So but as far as you [addressing Bernard] were concerned, were you aware that your kidney function was being tested as part of your blood and urine tests for, in the diabetes clinic?

Bernard: Oh yes.

Yeah.

Bernard: I took samples there for that reason.

And can you tell me a bit more about what is it like for you to go for these tests? How do you feel about the having blood tests?

Bernard: Oh, it’s quite simple, doesn’t bother me at all.

You don’t get-

Bernard: As a matter of fact, I had one yesterday morning.

Okay.

Bernard: And the phlebotomist was here about ten minutes, if that. No, that sort of thing doesn’t worry me at all.

I guess you’ve had quite a few recently.

Bernard: Oh yes.

You know, it’s the last two tests were were fine. The tests I’m going to have in future, really are to see if the medication I’m on is causing any problems. So it would be a kidney test, a liver test and the platelet test and hes tied it up so they all coincide now, you know, get back into a- a rhythm. So he said, come back in about June-ish and have another blood test and then they’ll all be in the same cycle.

But it’s really for to see what effect, side effects the medication is if they’re causing or if they’re not causing any side effects.

And since then I’ve been formally diagnosed as being bipolar. And as a result of that I have regular blood tests and from those blood tests it’s been identified that I’ve had an underactive thyroid because I have three monthly blood tests for- to monitor my lithium levels in my blood because they have to be at certain levels, so to make sure the dosage of the drug I’m taking is appropriate, relevant, not too excessive, not too low and working. I have three monthly blood tests for that and also I was then having six monthly thyroid blood tests at the same time and kidney function. My thyroids were then found, about three years ago, to have gone to be underactive so, as a result of those blood tests, that was picked up and I just take a thyroxine tablet to (excuse) that. And then my kidney function over the last probably two/three years has been going down and again that’s been picked up by these regular blood tests as a result of those and now I have every three months, when I have my lithium levels tested, I also have my kidney function test to see whether it’show it’s going; whether it’s decreasing or what’s happening to it.

So that’s where I am at the moment and they just say, “You’ll have your blood tests and that’s what they’re for, so that we can monitor things.” And what I have been told is that a number of people that are around my age will naturally get- their kidney function will naturally decrease so it could be due to my age. It could be due to the fact that I’ve been taking lithium long term; it could be a combination of the two and it could be that my kidney function just stops as it is now and doesn’t get any worse. So I don’t think my medical teams are particularly concerned at the moment, just that I have my regular blood tests and that if things get any there are any changes that then they would call me in and they could discuss from there.

Now I would like to ask you a little bit more about how your kidneys are being checked with your GP. So you say you had , after you had your heart attack you were looked after for two years by the hospital, then they referred you back to the GP and you’ve been having yearly check-ups ever since?

Well no I’ve been going everythree times a year, then I because I didn’t have any actual problems I started going then twice a year. With the same tests blood pressure and blood.

What about urine tests do you have urine tests?

And again I occasionally I would have a urine test. I suppose I was having one about once a year really to check-up on that.

And how does that come about? Do you get an invitation to say it’s time for your check-up or do you have to make the appointment?

I phone up and make the appointment. I know the people at the surgery quite well . I know the nurse who , who shed do all my tests etcetera and as I say I know my GP quite well so I can get in touch and get an appointment without any problem, really.

And what prompts you to think it’s time for me to go for a check-up?

Well I try to it’s just time. Originally I was going every three months, then I was going every four months and then I cut it down to every six months.

Because basically, because nothing was happening and my results were always quite similar.

So since you’ve been having the annual tests with your GP, how do you find who carries out the tests when you go for blood tests there?

Flo: On your prescription it tells you a review date. And you don’t get another prescription once that review date is over until you’ve had your review.

OK

Flo: So you ring up and you tell them you want, you know it’s time for your medication review. Your nurse already tells you anyway that you’re going to have blood tests taken and to take a urine sample. So you go in, you take with you your urine sample, and the nurse asks you questions, weighs you, takes all any samples that

Fred: Blood pressure

Flo: And takes your blood pressure. And then you wait a week and you ring up to see if you’re all within reason and if you are you then make an appointment to see your doctor.

Hm mm

Flo: And he goes through your medication with you to see if theres anything that you’re taking that you shouldn’t be taking or anything that he thinks you ought to be taking as regards the results of the tests, isn’t it?

I wouldn’t say I’ve had regular checks. I’ve if I was going to the surgery for any particular reason, they would sometimes say, I think wed better take a blood sample, test, make sure your kidney’s are functioning okay. And, as soon as I moved here, that’s the very first thing they did was to take some blood to test for my kidneys and I think they’ve done it twice since or something like that.

So yes, every so often, they sort of get a bit excited about my kidneys and decide they’re going to check it but they don’t do it on a regular basis.

And can you tell me, in a bit more detail, what that looks like that, so they, you might consult about something else and then they might say, Let’s look at your kidneys. Let’s have a blood test?

Well, that would, back at my old surgery, here, I don’t, I very rarely go to the doctor. And it’s usually because I’m in an excessive amount of pain or I’ve got- I don’t know, whether I might feel ill from flu or something, so I don’t, I very rarely go to the doctor and it’s nearly always to do with my arthritis. I mean last time I went was because of this terrible flare up I had in my left shoulder. [touches her shoulder and makes contact with microphone] Oh sorry I forgot about the microphone!

Not to worry.

Yeah, because of the flare up I had in my shoulder.

And they tested my urine that time to make sure my kidneys were okay but that was the last time I went to the doctor. I don’t go to the doctor very often.

And who takes responsibility for arranging these check-ups?

Hm I don’t know whether it’s the doctor but all that I get is a letter come through about well I just get a letter come through saying it’s time for your check-ups, make an appointment and come and have it come up to the clinic and get the nurses to take your blood and do everything; book an appointment. And then I go, they take your blood, do your blood test

[sneezes] excuse me!

and then you go up, sort of they make an appointment for you to go up about two weeks after and see the diabetic nurse.

So you get the invite, and it’s down to you to make the appointment?

Yeah, yes, yes.

And then they make the appointment for giving you the result?

Yeah.

And so take me through the steps in having a check-up test at the GPs. How does it come about? How do you-

Well, it’s, it was determined by him this morning. Because I went back because, when I picked up my prescription for my atrial fibrillation medicine about a month ago, there was a slip in there.

There was a slip in there to say that I’ve gone past my review date on my medication and to make an appointment and so I made an appointment to see my GP and I saw him this morning. And as I said, he took my blood pressure and urine test and just looked at the figures again on the screen, talked me through what information I’d given to you about the ninety, sixty and the thirty reading and he explained, you know, a little bit more about that. And that was it really and he just said he was going to up, put my bisoprolol from one point two five to two point five and that was it. He Gave me a new prescription and go back and see him in six months.

And do you see the nurse at all as part of the check-ups?

If I have a blood test at the surgery, I see the nurse, yeah, yeah, yeah.

But this time it was just the urine test and.

A urine test and blood pressure. Yeah, yeah.

I was first diagnosed with high blood pressure. This was investigated by the local health centre but at the time I think I was about forty five something like that and they asked me to go to the hospital, to the kidney unit and have my blood checked, which I did for, I think it was about four months. So I used to see the doctor and then have my blood taken and then I’d go away and then I’d come back in a month’s time and do the same thing again virtually. I had to give a urine sample at the time and, that’s right, urine sample first, then saw the doctor and then they took the blood. I did this for about four or five months and with discussions with the doctor, she said, “Well the thing is your kidneys are fifteen percent inefficient, but we only start worrying about it when you’re down to about ten percent,” so in other words my kidneys were working fine, they were eighty five percent efficient.

So being public-spirited I said, “Well really this isn’t necessary?” and they said, “Well, you know, if you wish to discontinue and leave it in the hands of your GP,” which is what I did. I mean I’m taking up valuable time for people who are in deep trouble and I don’t think that’s fair especially as I’m not that ill or hopefully not that ill. My blood pressure eventually stabilised to, it’s usually about a hundred forty eighty over a hundred and a hundred and forty over eighty. And I attend a regular check-up once a year and so far, touch wood; I’m seventy years of age now and nothing of any consequence regarding my kidneys.

So why do you think you need to see the nephrologist as well as the GP about your kidney function? What are their different roles in this?

The, I think that that it, from the outside, it would appear that theres no need to see both, but from my point of view, I think it’s good that somebody is charting a particular aspect of my health on a regular basis, is looking out from an expert point of view, from the kidney function, for things that might and could go wrong or things that could improve my condition. And the GP is there for more, like, day-day maintenance, if you like. As far as my nephrologist as well, what you have to remember is that it was almost like a coincidence that the time that I was ill with my pulmonary embolism, was the same week that I was due to see the nephrologist. And because of my kidney condition, if you like, there was a question mark as to whether I was fit enough to have a CT scan. Now I saw him on the Thursday as an inpatient, if you like, although I was an outpatient in the same hospital and he gave me the go-ahead. He said that, you know, things had improved so much that you, you know, there was no problem in me having a CT scan. The alternative was to have another kind of scan, which I would have had to wait ages for and would have been much more complex and I would have had to have gone onto another hospital. But, you know, then they could tell straight away and you don’t really want to mess about when you’ve got a pulmonary embolism.

So, you know, he, that was lucky and I think it’s just a case of okay, if he said to me, next time I see him this this spring, Well, I think you’re fine and I’ll discharge you now, well, that, obviously, I would have to accept that and, you know, think, Well, okay. That’s good. I’ve done everything that I was supposed to do.

You know the only complaint I have to make about it is the fact that I’m only going there once a year now. I’m having the test taken but I’m only going to see the consultant once a year and that’s from August last year. I go August this year and they wrote a letter to my GP to say would he take blood samples and that. I’ve just had them done last week but our surgery doesn’t inform [hospital], my consultant, that I’ve had the blood tests taken or the results.

Right

Now I can’t see the sense in that.

So they are being asked by the hospital to take them but they don’t send the results back?

But they don’t and they take them, that’s not a problem, but they don’t relay the results to my consultant.

Right so when you go and see your consultant he hasn’t had the results then?

Well the other surgeries around here apparently do. And when I asked the phlebotomist at my surgery and she said, “No they don’t weve taken the blood tests and if they want them they must either come to us or they can get them off the computer, you know?”

Hm mm

So I says, “So they don’t even know that although the tests are going through to [hospital], and they’re at [hospital] and they don’t know it’s being done for me, for them?” and she said no. So I rang my consultant’s secretary and I said, “I’ve just had my test taken,” and she said, “Thank you very much I’ll pick them up this afternoon.”

OK

So that’s the way I get the results through because then they can if they decide that my blood levels are wrong or something like that, then they will then get through to my GP who will then ring me up and say, “Were changing your prescription.”

And I didn’t really understand that I, and I knew had a kidney problem but after a year of going to the renal unit I’d stabilised and there was no, they weren’t worried. So they discharged me back to the care of my GP surgery. So, from 2005 until 2011 I was being cared for the GP surgery except that their care was well, from my point of view, virtually non-existent, certainly inadequate. And so that’s my, that’s, that’s the story that I have tell.

The, I used to go regularly for blood tests and occasionally for interviews with the doctor.

Blood tests were with nurses. And what I know now is that the blood tests from, I think about 2008 and 2009, started to show a deterioration in my kidney results. And by then they were talking about the glomerular, – gone, I can’t say it – the estimated glomerular filtration rate, eGFR, which is how you measure the seriousness of condition, kidney condition. And what they began to show was that my condition was worsening and that the automatic recommendation which is on the computer, computer record – I can show you the computer record, what they show is that at various times it says, Refer to renal unit, or, Should see doctor. And at no point prior to 2011 was I referred back to the renal unit. And there are, there are three occasions where it’s agreed between me and the GP surgery that I should have been referred back but that didn’t happen. And by way of explanation, the doctor who I took my complaint about the way in which they had handled my case with them, the way in which, what he said to me was, Well it wouldn’t have made any difference if we had referred you back because they would have treated you in exactly the same way as we treated you, which I didn’t think was a satisfactory response.

So you’ve had to look for information yourself, you’ve not got anything out of the health professionals really?

Nothing at all, nothing at all. And I think if you and now I’ve been had the Vitamin D deficiency and the B12, which comes into kidney disease, theres still nothing there. And it makes me wonder that are you going to suddenly drop and go into, like, 40 say, or 39? And then you’re going go and see a – I think it’s a nephrologist, isn’t it? – a nephrologist to help you because I would have liked to have seen a nephrologist when I was first diagnosed, even if I saw him once a year just to talk about what’s happened in that year or how I’m feeling or what we can just try and do. Well if you do this or that, so that you actually know something of what you’re doing. But nothing, you know.

Because I think that’s what’s going to happen you’re just going to suddenly drop and then you’re going to want to see one. I looked online to , to see a private nephrologist which cost £200, and I thought, ‘Well I’d pay that,’ [coughs] I’d pay two hundred pounds to see one just get me on the track, you know, even if it’s just for half an hour to say, “Well this is what you should do, this is what you shouldn’t be doing, you know, la la”. But you have to be when I phoned up to ask to see him, the lady said, “Oh you can’t do that, you have to have a letter from your GP.” I thought, ‘Well that’s that,’ and I won’t be getting no letter from the GP.

Did you ever ask to be referred to him?

No I didn’t because the doctor I had at that time wed already had a row, so I didn’t want to push it with that particular doctor.