Living with multiple health problems

This topic covers people’s experiences of ‘patient safety’. Patient safety is defined as the prevention or avoidance of injuries or accidents resulting from health care.* Some people interviewed reported harm resulting from treatments or medical procedures whilst others spoke of risks or trade-offs between (potentially) harmful effects and benefits (see also ‘Interactions between different symptoms, conditions and medicines’ and ‘Side effects of medicines’). People with multiple health problems also faced non-medical risks, for example losing employment or becoming socially isolated. Three separate but related issues are considered in this topic: 

•    actual incidents of reported medical error or harm,
•    risks that arose in the course of treatment or care (including non-medical ones) and 
•    wider risks for people with multiple health problems in relation to their social contacts and role in society.

Medical harm

Unintended harmful effects of treatment that could be defined as ‘mistakes’ are rare, but had happened to some people we spoke to. For example, Fred came to discover that “articles” had been left inside him when he was stitched up following an operation and Kevin had a tube to his bladder accidentally cut through during surgery. 

There were other kinds of unintended effects that were not due to medical error. For instance, Fred picked up an infection and Robert reported how he developed a deep vein thrombosis whilst in hospital. Others talked about a variety of bad results from taking medicines. For Amy, a long spell in hospital and Intensive Care (during which she had “nearly died”) left her with several problems following medical intervention; including asthma from being artificially ventilated several times and mental health and other problems associated with brain trauma. However, these did not appear as ‘unintended consequences’ of treatment but rather the result of extreme measures in order to keep somebody alive during a medical emergency.

There were also instances where people felt that they had been assaulted in some way or experienced psychological harm whilst undergoing investigations or attending for other appointments. When Tammy happened to have a seizure whilst attending the local surgery she found it to be the worst possible place to be; with health care staff stabbing her with needles whilst she was unable to respond. Anne X described how a doctor had “stuffed a great lump of wood in my mouth” for her to bite down on during an investigation she found scary and uncomfortable. Fred had a probe driven into his skull via his ear that made his “toes curl” and Ronald complained about repeated failed attempts to draw blood. Andrew was claustrophobic and unable to use the lift as expected by the health care staff.

When asked, Ronald says he thinks that health professionals don’t always listen properly. From experience, he knows it is more difficult to take blood out of his arms than from the back of his hands.

When asked, Ronald says he thinks that health professionals don’t always listen properly. From experience, he knows it is more difficult to take blood out of his arms than from the back of his hands.

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Age at interview: 70

Sex: Male

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I’ve got a question here, do you feel that healthcare professionals listen to you?

Not a lot of the time. You know, the, just a minor thing where I try to explain to nurses and the people that are trying to take blood, I know from painful experience that it’s very difficult to get it out of my arms, where it’s normally taken. I have to insist that they take it out of the back of my hands because of the veins are quite prominent, whereas what the condition I’ve got, the same, must be hereditary, my sister is the same, when they stick a needle in, the needle doesn’t penetrate the vein. It pushes it and I have finished up, at one time, at the [hospital] with five different holes trying to take one blood test. So now I pretty well insist that they take notice and take it out of the back of my hands. I know it’s painful at the back of my hands but it’s less painful than being stabbed multiple times in the arm, you know. That’s the only complaint I’ve got really but most know me now and they listen.

Tammy describes having a seizure during a routine health appointment. She felt she was being attacked by staff who were trying to help. On reflection, her husband said it was the worst place it could happen.

Tammy describes having a seizure during a routine health appointment. She felt she was being attacked by staff who were trying to help. On reflection, her husband said it was the worst place it could happen.

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Age at interview: 45

Sex: Female

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I recently, as an example, I, one of the worst seizures, you know, again, not they’re all pretty much the same level, but I happened to be in a medical centre. I was having a meeting with a specialist, no not a specialist, she was a practice nurse, and it was just my surgery up the road and we were talking about my long term conditions. We have this sort of annual review so it was just me and her, one to one, her computer was beside her and she was flicking through my notes and we must have been talking about my condition and I felt a seizure coming on, you know, there and then. And it did, it happened and I again, you know, vague as to what I know, I must have stopped talking and looked quite sort of trance like I think, you know, and suddenly she disappeared. This is all my sort of blurred memory of it and what I’ve been told since, and I do remember suddenly there were two of them sort of staring at my face, her and another female, and, you know, it’s like a dream, basically, very much like a dream. So you can see them almost, you know, strange sort of vision and see their mouths opening and sort of almost making noises, but I’m not understanding what they’re saying. 

And they could see that I think they were both saying, “No, you know, something is wrong. She’s lost it, blah blah blah.” And then they led me to the bed, which was just a hospital bed, which happened to be in the room and then, it was like I was saying to you before, there was just too much stimulus, you know, it was making, you know, my husband said it himself, you know, “That was the worst place you could have a seizure, in a medical centre.” Funnily enough, you know, so they there was this sort of panic feeling I think, although they were helping me, although I’m like a zombie, I’m not fighting it, you know. And then they rattled in this blood pressure machine thing and I remember that being so noisy, you know, “What on earth is that?” And they sort of almost like, you know, I was like a puppet. They were sort of took my blood pressure, pricked my finger, which was awful, just, you know, felt so peculiar and really unfamiliar. I’ve got no idea what’s, so, you know, feel as if I’ve been attacked almost, “Who are these people and what are they doing to me?” And but they were doing what was necessary, you know, doing a blood test. Had my sugar level been particularly low, they’d have been worried. I think I’d got a heartbeat sort of pulse peg put on my finger, you know, and so on and they were talking away as well and I again didn’t know what they were saying and so on. And a few minutes later, a doctor appeared, not my doctor, and he, I think this is this is attached to what you were saying about managing people and again sort of supressing my sort of anger towards it, he, first of all he said, “Have you taken your medication this morning, Mrs. [surname] And I go, “Yeah.” And I just, I hate that sort of assumption that, you know, you’re careless and that you’re probably not taking your tablets. 

Andrew had been treated for claustrophobia, but this was not initially considered when he went into hospital for an operation which required him going in a lift.

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Andrew had been treated for claustrophobia, but this was not initially considered when he went into hospital for an operation which required him going in a lift.

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Age at interview: 65

Sex: Male

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The other one the other one is I’m severely claustrophobic, and I mean so much so that it was treated medically. I was sent by the GP for cognitive behavioural therapy. They gave me cognitive behavioural therapy in the 1990s can’t quite remember when, and decided that it wasn’t curable because of my age and how long I’d had it, and the way I’d reacted to it and that, therefore, I’d got to just have strategies for living with it. This meant that when I was admitted to hospital in 2004, with the, with what turned out to be the adrenal deficiency, I was faced with a with a journey in a lift, which I wasn’t prepared to undergo and there was a lot of distress as people tried hard to make me go in this lift. And, eventually, my wife, who is a psychologist sort of said, you know, “For heaven’s sake, you know, pull yourselves together. Start treating the whole person instead of, you know your speciality.” And I was treated on the ground floor of the [hospital] for my stay. As a result of that, when I went into the [hospital 2] for my appendix, I was partly anxious that it was the [hospital 2] because there are, there’s less floors there, so a two floor building rather than a three floor building, rather than an eight floor building. And so I asked for this to be taken into consideration and I have to say that, on that occasion, everybody medical coped with it extremely well. I wasn’t required to go in a lift. 

The failure, and there was a failure, was on the part of hospital managers because, although this need had been firmly indicated and properly discussed at the clinics and by the, and specially flagged up by the GP and discussed with me, the nurse and everybody else, is when I, when it came to it, the operation was on one floor and the ward was on another. And so I was faced, and nobody had done this before this, they all said this was the first time this had happened, is I was faced post-operatively with climbing the stairs and they were all, to be fair to them, they were all very keen to help, and I got I think two nurses and two porters, who were prepared to actually carry me up.

Risks for health service patients – medical and non-medical

Life is full of risks. Health problems bring their own risks, and because these are largely down to an individual illness or problem, we have not considered them in depth here. Information about specific conditions can be found elsewhere on this website. 

The risks associated with medical treatments may be magnified for people with multiple health problems, if only because they are more likely to have more contact with health services.

One of the most talked about risks of medical treatments by the people we interviewed was side effects (see ‘Side effects of medicines’). John had already had several operations, and when considering having a “mesh” put in his abdomen to repair a hernia he had been warned that it would create problems if surgeons needed to “go in again.” There was also a “1 in 3 chance” that an operation would kill him because of his other health problems. Derrick was told that the risks to him of quadruple heart bypass surgery were too high by one surgeon, but other people seemed to criticise him for not having the operation. Anne Y had been advised that surgery was one option for her epilepsy, but that it could leave her brain damaged (see also ‘Prioritising multiple health problems’). Fred had been discharged from hospital at short notice and without enough supplies or instructions about dressing a wound. He ended up using paper towels which could have been an infection risk. Gogs appeared to have to weigh up different clinical risks against each other: the risks of going outside the safe range of her liver enzymes against the risks of not completing a treatment. Kevin was only given a “fifty-fifty” chance that an operation would work - leaving his mobility worse than beforehand. Again, his case was complicated by previous surgery. Loraine was concerned about having an epileptic seizure whilst left unsupervised in a hospital shower or bath.

One hospital would only give Kevin a “fifty fifty” chance of another operation on his hip being successful. He already has a metal plate from a previous operation.

One hospital would only give Kevin a “fifty fifty” chance of another operation on his hip being successful. He already has a metal plate from a previous operation.

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Age at interview: 54

Sex: Male

Age at diagnosis: 7

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They won’t do the operation, they would only… they would only give me fifty/fifty.

What… a fifty/fifty chance of it working or…

Yeah.

…a fifty/fifty chance of you being alive afterwards?

Well they said it could be walking again or else I’ll end up in a wheelchair for the rest of my life, so…

And would you have preferred to have the operation then, do you think? Did they try to put you off?

I think they… I think they tried putting me off a little bit, because they would only give me, like, fifty/fifty and I wasn’t happy. So I walked away out there and so I saw another doctor and he said we could do the operation, but he said it would be… because there’s a plate I’ve got in there now, they’ll have a job to remove it.

Right.

And the, because I’ve got three screws in my… in the plate on… in the plate as well.

Right. And the plate is related to this…

Perthes Disease.

A surgeon told John that an incompletely healed wound from a hernia operation could be repaired using sheets of mesh. However, this comes with risks and would create problems if he needed surgery again.

A surgeon told John that an incompletely healed wound from a hernia operation could be repaired using sheets of mesh. However, this comes with risks and would create problems if he needed surgery again.

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Age at interview: 77

Sex: Male

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I’ve actually got one of the largest incisional hernias that, that you will see, and that is an incisional hernia. And we did spend a year… We thought it was cosmetic originally, but it, um, it doesn’t actually help because there’s no stomach muscles, so that doesn’t help the back. We did spend a year or so, talking to a thoracic surgeon at a relatively local hospital, and he said that he… After about a year he said yes, I can fix it, but it’s gonna be two sheets of A4 mesh going in, one inside, one outside, and if, and that’s gonna be a problem if we need to… if anybody needs to go in again.

It will be at least eight hours of reconstructive surgery, and, by the way, there’s a one in three chance it’ll kill you [laughs]. So we decided not to have that done and put up with the thing. 

Loraine finds it difficult to get support for physical care whilst bathing or showering and wonders about gaps in adult safeguarding.

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Loraine finds it difficult to get support for physical care whilst bathing or showering and wonders about gaps in adult safeguarding.

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Age at interview: 56

Sex: Female

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You just need some help with the physical needs. I could do with someone supervising me through a bath or a shower because it isn’t safe when you have epilepsy. You’ve got to have supervision and I had one, I had a nurse say to me, a) “You’ve only got epilepsy,” which is wrong and b) had someone say to me, “But we wouldn’t get you out.” And I was thinking, “Hello, this this is murder this.” [Laughs] If you wouldn’t get me out of the bath because I was about to have a seizure then you’re virtually committing second degree murder verbally, third party reporting that. In other words, a hate crime you could get them on virtually, if they didn’t do it. And I’m thinking, “Hang on a minute, but that’s why I need you.” But I mean they did, they don’t do that type of thing anyway these days, but you can’t get an enabler to do it neither because you’re told by the social services here that they wouldn’t be allowed to do that.

But, hang on a minute, they’re still committing the same crime, so where does adult protection come in?

As well as medical concerns, people also described other problems of using services that related more to how they felt emotionally or psychologically. For example, Ronald mentioned the possibility of appearing as a “whinger” if he used health services too much. Fiona was concerned about not being taken seriously by doctors. She also believed that much success lay in luck or fate according to which doctor one happened to see at a particular appointment. For Loraine, the clinical relationship could become compromised if patients became too familiar with doctors, e.g. by speaking to them on first name terms (see also ‘Continuity of care’).

Ronald feels that concerns he has following a gall bladder operation have not been addressed by his GP. He is concerned about appearing as a “whinger” if he keeps bringing up the same issues.

Ronald feels that concerns he has following a gall bladder operation have not been addressed by his GP. He is concerned about appearing as a “whinger” if he keeps bringing up the same issues.

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Age at interview: 70

Sex: Male

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Just in terms of the cholecystectomy, you say that you haven’t been listened to, is that perhaps problems you might have been having and you feel they’ve not been addressed, or is it something that you feel perhaps, you know, the GP or could have helped with and hasn’t or?

The GP could have helped more I felt and it’s something that can be quite easily seen to, and it would help me just to set my mind at rest, you know, and it’s seems just a simple thing to sort of spot and it just seems to fall on deaf ears.

And do you feel that you’ve brought it up a number of times now.

[mm mm]

And is it something you could raise again or is it?

Well, I could raise it again, we live in hope, but at the moment, my GP, she’s going to be on maternity leave so if we get an half decent young man or young lady, you know, who knows? But keep bringing up the same thing all the time, it probably might think you’re a whinger and things like that. And I mean, these days, you don’t need much, they don’t need much of an excuse to get rid of you off of their books and I’m always aware of that.

Fiona judges doctors according to whether they appear to listen to her or not. She thinks that the quality of care depends on who you see.

Fiona judges doctors according to whether they appear to listen to her or not. She thinks that the quality of care depends on who you see.

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Age at interview: 25

Sex: Female

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In terms of the care that you receive, how do you know whether you’re happy with it?

Oh, that is a difficult question.

[laughs]

I think that when you come out of an appointment, whether you feel all your questions have been answered and whether you come out feeling satisfied and happy knowing you’ve got answers or, you know, that all your questions have been answered, or you’ve been taken seriously about something or, you know, whether you come out feeling, you know, a bit of a waste of time.

Which I haven’t felt at the moment. 

Right. Okay and do you feel that healthcare professionals listen to you? Do you feel that they understand the effect, the impact of your conditions on you?

I think it depends on the individual really. I mean some sort of do, some do listen to you, some don’t, or if some sort of think that they know better, sometimes don’t understand, you know, they sometimes forget that you’re the one living with the condition every day and you have more experience of it really. They may have more knowledge but you’re the one living with it.

And I’ve come across a few of those types of people throughout my time with regards to the diabetes.

And they’ve sort of made, I mean I had one doctor, who I mean this was talking about when I was about fifteen, and my diabetes couldn’t have had any more perfect control and he was talking about upping my injection count to seven or eight a day and, but that’s for no reason. And when you would ask why, it was sort of, you know, she didn’t quite understand and at sort of fifteen as well, to be told, you want to go, you know, you’re going from four to about seven, you know, you think, whoa.

Do you think that multiple conditions are an issue in in healthcare?

Oh. I think from my personal experience, I haven’t really found an issue but I think it depends on who you speak to and the kind of care they receive from different, obviously, you’ve got different healthcare professionals and I think it depends on who you see really.

Wider risks in society

Sometimes, having multiple health problems brought risks associated with other aspects of life. For example, Chris described how he was now nervous of driving on remote routes in case the car broke down and of walking outdoors in icy weather. Sue said that her marriage had broken down after her stroke. Angela had lost her job as a result of her health problems and now faced both social isolation and loss of income. Jean felt shut in as a result of her health problems and generally excluded from life. In her home, she faced the risk of falls. As an elderly person, she felt that she had been “thrown on the dung heap” and suggested that old dogs are treated better than old people as at least dogs get taken out for a walk. Michael X spoke about the risk of his not being able to travel by plane if his health conditions prevented it. Anne X spoke about the many recent stresses in her life (such as being involved in car accidents) which appeared to underpin some of her illnesses. Barry talked about personality changes that could impact on his relations with others.

Barry feels that his personality has undergone a total change since his stroke. He feels he has become angry and more “right wing”.

Barry feels that his personality has undergone a total change since his stroke. He feels he has become angry and more “right wing”.

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Age at interview: 67

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Barry: I told you about me all about me being aggressive, you know.

Margaret: You told her, okay [laughs].

[Laughs] so is that you find that sometimes you feel angry?

Barry: Yeah, very.

That type of thing?

Barry: Because, as I say, I’ve lost the finesse of my job what I used to do. Now I think I’m very right wing, you know.

Right.

Barry: Like let’s thump everybody but, you know, I hate to feel people have got away with it. When they appeal like I want to say to the people, give them some more.

Then they wouldn’t appeal so often then. I’m terribly right wing now, whereas I never used to go, I used to go over the centre of the road.

Okay and is that a personality change that you’ve noticed.

Barry: Yeah.

Since the stroke?

Barry: Personality, yeah. It is totally personality change.

Right. 

Barry: I just don’t, I just can’t stand people being left wing or middle of the road. I’m right wing and there is an answer, they go on about these people being on expenses but there’s, there’s a certain, there’s a limit you should pay out and I’m afraid I’m getting quite right wing.

It’s terrible really that you feel like that. I just get so angry at mainly what other people do.

Right.

Barry: And but I know I can’t do anything about it but I would like to change the world [laughs].

Anne X links her poor state of health with stresses from other areas of her life such as being in car accidents and the threat of flooding.

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Anne X links her poor state of health with stresses from other areas of her life such as being in car accidents and the threat of flooding.

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Age at interview: 79

Sex: Female

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And I’ve got an old injury in my ankle, which isn’t the healthiest of things, that has just reared its ugly head. And I think the stress, I mean my hands are just something to look at, they’re so awful and very painful sometimes. They’ve got psoriatic arthritis.

And that is psoriasis and I’ve got psoriasis in my hair and bits on my body and in my ears, which is a bit of a tedium. So that is stress because I’ve never had psoriasis like this on my body at all.

Ever in my life.

I think it is a stress condition. And we live near a river and suddenly they’ve put on flood warnings, and we’ve had two years of flood warnings at a certain point and water terrifies me. I nearly drowned in a swimming pool up here.

So there’s a lot of stressful things going on in my life. I manage to cope round most of them and take them in my stride as if they didn’t matter but, unfortunately, they do matter and I’ve had a lot of stress in my actual life because I’ve had, been in two major car accidents in the last three years and my husband also had a heart attack.

And my daughter had liver failure. She lives abroad, and one of my grandchildren shattered her leg, and this has all been in the last three years, apart from what’s going on in my life normally.

Jean doesn’t get the level of help she would like with everyday activities. She feels socially isolated and bemoans the loss of family networks close by.

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Jean doesn’t get the level of help she would like with everyday activities. She feels socially isolated and bemoans the loss of family networks close by.

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Age at interview: 80

Sex: Female

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My son is disabled. He can’t get here. My step-daughter has a business and she can’t get away and it could be weeks before you have a visitor. And I think that’s half the half the problem. No joy in getting old at all. I can’t get out to anything because if I go out anywhere, I’ve got to have support. I’ve got to have somebody with me. I’m so doddery on my feet that if I walk with sticks, I am a bit unbalanced on my feet or if I have a wheelchair. But if I have a wheelchair, I’ve got to have somebody push me and somebody to help me and there isn’t anyone. So the things I might get to, social things I might get to, I can’t get to. I can’t get to a local concert or something the children are doing at the school or something like that. I did try joining the History Society and there was seventy-two people. I counted them. There was seventy-two people at the meeting and I said to the chairman, “Would anyone be willing to bring me the half a mile down the road from my house down the hill to the next meeting?” And not one single person offered. So this big society where everybody is supposed to be helping everybody else, it does not exist. I live in a I live in a street here, neither neighbour talks to anybody else. Right from the beginning I said ‘hello’ when they moved in, didn’t want to know. You know, and I’m quite a friendly person and I’ve always lived quite happily with my neighbours before, couldn’t understand it, but people just don’t want to know there. There isn’t the community. There isn’t the help. I’ve got one neighbour, who lives about ten, fifteen doors down and she’s in her late seventies, she she’ll come in to massage my feet for me because I can’t reach them and that’s it. And I’ve got my carers, who just come in to do my basic care, and that’s all they’re allowed to do is my basic care.

They’re not supposed to do housework. They do. They put the vacuum round but I mean the house needs a good clean and I, my income is such that I’m not in a position to afford to pay people to come and do it. And I would like, my garden is the same. I used to love my garden, used to love pottering around but again, I need somebody with me just in case I fall or, you know, just to be there and that’s not necessary. That’s not counted as essential. The only essential things are my personal care and that’s it. Get my bed changed once a week, get the toilet cleaned once a week, get the bathroom cleaned once a week and the kitchen, and that’s all you’re allowed. And this is supposed to be living. This is what they call living.

No, I find it extraordinary. I’ve worked in preventative medicine all my life and to me, helping somebody stay well and healthy and fit and socially active, is essential. It isn’t it isn’t a gift, an extra, it is part of life and, when we had kinship families, we had families, we had people, we had cousins and aunts and uncles and grandparents and people that we could go to or could come to us. But that doesn’t happen anymore. There’s lots and lots of people just like me, who live totally isolated lives, you know, and it it’s enough to crack you up if you were of less stronger fibre, and I think it does. I was in hospital in in the [name] Hospital with women who’ve had strokes and they just turn their faces to the wall. When they’re told they were hemiplegic or they’re never going to live a full life again, and they just turned their faces to the wall and died, just gave up. And these people who had years of life left in them if they were given the help and the support that they needed.

I mean I’ve had battles royal with the social services but it doesn’t get anywhere.

*National Patient Safety Foundation. Patient Safety Dictionary. Accessed 15th of August 2015.