Do you think that’s right, that you didn’t know about it?

Well, I think you’ve got to help yourself as well in this world – that’s the way I feel and I’ve certainly got in mind to go back to my doctor very soon now and say, “Well you know perhaps you can tell me more about this and what about lifestyle and that sort of thing you know.

Yeah.

Yeah.

Because I would bet that they were looking at it before.

Yeah, yeah.

So I just wonder what you think about whether they should have told you earlier or not? Or at what stage do you think it’s right to be told?

Yeah I think certainly it’s right to be told if they diagnose a kidney problem. I think you should be told at the earliest possible time. On the other hand, of course, I didn’t know about it so I didn’t worry about it [laughs]. And I’m not that worried about it now to be honest.

Yeah, yeah. I wouldn’t, I wouldn’t have been annoyed to learn at a later stage when things were getting desperate that I hadn’t been told; I don’t think it would have bothered me, quite frankly. And of course I’d have beenand it may well be that in the past, they’ve known I’ve had a problem with the kidneys and they haven’t told me, you know, because it’s not really been a problem. But and I certainly don’t object to that, you know, and I think in a way I wouldn’t object to it if it got to the latter stages of, you know, chronic kidney disease, not knowing it wouldn’t bother me.

I mean, the fact that they’ve told me it doesn’t bother me now. But, you know, if I’d have gone through life without knowing about it then, that might have been a good thing anyway, yeah.

Well ignorance is bliss, they say [laughs]. And I’m not against that to be honest, in many ways. If it’s something that is not going to impact very much on ones life and if theres nothing that can really be done to cure it, to turn the clock back then I think it’s not a bad idea to withhold that information until such times they think, ‘No this is really, you know, progressing too far now and we need to tell that person. That’s my own view, yeah.

Now historically GPs sometimes didn’t even communicate to patients that there was any reduction in their kidney function and I think the reason for that was because they felt, well were not going to do anything different for this patient; were still going to treat their blood pressure, were still going to give them advice say on cardiovascular prevention. So why give the patient that additional information about their kidneys when theres, in a sense, nothing to be done about it. And when I think in the minds of many of us GPs, we thought, ‘Well you know this is just another risk factor and not one that we would directly try and treat. Now things have moved on a bit I mean in various ways and one way is that I think GPs just have to be more transparent about what they’re doing. And therefore I think patients can now expect that GPs will signal to them that theres some problem about their kidney function but put into the context of really how much risk that involves and whether indeed it needs any treatment at all or whether it can simply be monitored over the years.

And so could you imagine some circumstances where maybe telling a patient that their kidney function is impaired might not be in the patient’s best interest?

The short answer to whether it’s ever in the patient’s best interest not to tell them that their kidney function is impaired is no. I think that the issue here is complicated by the fact that if your blood test shows that your kidney function is a bit impaired but you’re not leaking any protein, that actually you shouldn’t have the label of CKD chronic kidney disease and the new NICE guidelines is very clear about that. So one could argue that, for those patients who, in a sense, get the all clear because they’re retaining the protein fine in their kidneys but their blood test shows a slight lowering of function, that that doesn’t need to be communicated, and that’s debateable I think because in an era where patients are encouraged to have access to all their tests and to their records it would raise a concern if the GP didn’t actually explain that. And I think this all part of the sort of strategy of being transparent and giving appropriate information. Where the information needs to be more detailed is where theres definite evidence of CKD, where there is protein loss and the blood test shows a reduction of function. And then I think, you know, one needs to give quite a lot of detail.

I can’t imagine why someone would be a doctor if they can’t tell their patient what’s wrong with them. You know, surely it’s part of the thing, that you discover something about somebody, you tell them what it is. It’s unforgiveable really to think that a doctor would know and not tell you. Well I have heard in the past of people not being told when they’ve got serious things, but I think it’s a very bad thing if it happens.

The thing is I think it’s not as black and white as that, because it’s not a serious thing, this is the point, it’s a relatively, I can’t think of the right word, but it’s not usually serious and so for that reason they don’t like to worry people about

But then if they don’t want to worry people really do they know that patient all that well? If they think by telling them something will worry them surely they don’t know the patient.

If they don’t this is a problem of seeing too many GPs in a surgery; they don’t know you. So I can understand if a GP doesn’t know how somebody’s going to react to being told something, that they wouldn’t tell them, but I still think it’s wrong. They should be able to extract enough information from a patient’s notes to know a bit of the psyche of that person and how they’re going to react to something like that.

So is it a good thing or a bad thing that you know that your kidneys are not working properly? Because I mean the doctors just could have told you that you have high blood pressure, end of story.

Ah for me it’s a very good thing; I’m very glad that they told me because then I could, I’ve done various things because I knew it was my kidneys. For instance the therapy and working on fear, which is related to kidneys, yes, and I wouldn’t have done that if I hadn’t have known. Yes I think it’s very important that they told me.

Do you think you should have been told earlier that you had a problem with your kidney because you only found out quite a long time after it developed by the sounds of it?

Well no, I suppose looking back at my experience I suppose if they had told me when I was quite young I suppose that you had a kidney problem, it might have, I suppose concerned me or worried me unnecessarily. So looking- looking back I’m very glad I didn’t realise that I had a kidney problem. I suppose the very fact that I didn’t know I had a kidney problem it helped me I suppose, but I just carried on doing what I wanted to do.

Which is what most people would like to do, so I suppose I’m glad I didn’t know I had a kidney problem.

Do you think that people should be told if they have a mildly decreased kidney function? Or is that something is it right to only tell them once they start to develop more symptoms?

Yeah, I think the second thing you said was the better one because some people if you told them they had a slightly decreased function in their kidneys they would worry about it and that would make them upset about a lot of things wouldn’t it? About their mortality and what’s going to happen and are they going to lose a kidney and if they don’t know that they can’t react like that, can they?

So you think there are good reasons why maybe GPs carry out these tests without telling people what they are doing?

Yeah, I think maybe when someone like me who before I had my heart attack I hadn’t seen a GP for oh I don’t know, twenty years I think when you something like what I had happen, afterwards they could tell you were going to give you regular blood tests and this is what we test you for.

We test you for liver function; maybe they do did I say liver function yeah? Maybe they do, maybe they don’t or kidney function; they can test your blood sugars, they can test your iron levels, blah di blah di blah; they should tell you the once when you start your programme, so at least you know what they’re testing for.

And at what point would you expect your doctor to tell you that you have a- a decrease in your kidney function? When do you think it would be important for you to know about it?

Whenever he thinks is possible. He might not want to scare me. Because some doctors have got to take patients as they find them. And by telling certain patients certain things, it might make them become more ill.

Yeah.

You see. You’ve got to have the confidence of the patient in the beginning, then you can tell him anything and you feel able to tell him certain things or withhold certain things from that particular patient. And the doctor has got to be sensible enough to know who hes dealing with.

So you think that’s part of what a doctor needs to decide, is how much to tell each individual patient?

Yes, I think that is it, yes. He should learn – should know his patient so hes ready to tell him everything.

Might be difficult though if you see different doctors all the time.

Yeah but if you’re seeing different doctors, they just look at your history, isn’t it? [laughs]. And each doctor has got their own interpretation of each patient they’re seeing. But it you’ve got a regular man like I have and we can sit and have a talk like you and I talk now.

Yes.

You’ll be able to ask him anything, and he knows in me, hell be able to tell me anything he feel – that would be beneficial to me. And that would satisfy me.

Yeah.

You see. So I think the doctor himself, he has to be capable of that and wise enough to know to whom hes telling these stories to.

What was your understanding of the term chronic kidney disease at the time?

Well, I know that chronic means a long standing, you know. It’s opposite to acute. But he was quite reassuring, in a way, by telling me that there was no immediate. problem.

What weve found to find in this study is a lot of GPs do not tell their patients. They don’t use that term because they think that it might be.

Oh I see, I see where…

Yes.

I can see where you’re coming from.

So I am wondering, having been one of the people who has been told this, do you think it’s a good idea for GPs to use that term with patients?

Yeah. Yeah, I do. Yeah, I wish, yeah, I wish they would be more direct and say, this is- this is your problem. We can help you or we can’t help youand so you’re in, you know, you’re in no doubt. Where people fudge around and try not to hurt you, I don’t believe in that.

I guess GPs reasoning is that they might not want, they feel they might not need to tell people something that is not going to cause problems for them anyway, as long as they can keep an eye on them.

Yeah, I understand that and the GP hes got to use his judgement and say, well, this man or this woman can take it and that man or woman it’d be perhaps better if we didn’t tell her or if I tell this person, hes going to be one of the worried well, that’s going to be down there all the time, you know, and theres no need for them to keep turning up taking up my time, which I could use, you know, to a better effect. Yeah, I understand that, but they should be able to judge, It should be, I mean they’re intelligent people to be GPs so they must know, they should be able to judge people to see what they could actually, what form they could take it in.

So you would advocate a sort of flexible approach to how much information is given to the patient

Yeah, yeah. Yes.

On an individual basis.

But as a person, I would I would rather that they said, well, this is what you’ve got.

That’s what she actually said, the, when she first came in, Theres a study going on: CKD. Didn’t mean anything. I didn’t know that.

So CKD stands for chronic kidney disease.

Yes.

Theres been guidelines since two thousand and eight for GPs to code people whose kidney function is decreased to a certain level under that heading.

Ah!

But, obviously, it sounds like you have actually been coded quite a while back.

Normal.

And.

Yes, but I’ve, word of mouth. When I’ve asked, you know, I’ve always been told no kidney problems. So, when I did ask and one thing I did ask, when I was in and the two nurses told me, was Can you tell me when it was diagnosed then?

1997. That’s seventeen years ago! I hadn’t a clue.

How can you fix something if you can’t, you know, you need to know, knowledge is- is power really isn’t it?

What messages would you give to other people who are having their kidney function monitored?

Ask questions. Don’t do as I do, just take it for granted that everything is all right and be told everything is all right because that’s my main thing now, this I was told by the doctors and the nurses, the kidneys were all right. Until you came along and wanted somebody to come and talk to you, I wouldn’t have had a clue, not even now. I’ve always asked is everything all right? And I’ve always been told, yes.

I guess theres a sort of maybe two different ways of looking at alright.

Yeah.

So alright might mean there isn’t a current problem.

Knowing-

But it doesn’t mean they are a hundred per cent. So

Yeah. But knowing my daughter came with me to the last tests I had done and she asked the question, which come out of the blue because I didn’t even think of it, and the doctor, which I saw, no problem.

What made her ask the question?

She read up on things that can go wrong with diabetes.

So she knew that kidneys were one of the things that might be

Yeah. Yeah. So she did actually voice it and I didn’t know she was going to do that either but we did get a definite, nothing wrong, perfectly normal. Perfectly normal, that is the words he used.

So normal for what? [laughs].

Right. What messages would you give to health professionals looking after people like yourself, with a decrease in kidney function?

Please try and listen as well as talk. Probably the wrong things to say but a lot of the time theres no eye contact, theres no no visible taking notice or conversing in a way. They’re either writing, when they’re talking to you or doing prescriptions or something. Just give you the honour to look at you and speak.

Try and tell the person if theres something that isn’t quite right or let the person ask a question. That would satisfy a lot of people.

It is fair to say that at one point I did have one interview with one doctor who I was never able to follow what he was saying to me very clearly. And he insists that I was told, this would be about 2010, 2009, 2010, he insists that I was told that I had CKD. And he insisted that he told me what CKD was at that interview. Now as I’ve already mentioned, I was focused all the time on my blood pressure and my, blood in the urine. And so whenever I had meetings with doctors that is what I wanted to talk and what I took away from the interview. So he says that he told me all about CKD and he told me that I was on, I think level 4 by that time. But I came away from the interview certainly not knowing that I had CKD and still thinking I had a damaged kidney but also not knowing that my damaged kidney was a concern. So either I wasn’t listening to him or he didn’t, didn’t actually say what he claims he did say. And I’m pretty good at listening to people.

So we then go through to 2011, I still have no idea that I’ve got CKD. I don’t even really know what CKD is. I know I’ve got a damaged kidney but since no one whenever I’ve been to the doctor has ever talked about a damaged kidney, all weve been focusing on actually by then was my prostate, which I’d had quite a lot of work on. I’d also one time talked about in-growing toenails and various things that I’d been to the doctor about and they never brought up your kidney.

So then I’d had that interview with the doctor who was unsympathetic to me and claims that I was told that I had CKD. But then other times I would see other members of the practice and that actually I thought was very unfortunate in my case. I needed to have the personal attention of a particular doctor who knew my condition and that is what I didn’t get. So what I had was a new doctor each time, who would rely on my records. So this new doctor that I saw in 2011 referred to my records, said, No, theres no indication of kidney disease. It, it is your prostate we must get some tests. And then I can’t remember exactly the sequences, this again, my wife would remember exactly the sequence.

But anyway the end result was he took some blood tests, got the results back from the blood tests and then phoned me very urgently and said, you must come down straightaway, your, I think my potassium levels are sky high and I’m really worried, you know you must, well he didn’t say that but I’m really worried, you know he still didn’t tell me I had CKD. And so I think I was in a, I think I got referred to the renal unit. That’s right I got referred to the renal unit. And I went in finally to see a consultant or very quickly to see a consultant. And he said, You’re, you’re CKD stage 5. And I didn’t know what that was. And he then explained what CKD was. And I said, Well what you know what, what treatment’s involved? And he said, Well there are three options, you can have palliative care or you can go on dialysis, or you can have a transplant. And I was thinking well I don’t, certainly don’t, I don’t want all these medical interventions.