Kidney health

Sources of information

Verbal explanations from doctors and nurses were the main source of information about kidney impairment among the people we spoke to. But it was common for people to say they had been given only a brief explanation of their kidney impairment, alongside being told it was typical for someone of their age and nothing to worry about (see ‘The words doctors used to explain kidney impairment’). Some didn’t realise that their kidney performance was impaired or that it was being monitored. This reluctance of some doctors to give information about kidney impairment is probably because they wish to avoid alarming patients about a condition that is unlikely to cause them any problems (see ‘Why is kidney health important?’ and ‘How and why is kidney function monitored?’).

All Sarah had been told by her GP was that most older people have mild kidney impairment and not to worry about it.

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Age at interview: 77

Sex: Female

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So I went to casual surgery - because we have very good surgeries between 8 and 9 and anybody can go with an urgent problem - and the GP just said, ‘Oh you are older. Most people have this. Don’t worry about it. Let me reassure you it’s not unusual. I’ve probably got some too. Let me just tell you not to worry about it’. And so I went home reassured for 10 minutes and then I thought, ‘No I am not reassured’. So I wondered what to do. So I decided to get in touch with the two kidney charities, who were extremely helpful, talked to me for quite a long time about kidney disease, very supportive and they’ve sent me some literature and that’s where I found the advertisement about this research study. So that’s helped a great deal and I still don’t know a lot about, very much about kidney disease.

So have you been back to the GP since then and spoken to them?

Yes I have about my back problems and another GP and they just suggested that it wasn’t unusual for somebody older to be in Stage 3 kidney disease. So I am still a bit concerned and feel that I should investigate quite a lot more.

Among those who had been told details of their kidney performance – either the stage of chronic kidney disease (CKD) (a number from one to five where five is worse kidney performance) or the estimated glomerular filtration rate (eGFR) (a number ranging from 1 to 90 or more where a higher figure means better kidney performance) – some said they didn’t really understand what it meant. A few had been given a graph showing changes in their eGFR over time, which they found more understandable than being told a single figure at one point in time. See ‘How and why is kidney function monitored?’ for a more detailed explanation of CKD stages and the eGFR.

A GP told Kath her kidney performance was around 40 and it would have to drop to 30 before they would test her more regularly, and to 10 before dialysis became necessary, but Kath didn’t understand the numbers.

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Age at interview: 72

Sex: Female

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So the information you were given about its stage three and it’s not the worst stage, where did that come from? Who told you about all those things?

The, my local doctor here.

When you came to register.

Because I because I asked, yes, I said, you know, I said, “Well, how bad is it? I mean should I be worrying about this now?” And she said, “No.” “No.” She said, “But you’d have to get down.” I’m pretty sure she said it would have to get down to thirty.

But I don’t really know what the numbers mean. I know she said they ought to be sixty something and mine was fortyish. But it, until it got down to thirty, they wouldn’t test me on a regular basis. They said it wasn’t necessary but, so I said, “Well, how low does it have to get before you get onto dialysis?” And he said she said, “Only, oh, about ten, you know.”

But you don’t know what the numbers stand for?

I don’t know what they mean.

Jackie has a new GP who has explained much more about her kidney impairment than any of her previous doctors; this has motivated her to do everything she can to keep healthy.

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Age at interview: 59

Sex: Female

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The GP I currently have, who isn’t the GP I saw when I first moved here, has explained more to me, I think, than any other GP. I now understand what the readings mean and what my actual kidney function is. It wasn’t something, in fact it was only - I’m trying to think – a couple of years ago that I really understood exactly what was being monitored, so, and I was, I was aware of that but then as I say, my current GP has explained a lot more to me, so I do understand that. And it puts it more, I guess from my point of view, it’s made me realise that, I think I do kind of look after myself, but it’s made me realise more the importance of really making sure I do all the right things to maintain the level of function that I’ve got, you know. As my GP said, you know, if I had the level of kidney function I’ve got if I was 89 it would be fine but given that I’m not 89 it’s not so good [laughs]. But as I say, at the moment, it doesn’t affect my life in in any way. So I want that to continue for as long as possible.

When inviting Flo to take part in this interview, her GP showed her a graph of her kidney performance that she had not seen before. It was reassuring to see how it had stabilised.

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Age at interview: 70

Sex: Female

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Well I was sat with the doctor talking and he'd gone through and shown me on his computer, had gone through my files and he had shown me all the different graphs and for the first time I was truly shocked at the readings that they'd got from my kidneys working. And he sat there and he just went through it.

And I had a better understanding … and also a better understanding of him, and just as I was going he said, "I've explained to you," he said, "would you do me a favour and take part in this?" And I thought, 'Well if he can take the time to do that and put my mind at rest, then I can take the time, if I can, to put somebody else's mind at rest.'

That’s really kind. So when he was showing you stuff on the computer what was it you were looking at then? Was it the different…?

All the different graphs that the renal place had sent to him.

Yes

To the surgery.

So that wasn’t something you had a copy of before?

No because it was taken over a long period of time.

Hm mm

And the graph was… it was going up and down and it-…to be truthful you can sort of work out now… that’s when they said, "We'll just- we’ll just check that." And then another time when, in the letters, the consultant said, and I had the bloods re-tested. And then… you can relate the two and you understand better what they’ve said in the letter.

Right OK so you were basically looking at a curve?

It was… well it was yeh, yeh

Was it fluctuating quite a lot?

Yeh, yeh

Yeh

And then when he went onto to the next page… and you could see it was starting to level off.

And that’s where you could see it had stabilised?

You see, now nobody had shown me that; now they won't show you at the hospital because they're not doing it. And the old GP, I don’t suppose he'd even bother to look at it.

Mm so that was really reassuring to you to actually see that development over time?

Yeh

Although there are leaflets about early stage chronic kidney disease written for patients (see resources section) it was rare for the people we spoke to have been given one, whereas they were used to being given leaflets about other medical conditions or picking them up in their doctor’s surgery. A few recalled being given a leaflet when they were first referred to a kidney specialist. Bill had been sent one by his GP with the invitation to take part in this interview.

Tina was given leaflets at the hospital kidney clinic but didn’t understand all the language used; she prefers face-to-face explanations.

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Age at interview: 54

Sex: Female

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I believe when I went to the kidney unit I was given leaflets. I was, because I remember coming home and looking at them and not being sure I understood properly. I mean you can look at a leaflet and they can come up with all this medical jargon, but really you need somebody sat there actually saying, “Well, this is what this technically means.”

If you’re not familiar with that, and I certainly wasn’t, when I was nursing I wasn’t… you know, familiar with kidney problems. The terms and that, I think all these leaflets are all very well but what you really need is somebody telling you face-to-face. And that’s if they’re ready to hear it face-to-face. A lot of people aren’t. It it’s, you know, I don’t think I’m on my own there, you know, I know other people with health problems and they’re, “Oh Christ, here we go again.” But if you’re going to, if you’re the kind of person that wants that knowledge and maybe you’re lucky enough that you’re only suffering from one condition, well, go for it. But I think there always seems to be other problems, with not just myself, but other people, you know, with conditions, and what people, healthy people must be thinking, ‘How can’t you want to know what’s going on with your body?’ And I think, ‘Put yourself in my shoes. If you had all what we’ve got, you would want a little bit to be a little, stay out of the way a bit.’

People recalled various specific bits of information about kidney disease they had learned from a health professional. Laura’s GP had told her seventeen years ago that there was a one-in-three chance of her kidneys failing within ten years and had put her in touch with one of the kidney charities. Lesley and Simon had been told by a GP that their kidney impairment had been caused by long-term use of a prescription drug (see ‘Awareness of kidney disease and beliefs about possible causes’). Jackie has had kidney disease since childhood and was warned by her GP that it could lead to a problem with her bones. Tony’s kidney specialist drew a diagram to show how a vessel connected to one of his kidneys had narrowed.

Flo was worried after learning from her GP that her kidneys were leaking protein into her urine. But she felt reassured after a nurse that she saw regularly explained what this meant.

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Age at interview: 70

Sex: Female

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And until I saw the renal specialist, to be honest, the only person to give me any information… because I go so often for the warfarin blood test you get friendly with the nurses… and I am not a quiet person. …And I went in for a blood test and the nurse said, "What's wrong with you, you're quiet?" And I said, "I've got… leaking kidneys and I don’t know what's going to be," you know. So she said, "Well that’s alright. Got a minute, I'll go through it with you." She actually told me more than the doctor.

Oh

And she also, she put me right in as much as to say, "They’ll do the test, they’ll find out what's wrong, they’ll do the tests and then they’ll treat it. So don’t worry because until we know it's something that’s dangerous or, you know, sort of serious, it's not."

Right so let me take me back. So you saw your GP, you got quite worried; you then saw the nurse who asked you why you were quiet and you said you got better information from her. What can you remember what kinds of things she told you?

She took my blood samples and she got rid of everything that we had to do, like you know the blood pressure and all the rest of it, and then she said, "Right now you have two kidneys… And think of sponges; and fluid goes in at the top and it's filtered; and the kidneys, that’s what the kidneys do. And as a rule all protein they take out before it goes into the urinary tract or whatever; and at the moment you’ve got…" she said, "it might be both it might just be the one that isn’t quite filtering as it should. And there's plenty of reasons why it happens and there's plenty of drugs that they can give you to stop it happening. And you're not on your own because there's plenty of people in your boat anyway, [laughs] so don’t worry about it."

And I said, "And what happens if?" She said, "Well if that does happen I'll be the first one and I'll be with you and I'll tell you."

Mm. If what happens sorry?

Well I said what if the worst happens if, you know, it's all very well saying, "We can give you medication, don’t fret," but then you think there comes a time when they're not going to be able to give you medication.

Mm but so did you feel slightly more reassured after talking to the nurse?

Yes.

Lifestyle had often been mentioned by a doctor or nurse, and several people, particularly those who had diabetes, said they had been given information about recommended dietary changes. People may be referred to a dietitian for more detailed advice but Lesley found the dietitian’s advice contradicted what she had found on the internet for people with kidney disease. A pharmacist had given Xanthe dietary information tailored for people with kidney problems.

Not everyone wanted much information about their kidney impairment and preferred to trust the professional’s judgement of what they needed to know. A few said they would ask for more if they felt a need. Robert said he didn’t want to take up the doctor’s time. Jill, aged 77, said that she would probably want more information if she was younger. Harry and Pat felt that too much information could be damaging.

Harry believes that looking up health information can sometimes result in unnecessary anxiety; he prefers to talk to a doctor about health problems.

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Age at interview: 78

Sex: Male

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Have you ever looked for additional information about health from other sources or like using the internet or using books or something?

Harry: No and I’m a bit anti I know too many people who spend all their time trying to diagnose their own problems. They end up with totally the wrong information because they’re not …I could mention names in this but I won’t [laughs].

Nell: You’re thinking of your sister, [sister’s name], who was told by the doctor she.

Harry: I have a I have a sister who spends all her time.

Nell: Needed a hip replacement.

Harry: And she’s had every illness, every condition under the sun because she spends far too much time looking at the internet. So no, I don’t think, I think it’s much better to go and talk to the doctor than to worry about trying to diagnose it yourself.

Information from books, the internet or the kidney charities could all be useful. Sarah learned from one of the charities that people with kidney problems should avoid using non-steroidal anti-inflammatory medicines, such as ibuprofen, for long term pain relief. Xanthe was sent a booklet of exercises from one of the kidney charities.

Xanthe had phoned the National Kidney Federation several times with questions about her kidney health and received their quarterly magazine.

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Xanthe had phoned the National Kidney Federation several times with questions about her kidney health and received their quarterly magazine.

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Age at interview: 72

Sex: Female

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You said that you are keen to find out more about kidney health. What have you done to try and find information?

Oh well The Kidney Life magazine has been my first thing.

And I wouldn’t, well I do ring up and talk to them if there is something that I want to know; something crops up in the magazine; there’s something I want to know about myself. I wouldn’t hesitate to ring.

So when did you join that organisation?

Last year.

After you were first told.

Yes, yes.

Yeah

I mean if I want information I go after it ferociously until I get what I want.

Remind me which organisation brings out Kidney Life? Is it the British Kidney Patient Association or is it the other one? Doesn’t matter if you can’t remember. It’s one of those two.

Might have had one laid here but there isn’t.

I can never remember myself which one it is because there are several different kidney organisations, charities aren’t there?

Yes there are.

Have you tried them all?

No I haven’t yet. Yeah.

So are the people helpful on the other end of the phone when you call?

Oh extremely. Yes quite wonderful really.

And have you found out answers to your questions?

Yes I have. Don’t ask me what the questions were now because I can’t remember. But they seemed burning issues at the time.

Yeah and you got a satisfactory answer.

Yeah certainly.

Laura had obtained information about kidney disease from books and a magazine produced by one of the kidney charities.

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Age at interview: 60

Sex: Female

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I got some books in the beginning. I think they were from the library. Unfortunately I didn’t record the names of them because there’s one I would have like to have re-read. Luckily I was contacted by the, I think it’s the Kidney Federation, and they send a magazine every so many months, which is full of very good information. They’re full of information; you can contact them and ask them, ask them about things, and they produced a book, I think it’s ‘Kidney, kidney disease explained’, or something, which is very helpful. And I think the magazines have been very useful in telling me what it’s like for different people, and the different medicines that are used, the different types of kidney disease there are, and all that sort of thing.

Nowadays, most people use the internet to look for information on a wide range of topics including health issues. Some people we spoke to had used the internet to look up information about kidney impairment, while others had used it for other medical conditions but not so far for their kidney health. Peter had looked up information about the medicines he was taking and how other people experienced the side effects; Martin had looked for information about atrial fibrillation. Joanne had searched for information on kidney disease and had found nothing that caused her to worry about her condition. Mike learned that high blood pressure could be linked with kidney impairment and that it was possible to live normally with the equivalent of only one kidney. Lesley had looked for symptoms of kidney disease and dietary guidance; she also found a private kidney specialist. Justine had looked up information about what having a kidney biopsy involved before having one herself.

The quality of online information was a concern, and some people recommended only visiting reputable websites, such as NHS Choices or Patient.co.uk, in order to obtain reliable information. People could sometimes regret looking online if they found information they had not wanted or which disturbed them.

John only uses reputable websites to look up health information. He was reassured by the information he found about kidney impairment.

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Age at interview: 75

Sex: Male

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No… I looked up the NHS site on the on the internet and it said that most people have, you know, when they get to my age, have got some problems with their kidneys.

Did you find that information helpful?

Yes, I did. Yeah, yeah. It’s a good site, the NHS.

That was NHS Direct was it?

Yeah.

Or?

Yeah. No, no, I didn’t, on the internet.

They’ve got, you can just any illness or condition you can find on there. I thought it was quite good. And I also looked on the Mayo Clinic, the American site as well. I mean I- I’m a great believer in the internet but I think you’ve got to be very careful what…what credence you give it. …And so I’ll only go on a well-known reputable site like the NHS or the Mayo.

And can you remember the kinds of things you wanted to know and that you learned from the website?

I can’t because it’s, it didn’t it didn’t worry me that much, to be honest with you, and I thought I’d just check and it didn’t, it just said that most people got it and you know? it’s so it’s so… it’s life.

When James had blood in his urine he was alarmed to learn on the internet that it could indicate a serious condition; after investigations his problem was found to be associated with prostate rather than kidney disease.

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Age at interview: 71

Sex: Male

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Do you ever try to get information about your health from other sources than from the health professionals directly?

Don’t think so no.

You don’t look up things on the internet or books?

Well yes, I've looked on internet when I had all this passing blood. In fact I went religiously through all the different sites about …and it's more worrying I think when you start looking at it all because they’re saying the slightest sign of blood “see your doctor or your hospital”. I mean I was passing gallons of blood! and day after day and every time I went to the toilet, every time I went to pass…to the toilet I was passing blood. And it's, "Oh yes we'll see that and then give you antibiotics and “oh yeah we'll see you in three weeks' time for…" And this was supposed to be such a serious thing – they keep telling you how serious it is if you see any blood in your urine, [laughs] you know, “see your doctor immediately”.

Do you remember which sites you looked up on the web?

No – lots of them – lots and lots of them. No and I would pass from one to the other and …. no I wouldn’t know which site. I would just Google “blood in urine”, “male”; “blood in urine” and then just pass that… and then you click on each one and it tries one and I'd go each one and you'll get further and further into it you know. I went into for the prostate ones… I did do it for that as well. Never did it for my cataracts – I didn’t want to know really what they did with your cataracts because I'm a bit uncomfortable…[pulls a face].

And for the blood in the urine did you find anything that was helpful to you?

Well helpful it's… I don’t really know if I could say it was helpful you know; more disturbing than anything else you know because they were making out it was… could be very serious and… I don’t think I should have gone… I was kind of reluctant after… I was kind of sorry I'd gone onto the sites I think you know what I mean because they were telling me things I really didn’t want to know.

They were saying how very important it is to get seen to, and I was seen to but they weren’t doing anything you know so. So to that extent I was a bit disappointed you know but…

Many people we spoke to who had not sought out information for themselves had questions about their kidney condition that they wanted answering (see ‘People’s ongoing information and support needs’).

For factual information sources about early kidney impairment see the ‘Resources and Information’ page

Last reviewed August 2017.