Living with the Experience of COPD Understanding their condition

Some patients did not seem to fully understand what ‘COPD’ meant and were confused by the term when they heard it was their diagnosis:

“I saw my notes and it had got ‘COPD’ on them. Well I didn’t know what that stood for and I asked... ‘What’s this? I’ve never heard of it. Nobody’s ever told me I’ve got COPD.’ But they wouldn’t sort of explain anything to me. They just said, ‘Oh it stands for Chronic something Pulmonary Disease. But chronic doesn’t mean it’s terrible, it just means it’s long-lasting’ and that’s all they told me… but I feel nobody ever said... you know, explained to me what it was…

It was almost sort of brushed aside.” [I21 (patient)]

“I had a phone call from my clinic that I’d signed on with saying, ‘Mrs [interviewee surname], because you’ve got COPD, would you like a flu jab?’

And I said, ‘I’m sorry? I don’t know what COPD is’ and I didn’t. Oh right. Oh.

5.3.4 Perceptions of the concept of

triggers 5.3.3 Living with the experience of COPD

Themes

Understanding of their condition

Adaptation

Personal visibility of triggers Resignation and Resilience

Relevance of holistic assessment Views of professionally constructed

triggers

Chapter 5 Results

Overarching themes

107 Okay. And she said ‘I think you’d better come and see the doctor.’” [I16 (patient)]

“… they don’t seem to explain anything. I mean he said I’d got this... what was it? What is it? CPOD? Well I’ve not really had any dealings with it, really, to be quite honest.” [I17 (patient)]

Participants suggested that the wider societal view was that COPD is associated with smoking and as such, patients felt as if they were to be blamed for the illness:

“I know there’s a lot of public information about that particular disease (diabetes) and more so for Alzheimer’s now and all the different type of cancers, but for COPD, it doesn’t seem to be... you know... a lot of people would say ‘What on earth is COPD? What does it even stand for?’ it’s not very self-explanatory, is it? And also, I think public... as soon as people... as soon as you say that mum’s got lung disease, they associate it with it being a smoker.” [I02 (daughter)]

Adaptation

Despite the very clear impact of breathlessness on daily functioning, patients had adapted to carrying out their daily chores. Individuals themselves had looked at alternative approaches to completing tasks so that professionals were not necessarily alerted to the fact that these issues were potentially problematic for patients:

“I couldn’t do anything generally. I mean I could bend down and do my laces up and then I’d just sit up again and just go into a coughing fit and my chest would go... that’s why I never use laces now. I use these Velcro.” (I19 (patient)]

“Then I’ll get up and do that room and then I will sit down. I do everything at my own pace… I suppose because I’ve had it such a long while... I know what I’m doing and what I’m not doing… I will try little things, but I know my limits – my limitations – and I don’t go above that… I am the sort of person that I grin and bear it.” [101 (patient)]

“Every day is an effort… once I get started, I’m okay… I don’t like the fact that I’m not coping properly… well I’m not coping because I’m not doing what I want to do, what I would like to do… I get satisfaction from when they’re done.” [I04 (patient)]

Patients were already adapting to their functional ability and struggled to delineate between the changes that were directly attributable to their COPD and those that were a result of multi-morbidity or indeed, just signs of getting older:

“It’s a combination of COPD and old age. Sure. But working out what the demarcation between the two is very difficult.” [I18 (patient)]

“I know a lot of people don’t... don’t like to face what their prospects are with different illnesses and ailments and so on and I know the prospect of COPD, the long-term prognosis is not good. It’s not a nice way to finish your life but with my blood pressure I’ll probably have a heart attack anyway so...! The lesser of two evils! It is a combination because even if my breathing was a hundred percent, I don’t think I would be able to do the things I used to do.”

[I20 (patient)]

At times, participants appeared to exhibit a certain stoicism in managing their condition; plodding along rather than asking for help:

“There’s nothing I can do about it!” [I11 (patient)]

“Yeah, I mean you adjust! You will find a way!” [I13 (patient)]

“I know I’m getting older and there’s nothing you can do about it; no creams or tonics or anything that’s going to make any difference… the elixir of life, I haven’t found it yet!” [122 (patient)]

Help, if it were sought, would generally be provided by family members or local support networks, especially for the day-to-day variations in general functioning. This could range from needing physical help with the garden or shopping, to more emotional help, so the person they could call upon if they were having a bad day:

109

“You just feel like you’re fighting a losing battle [seeking help] … my wife I can talk to her better than I can talk to anyone else… I’d sooner sort of run things through her before I went anywhere…” [I03 (patient)]

“I don’t want to be reliant on anybody coming in and doing anything… my partner does do a few things for me when she’s down here and... she’ll do the potatoes and the vegetables and things like that. She’s very good. She’s an ex-carer so she does know what’s happening. So, she knows.” [I19 (patient)]

Participants’ experiences of asking for help from professionals, appears to have been disappointing and verged on the ambivalent at times. This resulted in a lack of consistency and assurance as to whether patients and carers would seek professional help at all. Some patients felt uncomfortable discussing certain aspects of their illness with their GPs, whilst others did not feel empowered to ask the right questions during a consultation. One participant also remarked that consultations with their doctor tended to focus on the physical side of their illness as opposed to the psychological and emotional, so that they usually ended up with a prescription for a pill they did not want nor need:

“Well I would bother the GP if I thought I was welcome to go and talk about problems, but you don’t get that sort of impression. You know… it’s not put over to you that way; you come here if you’re sick. But of course, there’s more ways of being sick than just sort of physical. You just... you bumble along, you know. I mean I would sooner have treatment that way where you’re self-treated through, say therapy, just joining a club than medication.

They give pills to horses – you talk to people.” [I03 (patient)]

“It may be psychological more than physical medicine but nevertheless to them [the patients] it is important and obviously aggravates their condition and I guess GPs generally are just so busy that they don’t pick up on that.”

[I06 (patient)]

“Because you’re not told... we’re not told much more, are you. You’re only told if you ask. Yes, but a lot of people don’t tend to ask, do they? And some people, they... they go and see a professional about something, they come out and think oh, I should have asked so-and-so. So, it ends up, you know...

that’s human nature, isn’t it!” [I22 (patient)]

Resignation and resilience

However, it was very clear that some activities were becoming too much for individuals, despite their best efforts. There was a sense of “weary resignation” rather than of anger or frustration:

“You know, I get out of breath so easy because... I’m sixty-five. I don’t really consider I’m that old… I’m just resigned now to making the best of what I’ve got. Yeah. So... I’m probably beyond wanting help.” [I03 (patient)]

“I keep going whatever… Mind you, that’s probably because I’m getting old and I can’t do the things that I used to be able to do. I used to love running around. I think I get very tired. Very tired very quickly… We’re not the sort of people to give in. We just battle through” [I05 (patient)]

“Well… I wouldn’t tell anybody… yeah. And I suppose it’s back to that view is that I suppose you... get on with it! Well we’re that age group, aren’t we?” [I16 (patient)]

Participants had a very strong sense that their breathlessness would not get in the way of them managing day-to-day and were determined to carry on fighting:

Patient: “I do everything at a slow pace anyway… if you say a disablement or whatever you like to call it and you... adapt accordingly... adjust to it… I keep pushing because I’m not going to let it beat me… If I sat on my backside I would go downhill rapidly…

Wife: He’s stubborn, you know, and I said… ‘It takes you so long to get up those stairs.’ He was crawling up the stairs, you know.

Patient: No… No… No… my bed stays upstairs!” [I08 (patient and wife)]

To this end, participants had recalibrated their expectations in terms of their level of activities and were realistic about what they could achieve day-by-day:

“Well, I don’t let it get me right down because there’s no point in that, is there, especially if you do live alone. I mean you’re just going to be miserable, aren’t you, so you try and... well, that’s when I put the music on or do something

111 else, you know… I’m sort of quite happy as I am jogging along… I mean...

I’ve just got used to being comfortable with it.” [I10 (patient)]

“But it’s just the fact that I don’t get them done… that’s almost classing me as disabled and I’m not. I mean I know damn well that... I get out of breath. I know if I’m in the garden, if I empty the dustbins I’m puffing and blowing. But then, I forget about it, you know. Okay. I just push it to one side because I’d rather... do things… I mean... I managed... I struggled, mind you, but I did manage to get my potatoes put in this year, but nothing else. I’m so pleased when I’ve done the things and I’m so fed up with myself when I haven’t been able to do the things… it is sometimes just the small things, yeah.” [I04 (patient)]

“I’d just plod on, really. When you’re on your own, you’ve got to get on with it.”

[I17 (patient)]

5.3.4 Perceptions of the Concept of Triggers