mm

I think I need to question people. About- because it is my health in the end isn’t it and I think I need to ask them. Instead of- I just need to ask them what they’re going to do about it.

Mm

Or is there anything they can do about it.

Mm

And let me know what the results of tests- of tests that I have; it’s no good saying to me, “Well yeah you’re fine.”

But the problem is you see when you go to the doctors you’re allowed each patient, five minutes.

Five?

Five.

I thought it was ten, it’s five, is it?

No, five. And the problem is you’ve got to when you’re going, you save it all up to say little things that are wrong and then you get there and you’ve got five minutes I’ve got to ask, you know, I’ve got to think, what’s most important.

Mm

And so I so it might only be a little thing, might even be at the bottom because I’ve got to do the important things first.

I don’t think theres nearly enough emphasis placed on, on the things that you can do for yourself to maintain health, and to reduce the rate at which your problem occurs.

So do you think it’s something that you should have been advised to do earlier?

Well the GP surgery certainly didn’t talk to me about any of these things. And, you know, apart from the usual five a day that sort of thing you know, nothing.

Hm.

But certainly with, once we got, once we were under the care of the renal unit, which, of course is why we should have been under the care of the renal unit earlier, the nutritional advice was sound. And I still I say, we started on it, under [name], my wifes direction, very early on. And so, I don’t remember finding it too difficult to follow their advice.

He showed me the laptop and there were, you know, columns and figures and that. But I’m sorry, I really didn’t take in what these meant and I think it’s only since then that I’ve tried to find out more. But really, theres a lot I need to find out more about. I’m pretty much in the dark. I feel that I’m pretty much in the dark.

What would you like to find out?

I think I would like to find out if there are things that I should be doing that would benefit me. As I say, I was given the idea about having a good level of fluids and, sort of, a sensible diet. But I don’t know whether there are other things that I should be doing. I don’t know what I don’t know [laughs]. That’s the problem.

So your GP hasn’t suggested that theres anything you should be doing?

No.

So have you been given any kind of information about chronic kidney disease, any written pamphlets or anything?

No, I haven’t.

Would you like to have?

Yes. I would.

What sort of things would you like to know?

What is the best way to manage your diet in the way that will benefit your, your kidneys? And are there any, sort of, perhaps, danger signs to watch out for when they might not be working well?

So did any of the health professionals suggest that you changed your diet or was that something you did off your own bat?

I’ve done it on my own. All that I have done is on my own because I feel theres not any help, and the GPs if you try to say, “Is there something I can do to help myself?” they seem to not want to talk about it as if it’s all pushed aside, which I feel is quite wrong really because, you know, if you go in your doctor’s surgery today you will see a lot of leaflets on heart disease, on I don’t know, a various range of things, but you’ll never see a leaflet on kidney disease or what your stage you’re supposed to feel fine because it doesn’t really exist to them, but it does and you do get symptoms and, you know, I don’t why they don’t know that you do, I don’t know. But I could sit and tell them that you do, and I would, yeah.

Mm so do you think you might go into it in more depth on a future occasion?

If I found the doctor was interested about it I would, definitely, but as to yet I haven’t found that. I’ve found it’s like push it away or, Well we won’t talk about that, what’s wrong with you today?, you know. But if I’m on a level with him and I can talk to him about it, and if I could ask him if I could see maybe a dietitian, which I have asked for before, which I did go, and when I got there the man that I saw said , I said, “Well I’ve come about I’ve been diagnosed with CKD3 and I’d like some help on, you know, foods, of what to avoid and what to eat.” He didn’t have a clue, he didn’t have a clue. He was telling me to go and eat all the stuff that I’d seen on the website that you shouldn’t be eating, so I sat there in disarray thinking, ‘Well this is a waste of time, I might as well just go,’ and I didn’t have any luck on that. But if this new GP I found comfortable and I did talk about it and felt he was listening, because I’ve never felt that they’re actually listening , I would yeah, I would ask, Could I see a dietitian?, you know, although I know more about it myself now, but there still could be things I’m doing wrong. I’m not perfect at the diet, you know.

And do you ask your doctor or does he tell you about ways of keeping yourself healthy and well?

Well I don’t do anything that I don’t do anything that would, really entail needing to do that because I don’t think that I do anything that is derogatory to health.

Yeah

I try not to, put it that way, and so I wouldn’t have to ask the doctor about that.

But you did get told about keeping your fluid levels up. That was

Yes because I think that because down the road that if you drink plenty of liquids you’re flushing the kidneys all the time aren’t you, you’re keeping them clean.

And so it is everybody emphasises, most of the medical profession and even you’re told on things on the television that drinking liquids when you’re getting a hot day is essential, so we all understand that; if weve got any common sense we understand the fact that you should drink plenty of liquids anyway.

Every time you go and they say take drink plenty of fluids but [coughs]

And is that something that you make a conscious effort of doing?

Well no because I drink quite a lot tea anyway [laughs].

You think you’ll be alright with that?

I don’t drink cups of tea; I drink pints of it [laughs]. It’s, I suppose it stems from the fact that I did work for the in the tea industry for seven and a half years on a break from normal job.

But I think people are not told, are not told enough about their illness, enough to understand it, and how to maybe do something about it or to try to stop it getting worse if that, if you can. They’re just sort of given some pills and left to whatever really. Yes I would prefer it to be very different. And I think actually when I come to think about it would, it would save the NHS a lot of money if they helped people to understand their illnesses and try and do something to prevent it getting worse if they can. Whatever means that is, not just by taking medication, but by doing yoga or whatever. I mean yoga’s good because it can relax you and therefore your blood pressure will be lower and, you know, more exercise etc. etc.

So none of them have ever talked to you about your lifestyle and the things you might be able to do?

Actually my present GP has. And shes got me, I can get cheaper membership to one of the sports centres here, which I haven’t done because they’re actually doing it up at the moment and I’m waiting for them to finish, and then I’m going to, I think I get cheaper membership for so long. I think I get something like 12 weeks with a, with an actual person sort of training me or talking to me, so yes, no she has done something, and she does actually ask about my lifestyle. And I think various nurses have asked about my lifestyle, yes, at some of the surgeries, certainly when I’ve joined. I think that’s getting better, and I think that’s really important that you take urine tests off people and, you know, and blood tests just to check people, because that’s how my kidney disease was found, instead of me just going to failure, which is what happens to a lot of people.

So when they’ve asked you about your lifestyle have they ever suggested any changes to it?

No, no. It’s been me that’s said, Well should I reduce my salt? Should I drink less? I’ve actually had one GP say, Oh no, no, no just, you know, Don’t worry about your drinking. I think he must have been a drinker himself, because I think they should actually probably be saying to me, No you should reduce your drinking; it would be a good idea if you did. And the, yes, no, they’re not, they’re not talking about lifestyle, and I think, I’m really shocked about that actually; I’m really shocked that they don’t suggest that there might be things you could do that could help you not go to kidney failure, I think, or to change your diet in some way or, yes I think, I think it’s very, very important and would be so better for so many people.

You’ve picked up information about diet from the charity magazines that you get; is alcohol mentioned as a problem?

I don’t think so.

Because I think a lot of people make the assumption that it is but I’m not sure whether theres any official information that says it is.

I don’t know. I’m assuming that it might well be because it’s a toxin in my body that my kidneys have to get rid of. So yes, I have to assume, yes I think you’re right, I don’t think anywhere, anywhere has stated that alcohol could be a problem for kidneys and that you should limit your intake in any way. I’m sure they do if you go to dialysis, because if you can only drink, is it two litres of water? I can’t remember how much it is, it’s a very small amount of water really, or liquid, not just water, liquid, then they’re going to say, Don’t drink alcohol’, because you can’t, you need to have that liquid within your food that you’re eating.

As you mentioned earlier on, I’d like to know if there is anything I can help myself with you know? Saying about fluids and that, you know, I should drink more water really but there isn’t any taste to it is there? [laughs] you know, it’s pretty bland really, you know, I don’tno. I mean you get water in coffee I suppose but coffee isn’t, you know good all day apparently, I don’t know. But it’s better than not drinking anything really, yeah.

What about the explanation your kidneys are ten years older than you. Did you find that helpful?

Well it was mentioned at first that they are actually older; you know, they aren’t- they’re functioning as somebody older than you. So I thought hmm… well that’s not good you know.” But I suppose I found it helpful when he said they’re only ten years older you know. I thought, ‘Well I suppose it could be worse, they could be twenty years older, thirty years older,’ you know. But I’d like to know if they could be maintained at that, you know, I mean it could stay the same, or if I can help myself, like I do with the drink.

You know do something else to help. I don’t know if theres anything I could take. You know there might be some supplement that’s needed, I don’t know, but nothing’s been mentioned on that so, you know, that’sthose are the sorts of things I’d like to know I suppose, yeah.

Are there any questions in the area of lifestyle – I mean like, you know, it sounds like you are doing a lot of things yourself and you’re very educated through reading the- the papers and looking things up on the internet, but are there any particular things that you wonder about that you would like to know more about?

Not really, I don’t think. No, I don’t think so. I think I think the information is there if you want it. You can- you can glean information from multiple sources really not, the internet, your doctor, specialists, even nurses, you know, I guess you can get information from so I think I think the information is out there and I mean theres more information about these days than [laughs] well, theres too much of it really.

And what’s your understanding about the kinds of things that are likely to cause kidney problems?

[Sighs] I don’t really know. I think it’s the lifestyle to a degree could have something to do with it. But I mean I don’t know exactly what it would be- I mean I go out, I enjoy a beer. I was out last Saturday night. I had two, three, four pints even on a Saturday night. I drink a glass of wine with my meal occasionally and that’s about it! But I don’t over I don’t over indulge in alcohol but usually it’s the liver that’s the one they worry about with alcohol, so I- I don’t really know what causes the kidneys to pack up, other than, as I’ve already explained to you, I’ve got a history of taking all sorts of medication. Whether that, you know, can have an adverse effects, ultimately, on your kidneys, is a possibility and I don’t know enough about it.

To I’m not one to go and research it really. I just rather, I’d rather rely on the professionals. You only end up worrying if you, you can convince yourself you’ve got everything if you look too much into it really. I just get on with life.

And what kinds of things are the questions that you would like to ask about your kidney problem?

How far the problem is because, when they told me that stage three it doesn’t mean anything. It it’s just something I don’t understand. And as I said, unfortunately, they didn’t have time to talk to me about it. Obviously, theres been a stage one and a two. I don’t know what that was about?…It would have been nice probably to have been able to tackle the problem or at least understand it by being told as you get over the shock when you’ve got diabetes, they tell you about all the things that can happen to you regarding heart, legs, sight but please tell us about the kidneys. That would help [laughs].

I think in life you have to rely on the professional people that are trained and I don’t think it’s appropriate that we all become experts on every part of our body. I mean you can find out, if you’re really interested, theres plenty of information around, one can read or go on the internet or what. But I think I know enough about what kidneys are there for and what the liver is there for and so on without going into medical terms and knowing all the sort of finite details.

And is there anything relating to kidney checks that you feel that you don’t know as much about as you would like to?

Yeah I’d like to know what these readings are that I get and what they mean and what they mean to me.

About how my body is changing, how my kidneys are changing. Yeah I think I might like to know about that so I’m aware. I like statistics, I like numbers you know, I work in that area, I teach that area and for me, yes, and I know it’s about individuals and I’d like to maybe know how my kidney function is maybe decreasing over a period of time, so I can see it falling.

But at the same time I can understand why my GP wouldn’t necessarily tell me that because don’t panic people, don’t panic me unnecessarily because it’ll just give me something to really maybe worry about.

Mm and do you feel able to ask those questions do you think when you next go and see your GP you might have some questions?

Well I did ask her last time and she said it was nothing to worry about. “It’s nothing to worry about, it’s just, you know, it could be your age, could be drugs, it’s alright; were just monitoring it, that’s why you have your three monthly, your three monthly blood test, that’s why we do them to monitor them. Don’t panic nothing to worry about.” So

So would it be fair to say that you sense a certain reluctance on part of the GP?

I think she doesn’t want to panic me unnecessarily and, and it’s just something that’s she did sigh when I came in and said, “I’ve been called back.” She said, “[Sighs] oh doctor, he doesn’t know you at all and it’s like just panic, hes just panicking and there is nothing to panic about so.”

Is there anything relating to kidney checks or kidney disease that you feel you don’t know currently as much about as you would like to?

It’s very thinking about it now from what weve said, it’s probably a bit more on the function levels, to be honest. Whilst I’m saying yes, they say to me, “It’s at sixty percent,” which to me sounds bad but they’re saying, “Oh no, it’s normal” But how can it be normal if it’s only at sixty percent and not a hundred percent?

Maybe understanding that a little bit better.