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Joanne

Age at interview: 50
Brief Outline: Joanne has 3-monthly blood test to check for possible side effects from her anti-psychotic medication. Three years ago she was found to have hypothyroidism and pernicious anaemia. More recently, she learned that her kidney function is also mildly decreased.
Background: 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.

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Joanne works part-time as a lecturer in further education. As a young adult, Joanne developed mental health problems and was eventually diagnosed with bipolar disorder. She lives together with her husband, who has also an important role as her main carer, making sure that she takes her medication in the correct way and helping her to recognise when she becomes unwell or might need to adjust her dosages.

Joanne has always been aware that the antipsychotic medication she takes to help stabilise her moods (lithium carbonate and quetiapine) can have serious side effect, but has felt reassured by the fact that she has frequent blood tests to monitor the function of her vital organs. She has three-monthly tests to check for side effects of the lithium, and 6-monthly tests to check her thyroid and kidney function.

In 2007, Joanne developed pernicious anaemia, a condition when the body cannot absorb B12 from foods naturally. She has to have 3-monthly B12 injections for this. Then, about three years ago, one of her routine blood tests picked up that her thyroid had become underactive (hypothyroidism) and she was prescribed thyroxine.

Joanne experiences some side effects from her antipsychotic medication, mainly morning drowsiness, but over the years has managed to adjust her life accordingly, for example, by agreeing with her employer that she will mainly teach afternoon and evening classes. Her knowledge of the Equalities Act 2010 has been useful to negotiate this.

Joanne has experienced complications with her kidneys in the past. Around 18 years ago, after developing flu-like symptoms that quickly worsened, she was rushed into hospital and diagnosed with a serious kidney infection. She lost consciousness for some time and had to stay in hospital for two weeks. The doctors were unable to tell her the cause of the infection at the time, but thankfully it has not recurred since.

A few months ago, Joanne received a call from the surgery, asking her to make a GP appointment because the most recent blood test had shown a mild decrease in kidney function. However, when she saw her regular GP, she was told that while her kidney function had decreased and could formally be classed as CKD stage 2, bordering stage 3, this was something quite normal and expected given her age and the fact that she had been taking lithium for many years. The GP told her it was nothing to worry about and that she would continue to be monitored closely.

Joanne has great confidence in her GP surgery, and particularly in her regular GP whom she has known for many years. She thinks especially for people with mental health problems, having continuity with the same doctor is extremely important. Because she trusts her GP, she feels it is less important for her to know the fine details of her test results. She thinks giving people figures about kidney function without sufficient context or knowledge might cause people to panic unnecessarily and ultimately do more harm than good.

Joanne thinks that her monitoring arrangements work well overall: while in an ideal world it might be nice to get personal feedback on test results from a GP, in reality she is satisfied to be told her results are fine by a receptionist when she remembers to ring up the surgery. On one occasion in the past, Joanne did have a phone call from her GP informing her that a routine test had found dangerously high levels of lithium in her blood and that she needed to stop taking her drugs and come in immediately to be checked over. So this has reassured her that if there is cause for concern she will be notified quickly.

Joanne has not had a great deal of advice on leading a healthy lifestyle from her surgery, but is grateful that they are not overzealous in pushing her to stop smoking or telling her what she should eat, because they are aware that keeping mentally well is her main priority. When she got diagnosed with pernicious anaemia, she requested a session with a specialist mental health dietician whom she had seen many years previously. She found it very helpful to get practical suggestions on changing her diet that she felt were realistic and achievable.

Joanne’s main health concern is to stay well within herself mentally and she is not too concerned about her other diagnoses for the time being, as she feels they either have been addressed by taking additional medication or aren’t serious enough at the moment to warrant special attention.
 

Joanne, who also has bipolar disorder, trusts her GP to keep an eye on her kidney function and does not feel there is anything to panic about. Her main health concern is keeping well in herself.

Joanne, who also has bipolar disorder, trusts her GP to keep an eye on her kidney function and does not feel there is anything to panic about. Her main health concern is keeping well in herself.

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So can you talk me through how you first found out, or how the topic of your kidneys was first brought up – who raised it?

It came back because one of my blood tests apparently my kidney function had decreased… oh no, it had decreased and they said, "Oh we'll just monitor that," and then the next one they said, "Yes still decreased but don’t panic it's not gone off any scale that we'd worry about, it's just that it is decreasing," so it just kind of come up in conversation as talking about as- where things had happened.

So this was a couple of years ago now?

Yeah and more recently… a comment was just made that another doctor was reviewing my blood tests and when I phoned up for my blood results which they normally say is “yes it's satisfactory” or “nothing to worry about”, they said, "Oh you need to make an appointment, the doctor wants to discuss this”, so I made an appointment, went to see the GP I normally see and she said, "I think the other doctor was getting a bit concerned about this; he hasn’t been reviewing what you’ve been on and it's nothing to panic about, it's just that your function has slightly decreased but nothing that we were terribly worried about at the moment, so don’t panic."

OK and how did you feel about being told not to panic, did you find that reasonably reassuring?

Yeah I mean yeah… if my doctor says I have nothing to panic about, then I would trust her. I say I've known her for a number of years so yeah I would trust what she says. I don’t think there is anything to panic about; I think I've got more things to panic about than… than my kidneys at the moment. I don’t think they're at a stage… they wouldn’t do anything apparently at the moment anyway so.

And what would you say is, from your point of view, is your main health concern at the moment?

Keeping relatively well in myself. Just being generally well. Yeah.
 
 

Joanne thinks there should be more promotion in GP surgeries of the function kidneys have in your body and how to keep them healthy.

Joanne thinks there should be more promotion in GP surgeries of the function kidneys have in your body and how to keep them healthy.

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How do you think people could be made more aware of kidney disease?

I think GPs, I mean they promote a lot about don’t smoke, healthy living… keep fit… you know, in surgeries. I do… and in like mental health – you name it, they promote sort of… have posters and things up but there's never… I've never ever seen anything that I recall about kidneys and why kidneys are important. Now I know about kidneys, I mean did kidneys in biology A level, you know O level and A level so I do know a bit about... But it's not promoted like your lungs are. Well if you don’t have kidneys you're going to die unless you can get a transplant or whatever and yet people know about oh if your, you know, lungs pack up you're going to die, but people don’t understand that kidneys are a very, very important organ of your body. Yeah you can afford to lose one – that’s fine – most people can afford to lose one. Some people only have one, most people have two, but… if they are diseased and don’t work then it will affect your overall health and people don’t understand that.
 
 

Joanne doesn’t know whether her decrease in kidney function is due to age or her medication or both – she is not too concerned to know the exact cause at this point in time.

Joanne doesn’t know whether her decrease in kidney function is due to age or her medication or both – she is not too concerned to know the exact cause at this point in time.

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What are your thoughts about why you have developed kidney problems?

I don’t know. From talking to people and reading stuff it could be my age… because I understand that late forties, early fifties your kidney functions naturally decrease, so it could be my age and it's just, over the last few years, gone down to due to that and it could be that my kidney function stays where it is now in which case there’s not much point to worry about it. It could be that; it could be as a result of long term taking lithium…it could be a combination of those. So I don’t know.

Would it be important for you to know?

No because what's happened in the past has happened so you can't go back and turn the clock back. I would hope that my- my kidney function is continued to be monitored and if it does change then maybe they would do a review of my drugs and maybe decide what we're going to do from there. I think at the moment it's… you know, it's within a range that people could naturally get to my age so don’t panic, we'll just monitor and if things do change then we'll make a decision about what we're going to do.
 
 

Joanne takes lithium for bipolar disorder and has regular blood tests to check her lithium levels and also her thyroid and kidney function since both can be affected by lithium.

Joanne takes lithium for bipolar disorder and has regular blood tests to check her lithium levels and also her thyroid and kidney function since both can be affected by lithium.

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And since then I've been formally diagnosed as being bipolar. And as a result of that I have regular blood tests and from those blood tests it's been identified that I've had an underactive thyroid because I have three monthly blood tests for- to monitor my lithium levels in my blood because they have to be at certain levels, so to make sure the dosage of the drug I'm taking is appropriate, relevant, not too excessive, not too low and working. I have three monthly blood tests for that and also I was then having six monthly thyroid blood tests at the same time and kidney function. My thyroids were then found, about three years ago, to have gone… to be underactive so, as a result of those blood tests, that was picked up and I just take a thyroxine tablet to (excuse) that. And then my kidney function over the last probably two/three years has been going down and again that’s been picked up by these regular blood tests as a result of those and now I have every three months, when I have my lithium levels tested, I also have my kidney function test to see whether it's…how it's going; whether it's decreasing or what's happening to it.

So that’s where I am at the moment and they just say, "You'll have your blood tests and that’s what they're for, so that we can monitor things." And what I have been told is that a number of people that are around my age will naturally get- their kidney function will naturally decrease so it could be due to my age. It could be due to the fact that I've been taking lithium long term; it could be a combination of the two and it could be that my kidney function just stops as it is now and doesn’t get any worse. So… I don’t think my medical teams are particularly concerned at the moment, just that I have my regular blood tests and that if things get any… there are any changes that then they would call me in and they could discuss from there.
 
 

Joanne has got into a routine of having regular blood tests for her lithium, thyroid and kidney function levels and doesn’t mind it at all.

Joanne has got into a routine of having regular blood tests for her lithium, thyroid and kidney function levels and doesn’t mind it at all.

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Right I'm now going to ask you a little bit more about the nitty gritty of testing. So you’ve already mentioned it's quite important because of the Lithium that you take it at a particular time. What do you feel about actually going and having the tests?

Doesn’t bother me, it's part of my life. I just every three or twelve weeks/three months, depending on whether we're on holiday or not, it's part of my life that I go and do – it's a routine I've got into and that when I first started taking Lithium I was told I needed to make sure that the levels and everything were OK and that they monitored by bodily functions. So as part of my life, and it doesn’t bother me, it's not intrusive, it's a quick- you know injection…it's a quick – needle in, phials out and that’s it.

Mm and you don’t have a particular problem with needles?

I've no problems with needles at all, no.
 
 

Joanne usually phones up for her test results about 3 days afterwards but she sometimes forgets; however, she recognises that sending results by post instead could cause anxiety.

Joanne usually phones up for her test results about 3 days afterwards but she sometimes forgets; however, she recognises that sending results by post instead could cause anxiety.

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I have to have my blood tests done in the mornings. This is one of my early morning starts I have to have because my lithium has to be taken twelve hours after I've taken it. So it's quite time constrained to… so I have them done in the morning and then they get sent off that morning and I normally phone up about two to three, normally about three days later

Do you ever forget phoning up for results?

Yeah I do. I do and I think about two weeks later, 'Ah results, ooh yes I had some blood results going' Normally I go past surgery, “Must phone them up”, and then I forget because I'm going to work or something and I get… you know, and then it's like nine o'clock I finish work and so, “I haven’t phoned yet“, and then I forget. So sometimes I do forget.

So what would you think it might be helpful to get them by post for example?

No, no because if you send things through the post and they are other than normal, people will just panic and you'll have people going, phoning the surgery and going to this poor receptionist going, "Oh I've got your results, I don’t a) I don’t understand them and b) what do they mean, c) ooh they're abnormal I need to see someone now," and I think you'd have panic going and people won't understand what things mean. So no, if you're going to start sending stats out to people – no people have got to be very, very educated about what they mean for that person as well.
 
 

Joanne doesn’t know exactly what level her kidney function is at, and whenever she asks for her test results she is just told they are ‘satisfactory’.

Joanne doesn’t know exactly what level her kidney function is at, and whenever she asks for her test results she is just told they are ‘satisfactory’.

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And over the phone they would just say, the receptionist would say, "They're fine.” “There's nothing to worry about; are satisfactory," are normally what they say. If there's anything else they would say , "There's a little note on here, you need to come and see a doctor about this," but normally they just…the receptionist says, "Yes they're satisfactory," and that’s fine, it’s normal.

Mm and if you think over the last few years because you’ve obviously had these check-ups for quite a long time now – how often does it happen that they say, "You might need to come back and talk to a doctor?"

Rare, very rare. I had one a few months ago and that was about my kidney when a different doctor had reviewed my results than my normal one. As I say, my normal doctor was obviously…knows how my…how things have gone down but very rare. Once I'd say and that’s it.

And in terms of the language that was used to describe your decreasing kidney function can you remember how the doctor explained what was going on?

They just said, "Oh your kidney function is, has just gone down a bit and it's quite normal, it's probably your age, your age group you're now into; or it could be drugs, could be a combination of them and there's really nothing to worry about at this stage, it's quite normal. We will just monitor what's going on and if there is any further decrease then we would look at it and maybe take some action."

So were there any values or numbers being used as part of describing was mentioned?

No I've got no idea what my kidney function is. I keep asking people and no-one's actually told me.
 
 

For Joanne, regular monitoring reassures her that her test results are okay and that if a problem was detected it would be dealt with; there are no downsides.

For Joanne, regular monitoring reassures her that her test results are okay and that if a problem was detected it would be dealt with; there are no downsides.

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And are there any positives that you get out of having the tests?

I'd say ‘no’ but I guess that if you have the tests then you know that, that there are no changes that you need to worry about in you find your body, your functions are OK, your levels are alright; you're not poisoning your body by taking these drugs and that you need to take some action, so I suppose having said no there are no positives, there are in fact because it's a reassurance point of view, you're reassured that what you're doing, what you're taking is fine and that if there was anything wrong that it would be picked up and that action would be taken from there, so….

And what if any, would you say are the downsides of the testing?

None. I don’t mind at all. I'd rather have them tested and make sure that what I was taking was in… was OK for my particular body, within my body constraints that they are fine and that if there was anything wrong that it would be dealt with.

So no, no downsides.
 
 

Joanne likes statistics and would be interested to be told the values of her test results. At the same time she understands that GPs might be reluctant to share them with patients as it might cause people to worry.

Joanne likes statistics and would be interested to be told the values of her test results. At the same time she understands that GPs might be reluctant to share them with patients as it might cause people to worry.

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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."
 
 

Joanne doesn’t know if there is anything she could do to help keep her kidneys at their current level of performance or even to improve.

Joanne doesn’t know if there is anything she could do to help keep her kidneys at their current level of performance or even to improve.

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How do you think your own kidney health will be in future?

I've got no idea. I'm hoping it will be as it is now. I'm hoping that we've, it's come down to whatever it's come to and I'm hoping that… that will be it and it will just settle there… and it won't go any further.

Do you think it could improve again as well?

I've got no idea.

Do you think there's anything that you could actively do to keep it healthy?

I've got no idea.

But by and large you'd say these are concerns that are not right at the front of your mind at the moment?

Yeah. …But if they were- well I wouldn’t know. I wouldn’t know what I would need to do to keep my kidney healthy or healthier than it is, I wouldn’t know what to do about that.

Yeah

So yeah.
 
 

Joanne feels it is appropriate that her doctors have not yet raised the topic of possible future treatments because such information could cause unnecessary panic.

Joanne feels it is appropriate that her doctors have not yet raised the topic of possible future treatments because such information could cause unnecessary panic.

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And is that something that has been discussed with you, what might be treatment options in the case that your kidneys would decrease further?

No

It's not something that’s been discussed at this point in time?

Absolutely nothing. All I've been told is that I keep having my blood tests, we'll monitor it and if things change or get any worse, then we'll have a look at it.

Mm and do you think it would be appropriate to discuss things in, just hypothetically at this point, or do you think that should be something that should wait as and when function decreases further?

I think if people's… well my kidney function, if it decreases to a point when treatment… then it should be discussed then or when it's getting close to that point. I don’t think it’d necessarily be appropriate now. I don’t think one's at a point where I actually need to give treatment or they can do anything, it's just monitoring. And I don’t think you should panic people either because I think if you start talking about, "Well if it gets to this point, you're going to have go on dialysis and, if it gets further you can be dead, you know, if you can't get a kidney," because that just panics people and I think unnecessary panic is not necessarily a good thing.

I think awareness is good, panic is not good.
 
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