Flo and her husband Fred

Age at interview: 70

Brief Outline: Flo was diagnosed with CKD 3a with proteinuria in May 2011 after routine tests. She was referred to the hospital for further investigations and has chosen to remain under their care as she feels greater confidence in the consultant than the care provided by her GP surgery.

Background: Flo is a retired supermarket chief cashier. She has atrial fibrillation, hypertension and gout. She and lives with her husband Fred who has COPD. They support each other with their health problems and have 2 children. Ethnic background: White British.

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Flo was already having regular check-ups for her cardiovascular problems (AF and high blood pressure) when in May 2011 a routine test revealed that she was passing a significant amount of protein in her urine (proteinuria). However, she only found out more recently that she had a medical diagnosis of Chronic Kidney Disease Stage 3a recorded in her notes, when receiving a copy of the letter from her consultant to her GP which mentioned the term CKD.

Flo had been having 6 monthly check-ups with her surgery when 3 years ago, her GP told her that a significant amount of protein had been found in her urine sample and that her kidneys were “leaking”. The GP repeated the test, producing the same results and referred her to see a kidney specialist in hospital. He told her that she might need a kidney biopsy but that there was “nothing to worry about”. However, Flo worried that she might need to go on dialysis or have kidney cancer and felt very anxious whilst waiting for her hospital appointment. A nurse that Flo was seeing regularly at the time picked up on her anxiety and explained in more detail what the GP might have meant by ‘leaking kidneys’. The nurse managed to reassure Flo that her problem was likely to be non-serious and treatable.

Flo was on blood-thinning warfarin medication at the time, so the consultant at the hospital decided against carrying out a kidney biopsy as it would have required a hospital stay and might have caused Flo to have a major bleed. However, as a result of the referral, Flo’s cardiac care was taken over by the hospital and she was prescribed additional medication (losartan) to lower her blood pressure as this was seen as the main driver of her decline in kidney function. For the last 3 years, her kidney function has been stable, getting neither better nor worse.

A few months ago the hospital offered to transfer her back to her GP for kidney monitoring, but despite longer travel times she prefers to be seen by her consultant as she has greater confidence in her medical knowledge and competence. Flo has experienced a number of occasions when her regular GP’s decision-making about necessary investigations and medication was called into question by hospital consultants. For example, her GP had told her that her breathlessness and high blood pressure were due to her not taking sufficient rest before using the blood pressure machine in the waiting room. However, her consultant recently informed her that self-service blood pressure monitors are inadequate to obtain accurate readings for patients with atrial fibrillation.

Flo finds the nurses and consultant she sees at the hospital more forthcoming with information and taking the time to explain things. She also finds it very helpful to receive summary letters of her test results and treatment plan. In the past, she has taken a letter to her GP to make a case for why she should remain on a particular type of statin, even though the GP had suggested a change in prescription. She trusts her consultant and has a direct telephone line she can ring if she has concerns. She now sees her GP every 6 months for a check-up, but continues to have her more thorough annual exam with the hospital consultant. She no longer worries about her kidney health as she feels confident in their care.

Flo’s GP and nurse have occasionally advised her on diet and exercise, but she feels their suggestions can be quite unrealistic for her circumstances. She does not feel that weight loss is something that she wants to bother about at her age and is grateful that the health professionals she sees usually don’t put pressure on her to change her habits further than she has already had to.

Flo has found pharmacists a useful source of information for finding out what medications are safe to use for her. She has been told to avoid non-steroidal anti-inflammatory drugs (NSAIDSs) but was surprised to find out that even something so seemingly innocuous as Bonjela (containing choline salicylate) could affect the readings of her warfarin blood tests. She now is very careful about using additional prescription or over the counter medication and makes sure she reads the information leaflets. Occasionally, Flo also makes use of her computer to find out health information from the internet.

Flo is not aware of anyone in her family having kidney problems, but thinks her decrease in kidney function is due to her lifelong history of high blood pressure, which she suffered with badly in both her pregnancies. She also wonders whether one of her kidneys could have been injured when she had complex surgical procedure on her bowel over 30 years ago.

More recently, Flo has switched to a new GP at her surgery that was recommended to her by a friend with similar health concerns. She is pleased that the new GP agreed to switch her from warfarin to rivaroxaban as she finds this medication a lot less restrictive with regard to food and timing of meals and it also removes the need for her to have frequent blood tests. She is grateful that her new doctor has shown empathy with the severe pain she intermittently experiences from her gout and is willing to prescribe adequate amounts of pain relief (paracetamol and tramadol), trusting her to manage how much she needs to take. She found it reassuring to be shown a graph of her kidney function development over time at her last appointment. She thinks having 6-monthly check-ups is the right frequency and feels the appointments give her the peace of mind to be able to forget about her kidneys as a health concern in the time between.

Flo regularly attends a hospital renal unit for her kidney checks. She has found it reassuring meeting people who have come out the other side of a kidney transplant.

Well people that… when you go to these places and you sit in the waiting rooms and you're all in there for kidneys. And you’ve got people that are going back in there because they’ve had a transplant and they're going for a check-up.

And they are very, very anxious to tell you that it's alright, you know, there's a bit of pain but don’t fret, you'll be alright [laughs], and I'm going back to work in a month, you know that’s…for them. To be truthful with you that’s the best tonic you can have because you see different - and they say to you, "I had that love, don’t worry about it."
 

Once a year Flo has blood and urine samples taken and her weight and blood pressure checked by the practice nurse. When the test results are through she sees her GP for a medication review.

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 there's 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?
 

Although Flo has her blood tests taken at the GP surgery in preparation for her annual consultation with a kidney specialist, the consultant does not automatically get told when the results are available on the hospital computer.

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… we've 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, "We're changing your prescription."
 

Flo had been told that her kidneys were showing signs of wear and tear but not to worry. But she said that being told, ‘Don’t worry’, actually caused her to worry.

What was going through your head?

[Laughs] everything you could think of. You're wondering if it… previous to that they… I was called back a few years ago for a water sample again and I said, "What's wrong?" And the nurse said, "It could just be just one of those things, don’t worry about it, but we're just going to check and make sure." One of the results came through - because you wait a week and then you have to ring in for them - and she said, "You're back in range you're alright, don’t worry, we'll see you again in six months as usual." Oh that’s fine. But [sighs] …But when I queried it with the doctor he said, "It's alright don’t worry, you're getting older. …And your kidneys are the same age as you [laughs]; and they're working every day. And they're showing signs of a little bit of wear and tear – it's normal, don’t worry." Which means worry.

So you were- that worried you.

Yes it does because when somebody tells you, "Don’t worry it's alright, don’t worry," you think, 'Why is he telling me not to worry. And I am worried now,' because it's nothing, that you're not expecting it and it isn’t normal.

So what kinds of concerns and questions did you have at the time? So this is four years ago now, or three years ago right?

Three years ago. Well I just said, "Well what's going on, what's happening?" and he just said, "You're leaking, you're leaking some protein; don’t worry about it. You'll see a consultant and we'll take it on from there."
 

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

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

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

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

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

Yes

To the surgery.

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

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

Hm mm

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

Right OK so you were basically looking at a curve?

It was… well it was yeh, yeh

Was it fluctuating quite a lot?

Yeh, yeh

Yeh

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

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

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

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

Yeh
 

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

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

Oh

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

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

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

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

Mm. If what happens sorry?

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

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

Yes.
 

Flo has multiple health problems and finds that the exercise advice offered to her by health professionals is often unrealistic for her circumstances.

What about lifestyle such as diet and exercise – is that something that was discussed by the GP or your nurse or the hospital consultant in relation to your kidneys in particular?

When you go for your yearly… MOT the nurse says to you "Your cholesterol level's high or it's low." If it's high she'll discuss, you know, are you taking… do you eat…(whispers) cheese is my downfall.

And it's, you know, sort of, "Less of the cheese if you don’t mind or less of this so you know, sort of take that steady, you're not too bad but you're just creeping up again." When it comes to exercise she says to me, "Do you do twenty five minutes brisk walking every day?" Now, I can't even walk to the bottom of the street. How on earth do they think I'm going to do a brisk walk of twenty five minutes every day? So then I got told, "Well no well we appreciate that; how about …walk nice and steady," and I'm using a walking stick mind, "Nice and steady, don t worry about it. Walk until you're tired then turn round and walk back." Now if you walk that way until you're tired there's no point in trying to turn round and walk back again because you're too tired!

So when you explain that they say, "Yes alright then; now how many times do you go up and down stairs in the day?" That’s enough [laughs]. Because all of a sudden they can see that it's silly, there's no point.