People’s ongoing information and support needs
• what they could do to prevent their kidney health from becoming worse;
• causes, symptoms and treatment options if their kidney health should deteriorate; and
• help with understanding the clinical measures of kidney health (see also ‘Receiving and making sense of test results’).
Some people, such as Bill, hadn’t thought much about their kidney health before taking part in an interview, but said that the process of talking about it had made them realise that there were questions they would like to seek answers to when they next saw a health professional.
- Age at interview:
- 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.
So… what kind of information have you been given specifically about the kidneys? it might have been as part of your general diabetes information?
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.
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.
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, from the doctors, that come from the doctors.
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.
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?
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.
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.
The same as I said, I knew that your kidneys were a purifying system for the body.
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.
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.
People recognised that getting information from health professionals is a ‘two way street’ and that sometimes people’s information needs around kidney health had not been met because they had not asked questions during a consultation. Pat commented that appointments could feel time-pressured, especially if there were a lot of other health issues to discuss alongside kidney health. Some people also said that they just weren’t ‘the type’ or did not feel confident enough to ask questions of a doctor.
- Age at interview:
- Pat worked as a Health Services Assistant until she had to take early retirement in 2007 due to ill health. She lives with her husband. They have 3 children and 6 grandchildren. Ethnic background: White British.
Do you feel in any way reassured by having the tests?
Well I did, but …nobody tells you nothing so I'm going to… I think I'm going to make a little list. …I realise that I've been letting them sort of- but that’s me. I think I've perhaps been letting them walk all over me. I'm going to make myself a little list …and I'm going to say, "Well …blood test – right what's happening?" and I'm going to start questioning.
I think I need to question people. About- because it is my health in the end isn’t it and I think I need to ask them. Instead of- I just need to ask them what they're going to do about it.
Or is there anything they can do about it.
And let me know what the results of tests- of tests that I have; it's no good saying to me, "Well yeah you're fine."
But the problem is you see when you go to the doctors you're allowed each patient, five minutes.
I thought it was ten, it's five, is it?
No, five. And the problem is …you’ve got to… when you're going, you save it all up to say little things that are wrong … and then you get there and you’ve got five minutes… I've got to ask, you know, I've got to think, what's most important.
And so I… so it might only be a little thing, might even be at the bottom because I've got to do the important things first.
A mild kidney impairment is common amongst older adults, so there was surprise about the small amount of written information on kidney health available from GP surgeries. There were a lot of questions about what people could do to help themselves, for example diet and whether eating particular foods might help to support kidney health. It was common for people to say that they would be willing to adjust their diet if it could help their kidney health (see also ‘Lifestyle changes’).
- Age at interview:
- Jim B is married with two adult children. He is a retired local government officer. Ethnic background: White British.
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.
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.
- Age at interview:
- Anne is widowed with four children. She is a retired administrator. Ethnic background: White British.
He showed me the laptop and there were, you know, columns and figures and that. But I’m sorry, I really didn’t take in what these meant and… I think it’s only since then that I’ve tried to find out more. But really, there’s a lot I need to find out more about. I’m pretty much in the dark. I feel that I’m pretty much in the dark.
What would you like to find out?
I think I would like to find out if there are things that I should be doing that would benefit me. As I say, I was given the idea about having a good level of fluids and, sort of, a sensible diet. But I don’t know whether there are other things that I should be doing. I don’t know what I don’t know [laughs]. That’s the problem.
So your GP hasn’t suggested that there’s anything you should be doing?
So have you been given any kind of information about chronic kidney disease, any written pamphlets or anything?
No, I haven’t.
Would you like to have?
Yes. I would.
What sort of things would you like to know?
What is the best way to manage your diet in the way that will benefit your, your kidneys? And are there any, sort of, perhaps, danger signs to watch out for when they might not be working well?
- Age at interview:
- Simon is married and has an adult stepson. He is employed by the local authority as a support worker. Ethnicity: White English.
You mentioned that you’d quite like more information about diet but you also told me earlier that you have been advised to do things that you’ve not actually…
Well, not necessarily… diet, but the things that can affect your kidneys in the normal course of what you eat and what you don’t eat. I mean for, on the, on the same level that because I take simvastatin, I can’t eat grapefruit. Because I take warfarin I can’t have cranberry and vitamin K in sprouts and vegetables and all the rest of it. What sort of things would help if you wanted to improve it, diet obviously, you know, eating more healthily is what I would like to do. And I’m not saying that I don’t eat healthy things now but, you know, there are things that obviously, can be done.
I’m not saying that I would say no to ever changing my lifestyle in that respect. I think that with me, it’s a case of either doing it very slowly or very religiously and very drastically, and I’m usually falling between one or the, one or the other. I mean, you know, I mentioned that that that it, the medication as well as the lifestyle has meant that I drink less alcohol now. And it’s a case of thinking, ‘Well, okay, if you do that and you have that, it will help’. So yeah, I am willing to. It’s just that when you get through this particular part of the year, we haven’t because we’ve been so poorly, but everybody eats such a load of old rubbish and it’s this time of year when everybody starts thinking, ‘Oh yeah, better get myself fit. Better get myself better food and everything else’. And we have, you know, last couple of weeks, but I think you can only really start eating better when you feel better yourself. I know it sounds funny but when you’re feeling like absolute rubbish you want to eat rubbish. Anyway, that’s very honest [laughs].
[Laughs] so you would like, I think, some more factual information about what foods have an impact on kidneys.
Rather than just being told to eat healthily.
Yeah, and the other thing as well, is, you know, people to tell you that as well. I mean my GP, has in the last few times, altered my blood pressure medication, and he said to me three or four times ago, “Yes, it would be good if you lost some weight.” But he only said it that time, and because he hasn’t said it to me since, [laughs] then it hasn’t been discussed. But then I think that’s me being naughty. I don’t know.
I don’t deny that food is one of the main pleasures of my life but I do understand what bad diets can do to you. So yeah, that would be very good. So no, attack it on both fronts just say, “Look come on, chubba. Get some weight off.” Or, “These, you know, are the things that it would be good if you could eat.” Or, “Eat less of these things.” You know, I’ve had it all for the warfarin , for the pulmonary embolism. So, you know, if I’d had more for that, then maybe that would have been good. So, yeah, get more in the future. Maybe I’ll consult my nephrologist when I see him.
- Age at interview:
- Lesley is divorced with two adult children. She has retired early from managing a charity shop due to the combined effects of several chronic health conditions, including fibromylgia, arthritis and ankylosing spondylitis. Ethnicity: White British.
So did any of the health professionals suggest that you changed your diet or was that something you did off your own bat?
I've done it on my own. All that I have done is on my own because I feel there's not any help, and the GPs – if you try to say, "Is there something I can do to help myself?" they seem to not want to talk about it as if it's all pushed aside, which I feel is quite wrong really because, you know, if you go in your doctor's surgery today you will see a lot of leaflets on heart disease, on I don't know, a various range of things, but you'll never see a leaflet on kidney disease or what your stage… you're supposed to feel fine because it doesn’t really exist to them, but it does and you do get symptoms and, you know, I don't why they don't know that you do, I don't know. But I could sit and tell them that you do, and I would, yeah.
Mm so do you think you might go into it in more depth on a future occasion?
If I found the doctor was interested about it I would, definitely, but as to yet I haven't found that. I've found it's like push it away or, “Well we won't talk about that, what's wrong with you today?”, you know. But if I'm on a level with him and I can talk to him about it, and if I could ask him if I could see maybe a dietitian, which I have asked for before, which I did go, and when I got there the man that I saw said , I said, "Well I've come about… I've been diagnosed with CKD3 and I'd like some help on, you know, foods, of what to avoid and what to eat." He didn't have a clue, he didn't have a clue. He was telling me to go and eat all the stuff that I'd seen on the website that you shouldn't be eating, so I sat there in disarray thinking, 'Well this is a waste of time, I might as well just go,' and I didn't have any luck on that. But if this new GP I found comfortable and I did talk about it and felt he was listening, because I've never felt that they're actually listening , I would yeah, I would ask, “Could I see a dietitian?”, you know, although I know more about it myself now, but there still could be things I'm doing wrong. I'm not perfect at the diet, you know.
- Age at interview:
- Russell is a retired carpenter and joiner. He has been married to his wife for 60 years. They have 3 children and 7 grandchildren. Ethnic background: White British.
And do you ask your doctor or does he tell you about ways of keeping yourself healthy and well?
Well I don’t do anything that… I don’t do anything that would, really entail needing to do that because I don’t think that I do anything that is derogatory to health.
I try not to, put it that way, and so I wouldn’t have to ask the doctor about that.
But you did get told about keeping your fluid levels up. That was…
Yes because I think that… because down the road that if you drink plenty of liquids you're flushing the kidneys all the time aren’t you, you're keeping them clean.
And so it is… everybody emphasises, most of the medical profession and even you're told on… things on the television that drinking liquids when you're getting a hot day is essential, so we all understand that; if we've got any common sense we understand the fact that you should drink plenty of liquids anyway.
Every time you go and they say take… drink plenty of fluids but [coughs]…
And is that something that you make a conscious effort of doing?
Well no because I drink quite a lot tea anyway [laughs].
You think you'll be alright with that?
I don’t drink cups of tea; I drink pints of it [laughs]. It's, I suppose it stems from the fact that I did work for the… in the tea industry for seven and a half years on a break from normal job.
- Age at interview:
- Laura is a payroll manager. She cohabits with her partner and has no children. Ethnic background: White British.
But I think people are not told, are not told enough about their illness, enough to understand it, and how to maybe do something about it or to try to stop it getting worse if that, if you can. They’re just sort of given some pills and left to whatever really. Yes I would prefer it to be very different. And I think actually when I come to think about it would, it would save the NHS a lot of money if they helped people to understand their illnesses and try and do something to prevent it getting worse if they can. Whatever means that is, not just by taking medication, but by doing yoga or whatever. I mean yoga’s good because it can relax you and therefore your blood pressure will be lower and, you know, more exercise etc. etc.
So none of them have ever talked to you about your lifestyle and the things you might be able to do?
Actually my present GP has. And she’s got me, I can get cheaper membership to one of the sports centres here, which I haven’t done because they’re actually doing it up at the moment and I’m waiting for them to finish, and then I’m going to, I think I get cheaper membership for so long. I think I get something like 12 weeks with a, with an actual person sort of training me or talking to me, so yes, no she has done something, and she does actually ask about my lifestyle. And I think various nurses have asked about my lifestyle, yes, at some of the surgeries, certainly when I’ve joined. I think that’s getting better, and I think that’s really important that you take urine tests off people and, you know, and blood tests just to check people, because that’s how my kidney disease was found, instead of me just going to failure, which is what happens to a lot of people.
So when they’ve asked you about your lifestyle have they ever suggested any changes to it?
No, no. It’s been me that’s said, “Well should I reduce my salt? Should I drink less?” I’ve actually had one GP say, “Oh no, no, no just…”, you know, “Don’t worry about your drinking”. I think he must have been a drinker himself, because I think they should actually probably be saying to me, ‘No you should reduce your drinking; it would be a good idea if you did’. And the, yes, no, they’re not, they’re not talking about lifestyle, and I think, I’m really shocked about that actually; I’m really shocked that they don’t suggest that there might be things you could do that could help you not go to kidney failure, I think, or to change your diet in some way or, yes I think, I think it’s very, very important and would be so better for so many people.
You’ve picked up information about diet from the charity magazines that you get; is alcohol mentioned as a problem?
I don’t think so.
Because I think a lot of people make the assumption that it is but I’m not sure whether there’s any official information that says it is.
I don’t know. I’m assuming that it might well be because it’s a toxin in my body that my kidneys have to get rid of. So yes, I have to assume, yes I think you’re right, I don’t think anywhere, anywhere has stated that alcohol could be a problem for kidneys and that you should limit your intake in any way. I’m sure they do if you go to dialysis, because if you can only drink, is it two litres of water? I can’t remember how much it is, it’s a very small amount of water really, or liquid, not just water, liquid, then they’re going to say, ‘Don’t drink alcohol’, because you can’t, you need to have that liquid within your food that you’re eating.
- Age at interview:
- John X is a retired self-employed pest control technician. He retired 6 years ago due to arthritic pain. He is divorced, has 3 children and lives with his granddaughter. Ethnicity: British/Seychelles.
As you mentioned earlier on, I'd like to know if there is anything I can help myself with you know? Saying about fluids and that, you know, I should drink more water really but there isn’t any taste to it is there? [laughs] you know, it's pretty bland really, you know, I don’t…no. I mean you get water in coffee I suppose but coffee isn’t, you know… good all day apparently, I don’t know. But it's better than not drinking anything really, yeah.
What about the explanation “your kidneys are ten years older than you”. Did you find that helpful?
Well… it was mentioned at first that they are actually older; you know, “they aren't- they’re functioning as somebody older than you”. …So I thought “hmm... well that’s not good you know." But …I suppose I found it helpful when he said they're only ten years older you know. I thought, 'Well I suppose it could be worse, they could be twenty years older, thirty years older,' you know. …But I'd like to know if they could be maintained at that, you know, I mean it could stay the same, or if I can help myself, like I do with the drink.
You know do something else to help. I don’t know if there's anything I could take. You know there might be some supplement that’s … needed, I don’t know, but nothing's been mentioned on that so, you know, that’s…those are the sorts of things I'd like to know I suppose, yeah.
- Age at interview:
- Martin is a retired local government officer. He likes to keep active at the gym 3 times a week. He lives together with his wife, has one child and recently has become a grandfather.
Are there any questions in the area of lifestyle - I mean like, you know, it sounds like you are doing a lot of things yourself and you’re very educated through reading the- the papers and looking things up on the internet, but are there any particular things that you wonder about that you would like to know more about?
Not really, I don’t think. …No, I don’t think so. I think I think the information is there if you want it. You can- you can glean information from multiple sources really not, the internet, your doctor, specialists, even nurses, you know, I guess you can get information from so I think I think the information is out there and I mean there’s more information about these days than… [laughs] well, there’s too much of it really.
And what’s your understanding about the kinds of things that are likely to cause kidney problems?
[Sighs] …I don’t really know. …I think it’s the lifestyle to a degree could have something to do with it. But I mean I don’t know exactly what it would be- I mean I go out, I enjoy a beer. I was out last Saturday night. I had two, three, four pints even on a Saturday night. I drink a glass of wine with my meal occasionally and that’s about it! But I don’t over I don’t over indulge in alcohol but usually it’s the liver that’s the one they worry about with alcohol, so I- I don’t really know what causes the kidneys to pack up, other than, as I’ve already explained to you, I’ve got a history of taking all sorts of medication. Whether that, you know, can have an adverse effects, ultimately, on your kidneys, is a possibility and I don’t know enough about it.
To… I’m not one to go and research it really. I just rather, I’d rather rely on the professionals. You only end up worrying if you, you can convince yourself you’ve got everything if you look too much into it really. I just get on with life.
There were a number of unanswered questions concerning possible causes of people’s own kidney impairment (see also ‘Awareness of kidney disease and beliefs about possible causes’). Some had been told that their kidneys had been damaged by medication, whereas others suspected this to be the case but had not actually discussed it with their doctor. Simon had been told that the lithium he had taken since he was a teenager would have affected his kidneys. People with family members who had also experienced kidney problems often wondered about the existence of a genetic vulnerability in causing kidney impairment.
It was not unusual for people to worry about the possibility of dialysis when they were first told about their kidney impairment (see also ‘Thoughts and feelings at diagnosis’). There was a lesser degree of awareness of a mild kidney impairment as a risk factor for heart disease and stroke. Sometimes health professionals had been able to overcome people’s anxieties about dialysis and transplantation, but sometimes people said they had been too frightened to ask about their long-term prospects and possible treatment options. Anne and Joan wanted to know if there were any symptoms to look out for that indicated their kidney function was becoming worse.
- Age at interview:
- Elizabeth is a retired mushroom picker. She is widowed with three adult daughters. Ethnicity: White British.
Well I only found out about six weeks ago that my kidneys weren’t functioning properly. I take a tablet for my thyroid and they have kept a check on me but only about twice a year, until recently, now I'm having blood tests every other week, so I really don’t understand. I don’t feel well, I've got no energy, but I didn’t associate it with kidney. But apparently they’ve been keeping an eye on me for six years since I had my gallbladder out, so I don’t know. I don’t really understand how it can affect me if my kidneys aren’t working properly. How does it make you feel? I don’t know. I feel washed out all the time really, so is that anything to do with it? I don’t know.
I don’t know. You'd have to ask your doctor.
So what went through your mind when you were told about this problem with your kidneys?
Well I could just see dialysis on the way, and that’s terrifying.
Did they ever mention that word?
No, no, no it was just me. Oh kidney failure, other people go on dialysis don’t they?
Did she use the word ‘kidney failure’?
No, no she just said that my kidneys weren’t working as they should.
So you’ve jumped to the conclusion?
I've jumped to the conclusion that they're giving out, because I know a couple of people whose kidneys have given out and they go up to the hospital and have dialysis three days a week. But what has made my kidneys fail? That’s what I want to know what… other than the medication, have I done something that has made them fail?
Have you not asked the doctor that question?
Maybe you should?
Maybe she can give you some reassurance if you ask her.
Mm. Well all I can think of it must be the medication - been on it for six years, so I wonder.
Which medication do you mean, the thyroid one?
I don’t know.
She did say it does affect the kidneys, and of course steroids affect your bones and everything else don’t they? That’s what I say, they give you one thing to cure one thing and it upsets another. But other than that I don’t know. As I say, it's all new to me this last few weeks, I hadn’t a clue.
Help with understanding clinical measures of kidney health
People who had other long-term conditions, such as diabetes or heart disease, often commented on the minimal feedback and explanations they received about their kidney test results compared to other tests. However, others described their kidney health very much as a background issue and did not feel the need for more detailed feedback on test results. Some people admitted that they did not really understand the meaning of detailed figures or stages of chronic kidney disease (CKD) that health professionals had mentioned to them but did not feel concerned about this.
- Age at interview:
- Joan is a retired cake decorator and now runs a community and day centre for elderly and disabled people. She is divorced, has 2 daughters, 2 grandchildren, and lives with a lodger. Ethnic background: White British.
And what kinds of things are the questions that you would like to ask about your kidney problem?
How far the problem is because, when they told me that stage three …it doesn’t mean anything. It it’s just something I don’t understand. And as I said, unfortunately, they didn’t have time to talk to me about it. Obviously, there’s been a stage one and a two. I don’t know what that was about? ...It would have been nice probably to have been able to tackle the problem or at least understand it by being told… as you get over the shock when you’ve got diabetes, they tell you about all the things that can happen to you regarding heart, legs, sight… but please tell us about the kidneys. That would help [laughs].
- Age at interview:
- Harry is a retired quality manager for British Aerospace. He lives with his wife, Nell, who briefly worked as an auxiliary nurse before her past job as a civil servant. They have 3 children and 6 grandchildren. Ethnic background: White British.
I think in life you have to rely on the professional people that are trained and I don’t think it’s appropriate that we all become experts on every part of our body. I mean you can find out, if you’re really interested, there’s plenty of information around, one can read or go on the internet or what. But I think I know enough about what kidneys are there for and what the liver is there for and so on without going into medical terms and knowing all the sort of finite details.
- Age at interview:
- Joanne works part-time as a lecturer in further education. She has bipolar disorder and has been taking lithium for many years to help even out her moods. She lives with her husband, they have no children. Ethnic background: White British.
And is there anything relating to kidney checks that you feel that you don’t know as much about as you would like to?
Yeah I'd like to know what these readings are that I get and what they mean and what they mean to me.
About how my body is changing, how my kidneys are changing. Yeah I think I might like to know about that so I'm aware. I like statistics, I like numbers you know, I work in that area, I teach that area and for me, yes, and I know it's about individuals and I'd like to maybe know how my kidney function is maybe decreasing over a period of time, so I can see it falling.
But at the same time I can understand why my GP wouldn’t necessarily tell me that because don’t panic people, don’t panic me unnecessarily because it'll just give me something to really maybe worry about.
Mm and do you feel able to ask those questions do you think when you next go and see your GP you might have some questions?
Well I did ask her last time and she said it was nothing to worry about. "It's nothing to worry about, it's just, you know, it could be your age, could be drugs, it's alright; we're just monitoring it, that’s why you have your three monthly, your three monthly blood test, that’s why we do them to monitor them. Don’t panic – nothing to worry about." So…
So would it be fair to say that you sense a certain reluctance on part of the GP?
I think she doesn’t want to panic me unnecessarily and, and it's just something that’s… she did sigh when I came in and said, "I've been called back." She said, "[Sighs] oh doctor, he doesn’t know you at all and it's like just panic, he's just panicking and there is nothing to panic about so."
- Age at interview:
- Justine works as a self-employed lorry driver for a recycling company, so her job involves a lot of walking and heavy lifting. She is married, no children. Ethnic background: White British.
Is there anything relating to kidney checks or kidney disease that you feel you don’t know currently as much about as you would like to?
It's very… thinking about it now from what we've said, it's probably a bit more on the function levels, to be honest. Whilst I'm saying yes, they say to me, "It's at sixty percent," which to me sounds bad but they're saying, "Oh no, it's normal" …But how can it be normal if it's only at sixty percent and not a hundred percent?
Maybe understanding that a little bit better.