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Kidney health

Attitudes towards monitoring kidney health

We asked the people we spoke to what they thought were the positive and negative aspects of having regular monitoring of their kidney health. People commonly said they gained a sense of reassurance from knowing that health professionals were keeping an eye on them, that their test results were fine and that if problems were to be discovered as a result of routine testing then they would be dealt with promptly.
 

For Joanne, regular monitoring reassures her that her test results are okay and that if a problem was detected it would be dealt with; there are no downsides.

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Age at interview: 50
Sex: Female
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And are there any positives that you get out of having the tests?

I'd say ‘no’ but I guess that if you have the tests then you know that, that there are no changes that you need to worry about in you find your body, your functions are OK, your levels are alright; you're not poisoning your body by taking these drugs and that you need to take some action, so I suppose having said no there are no positives, there are in fact because it's a reassurance point of view, you're reassured that what you're doing, what you're taking is fine and that if there was anything wrong that it would be picked up and that action would be taken from there, so….

And what if any, would you say are the downsides of the testing?

None. I don’t mind at all. I'd rather have them tested and make sure that what I was taking was in… was OK for my particular body, within my body constraints that they are fine and that if there was anything wrong that it would be dealt with.

So no, no downsides.
 
On the negative side, organising and attending regular check-ups could be a nuisance and inconvenient especially if people had mobility problems or had to travel some distance, or if they had to wait a long time after arriving at the GP’s surgery or hospital renal clinic before being seen. Anne said she needed a lift to her appointments because of mobility problems but this was not usually a problem to arrange.
 

Justine finds it a nuisance having to remember her check-up is due and then arrange the appointment; she would prefer a system where the practice contacted her.

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Age at interview: 44
Sex: Female
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What are the downsides of having the check-up

It's just a pain trying to ring up, make the appointment, go… take my time out to go and do it between all the other things you just in life you do. It's just taking that time to do it and making that phone call, initially to do it – that is the downside of it. Therefore that’s why I think if they… if the system had a way of… saying to you, 'You need an appointment,' and they ring you or they text you to say “you’ve got a kidney test due”, at least then I could speak to somebody or… I’ll make an appointment rather than trying a) remember that I've got to try and make the damn appointment and take my time out the day to do that.

Amongst everything else you’ve got to remember to do.

So that was my next question about…

[Laughs.]

What would be the ideal monitoring service for you?

Oh yeah [coughs] even if it was just a text just to say you're due for a kidney function test in two weeks, please call to arrange an appointment. At least then the system's done something to remind you. And to remind me rather than trying- because I'm sure there are people out there that forget these things.

Yeah

Unless you’ve got a good memory [laughs].
 
Waiting for tests to be done once they had made the appointment, and then for the results to come back, could be a worrying time.
 

Roy often feels flustered when attending for a check-up and worries while waiting for his test results in case they are not good.

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Age at interview: 57
Sex: Male
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And how do you feel about going for the check-ups – what's it like for you?

Well it can be a bit frightening of course, you know? No we don’t want to go down and find you got bad results, you want good results… It can be a bit nervous sometimes yeah.

So in between doing the test and getting the result is that like a worrying time for you?

It is, actually until you… you’ve got to wait say a week or two weeks then you’ve got to book up to see your GP… and it can be a bit worrying, yeah.

Do you ever forget to get a test result?

No I don’t no, no.

So it's really quite at the front of your mind?

Yeah, yeah.

To get it checked out.

Mm.

And what about the actual going there and having the test – do you feel OK about it or is it…?

Sometimes when you get there and anxiety a bit, you know sort of flustered and worried about it yeah can do, you know just got… take a grip of yourself and get down there [slight laugh].
 
A fear of needles was a problem for some people who therefore didn’t like having blood samples taken (see ‘Tests used to monitor kidney health’).

Most people we asked were happy with how often they had their check-ups done. A few would prefer them more or less often, some saying they would not be happy if the frequency of their testing was reduced. Pat was currently having blood tests every month because of an infection and was looking forward to a time when she would have tests further apart. Bill would like to have a home testing kit for his blood sugar so he could measure it between formal check-ups, as many other diabetics do, but his GP would not supply it on prescription. Some people whose check-ups didn’t appear to be organised at particular time intervals wanted them more regularly. Gordon said that if his check-ups were done more frequently than every six months he might worry that there was something wrong.
 

Bernard and Shelley are happy with the frequency of their check-ups and feel they receive good care from staff at their local surgery.

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Age at interview: 79
Sex: Male
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And going back again to the check-ups that you have at the GP’s surgery, what are the- the good things and the bad things about it, from your point of view?

Bernard: The good things is coming out and being told that everything is okay [laughs]. But… that’s where- how do you mean?

Are there any are there any downsides to having to attend the check-ups? I mean I guess, strictly speaking, you don’t have to attend them but are there other things that you think it’s a bit much? What do you think, for example, about the frequency at which you attend?

Bernard: I think the frequency is all right, yeah, yeah. Well, I’ve got no complaints about that at all. You know, as a matter of fact, we get on quite well, you know, with my, well, and the wife.

Shelley: Well, I consider we have good treatment don’t we?

Bernard: Yes, we do.

Shelley: I mean our diabetic nurse is very, very good and, if we have got a problem, she will refer back to the GP.

So that was my next question, actually, what kind of relationship do you have with your, the health professionals.

Bernard: Oh, very good. Very good.

Shelley: Very good.

So you you’ve got trust in their judgment.

Bernard: Yes.

Shelley: Definitely. Definitely. Definitely. With all our GPs, the one in particular who’s very, very knowledgeable on this… our problem.

On diabetes.

Shelley: Diabetes and- and heart. He’s very knowledgeable and he does share the knowledge with us.

Yeah.

Shelley: Can’t fault him there can we?

Bernard: No, he’ll tell you about the problem. He’ll do little drawings to explain what he’s telling you, very good indeed.
 
 

John X has an annual blood test and his blood pressure is checked twice a year but he would prefer more frequent reassurance that his kidney function is stable.

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Age at interview: 66
Sex: Male
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Are there any downsides for you for attending the check-ups?

No not really no, no.

So you're quite pleased to be checked up?

Yes, yeah, yeah yeah.

What do you think about the frequency - every six months?

Yeh I think it's more to do with the blood pressure but then they do check other things, so when I have blood tests, so that might be, that might be once a year I'm not quite sure… it's six monthly because sometimes I get this, you know, for the hypertension clinic.

And then I think this is where I put something wrong on the form because it's … it's mainly to go and check the blood pressure I think and then… I don’t think they do that every time with the blood tests.

So in terms of the tests you're having at the moment it's probably a blood test for your kidney function once a year…

Yeah

And then six monthly blood pressure checks.

Yeah, something like that.

And do you have urine tests as well?

Yes usually yeah, yeah, yeah.

What would you like, what would feel reassuring to you, what sort of frequency?

Well even if it was probably every four months or something you know and… I would say on a regular basis, have them… at least over the course of the year if you have three tests done, you know, you’ve got a good example of what… whether it's going up or down.

You know when it's, when it's once every twelve months, once every six months whatever it is now, I can't remember, you can't get that in-between level can you? Now, if you’ve got three tests in a year then you'd get some sort of level. OK it might be up on that one, down on the next one; maybe down on the next one so two out of three isn’t great.

Two bad ones I mean, you know two lower ones but two good ones you're probably feeling a little bit better about yourself and feel… it can't be quite so bad.

Just gives you a little bit of hope I suppose really. It's not going to just go “bumph” [motions with his hand] and it’s finished.
 
 

For Laura it is important to maintain a sense of control over how her kidney condition is managed; she would not want to be monitored any less often than six-monthly.

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Age at interview: 60
Sex: Female
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So how would you feel if your doctor wanted to change the way you are monitored, for instance make it more often?

Oh I’d probably be irritated actually; yes I prefer to do it as it is. As long as my condition doesn’t, if my condition does change then, then I’m sure I would agree to being monitored more if my creatinine ratio goes down more, then I would agree to be monitored because yes, I’d want to know what was going on. I think for me it’s very important that I know what’s going on and what’s happening in my body and how it is, so that I can at least try and do something about it, whatever that might be. For instance I suppose if they started to fail I might actually really manage to say, ‘Right, alcohol go’, or yes, you know and I might then think, well no I’m not sure, I was going to say no crisps but I’m not absolutely certain about that, I think a little bit of salt’s alright, you know. I can’t, yes.

So what if the doctor said, ‘Actually we don’t really need to test you as often as every six months, how about every year?’

I wouldn’t, I think I’d probably disagree, I’d probably want it every six months. Yes, I think that’s what I’d like, yes.

Because it gives you reassurance?

Yes.

Yes.

Because I’d know, I then know how I am and if I’ve changed at all, yes.
 
We also asked people how they would feel if their doctor wanted to make changes to the way they were monitored other than how often the tests were done. A common response was that they trusted their doctor and would go along with whatever they suggested without questioning it. Others said they would want to discuss it with their doctor so they could understand the reasons for any change. Jim and Joanne expected the format of their check-ups to remain as they were for the foreseeable future.
 

Tony has complete faith that his GP has his wellbeing at heart and would therefore go along with whatever changes she suggested.

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Age at interview: 74
Sex: Male
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And if your doctor wanted to change the way you were monitored, for instance, how often she checked up on you or the type of tests, how would you feel about that?

I trust the doctor. I always have trusted all this time that I’m in good hands and whatever she said it’s for the better for my health, or the consultant, it’s better for me.
 
 

Eric was confident that any changes his GP wanted to make to his monitoring regime would be discussed with him.

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Age at interview: 79
Sex: Male
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How would you feel if your doctor wanted to change the way you were monitored, like the frequency or how it was done?

It wouldn't be done without a lot of discussion. We would have to agree on it and I'm sure my doctor would not just ring me up and say, "I'm going to change your blood testing regime", we would discuss it before she even got… before she picked the phone up she'd know that really we should discuss it.
 
When asked about which professionals they would like to see for particular aspects of their care, having blood taken by a nurse or phlebotomist (a specially trained healthcare assistant not usually trained in nursing) was a popular choice because they were more expert at it than doctors. Some people were happy for a practice receptionist to tell them about test results as long as they were normal, but would prefer to speak to a doctor or nurse about abnormal results because they were better qualified to discuss medical matters and should be able to answer any questions.
 

In Harry and Nell’s experience, doctors are not as good at taking blood as the staff who do this all day long.

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Age at interview: 78
Sex: Male
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And what do you think about the way in which this is done and the frequency in which it is done?

Harry: Well I don’t have any complaints, I find it’s fine and I’ve- I have high regard for the nurses. I find the nurses sometimes better than the doctor.

Nell: [shhh] I knew you were going to say that! [Laughs]. Don’t say that ever to a doctor [laughs].

Harry: No, well.

You’re not alone but I’m interested to hear why.

Harry: I think sometimes the doctors don’t have that hands on that the nurses have because they’re doing it all day long, aren’t they. They, to them, it’s part of their routine and, therefore, they seem to be more… at ease with that particular part of the diagnosis [laughs].

So do you mean the actual taking of bloods?

Harry: Yeah, I mean they all seem very confident in what they’re doing. I must admit, I’ve had the odd occasion when the doctor has had great difficulty in extracting blood from me and I’ve thought, “if only I had a nurse so that she would do it just like that!” [Laughs].

But, to be fair, the doctors probably don’t get the same level of practice that the nurses do with some the routine things.

Nell: We’re quite confident that if the nurse picked anything up that she was worried about, she would-

Harry:  Oh.

Nell: Refer to a doctor.

Harry:  Yes, on more than one occasion, the nurse has referred something to the doctor and the doctor has given her feedback so it seems to work pretty well.
 
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Mike would prefer to talk to a doctor than a nurse about his condition and test results because they have greater expertise, whereas he would be happy to receive lifestyle advice from either.

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Age at interview: 36
Sex: Male
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And who do you think is the most appropriate person to give you information about your kidneys, like sort of clinical information?

The doctor

The doctor rather than the nurse.

Yeah, yeah.

And can you say why you think that?

Well they're qualified, you know, in that… and they’ve studied long and hard to know about these sorts of things. I'm not saying the nurses haven’t but I'm saying, you know, they're nurses and doctors, they're two different things aren’t they, you know?

And what about lifestyle advice – who do you think is the best person to give you that?

The nurse or the doctor yeah, I think, you know, that’s something that’s probably a bit less specialist so, you know, I'd say… you know, either of them can do that. But… I don’t know, you know, I've got no , no reason… no reason why, you know, the nurse or the doctor would or wouldn’t do it, but I think, you know, they're, you know, they'd both be capable of doing that.

What about receiving your test results – who would be the best person to give you those?

Well a doctor but I know that the- the receptionist person does that sometimes. So… yeah, I'd rather the doctor because then if you’ve got questions they can answer your questions straight away and, you know, satisfy you about it, whereas if somebody who's not so specialist, like the nurse, like the receptionist, you know, they might not be qualified to understand your condition specifically and therefore diagnose it, you know, further for you, you know, if you're got answers… the need to sorting out for your results.
 
Home testing kits that enable patients to carry out their own blood tests at home and know the results immediately are an example of Point Of Care Testing (POCT), also known as Near Patient Testing (NPT) or Extra-laboratory testing. Another kind of Point of Care Testing is where samples that have traditionally been sent to a hospital pathology laboratory for analysis are instead analysed with equipment in the GP’s surgery or hospital outpatient clinic, cutting down on waiting times for results to reach the patient. Some people who were having blood tests to measure their INR (International Normalised Ratio) because they were taking warfarin said this kind of testing was already available in their practice or hospital clinic using a finger prick blood sample rather than one taken with a needle.
 

James finds having blood samples taken and the INR measured at the GP’s surgery much more convenient than the frequent trips he used to make to the hospital, and he gets his results immediately.

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Age at interview: 71
Sex: Male
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But normally speaking I'm just in there five minutes. "Oh go and wash my hands, come on, sit down and get it done," and that’s it done.

Mm and you get your result then and there?

I get my results there and then.

Do you like having the result instantly?

Oh yes, oh yes. It used to be a nuisance having to phone up the hospital to get it yeah because you had to remember and [laughs] you know, you have to remember and sometimes I had to go up to the hospital to get the results. You used to have to go up there and do it in the hospital and then, "Oh we'll send you the result later," or, "phone us later in the day," you know.

So when was it that you had these tests in the hospital? …Was that when you initially went on the warfarin?

Yes, yes

How long did it take for your care to be transferred to the GP?

Oh two or three months. I would go to the hospital; yeah I would go to the hospital yeah, two or three months.

And you had to phone up every week?

No two or three month, maybe a month going to the hospital and then… before the doctor's surgery had this little machine I'd started to go to the doctor and they would take the blood sample.

So that went on for three or four months until they got the little machine and you didn’t have to go to the hospital. So I suppose over a period of about maybe six months. The first six months I was on warfarin it was a matter of getting the result; phone them up the next… the same day or later on to get the result.
 
The prospect of Point of Care Testing for other types of tests in future was popular among some of the people we spoke to because they wouldn’t have to remember to phone up for their results, and receiving results straight away would prevent the worry associated with waiting. But some felt that if they still had to wait a short while at the GP surgery or clinic for the results there would be no advantage over how they got their results now, and not everyone said that obtaining test results straight away was important.
 
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Mike thinks that being given test results straight away could avoid the anxiety that sometimes occurs while waiting for them.

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Age at interview: 36
Sex: Male
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But you quite like the instant results because there's now… there might a possibility of introducing point of care testing into GP practices as well, like in the hospital that you wouldn’t have to wait for the week.

Yeah

But you could have them there and then, so that would, from your point of view, that would be quite a good thing?

Yeah, yeah definitely yeah. I think they’re quite a good thing for everybody.

Why do you think that?

Well it just saves on a huge amount of anxiety doesn’t it? You know, plenty of people worry more so than I do about things and even trivial things I think they can get themselves in a stupor about and so if the doctor could satisfy them that the sample wasn’t wrong, or something was wrong straight away, then they can act quickly can't they? And they act to forget about it and move on or they act to repair themselves for whatever the problem is.
 
 

Sarah thinks that even if test results were given straight away, she might want to think about them and come back to see the GP later to ask questions.

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Age at interview: 77
Sex: Female
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So how would you feel if in the future you were able to get results of some tests there and then at the surgery?

Well I would need a few minutes to look through them and to look up my books perhaps, and see if I had questions to ask. I’d need… Getting them straight away I’d need a bit of a sort of latent period to think about it and to see what is relevant to me. I know my cholesterol is high, so I expect it to be high. I know I don’t at present want statins, so I would accept that and I wouldn’t want to speak to anybody. So I’d need to think before I asked for an appointment. I wouldn’t just go. I’d want to do my own personal investigations first to see what I needed to ask.

That is a very good point, that even if they were able to give you test results there and then, it wouldn’t stop people having questions later and therefore needing to make another appointment to come.

That’s right. If it is a urine test then fine, and you’ve got an infection then they give you an antibiotic, that’s fine. They just say you’ve got an infection. I don’t particularly want the details and that’s fine. But if it is something a bit more complicated I would need to have a look and think about it.
 
Monitoring of kidney performance in general was felt to be a good thing by several people because they recognised that the kidneys are vital to life and they believed in the value of preventative medicine. There was uncertainty about why some things are monitored while others are not, and suggestions for other aspects of health that people would like to have monitored.
 

Justine is in favour of health checks in general and would like it if the NHS monitored people for more things than they do at present.

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Age at interview: 44
Sex: Female
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So what are your views on having regular kidney checks for people like yourself, do you think it's a good thing or a bad thing and why?

Well, it can't do any harm by having regular check-ups. I'm… quite… in fact I'd like the system as a whole to be more… regular check-ups, not just for kidneys but for other… things that could… not necessarily little things but more sort of some of the major things like possibly for like cancers and diabetes and all those sorts of things; possible strokes, things like that. And I think we should have more regular check-ups for all those things to diagnose things earlier in life.

Because it's always, I don’t know about you, but… it's always in the back of my mind somewhere that in my family I know of people who've had heart attacks; I've known people who have had cancers in my family and you think, 'Am I going to get it?'

Just because they’ve got it am I going to get it? And it brings it to life when you know people who have these things and die of these conditions. …And you think, 'Well is there… there must be a way that you can have check-ups to try and detect these things earlier rather than later in life.' Try and, you know, so there's a better chance of survival.

Yeah

For these things.

So for the NHS as a whole to become more oriented towards preventive medicine?

Yeah possibly, yeah.
 


Last reviewed August 2017.


 
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