Jim B

Age at interview: 70

Brief Outline: In 2005 Jim B was told by the renal unit he had a damaged kidney. When his condition stabilised he was transferred to the care of GPs. Despite test results showing chronic kidney disease that was worsening, he was not told that his kidney function was a cause for concern until 2011 when it had reached stage 5. He is currently having peritoneal dialysis from the renal unit pending a kidney transplant.

Background: Jim B is married with two adult children. He is a retired local government officer. Ethnic background: White British.

More about me...

Jim B first became aware that he had a kidney problem in 2005 after he lost vision for a few minutes and the ability to string a sentence together. He had various tests done and the doctors suspected he had experienced a transient ischaemic attack (TIA). The test results also revealed that he had high blood pressure, high cholesterol levels and a trace of blood in his urine. He was referred to the renal unit where he was given a diagnosis of ‘a damaged kidney’. Jim B attended the renal unit for regular monitoring for about a year and was then discharged to the care of his GP.

Jim B attended the GP surgery for a check-up every few months involving blood pressure checks and blood and urine tests with a nurse and a consultation with a doctor. He also monitored his blood pressure with a home testing kit. From 2008/9 test results began to show a deterioration in his kidney function and it was stated on the result forms that he should be referred to the renal unit or that he should see a doctor, but he didn’t know this at the time and he was not referred to a renal specialist until 2011. Furthermore he does not recall ever being told until 2011 that he had ‘Chronic Kidney Disease’(CKD) or that his kidney function was a matter for concern, although one of the GPs has since claimed he had explained it to him earlier when his condition had reached stage 4. Jim B had seen a variety of different GPs at the surgery and during this period his only concerns had been what he thought was a prostate problem that caused him to need to go to the toilet more often than before, and dealing with his blood pressure and blood in the urine. At the time he was taking a commonly prescribed ACE inhibitor for his blood pressure, as well as looking after his general health by taking lots of exercise, watching his diet, doing Qi-Gong and other exercises, and meditating.

Jim B’s referral to the renal unit in 2011 came about after consulting one of the GPs in his practice about worsening prostate symptoms. The GP told him that he did not have kidney disease but his prostate condition should be investigated. After having blood tests done he was called back urgently and told his potassium levels were too high and he should see a renal specialist. Jim B and his wife were very shocked to then be told by the consultant that he had Chronic Kidney Disease stage 5 and the treatment options open to him were either palliative care, dialysis, or transplant. At first he chose palliative care because he did not understand that this was not designed to improve his kidney function, but after the doctor explained things to him in more detail he opted for a transplant instead.

Jim B was immediately taken off the blood pressure medicine because it appeared to be damaging his health. He managed to maintain his health reasonably well for 18 months without use of a blood pressure pill, and ultimately two and a half years while waiting to get onto the transplant list and for a suitable kidney to come available, but when his kidney function dropped dangerously low he was put on automated peritoneal dialysis at home. This involves a machine filtering his blood during the night via a permanent catheter inserted into his abdominal cavity. He has also had to cut certain foodstuffs out of his diet, which his wife takes charge of. He has resumed taking a different blood pressure tablet and various other medicines. His wife has offered him one of her kidneys, has been tested as to her suitability, and they are waiting for a decision.

Jim B requested copies of his records from the GP surgery and became angry when he discovered how much had been known about his kidney function between 2005 and 2011 but not shared with him at the time. He decided to move to a different practice at that point and has been happy with the support from his new GP since then. At the same time he entered into a dialogue with the old practice with the aim of helping them to improve how they dealt with patients. However, he has been disappointed by what he regards as their inadequate and tokenistic acknowledgment of their mistakes and their apparent unwillingness to listen to his suggestions for service improvements. He is also dissatisfied by being told by one of the GPs that if he had been referred to the renal unit sooner his management would have been no different to what it had been in primary care. Jim would have liked to have known about his CKD earlier so that he could have made crucial decisions about how to manage his condition at a much earlier stage.

Jim B, who is waiting for a kidney transplant, recalls various GPs at his surgery mentioning that he had ‘kidney damage’ but he never realised that this was called CKD or that it had become more serious until he was referred to the renal unit.

It is fair to say that at one point I did have one interview with one doctor who I was never able to follow what he was saying to me very clearly. And he insists that I was told, this would be about 2010, 2009, 2010, he insists that I was told that I had CKD. And he insisted that he told me what CKD was at that interview. Now as I’ve already mentioned, I was focused all the time on my blood pressure and my, blood in the urine. And so whenever I had meetings with doctors that is what I wanted to talk and what I took away from the interview. So he says that he told me all about CKD and he told me that I was on, I think level 4 by that time. But I came away from the interview certainly not knowing that I had CKD and still thinking I had a damaged kidney but also not knowing that my damaged kidney was a concern. So either I wasn’t listening to him or he didn’t, didn’t actually say what he claims he did say. And I’m pretty good at listening to people.

So we then go through to 2011, I still have no idea that I’ve got CKD. I don’t even really know what CKD is. I know I’ve got a damaged kidney but since no one whenever I’ve been to the doctor has ever talked about a damaged kidney, all we’ve been focusing on actually by then was my prostate, which I’d had quite a lot of work on. I’d also one time talked about in-growing toenails and various things that I’d been to the doctor about and they never brought up your kidney.

So then I’d had that interview with the doctor who was unsympathetic to me and claims that I was told that I had CKD. But then other times I would see other members of the practice and that actually I thought was very unfortunate in my case. I needed to have the personal attention of a particular doctor who knew my condition and that is what I didn’t get. So what I had was a new doctor each time, who would rely on my records. So this new doctor that I saw in 2011 referred to my records, said, “No, there’s no indication of kidney disease. It, it is your prostate we must get some tests.” And then I can’t remember exactly the sequences, this again, my wife would remember exactly the sequence.

But anyway the end result was he took some blood tests, got the results back from the blood tests and then phoned me very urgently and said, “you must come down straightaway, your, I think my potassium levels are sky high and I’m really worried, you know you must”, well he didn’t say that “but I’m really worried”, you know he still didn’t tell me I had CKD. And so I think I was in a, I think I got referred to the renal unit. That’s right I got referred to the renal unit. And I went in finally to see a consultant or very quickly to see a consultant. And he said, “You’re, you’re CKD stage 5.” And I didn’t know what that was. And he then explained what CKD was. And I said, “Well what you know what, what treatment’s involved?” And he said, “Well there are three options, you can have palliative care or you can go on dialysis, or you can have a transplant.” And I was thinking ‘well I don’t, certainly don’t, I don’t want all these medical interventions’.
 

After his kidney function stabilised Jim B was discharged from the renal clinic to his GP. He was unaware that his kidney function was still a concern and sometime later it deteriorated to a point where he needed specialist care.

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.
 

Jim B regularly uses a home blood pressure monitor and finds that whenever he has it measured at the GP surgery or the renal clinic the figures are higher because he is less relaxed.

You can scarcely get in the door of, without them testing your blood pressure. And my blood pressure always went up [when I was tested at the GP surgery]. It was always very variable. And I was in any case, I had, I don’t know when I had had a monitor, a blood pressure monitor of my own, so I knew my blood pressure. I’ve got a book of my blood pressure going back years, way before I knew I had kidney disease. So I was doing that every day. But yes I do, I do find the taking of blood pressure in the GP surgery and also in the renal unit problematic because in the renal unit they take your blood pressure as soon as you, you know, they shout out your name, you walk in and your expectation is raised because, one, you don’t know if they’re coming out to shouting your name, so when they do. And then you go in and you’re immediately plonked down and they take your blood pressure. The blood pressure’s really high or in my case it is. And then when you go to the, into GP’s surgery it wasn’t quite the same. But you’re not really in the relaxed state you need to be in when your blood pressure’s taken. And when you’ve got a very variable blood pressure as I do anyway, I wonder how valuable a lot of the time that reading is.

Jim B, who is waiting fora kidney transplant, thinks with hindsight there is not enough emphasis in primary care on what people can do to maintain their kidney function.

I don’t think there’s nearly enough emphasis placed on, on the things that you can do for yourself to maintain health, and to reduce the rate at which your problem occurs.

So do you think it’s something that you should have been advised to do earlier?

Well the GP surgery certainly didn’t talk to me about any of these things. And, you know, apart from the usual five a day that sort of thing you know, nothing.

Hm.

But certainly with, once we got, once we were under the care of the renal unit, which, of course is why we should have been under the care of the renal unit earlier, the nutritional advice was sound. And I still I say, we started on it, under [name], my wife’s direction, very early on. And so, I don’t remember finding it too difficult to follow their advice.
 

Jim B chose to manage his health problems through diet, exercises and a healing type of meditation learned from a Chinese medicine practitioner, alongside conventional medicine, but this caused conflict with his doctors.

And one of the things that my, my wife and I have been interested in for a long time is alternative medicine. Not because we’re nut cases, not because we’re, you know, completely into living an alternatively but because we haven’t always found the treatments available to us on the Health Service effective, so we turned elsewhere. And also because we didn’t actually find in the interviews that the GPs provide necessarily the level of interest in us as people that when you go to an alternative practitioner particularly the one that we did go to they were shown. And so we actually found from a man in Chinese medicine that he was able to sort out problems that [my wife] had, problems that [my wife’s] friends had, and also problems that I had over a number of years prior to 2005. When he’d particularly, I have chronic headaches for about four or five years, I got a job when I was working here in, where I live now, I started to get these, these headaches every afternoon.

And then when I went down to London they got worse and also I started to have a prostate condition. Anyway, through various ways this man this practitioner treated me. And in the end after about four or five years - because it’s always slow, you know it’s not a, not invasive, the invasion it’s actually, it’s working with the body to try and generate a curative response from within the body - the headaches went. And I am completely convinced that it was due to the treatment. So I was confident in that treatment. But I had, because I’m a very open person, I had actually talked to the, well both to, at the renal unit and in the, in meetings with the doctors in the surgery. I explained to them clearly that I was, you, I was occasionally using alternative medicines. Now that went down extremely badly in the renal unit and went extremely badly with the GP.

And yet I remained confident and optimistic that I could maintain my health by not doing, as so many people at my age will do, that is relying on, on prescribed medicines, you know, I didn’t want to do that. And so in dealing with blood pressure and in dealing with the blood in urine, but more, most particularly with blood pressure, I was very keen to do that through exercise and through diet and through meditation and through all various things. So there was a conflict that particularly with the doctor who says that he told me about CKD because he was very opposed to all of, oh to that way of, well, to that alternative medicine. And I used the word, in fact, I said alternative and I found that’s the wrong word to use, it should be complementary because of course it wasn’t alternative, it was complementary. And it was always complementary. And I never went exclusively to ooh to the one, I used both. But of course western medicine wants to be exclusive and wants to actually dismiss these alternative, the, the alternatives which are also complementary.