Bill
Age at interview: 71
Brief Outline: Bill has high blood pressure and Type 2 diabetes. He also had colon cancer in 2006. He finds it reassuring to have his kidneys monitored as part of his 6-monthly diabetes check-ups but would like to have more information. His most recent test suggested that his kidney function has decreased and he is currently waiting for results from a repeat test.
Background: Bill is a retired factory worker. He lives in a flat by himself after his long-term partner died four years ago. He is the youngest of eight siblings and keeps busy looking after the older ones. Ethnic background: White British.
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Bill has been living with Type 2 diabetes for 15 years. During the first few years he managed to control his blood sugar through diet only. However, around 10 years ago he developed Polymyalgia, a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hip. His GP prescribed steroids but warned him that they would affect his blood sugar control and he would need additional medication. The polymyalgia gradually improved but ever since, Bill has had to take metformin and glicazide to manage his diabetes. He feels frustrated that his GP surgery no longer provides him with testing strips so he can test his blood sugar at home between check-ups. When he starts to feel unwell, he can’t tell whether this is because his sugars are running high or low, so he often has a sugary snack as a precaution without knowing if that is the right thing to do. He would like to lose some weight, but finds it difficult to diet with his diabetes and has not had any advice from a dietician.
Bill also takes allopurinol to prevent gout, atorvastatin to lower his cholesterol and lisinopril for high blood pressure. Taking the medication is straightforward but he has experienced some side effects in the past. Over twenty years ago, when William first started taking allopurinol, he developed stiffness in his legs and started taking an additional supplement to alleviate his joint pain. However, after 18 months on the supplement, he developed kidney stones. He was in a lot of pain but managed to pass the kidney stones in his urine and they were sent off for analysis. He was referred for a kidney scan and the consultant told him that the stones were caused by a built up of uric acid in his kidneys and he should stop taking the supplement. He has not had any pain or symptoms from his kidneys since. However, as someone with diabetes, he knew that he had a greater risk than the average person to develop kidney complications at some point. One of his brothers had kidney failure and needed dialysis at a young age, so Bill is glad that he is being monitored regularly.
Bill attends six-monthly check-ups for his diabetes to have his blood sugar, blood pressure and kidney function tested. Around 12 years ago, the GP told him that his kidney function was ‘on the borderline’ but when Bill asked about his test results at subsequent appointments he was told everything was fine. Then, just a few weeks ago, he was told that the results from his most recent routine check-up suggested that his kidney function was decreased and the GP asked him to come back and repeat the test repeated. He is still waiting for the results of the repeat test.
Bill feels a bit concerned about what is going on with his kidneys at the moment, partly to do with the family history of kidney problems in a couple of his brothers. He would like to be told a bit more and found it helpful that his GP recently sent him an information leaflet explaining in more detail how the kidneys work and what can affect them. He feels confident to ask questions of health professionals, and likes to know how his blood sugar, blood pressure and cholesterol are doing, but it can be hard to remember asking everything you want to know during a consultation. In 2006, Bill had an operation for colon cancer. It took 18 months for him to get a specialist referral after he first consulted his GP for his symptoms, but he persevered because he knew something was not right, and that the symptoms he experienced matched those of his older brother, who had developed colon cancer before him.
Bill thinks that people with a mild decrease in kidney function should be informed by their GP about their condition. He strongly believes in taking responsibility for his own health and would like to know more information about the severity of his kidney problem and whether there is anything else he can do to help himself.
Bill doesn’t feel particularly affected by his various health conditions and feels well most of the time. He has a fairly busy schedule, looking after his older siblings and going out socialising on the weekends. He likes to keep fit by going for walks in the nearby parks. He does not smoke, drinks only occasionally and tries to eat a healthy diet, but would find it helpful to have more support with how best to lose weight.
Bill also takes allopurinol to prevent gout, atorvastatin to lower his cholesterol and lisinopril for high blood pressure. Taking the medication is straightforward but he has experienced some side effects in the past. Over twenty years ago, when William first started taking allopurinol, he developed stiffness in his legs and started taking an additional supplement to alleviate his joint pain. However, after 18 months on the supplement, he developed kidney stones. He was in a lot of pain but managed to pass the kidney stones in his urine and they were sent off for analysis. He was referred for a kidney scan and the consultant told him that the stones were caused by a built up of uric acid in his kidneys and he should stop taking the supplement. He has not had any pain or symptoms from his kidneys since. However, as someone with diabetes, he knew that he had a greater risk than the average person to develop kidney complications at some point. One of his brothers had kidney failure and needed dialysis at a young age, so Bill is glad that he is being monitored regularly.
Bill attends six-monthly check-ups for his diabetes to have his blood sugar, blood pressure and kidney function tested. Around 12 years ago, the GP told him that his kidney function was ‘on the borderline’ but when Bill asked about his test results at subsequent appointments he was told everything was fine. Then, just a few weeks ago, he was told that the results from his most recent routine check-up suggested that his kidney function was decreased and the GP asked him to come back and repeat the test repeated. He is still waiting for the results of the repeat test.
Bill feels a bit concerned about what is going on with his kidneys at the moment, partly to do with the family history of kidney problems in a couple of his brothers. He would like to be told a bit more and found it helpful that his GP recently sent him an information leaflet explaining in more detail how the kidneys work and what can affect them. He feels confident to ask questions of health professionals, and likes to know how his blood sugar, blood pressure and cholesterol are doing, but it can be hard to remember asking everything you want to know during a consultation. In 2006, Bill had an operation for colon cancer. It took 18 months for him to get a specialist referral after he first consulted his GP for his symptoms, but he persevered because he knew something was not right, and that the symptoms he experienced matched those of his older brother, who had developed colon cancer before him.
Bill thinks that people with a mild decrease in kidney function should be informed by their GP about their condition. He strongly believes in taking responsibility for his own health and would like to know more information about the severity of his kidney problem and whether there is anything else he can do to help himself.
Bill doesn’t feel particularly affected by his various health conditions and feels well most of the time. He has a fairly busy schedule, looking after his older siblings and going out socialising on the weekends. He likes to keep fit by going for walks in the nearby parks. He does not smoke, drinks only occasionally and tries to eat a healthy diet, but would find it helpful to have more support with how best to lose weight.
Bill was first told 12 years ago that his kidneys weren’t working properly; although he has regular blood tests for his diabetes, his kidney function hasn’t been mentioned again until recently.
Bill was first told 12 years ago that his kidneys weren’t working properly; although he has regular blood tests for his diabetes, his kidney function hasn’t been mentioned again until recently.
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Yeah
So, just tell me please in as much detail as you can remember exactly when kidneys were first mentioned by your GP…
Phew [exhales]
…and what they told you, what tests you had, what explanations you were given.
I really I can't remember …the first time they told me. It must have been quite a long time ago; …it must have been about twelve years ago or something like that I would think. And they just told me that my kidneys- my kidneys weren’t functioning properly and I went back, had more blood tests and when I rung up to find out about the blood tests they said, "Oh it’s - everything's fine," and… everything's been OK until this last time when I've had to go back again and have the, you know, have another blood test done. …And now I'm just waiting for the results of that.
So… I don’t…as I said I don’t really know, nobody's ever explained to me what is really wrong.
So when, twelve years ago, you were told “they're not working properly”, can you remember who told you?
My doctor, my doctor. Because then at one time we used to go and see the diabetic…we used to go and have our bloods done, then we used to see a diabetic nurse which checked, and then we'd have to go and see the doctor.
And the doctor told me then that… my kidneys weren’t functioning proper.
Do you- can you remember at all what kind of questions you asked at the time?
I really don’t think I asked any questions about it because I wasn’t – I wasn’t too sure what it was all about.
[laughs] And what happened next then – did you have further tests?
I- Sort of - I just went back and had my… every six months I go and have the tests done – my blood sugars done – and they tell me then whether it's…if there's- and, you know, they never said anything about it again after that until this time.
Was it the same doctor you saw afterwards who then said “everything's fine”.
Usually yeah, yeah, yeah.
Bill feels worried about his diagnosis. His older brother had to have a kidney transplant and he worries because their health histories are very similar.
Bill feels worried about his diagnosis. His older brother had to have a kidney transplant and he worries because their health histories are very similar.
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So… but I, you know… as long as I keep having… my blood test done and it comes back that everything is OK, I'm relying on the doctor to tell me if I need… to change a lifestyle or what I can do about it.
Bill receives a letter from his practice asking him to make an appointment with a nurse for his check-up, and while he is there they make a further appointment for him to discuss his test results.
Bill receives a letter from his practice asking him to make an appointment with a nurse for his check-up, and while he is there they make a further appointment for him to discuss his test results.
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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.
Bill thinks he should ask more questions of his GP. A patient.co.uk leaflet sent as part of the research invitation was helpful, but he still has unanswered questions.
Bill thinks he should ask more questions of his GP. A patient.co.uk leaflet sent as part of the research invitation was helpful, but he still has unanswered questions.
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Nothing really. I've learned more from that leaflet that I had come from you [referring to Patient.co.uk leaflet on mild to moderate CKD that GP sent out together with the study invitation], than I have from anyone in the surgery.
Right
In the doctor's surgery.
Have you ever requested any additional information?
No. Perhaps that’s my fault; I should have asked a lot more questions.
Do you feel able to ask questions of the doctor or nurse?
I think sometimes it's which doctor you see. I think you have more confidence in some of them than you have in others.
I've never been told how bad my kidneys are.
Mm
I'm not sure whether I'm a low sort of category one, or a medium or a high category.
Have you been told about different stages of kidney disease?
No. …No I haven’t been told, some- as I said, I've learnt more from that little pamphlet there.
And there isn’t a lot in it is there?
No! I've learnt more from that than whenever I've been to the doctors.
Mm oh hang on, so you have got the Patient Co UK, so who gave you that?
That come from you
No.
No, from the doctors, that come from the doctors.
OK?
That come from the doctors.
How did they give that to you when you saw them or did they say…?
No it come through the post.
Together with the invitation for the study?
With the invitation and I filled the invitation out and sent it back, the invitation to you, and I kept that and it was funny, when you rung me up I was sat down reading it. Because I couldn’t find it and I did have it, it was over and amongst the paperwork over here.
Oh, I see that’s what they’ve done.
And so I was just reading it a bit. I had read it about three weeks or more ago.
Mm
And then I picked it up again and I was just going through it and I went through it more thorough and …. there was more information on there than I've ever had.
So this is the Patient Co UK leaflet?
Yeah, yeah.
And can you remember was there anything in particular that stuck in your mind that your learnt that you didn’t know before?
It was the thing that I didn’t know about proteins.
Mm
In your… you know, why it does go through our kidneys and what you can have in your water, and I never knew any of that.
Mm
The same as I said, I knew that your kidneys were a purifying system for the body.
Mm
And it's not like the liver, you understand that renews itself, but with the kidneys they don’t, they just either get worse, they don’t get better.
Mm. …Yeah so that’s your understanding that they don’t get better regardless of what you do?
Yeah. what happens or you can't…I think sort of they may be able to give you some sort of medication that helps it.
Hm mm
And this is what I said – should you be drinking lots of- of water? So that it either flushes through your kidneys, makes them flushes them out more, but I'm not certain about it.
So is there anything in relation to kidney checks or the kidneys themselves that you feel you do not know as much about as you would like to?
[Sighs] ...I think …I would like to know more of what is wrong or… why the kidneys are going wrong… but I'm not sure how to ever go about it you know, how to… ask questions or… I just- I just don’t know enough about it.