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Bernard and Shelley

Age at interview: 79
Brief Outline: Bernard has mild diabetes and heart disease and had a bypass operation 5 years ago. Shelley has osteoarthritis, insulin-dependent diabetes and Charcot’s feet. Both had been monitored for mild kidney impairment. A few weeks ago Bernard was admitted to hospital with pneumonia and his kidney function rapidly declined.
Background: Bernard and Shelley have been married for 42 years. They live by themselves and care for each other as best as they can. They met while working for the NHS; Bernard in the maintenance department and Shelley as a psychiatric nurse.

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After he had been recruited for this study on the basis of having a mild kidney impairment, Bernard contracted pneumonia and was admitted to hospital, where he had to stay for a month. During his hospital stay, his kidney function declined rapidly. He was interviewed one week after returning home from hospital.

Bernard says he has enjoyed good health for most of his life and likes to stay clear of doctors and hospitals if he can. His wife Shelley, an ex-psychiatric nurse and social worker, takes care of health matters for both of them.

In 2000, Bernard had a mild heart attack. He was prescribed medication but he did not feel affected by it in any major way. However, around five years ago his heart rhythm started to fluctuate. He was admitted to hospital and eventually had a bypass operation. Three years ago, Bernard was also diagnosed with Type 2 diabetes, but he has not needed any medication for it and now is no longer supplied with tests sticks either, so it does not really affect his day to day life. Bernard currently takes bisoprolol, aspirin and simvastatin. He also used to take amiodarone, but since his recent hospital admission for pneumonia, he has stopped amiodarone and started taking furosemide.

Shelley also has Type 2 diabetes and she and Bernard attend their 6 monthly GP check-up appointments together. Shelley also sees a hospital consultant once a year. Shelley’s diabetes is more severe and much more long-standing than Bernard’s and she has developed Charcot’s foot in both her feet. (Charcot’s foot is a progressive degenerative condition that affects the joints in the feet and occurs as a consequence of peripheral neuropathy, i.e. nerve damage in the extremities). This means Shelley can’t wear normal shoes and finds it very difficult to walk about. She also has osteoarthritis in both her knees.

When Bernard was well, he used to do the cooking, shopping and housework. Shelley is angry that when Bernard was assessed for his support needs before discharge, the occupational therapist did not take into account that he used to be Shelley’s main carer as well. Now that he is weakened from the recent infection and needs to rest, they rely on the support of friends and neighbours to manage somehow. They are currently waiting to have a ‘home from hospital’ social services assessment to try and get additional support with practical tasks. Shelley contacted the council to ask for ‘meals on wheels’ on a temporary basis. She also wears a CareLink necklace to call for help if she should fall over and they have had a key safe fitted to the house so helpers can enter without them having to come to the door. They would much prefer to manage independently but realise that at the moment they need outside help.

Bernard and Shelley have routine kidney checks as part of their diabetes clinics. Shelley usually asks about test results for both of them. Shelley and Bernard were aware that Bernard had high levels of creatinine in his urine, but were told that these values were ‘normal’ for him. Before his most recent hospital admission, Bernard’s creatinine levels were around 150 but the infection in his body made it rise to 300. Shelley is confident to ask questions and seek out information whereas Bernard usually takes a back seat and trusts his wife to lead the discussion. They both found feedback on tests to be much more detailed in hospital compared to what they are told by the nurse at the diabetes clinic. Shelley and Bernard have had dietary advice and lots of leaflets as part of their diabetes care, but nothing specifically addressing kidney health. They eat a low-salt diet and Bernard does not drink any alcohol. After Bernard’s recent decline in kidney function, Shelley went online to find out further information about the symptoms of kidney disease.

Shelley regularly helps out with teaching at her GP surgery as a test patient for medical students and has found this to be a good source of information about health matters in general. It was during one of the teaching sessions that she found out that she herself also had a kidney impairment, when she overheard the GP explaining her case to a student. She was ‘shocked but not surprised’ because she knew that kidney impairment is a possible complication of diabetes.

During a home visit following his discharge from hospital that happened during a break in the interview, the GP explained to Bernard that his heart condition had resulted in excess water retention in his body. The diuretic (i.e. water-removing) tablets he was given to reduce the water retention had made his kidneys work very hard and as a result his kidney function had decreased quite rapidly. By reducing the diuretic medication (furosemide), his GP hopes that Bernard’s kidney function will start to show some signs of recovery. Bernard will continue to have close monitoring of his kidneys with frequent blood and urine tests over the next few weeks.
 

When volunteering as a case study, Bernard’s wife Shelley was horrified to overhear a GP telling his students that her kidneys were damaged when she had never been told.

When volunteering as a case study, Bernard’s wife Shelley was horrified to overhear a GP telling his students that her kidneys were damaged when she had never been told.

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And for you [addressing Shelley], when you ask information from doctors at the hospital or at the GP’s surgery, do you actually tell them that you’ve got a nursing background?

Shelley: They know, actually, because I- I do I’ve got …., my diabetes, I’ve got certain, [pause 2 sec] I can’t think of the word now.

Bernard: Charcotic

Shelley: Yes, I’ve got trouble, I’ve got diabetic feet.

Yeah, yeah.

Shelley: And they use me, at the doctor’s surgery, for medical students.

Right.

Shelley: So I hear quite a lot of information there as well with the medical students asking the GP… about my particular condition with my feet.

Yes.

Shelley: And quite a bit of information comes out.

Right.

Shelley: And that’s when I first learnt I had kidney damage. Because the GP was talking to the medical students.

Oh right, so you kind of overheard him giving…

Shelley: I did, yes, and I was quite horrified. Because I didn’t realise that I did have kidney damage but I’m not so advanced as my husband.

And what was it like for you finding out in that way of the GP telling another student. Can you tell me a little bit more about how that interaction went?

Shelley: Well, I was a bit shocked to hear it. But then I know that it is a complication of diabetes. I mean the eyes and the feet and the kidneys.

And I’ve got the eye problems and the feet problems so invariably, I knew I would get kidney problems. So I was… a little bit shocked but not surprised.

And did you have any questions at the time?

Shelley: Well, I wasn’t in a position. I was [laughs] I was the model. I was the guinea pig so I overheard what was said, naturally, but I didn’t question it, which I suppose I should have done, at the end of the session.

Did you go back and ask questions at a later time?

Shelley: No, as I said, I asked my consultant at the next diabetic clinic, because I’m seeing I’m seen six monthly at the hospital. And six monthly at the doctor’s surgery. Because I’m on insulin I suppose.
 
 

Bernard doesn’t know why his kidney function should be impaired, but his wife, who has a nursing background, suspects it is to do with ageing, not helped by his diabetes.

Bernard doesn’t know why his kidney function should be impaired, but his wife, who has a nursing background, suspects it is to do with ageing, not helped by his diabetes.

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And what are your ideas about what has caused you to develop problems with your kidneys?

Bernard: I’ve no idea. I haven’t got a clue! Apart from the fact that, according to the wife, I don’t drink enough but in terms of alcohol and all that sort of thing, which I would expect… to have a little bit of trouble with, I don’t drink.

You don’t drink any alcohol at all.

Bernard: No. So… why they should be as they are, I’ve no idea.

And what about you [addressing Shelley]? What are your ideas about why he has developed problems with his kidneys?

Shelley: Well, the diabetes doesn’t help, although he’s not on any treatment for diabetes. I just think it’s his organs are wearing out. Due to his age. But anything more technical than that, no, I don’t know.

And are those the kinds of questions that you have discussed with either the nurse or the doctor? Have you asked questions about why it might be that you have developed kidney problems?

Shelley: No, not really.

Bernard: No.
 
 

Bernard knew his kidney function was being tested with blood and urine samples as part of his regular diabetes check-ups; he doesn’t mind having tests done.

Bernard knew his kidney function was being tested with blood and urine samples as part of his regular diabetes check-ups; he doesn’t mind having tests done.

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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.
 
 

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

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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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.
 
 

Bernard and Shelley have not been told what signs to look out for of worsening kidney health, but Shelley has looked for information on the internet.

Bernard and Shelley have not been told what signs to look out for of worsening kidney health, but Shelley has looked for information on the internet.

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And are you aware of any other symptoms that might be an indicator of the kidneys not working properly?

Bernard: No.

It’s not something you’ve been told?

Bernard: [to Shelley] you know of anything like that?

Shelley: No, well, I know… I know what means, passing of urine you mean, do you?

I’m not, on the, I’m not testing you for anything [laughs]

Shelley: No, I know.

I’m just interested in your ideas. So any changes in the urine would be like a warning signal to you.

Shelley: Well, not urinating frequently enough. And being thirsty. A thirst as well. His skin is very, very dry. His skin is very, very dry. Whether that’s anything to do with the kidneys?

But again, it’s not something that you’ve received information about from health professionals.

Shelley: Not really.

Bernard: No.

Shelley: With the i-, we’ve got, use of ipads. I have researched some of it.

Right. That’s interesting. What kind of information have you been…?

Shelley: Well, most of the things I’m saying. Really about the dehydration and.

Yes.

Shelley: Infrequency of passing urine… things like that.

And can you remember where you found that information? What did you search for?

Shelley: …Kidney disease. I Googled it. Yes. Just put in kidney disease.

And can you remember, were there any particular websites that you found helpful or more helpful than others?

Shelley: Not really. I didn’t go into it too deeply. I just did a general Google search to see what they said.
 
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