Kidney health
Receiving and making sense of test results
Blood and urine samples are sent to a hospital pathology laboratory for measurements of kidney performance and other factors. Results are reported back to the doctor within a few days but the means by which the patient receives the results varies, which meant that some people we spoke to waited a week or two to get their results.
Many people said they usually phoned or visited the GP surgery to ask about their results but Kath and Joanne said it was easy to forget.
After having tests done at her GP surgery Anne waits about a week before phoning up to find out about the results.
After having tests done at her GP surgery Anne waits about a week before phoning up to find out about the results.
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It’s usual that I phone them. They’re coming through quicker now than they used to. But I, I usually wait about a week and then I phone up. But I know they’re normally available now within about three days and most of the time, I ask the receptionist and she says, “Yes, that’s fine.” Or, as happened last time, when they wanted me to come in and repeat one of the blood tests.
How do you feel about waiting three days?
That’s all right. I’m quite prepared to wait whatever is necessary.
Joanne usually phones up for her test results about 3 days afterwards but she sometimes forgets; however, she recognises that sending results by post instead could cause anxiety.
Joanne usually phones up for her test results about 3 days afterwards but she sometimes forgets; however, she recognises that sending results by post instead could cause anxiety.
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Do you ever forget phoning up for results?
Yeah I do. I do and I think about two weeks later, 'Ah results, ooh yes I had some blood results going' Normally I go past surgery, “Must phone them up”, and then I forget because I'm going to work or something and I get… you know, and then it's like nine o'clock I finish work and so, “I haven’t phoned yet“, and then I forget. So sometimes I do forget.
So what would you think it might be helpful to get them by post for example?
No, no because if you send things through the post and they are other than normal, people will just panic and you'll have people going, phoning the surgery and going to this poor receptionist going, "Oh I've got your results, I don’t a) I don’t understand them and b) what do they mean, c) ooh they're abnormal I need to see someone now," and I think you'd have panic going and people won't understand what things mean. So no, if you're going to start sending stats out to people – no people have got to be very, very educated about what they mean for that person as well.
Harry thinks while there is a danger that too much information might cause people to over-worry, it is useful to take an active interest in one’s check-ups to prevent loss of information and miscommunication.
Harry thinks while there is a danger that too much information might cause people to over-worry, it is useful to take an active interest in one’s check-ups to prevent loss of information and miscommunication.
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I think as we said earlier, a feedback from this periodic test would not be a bad thing. On the other hand, I think there’s a danger that, if you feed too much information to patients, they end up by thinking they’ve got every problem under the sun. Because… I’m quite clear in my own mind, that as you get older, things don’t function quite as well as they did when you were younger. And it would be quite easy to end up with a whole list of things which are going downhill and you could end up by focusing on this and you end up wondering whether you’ll survive another day. So, you know, I think you can have too much information but I don’t think it would be a bad idea just to send a brief synopsis of you know, the tests that are carried out back to the patient so that they have some idea that everything was okay.
[Laughs] okay. So generally, do you think that patients should be told about the tests that they’re having? So assuming that you’re being for your kidney function, you didn’t know that was one of the things.
Yes, I think.
That was being tested.
I think it would be interesting, well, not just interesting, but it’s it- it certainly helps the patient to realise that he-, whilst they may have some problems they haven’t got other problem, rather than just taking for granted that, “well, there’s nothing wrong”, you know. And, as I said earlier, any human being can make a mistake and a problem might be diagnosed and there is no communication.
I mean that’s, wouldn’t be the first time that’s happened [laughs].
Sarah thinks it’s a good idea for patients to keep copies of their medical notes and test results and thereby take responsibility for their own health.
Sarah thinks it’s a good idea for patients to keep copies of their medical notes and test results and thereby take responsibility for their own health.
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Donald has to wait a long time to get his test results in person at his next GP appointment because the practice won’t give them out over the phone. He would prefer to get them sooner.
Donald has to wait a long time to get his test results in person at his next GP appointment because the practice won’t give them out over the phone. He would prefer to get them sooner.
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No that's right.
That's a long wait isn't it?
It is yeah, yeah. I mean I can't even get a telephone appointment to give me the results, because some surgeries actually give you the results over the telephone, but this one doesn't seem to.
Really?
Yeah, they vary. Well I've been to different surgeries and some give the results over the phone within a few days, others you have to wait until…either a telephone appointment – which doesn't seem to happen – or you've got to wait to see a doctor face to face, which can be literally weeks ahead.
Mm. So what would you prefer to have then?
I'd like to know the results or I get access to the results over the phone ASAP, or go… just walk in there and sometimes there's someone there who can actually give you the result.
Yeah so you'd like to….
Which there was at my last surgery.
Right so you prefer to have the result more quickly?
Yeah, yeah. As long as I know what the results mean. I'm starting to know what the results… I know what the results on blood sugar level mean; I'm not actually au fait with the kidney one though.
Yeah, yeah.
Mm
So I mean you can see the value of having a face to face appointment for some reasons?
Yes that's right, yes.
Yeah, yeah.
But you might have to wait several weeks.
Yeah OK.
Or 2nd of December's the next time I get an appointment with my doctor, second of December.
It's not good because that's… where are we now… that's two or three weeks.
It's two weeks tomorrow, yeah.
Yeah another two weeks.
Russell says he doesn’t expect his doctor to tell him his test results if there is nothing to adjust; he takes it for granted that all is well.
Russell says he doesn’t expect his doctor to tell him his test results if there is nothing to adjust; he takes it for granted that all is well.
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Well I don’t need to ask because… if… he does… if he takes a check and he does a test and there is nothing… to, you know, adjust then he doesn’t have to tell me does he? So… I take it for granted that as long as he isn’t saying anything everything's going along nicely.
Ian is happy to leave it to the discretion of his GP as to when he would need to be informed about a decline in his kidney function.
Ian is happy to leave it to the discretion of his GP as to when he would need to be informed about a decline in his kidney function.
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I’m quite happy to leave it to the discretion of the doctor as to when he starts telling me that it should, that it’s getting any worse, if it is getting any worse. …You either put your faith in a doctor or the medical profession… and hope that they’ve got the answer. If they haven’t, we’re all wasting our time.
James works on the principle that no news is good news. He is not too concerned to know the details of what he is being tested for.
James works on the principle that no news is good news. He is not too concerned to know the details of what he is being tested for.
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And you can't really remember being given any results about values of your kidneys…
No, I mean I was never… I was never given any results one way or the other. If there was anything wrong they would probably tell me unless even this x-ray… I got an x-ray nearly… well it's over a week ago and they say, "Oh your doctor… he'll be able to tell your… you see the doctor a week to ten days." …I mean if there's something wrong they’ll tell you, that’s the way I look at it. If there's nothing wrong they're not going to tell you, you know what I mean? So I might go down the doctor next week when I go to see the nurse with my INR. I might say, "Did you get the results of my x-ray?" But I know there's nothing wrong with the thing you know what I mean?
People who had tests done in hospital were used to either learning the results straight away in person from a health professional or receiving results by letter afterwards. Flo said that having results in writing was a useful record that she could refer back to.
Mike and John wondered whether in future it might be possible for people to access all their test results over the internet. This is already possible for people having checks at hospital renal clinics that have registered with patientview.org. For instance, Simon was having check-ups at hospital as well as with his GP and explained that he could access his kidney function test results via that website.
Simon can’t remember the exact level of his kidney function but he can access a website where all his results are stored as a record for both him and his specialist.
Simon can’t remember the exact level of his kidney function but he can access a website where all his results are stored as a record for both him and his specialist.
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It’s better than it was. That’s all, all I can say for sure. The last time that I had the blood test taken was that it was good. They, there was some question about the blood sugar levels but then I think, you know, if you, if you look at the overall picture with me, then that may be an issue as well with somebody of my size but, at the same time, they’re better, yeah.
So do they actually tell you the numbers?
Yes.
The results, so…
Yes, they do.
…do you know off the top of your head?
No.
No. [laughs]
No.
And you.
But there is this website that you can go to called sorry.
Kidney patient view?
Renal patient view.
That’s right, and I have been on that and it’s got, you know, you can, I’ve got an identification number and you can look up all your recent results on there. So should somebody ask me, like you just did, if I’ve got the password I could go and find it for you.
So yeah, it’s good because it’s not just the property of the doctor, it’s mine. That’s very important. And I think that, you know, everything in in in medical health is a two way street, isn’t it? You have to, a doctor can only give advice or prescribe but, at the same time, it’s up to you to take tablets. You don’t have to take them. It’s up to you to take advice. If he says to you, you need to go on a diet or take more exercise, there again that’s up to you.
Jim is diabetic and has regular blood tests; although he realises that lots of different things are measured in his blood he is only told the blood sugar level.
Jim is diabetic and has regular blood tests; although he realises that lots of different things are measured in his blood he is only told the blood sugar level.
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Yeah, yeah.
They don’t volunteer them to you?
Well, if I haven’t gone in and asked, they probably would have said, “Can you come in and discuss your blood tests”, or something like that.
Okay but they’ve never given you any results for anything other than the blood sugar?
No. No.
No. So it’s possible that they’ve been measuring your kidney function for longer than you realise.
Yes because when they do this blood test there’s an awful lot of different things on it.
Right. You see on the form all these different boxes ticked.
Yeah but I don’t know what they mean.
Yeah. Okay.
They’ve all got different numbers down.
Yeah. Yeah. So it’s probably possible they’ve been testing your kidney function and just not telling you anything about it because there’s been no need to.
Yeah, occasionally, when they do a blood test, they do five or six different phials of blood, so obviously it’s going in for other things.
Right.
So, yeah, could be.
But you’ve never questioned what those other things are?
No, not really. I assume they know what they’re doing and leave them to it.
When David’s kidney function was first found to be impaired he was told it was ‘satisfactory but not good’; it has since improved and is now wavering between ‘satisfactory’ and ‘good’.
When David’s kidney function was first found to be impaired he was told it was ‘satisfactory but not good’; it has since improved and is now wavering between ‘satisfactory’ and ‘good’.
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Dr [name] rang me up – there'd been a directive come out to doctors about use of Diclofenac and she asked me to come down and see her which I did – that was possibly five years ago – and that was when she put me on omeprazole at the same time to counteract the effect of the diclofenac on my kidney, but it didn’t counteract the effect that it worked on my shoulder.
And did you have your kidneys checked at that time?
Yes [nodding]. And they were satisfactory but not… not good. And she's kept an eye on them ever since and it's wavering now between satisfactory and good – they have improved since I've been off the diclofenac.
Mm. And can you tell me a little bit more when you say they were satisfactory but not good – I'm really interested in exactly what you were told and how you were told.
[shakes head] That was all I was told, I had no other information – they were satisfactory at the time but it's now between satisfactory and good – I don’t know anything else as to… what the effects were but Dr [name] she doesn’t seem concerned now.
Joanne doesn’t know exactly what level her kidney function is at, and whenever she asks for her test results she is just told they are ‘satisfactory’.
Joanne doesn’t know exactly what level her kidney function is at, and whenever she asks for her test results she is just told they are ‘satisfactory’.
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Mm and if you think over the last few years because you’ve obviously had these check-ups for quite a long time now – how often does it happen that they say, "You might need to come back and talk to a doctor?"
Rare, very rare. I had one a few months ago and that was about my kidney when a different doctor had reviewed my results than my normal one. As I say, my normal doctor was obviously…knows how my…how things have gone down but very rare. Once I'd say and that’s it.
And in terms of the language that was used to describe your decreasing kidney function can you remember how the doctor explained what was going on?
They just said, "Oh your kidney function is, has just gone down a bit and it's quite normal, it's probably your age, your age group you're now into; or it could be drugs, could be a combination of them and there's really nothing to worry about at this stage, it's quite normal. We will just monitor what's going on and if there is any further decrease then we would look at it and maybe take some action."
So were there any values or numbers being used as part of describing was mentioned?
No I've got no idea what my kidney function is. I keep asking people and no-one's actually told me.
Martin’s GP had explained a bit about what the levels of kidney function mean and told him that his eGFR of 59 was nothing to worry about but that his kidneys were ‘about 10 years older than you’.
Martin’s GP had explained a bit about what the levels of kidney function mean and told him that his eGFR of 59 was nothing to worry about but that his kidneys were ‘about 10 years older than you’.
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So was just below the sixty, so it’s marginal. I’m on no medication for it whatsoever and I don’t seem to, I’m not particularly concerned about it at the moment.
He said that you- “they’re probably about ten years older than you”, but….
Was that helpful information?
Not really, no [laughs]. No, no, not… not really. Well, in a way, it was. I mean he was being honest, which is which is fine, you know. He’s that type of guy.
And what was your understanding of what that actually means?
Well, it, to me it means that I could have problems with my kidneys at some time in the future, if I live long enough.
Because they are ageing ahead of you.
Yeah, yeah, yeah.
David has a blood test every 3-4 months to test his kidney function and his GP phones afterwards and tells him the result is ‘satisfactory’. He is happy to be told no more than that.
David has a blood test every 3-4 months to test his kidney function and his GP phones afterwards and tells him the result is ‘satisfactory’. He is happy to be told no more than that.
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She'll ring up and say make an appointment for a blood test for it but I suppose maybe every three months, every four months and… the last lot there's been no cause for concern.
And again can you tell me a little bit about what happened with that type of blood test – do you go to the same place where you go for the warfarin?
Same place. I don’t know what the difference is, why they can't do the same test on the blood that they take for the warfarin – I don’t know.
Yet another needle for you to go through.
Yeah, yes. (smiles)
And with that do you also get a letter to tell you what the results are?
No, I get a phone call from the doctor.
And what does she say?
She just said, "Your test was satisfactory."
But not good.
But not good. So what's the diff- if it's satisfactory to me it's good.
Satisfactory is good enough to you?
Yeah. …If she said- if it's below par then I might worry but if it's satisfactory I feel there's nothing to worry about.
Would you like any more explanations about exactly what the values from your kidneys mean? …You know what is actually being measured when you have a blood test – is that something you're interested in or are you quite happy just to…
I'm quite happy to go along with the doctor analysing it and telling me how they're going.
So being told it's satisfactory is good enough for you?
Yeah, yeah.
Pat is frustrated by the lack of information about her test results and feels that her GPs are not interested in her; she has felt unable to ask questions in the past.
Pat is frustrated by the lack of information about her test results and feels that her GPs are not interested in her; she has felt unable to ask questions in the past.
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You don’t. That’s it.
You don’t get the results back?
No
Do you phone up to get told if there's a problem?
No, no. They only tell you if there is a problem… and that’s it.
So what kind of things did you get out having these blood tests month by month?
I don’t know.
Because I mean were there any positives for you in having them?
No, because nobody told me anything, they never mentioned it again. I think if I don’t ask… then they're not going to be- then that’s it.
Because you're like [sighs]… trouble is with now you're like, oh number twenty six [shakes her head], you're not going to get told anything unless it's… important, relevant to when you go in there that time. Nobody… there isn’t no… whereas there used to be… … somebody… well, when you're having investigations there's usually… you expect follow-up, don’t you? Well, you're not getting a follow-up. It's not what's happening.
So when you go and see the nurse for your blood test or when you did it last year, did they at least tell you what it was… the last time?
No, no.
Did you ask?
No.
Do you feel able to ask questions when you see the doctor or the nurse?
No, no. Not really
Right. It must be very, very unsatisfactory for you to have all these tests and not get any answers?
I’ve- that’s why- That’s why I think “why bother”.
Yeah, yeah
Right you’ve got your medication and now you do that…your medication – nobody asks about it, you just take your prescription in and get it refilled. …So there's no… in fact there's nothing. When I think about it now, like compared to how it was; now there's nothing. There's no follow-ups; …nobody's… they're not interested.
Last reviewed August 2017.
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