A-Z

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.

Age at interview: 71
Sex: Female
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So tell me a bit more about getting the results of all your tests? I think, do you have to ring up and get them or do they call you or - what happens?

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.

Age at interview: 50
Sex: Female
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I have to have my blood tests done in the mornings. This is one of my early morning starts I have to have because my lithium has to be taken twelve hours after I've taken it. So it's quite time constrained to… so I have them done in the morning and then they get sent off that morning and I normally phone up about two to three, normally about three days later

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.
 
Jackie said she preferred to phone up rather than wait for the general practice to act because she had experience of mix-ups in the past where messages about test results had been given to the wrong patient. Some people who had been seen by secondary care specialists also thought it was helpful to keep copies of communication between GPs and consultants to make sure information did not get lost in transit. Sarah and Laura said they ask for a printed copy of their test results.
 

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.

Age at interview: 78
Sex: Male
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So what are your views on… the information GPs should give to patients like yourself? I mean….

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.

Age at interview: 77
Sex: Female
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Because it was when I went to ask for the referral letter for my back, or was it my foot? And I said could I have, ‘Could you please print off all my last blood test reports and the referral letter and any recent things?’ So they printed that off for me. I don’t know if they can refuse, can they? Because usually when I ask, they print things off. Sometimes the receptionist disappears and I’m never sure if she goes to see the duty doctor. But that would be quite an interesting thing to know, because I think everybody should have their own… all their results. And I think in America they did a study about patients having all their notes, and they actually, people looked after their notes better than they do in hospital, because a number of times they couldn’t find my husband’s notes and he’d been admitted two or three weeks before, and I went round A&E and the wards trying to find his notes, and once or twice I’ve actually found them. So I’m quite keen that people should maybe have their notes. So that’s I think important, because people do look after them. And then people can look after their own health as well as the Government are apparently telling us we should do.
David, Gerald and Xanthe said their doctor would phone them to tell them the results. Others would wait for their next appointment at the GP surgery to get their results - if the appointment was not too far ahead - or they would make an appointment specifically to get the test results. Donald said he had to do this because his practice would not give results out over the phone. Bernard learned his most recent test results during a home visit from his GP.
 

Xanthe feels she is lucky with the service she gets from her local GP surgery because they are likely to phone her whether the test results are normal or abnormal.

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Xanthe feels she is lucky with the service she gets from her local GP surgery because they are likely to phone her whether the test results are normal or abnormal.

Age at interview: 72
Sex: Female
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I have asked you how you get your results but do you have to wait ages to get them, or do you get them next day or what happens?

Well perhaps not next day, within three or four days. We’ve got a fairly quick turnaround here.

And do you have to ring up or how…?

It varies. Sometimes they will take you by surprise and ring, ring me.

But we’re very lucky.

Will they ring you if they are perfectly normal, normal for you?

Yes they might.

Because some people say they only ring if there is a problem that needs dealing with.

Yes. Oh I’ve had messages that have said, ‘You’ll be pleased to know…’. So they can ring either way. So I’m, I’m very lucky.
 
 

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.

Age at interview: 60
Sex: Male
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So I think you said to me your most recent blood test was a couple of weeks ago and you're not getting the results until the 2nd of December.

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.
 
Many people we spoke to said that they rarely or never found out the results of routine tests done by their GP but assumed that if they heard nothing it meant that there had been no significant change in the measurements over time and that no action was needed. It was commonly recognised that general practices were extremely busy and that phoning everybody who had satisfactory test results would add unnecessarily to their workload. While a few people said they would prefer to be told their results, most trusted that their doctor would contact them if there was a problem that needed to be dealt with. The following comment from Elizabeth was typical: “I think no news is good news sometimes, don’t you, because I think if there was anything wrong they’d soon get in touch”. Some thought that taking too much of an interest in one’s health could in itself become a source of ill health. Margaret, aged 72, said she belonged to a generation that assumed doctors knew what they were doing and had learned not ask too many questions of people in authority.
 

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.

Age at interview: 84
Sex: Male
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So and I've already asked you, you don’t get actually any detailed feedback on the results of your tests like your kidney function, your cholesterol, your blood pressure, you don’t talk about the exact values that your tests are showing?

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.

Age at interview: 82
Sex: Male
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So I guess what we are trying to find out is how much do you, as a patient, want to know, would you feel burdened if the GP told you more details about your test results, are quite happy to trust them to do- to make those decisions for you or do you feel you should be told what’s on your medical records in more detail?

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.

Age at interview: 71
Sex: Male
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Yes yes I've had a few blood tests yes. And these obviously were because they sometimes take about three different lots of blood and I never questioned what they were for really, you know what I mean?

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?
 
Results of INR (International Normalised Ratio) tests were usually phoned through to the patient and sent in writing because the results determined what dose of warfarin the patient should take for the next few weeks until their next scheduled test.

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 explains what happened when he was having check-ups at the hospital renal clinic and that he appreciated learning his test results straight away.

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Mike explains what happened when he was having check-ups at the hospital renal clinic and that he appreciated learning his test results straight away.

Age at interview: 36
Sex: Male
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Was it mainly a consultant you spoke to at the hospital or were there specialist nurses as well?

Yeah, yeah there was specialist nurses who'd take your blood and weigh you and do your blood pressure and then there was a consultant… you'd sort of go and do several things at once. You know, you'd sit there for a bit and then you'd go and have your blood done, then you'd go see a consultant a bit later on, and then they would tell you either to come back again or, you know, or whatever. So, so that was how it sort of worked, there was different people to do different things. But you were mainly there to see the consultant I think. He would look at the results of your blood tests and your urine tests and they must do it there and then – they must somehow have a way of testing your blood and urine straight away, so- to give you some feedback straight away.

So yeah that’s probably what the waiting round was – you were waiting for things to be looked at and analysed and measured, and then you… yeah the last person you'd see would the consultant and they'd tell you, you know, what they’ve found and obviously they’d do a bit of an examination and, you know, take appropriate action there. So yeah, the final time the guy said, "Don’t come back again”, you know?

And did you like having your results available so quickly?

Yeah, yeah that was- that was good. I was quite impressed with that because, you know, that doesn’t help anybody waiting around to find out if there's something wrong with them or something right with them, so yeah that was quite a good…that was a quite good thing to be able to find out straight away.

And how long ago was it that you were discharged back to your GP?

I'd say 2011, 2012 something like that?

So about three years ago now, two years ago.

Yeah, yeah.
 
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.

Age at interview: 56
Sex: Male
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So what is your understanding currently about the current performance of your kidneys?

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.
 
When receiving test results, people would often be told specific values for levels of cholesterol or blood sugar, but few said they had been given any details about their kidney performance test results. Commonly people were told that their test results were: “fine”, “satisfactory”, “good”, or there had been “no change”. Some had been told their results were “normal” or that there was “nothing wrong” even though they had a small reduction in kidney performance. This may be because GPs want to avoid causing any anxiety about mild kidney impairment that isn’t causing any symptoms and is unlikely to worsen (see ‘Why is kidney health important?’ and ‘How and why is kidney function monitored?’).
 

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.

Age at interview: 75
Sex: Male
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So, as a rule, you go and ask for the test results yourself?

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’.

Age at interview: 78
Sex: Male
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So at what point did you become aware that there might be some problems with your kidneys due to taking the diclofenac?

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’.

Age at interview: 50
Sex: Female
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And over the phone they would just say, the receptionist would say, "They're fine.” “There's nothing to worry about; are satisfactory," are normally what they say. If there's anything else they would say , "There's a little note on here, you need to come and see a doctor about this," but normally they just…the receptionist says, "Yes they're satisfactory," and that’s fine, it’s normal.

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.
 
Others had been told something about their kidney impairment, either when it was first diagnosed or when discussing routine test results. For instance sometimes the term ‘chronic kidney disease - CKD’ was mentioned, and which stage theirs was, or a figure or percentage for their specific level of kidney performance (the estimated Glomerular Filtration Rate – eGFR), or the level of the waste product creatinine in their blood. Tony and Justine had been shown a graph of their changing eGFR over time. However, not many understood how many stages of CKD there were, or what the scale for the eGFR was, and what stage or level represented a problem. Mike wondered whether his kidney function had returned to normal because he had been repeatedly told that his routine test results were satisfactory. Others had been told they had blood or protein in their urine but not why that was significant.
 

Although Mike suspects he was originally told details of his kidney performance he cannot remember any specific values and doesn’t understand whether he still has a kidney problem.

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Although Mike suspects he was originally told details of his kidney performance he cannot remember any specific values and doesn’t understand whether he still has a kidney problem.

Age at interview: 36
Sex: Male
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And were any values mentioned with that? So when you talk about how your kidney function has developed over the last few years since you have been monitored, do you know what your current values are?

No

Whether they’ve gone up or down or just stayed the same?

No, no I can't remember. I did see some values at the time on the screens that they had and they may well have mentioned ranges of normality, so I'm sure there's been values discussed, but as far as remembering what it is, no I don’t know what… I don’t even know what they use to… record the function.

I don’t, I still don’t fully understand… what, you know, what the situation is because, you know, they just said that I've got to be constantly monitored now, but whilst I don’t know whether I did exactly have this nephrosis thing or whether I still do or… or whether I've got a future risk of getting something like that, I, you know, I'm not sure that… I'm not entirely reassured, you know, with the current status of the condition.
 
 

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’.

Age at interview: 70
Sex: Male
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And he did explain to me this morning that if you’re a healthy young man, your reading would be something like ninety. It’s only when it gets below sixty that they might start looking at it, you know. And when you get below thirty then they-, you know, that is the time to really looking at it. But he’s told me my readings were in the fifties and, in fact, they’ve gone up. The last time I had the blood tested in February, it was fifty nine.

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 and others told us they were happy with the little information they currently had about their kidney function level and did not want to know more or risk becoming confused by being given information they couldn’t understand.
 

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.

Age at interview: 78
Sex: Male
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And do you now have blood tests which are looking at your kidney function?

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.
 
However, it was common for people to say they wanted to know more but often felt unable to ask; they hoped that being better informed might help them to manage their condition and prevent it from worsening. Harry wanted to rule out the possibility of his results being mixed up with those of other patients. However, several thought it was unrealistic to expect their GP to spend more time with them explaining things because they were so overworked.
 

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.

Age at interview: 62
Sex: Female
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OK and how would you then get the result of your test?

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.
 
For more about people’s information preferences see ‘The words doctors used to explain kidney impairment’, ‘Sources of information’, and ‘People’s ongoing information and support needs’.

Last reviewed August 2017.

 
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