Sarah

Age at interview: 77

Brief Outline: Sarah learned she had chronic kidney disease stage 3 after requesting printouts of recent routine blood test results. She felt angry that her GP had not told her about this and although later advised not to worry about it she feels a need to know more.

Background: Sarah is a retired physiotherapist and looks after her husband who has been seriously ill with cancer but is now in remission. Ethnic background: White English.

More about me...

Sarah has experienced chronic back pain for several years, which she attributes to general wear and tear associated with her career as a physiotherapist and her gardening hobby. She has a painful right foot after bunion surgery four years ago. She takes thyroxine for an underactive thyroid gland and has a blood test to check her thyroid hormone levels once a year. She has low blood pressure and high cholesterol but has declined to take statins because she believes the harms outweigh the benefits. She feels tired a lot of the time and that tiredness is increasing. She looked after her husband for three years while he was treated for cancer but has to help him less now that he is in remission. They have some help with gardening and other household tasks.

A few months ago Sarah had two kidney infections one after the other, which were investigated with blood and urine tests. She had a kidney scan and was treated with antibiotics. After this her chronic back pain seemed worse so she asked for a referral to a specialist. She asked for a copy of the referral letter and any recent blood test results. She was amazed to see a comment on the blood result form from her last test six months ago saying, ‘Please inform patient CKD stage 3’. She knew that CKD stood for chronic kidney disease, and was angry because she had not been told about this by her doctor.

She went to a walk-in casual clinic to ask her GP about this, who explained that CKD affects many older people, that it was nothing to worry about and that she hadn’t been told because there was little they could do about it anyway. Sarah felt reassured for about 10 minutes but then decided she needed to know more about it, so she contacted some of the kidney charities for information. She wants to know what she could do to help prevent it progressing to a serious condition, whether she should adapt her diet, see a kidney specialist, or ask for regular tests. Sarah suggests that she might have felt more reassured if the GP had invited her to make a longer appointment to discuss the kidney problem and how it should be managed.

Sarah was prescribed anti-inflammatory drugs for her back pain but has since learned from the charity information that such drugs are not recommended for people with kidney problems; she now takes paracetamol and aspirin instead. Her pain is preventing her from being as active as she would like, so she is concerned that she is becoming unfit and that her health is ‘crumbling’. She likes to be proactive about her health, so is trying to investigate what can be done about her various health problems.

Sarah was amazed to learn from a copy of her hospital report that blood tests had shown her to have CKD stage 3 several months earlier. Her GP had not informed her yet.

Well I have been looking after my husband for some years. He has been ill and so it’s been quite a stressful period. And I have managed to keep going quite well but now I have some back problems and some other problems and I had kidney infections in the summer and went to the GP who gave me an antibiotic. I thought it was very clever of her to sort out that I’d had a kidney infection, because I’ve had no symptoms other than a high temperature and being quite ill over the weekend. And then a month later I had another kidney infection and was given another antibiotic and improved and got much better, and then my back problems got worse, so I asked for a referral letter. When I went for the referral letter, a copy of it - because I like to get copies of referral letters and tests - I asked for copies of my last blood tests as well. So when I looked at the Path Lab report, the copy of my blood test, I was amazed to see a comment saying, ‘Please inform patient CKD Stage 3.’ So I thought chronic kidney disease Stage 3, that’s a bit extraordinary. So I thought I must see the GP straight away and see what is going on. And the blood tests were done in June and this was well into the autumn.

Sarah said she was ‘cross’ to find out her diagnosis of CKD from a copy of her test results that had been sent to her GP six months previously with a request to ‘inform the patient’.

You said when you first saw on that Pathology Report, ‘CKD’, is that what it said, ‘CKD’ rather than ‘chronic kidney disease’.

It said CKD, yes.

So how did you know what that meant?

From my medical background.

You already knew what ‘CKD’ was.

But I didn’t know what ‘Stage 3’ was. I didn’t know how the stages went, so I looked into that to find out the different stages and the different levels. So I did a little bit of investigation then.

How did you feel when you found out what it meant?

Cross, because I hadn’t been told, and that was in the summer and… And when I asked for my medical referral letter as well, a copy of that, I was given my past history which goes with referral letters, and I did see in the late 2000s, I’m not quite sure which year it was, that it mentioned kidney failure there. And I thought, well I have never been informed of this. So whether that was a financial decision from the practice or whether it was a, what decision they made or whether no decision was made, it was just a passive thing that was on my record and there it was.

Did you tell the GP you felt angry?

Well when I first went to the casual surgery I said, ‘What’s this? I haven’t been told. What am I going to do about it?’ And I was just told, ‘Be reassured that it’s quite common and don’t worry about it.’

But you didn’t feel reassured?

For 10 minutes I was [laugh]. Yes. And then as I drove home I thought, ‘No I am not reassured. I’ve decided I am not’ [laugh].

Why do you think GPs might be reluctant to disclose this information to people like you?

Well if there are a large percentage of people with kidney disease, early stages in older people, then I imagine it’s a financial burden if they are going to test all old people, people over 50 or 60, so there are financial implications, there’s time implications. They are very busy already, GPs, so if they have 10%, 20% of the elderly population going in asking for regular blood tests it’s going to be quite a burden. So I have to decide whether I am going to be a burden or not.
 

It took Sarah longer than average to fill her bladder in preparation for an ultrasound scan of her kidneys; the sonographer asked her twice to return to the waiting room.

Well I thought there was something wrong because she had tried to do it about three times, because I had to drink a lot of water, as you know, beforehand. So about 7 o’clock I drank all they suggested, went to the hospital. They weren’t in much of a hurry, so I was getting a bit cross. But eventually when she started the scan she said, ‘Your bladder hasn’t filled enough. Have you done what we asked you? ’ She was a bit stern, and I said, ‘Yes I have done what you asked me’. And so she told me to wait a bit longer in the waiting room for 20 minutes, drink a bit more, and then when I went back she still couldn’t do it. She said, ‘It hadn’t cleared into my…’ whatever it was, for my kidneys, and she was extremely nice then and said, ‘Would you mind very much waiting a little bit longer. This is not working. It’s not satisfactory. We’d like you to wait a little longer, and are you comfortable?’ And she was very solicitous then and very nice. And I said, ‘Does this happen often?’ And she said, ‘Oh sometimes’. She said, ‘One lady a few weeks ago we had to wait two hours’. So I said, ‘Well isn’t that an indication of something wrong?’ And she said, ‘Not necessarily’. So when I asked the doctor, they said, ‘No some people are just like that’. But I just wondered.

You thought it was an indication that your kidneys were working slowly or something?

Yes I thought there was an indication but they said it wasn’t relevant at all, when I questioned them. So maybe that’s an area for research.
 

Sarah goes to the phlebotomy clinic at one of two hospitals near to where she lives where she can have a blood sample taken while she waits and more quickly than waiting for an appointment at the GP surgery.

We go to the hospital here. If we have transport we can go straight to the Path Lab at the hospital.

Oh really

It’s quite open. It’s very good. If you choose the right time of day and there are not clinics it is excellent either at two of the local hospitals we can just go to the Path Lab. Sometimes wait a long time. Go and have a cup of coffee. They are very, they’re very good. They will give you a number and they say, ‘Come back in an hour’. Or if you choose the right time you can have it done within 10, 15 minutes. Very good service around here for that. Otherwise for elderly people or people who haven’t got transport you can have an appointment with the phlebotomist at the GP Surgery but that can be one or two weeks late, you know, later on. So if you have transport it’s very good, the service.
 

Sarah thinks it’s a good idea for patients to keep copies of their medical notes and test results and thereby take responsibility for their own health.

Because it was when I went to ask for the referral letter for my back, or was it my foot? And I said could I have, ‘Could you please print off all my last blood test reports and the referral letter and any recent things?’ So they printed that off for me. I don’t know if they can refuse, can they? Because usually when I ask, they print things off. Sometimes the receptionist disappears and I’m never sure if she goes to see the duty doctor. But that would be quite an interesting thing to know, because I think everybody should have their own… all their results. And I think in America they did a study about patients having all their notes, and they actually, people looked after their notes better than they do in hospital, because a number of times they couldn’t find my husband’s notes and he’d been admitted two or three weeks before, and I went round A&E and the wards trying to find his notes, and once or twice I’ve actually found them. So I’m quite keen that people should maybe have their notes. So that’s I think important, because people do look after them. And then people can look after their own health as well as the Government are apparently telling us we should do.

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.

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.
 

Sarah learned about her CKD in a casual GP appointment where time was limited and she did not feel reassured. She would have liked the GP to suggest a follow-up consultation to discuss it in more detail.

How do you think doctors can reassure people, because it seems to me that anytime they say, ‘Don’t worry’, the first thing you do is worry?

That’s right. So I think the response perhaps should be, ‘Yes I can understand that you are worried but we will keep an eye on you and there are certain things that we can do. So I haven’t got much time now, so how about making a proper appointment and we’ll talk it through and then we will see perhaps about getting you some regular blood checks or something like that. And then I wouldn’t have gone home thinking, ‘No I am not reassured. I would have thought, right well let’s think of the next appointment. I must find out about this and then I can ask some questions and see what the plan is for the future.

But it is very difficult for GPs if they have got short appointments, which most of them have, particularly if it’s a casual surgery. They’ve got, there were hundreds of people pouring in for casual surgery, a few doctors to see all these patients within an hour, so it is very hard for them. But I think that’s, maybe if I had been a GP, or maybe you can’t do that with all the patients, otherwise you’d be working day and night, but I think I would have suggested another appointment a few days later or when convenient and then talk it over.
 

All Sarah had been told by her GP was that most older people have mild kidney impairment and not to worry about it.

So I went to casual surgery - because we have very good surgeries between 8 and 9 and anybody can go with an urgent problem - and the GP just said, ‘Oh you are older. Most people have this. Don’t worry about it. Let me reassure you it’s not unusual. I’ve probably got some too. Let me just tell you not to worry about it’. And so I went home reassured for 10 minutes and then I thought, ‘No I am not reassured’. So I wondered what to do. So I decided to get in touch with the two kidney charities, who were extremely helpful, talked to me for quite a long time about kidney disease, very supportive and they’ve sent me some literature and that’s where I found the advertisement about this research study. So that’s helped a great deal and I still don’t know a lot about, very much about kidney disease.

So have you been back to the GP since then and spoken to them?

Yes I have about my back problems and another GP and they just suggested that it wasn’t unusual for somebody older to be in Stage 3 kidney disease. So I am still a bit concerned and feel that I should investigate quite a lot more.