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Living with multiple health problems

Satisfaction with care for multiple conditions

People commonly valued doctors who listened to them and explained things sufficiently for them to understand what they needed to know about their conditions or treatments. Amy praised her GP for being a good listener. Tammy found her GP to be honest and straightforward and when she recommended that she take time off work, that advice was just what she needed. Angela also valued being signed off work. Generally, people were very satisfied with GPs who were seen as involved in care in a more holistic (or ‘whole person’) and patient-centred way. The way that medicine is organised according to specialisms relating to types of conditions or those affecting a particular area of the body can create problems for people with multiple health problems. However, specialists are highly valued in relation to individual health conditions and GPs are sometimes criticised for not being specialist enough in individual diseases.
 

Val thinks that her health problems might be related. However, the organisation of the NHS into specialities seems to make the specialists reluctant to view her as a whole person.

Val thinks that her health problems might be related. However, the organisation of the NHS into specialities seems to make the specialists reluctant to view her as a whole person.

Age at interview: 70
Sex: Female
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Now, it seems like you’ve described conditions and symptoms which are related to obstetrics and gynaecology, then we’ve got the, kind of, CFS, fibromyalgia, osteoarthritis, kind of, group of symptoms, and then we’ve got the problems with the heart. Do you see them as three separate groups of symptoms, or do you think they might be associated with each other in some way, that one’s caused the other, or…?

I’d be very surprised if they weren’t associated with each other in some way. For example, we all now go on Google, so the minute they said ankylosing spondylitis, which I’d never heard of, I started looking at it. Now, that can actually cause heart problems…

Right.

…so, it could well be. But, you know, I mean, I think, that’s one of the problems with the NHS, and I can’t see how they can overcome it, the body is a very complex system, and it’s a mind-body system, and everything is linked. But, the NHS is totally incapable of looking at people as individuals in a holistic way. So, you will be compartmentalised, you’ll go to little empires, and each person will deal with you separately, but they won’t look at you as a whole person. I mean, I’ve tried to overcome that because I am very organised so… I mean, I’ve actually got on my computer my complete medical history, that I’ve written, not they’ve written. And so, if I’m going for a specific problem to a specific consultant, I will do a thing that tells them what’s happening at the moment with other things. Ninety per cent of the time, even more than that, they will glance at the bits of paper, but they don’t really want to look at the bits of paper, they want to do it in their way. 

And, I understand that, because they’re highly trained professionals, but I do think sometimes they ought to give patients credibility. I think they ought to be able to listen a bit better to… patients know their bodies, patients, by and large, if you ask them the right questions, if you give them the opportunities to talk, they can actually give the consultants good clues, which should help them. But, consultants are a breed unto themselves, basically.
 

When Nigel gets advice from specialists at clinics and hospitals he always checks back with his GP about tablets, because she knows about his other conditions and treatments.

When Nigel gets advice from specialists at clinics and hospitals he always checks back with his GP about tablets, because she knows about his other conditions and treatments.

Age at interview: 58
Sex: Male
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And if you do get, you mentioned there that you perhaps see a different specialist and there’s a different focus.

Yeah.

For each of those?

Yeah.

How do you deal with that? 

I always refer back to my GP.

Right.

Because she knows me best. These people see me once or maybe twice. My GP sees me maybe twice a month and she knows how I react to certain situations. I’ve suffered with depression since I was twenty and she knows if I’m on a certain tablet, that can trigger a depression again. So she’ll advise me or she’ll advise me not to take that tablet and to give an alternative. I always I always go back to my GP because she knows me best and she knows more about me than the people at the clinics, at the hospitals.
 

Loraine sees many specialists but chooses to consult a geriatrician for epilepsy, rather than a neurologist, because he sees “the whole picture.”

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Loraine sees many specialists but chooses to consult a geriatrician for epilepsy, rather than a neurologist, because he sees “the whole picture.”

Age at interview: 56
Sex: Female
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Is there anyone that considers you or do they consider you as a whole, and your conditions as a whole at all?

I think they’ve got to, yeah. Definitely, I mean I’ve had my ENT consultants say to the juniors say this is neurological causation so obviously. Same with the ophthalmologist and the other consultant. I see a geriatrician for my epilepsy.

So he does that as well, he sees the whole person. You’ve got to have the whole picture. They’ve got to, they can try and sort of sub-specialise all they like but, when it comes to people like myself, they’ve got to consider that might kick in.
The people we spoke to were satisfied with doctors who were able to pitch medical information at just the right level for them. For example, Mohammed felt his GP gave him just the right level of information about diabetes that he needed. Nigel said his GP knew him very well and was able to get him through a period where he felt suicidal; as well as resolving conflicting advice he had received from specialists and organising smooth referrals for prostate treatments. Jeffrey trusted his GP’s advice and felt that decisions were always made in his best interests. However, Lee’s experience had rather been that specialists “do the telling,” rather than listening. Angela had found mistakes in medical letters which she thought demonstrated that doctors were not listening to her properly.

Health workers’ communication skills vary between sectors, services and individuals. Judgements about whether to put trust in an individual health worker depended on their approachability and whether they are seen to be listening. Fiona was pleased that her GP did not “push” antidepressants on her. Amy contrasted her experience with hospital staff who did not listen to her with the supportive approach of her GP. Tammy and Lottie both said that they had found nurses that they saw regularly to be supportive and they considered all aspects of their care. Ann and Nigel valued regular diabetic checks in order to spot any problems early on.
 

When Fiona attended her GP with depression it was suggested at first that she take anti-depressants. The GP listened when she said she didn’t want them and did not prescribe them.

When Fiona attended her GP with depression it was suggested at first that she take anti-depressants. The GP listened when she said she didn’t want them and did not prescribe them.

Age at interview: 25
Sex: Female
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I have a good input. Yeah, I mean I went along for a sort of a couple of, I think it was last year I started feeling a bit, sort of quite depressed so I did.

Right.

So I did go along to get it sort of checked over, and I know the immediate reaction was sort of put straight onto antidepressants. And when I said I didn’t, I wasn’t comfortable with going on them and I wasn’t happy being on them, then they did listen and they didn’t try and force it on me. They just said the option is there if I did change my mind, and I feel I feel that whenever I do go along, whichever GP I see, they do listen to me.
 

Amy thinks her GP is understanding and explains things in detail. She contrasts with an experience in hospital where staff did not listen and accused her of being “a drama queen.”

Amy thinks her GP is understanding and explains things in detail. She contrasts with an experience in hospital where staff did not listen and accused her of being “a drama queen.”

Age at interview: 25
Sex: Female
Age at diagnosis: 22
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And what is it that you value about your GP?

She’s very understanding, and she kind of…she listens when I talk. I’ve had GPs in the past where they’ll kind of just go, no, we can’t give it to you, or, here you go; and give you a prescription and not really kind of talk to you or tell you what you’re taking and things like that. But my current doctor and GP, she’ll go…if I have to go on any medication, or antibiotics, she’ll explain it down to the finest detail. And she doesn’t like me going unless I’m happy and I fully know kind of what I’m doing now. So in that way she…she listens I think, because in my…well, in my experience in hospital, um, the night I went into ITU the second time, I was aware that I went into multi-organ failure and a peri-arrest, and about five hours prior to that I kind of I knew something was going on, and I was buzzing, and… said, you’re a drama queen, there’s nothing going on; and then five hours later I kind of went into multi-organ failure and stuff. So I really appreciate it when a health professional kind of listens for, like, if I’m having bad sickness she’ll ask me to explain it, and she listens and takes it in, makes a note, and then she kind of goes through what’s best, and I think that’s kind of what a GP should be like, kind of talking to you and explaining and things like that. And then she…she listens really well, that’s what I appreciate the most; because I’ve had so many professionals kind of not really listening; so when someone does listen I kind of…you appreciate them a lot more.
 

As a lifelong patient, Loraine feels she knows more about her conditions than some doctors do. She feels neither listened to, nor believed, when she tries to explain her conditions.

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As a lifelong patient, Loraine feels she knows more about her conditions than some doctors do. She feels neither listened to, nor believed, when she tries to explain her conditions.

Age at interview: 56
Sex: Female
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Because even when I actually gave a junior doctor an opportunity. He was about to do his last exams. And I was about to have an eye clinic.

And the ophthalmologist I had, I knew for a fact he knew his meat and drink. He was brilliant and I said to this junior, because I went to church, we knew him through church, I knew him as a boy, so I said to him, “If you’d like to, seeing as you’ve got exams coming up, you can come and sit in on my test.” He didn’t take advantage of it and he became a GP later on and wished he had, because he was totally confused. He’d come across a multiple case and he was lost because he hadn’t taken advantage of that appointment. I could have given him a freebie so he could learn, so he could listen to a patient he knew what was, because I understand that he agreed to test him on my conditions and what they all mean in basic plain English. And often I find when, I had an experience last year, I went for an appointment and explained to this guy what my condition meant and I explained to him that they couldn’t fully test because my epilepsy was getting in the way.

Now what do you think the junior did? He didn’t believe me. He went to ask and see his boss, he said, “Well I’ve had to go and check.” He said, “The consultant has just said.” I said, “I’ve just told you that.” And I was thinking, “Hang on a minute, I’m a lifelong patient.”

And I was thinking, this is a junior about to properly, about to be a consultant in this field, I don’t think, he’s got a chance. That’s what I mean. They don’t use their initiative. Even when a patient tells them they’re life long, there’s just no initiative to actually believe a patient. Sometimes the patient knows best.

So do you.

And they don’t always understand that.

I mean do you feel that you’re listened to on the whole in consultations or is there a lack there or?

[Laughs] sometimes yeah, sometimes no. It’s difficult when you’ve got a new consultant, to know how to approach them actually.

Because you don’t know whether they’re listening to you, or going by what they know, or going by what they think they know.
In short, people valued health workers who listened to them and gave advice which matched their expectations and needs. People were satisfied with GPs who were able to sort things out Seeing the same GP or specialist was also highly valued as was support provided following hospital discharge (also see ‘Continuity of care’).

As noted in the topic ‘Prioritising multiple health problems,’ doctors and patients might not agree on which conditions are the most in need of attention. Whilst GPs were valued for being able to take a ‘whole person view,’ Anne Y felt that her GP could not help her to come to terms with her epilepsy diagnosis as they are not a specialist in that condition. Eric felt that health services only deal with one problem at a time, which is clearly an issue for people with multiple health problems. Val felt that care is not holistic enough and that conditions seem to be treated in isolation and without regard to her other health problems. Tammy would have preferred one doctor to take charge of everything and her experience was that her care had been more holistic when she was a child. Others were embarrassed about using health care too much and recognised that their GPs seemed to be overworked. Ronald kept raising an issue that was bothering him but received no response.
 

Leonard thinks his GP’s care is ‘wonderful’. The GP doesn’t focus on just one condition but all his health issues.

Leonard thinks his GP’s care is ‘wonderful’. The GP doesn’t focus on just one condition but all his health issues.

Age at interview: 73
Sex: Male
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Okay and which one do you feel that you GP focuses on the most of your conditions?

I don’t think my GP focuses on anything other than if I’ve got a complaint when I go in or they’ve discovered something, which could be relevant to my wellbeing, because I find my GP is totally for me. She’s absolutely wonderful. She has been from day one. She’s even phoned me up at eight o’clock in the evening, on several occasions, to tell me [blah blah blah]. Tell me there’s something wrong or I need to see you or do this do that, and I find that quite heart numbing, if you like, that a doctor could spend all those hours in the surgery and then, she may still be in surgery for all I know going through a computer log, phone me up and tell me.

You know, rather than leave it until the following day. It’s, I think it’s wonderful. Yeah, I really do, I think it’s wonderful. What, in this in this area we’ve got a fabulous health service. What more what more can I say? So she doesn’t she doesn’t really focus on anything more than any other, just my overall condition. I’ve got so much wrong with me at the moment that that I suppose it could be over-powering sometimes but that’s life. If something crops up, she’ll fix it. She told me ten years ago, well, ten years and three months ago that she’d keep me alive for ten years and she did and, when I asked her three months ago, “Can I have another ten years?” She said, “Ah well,” she said [laughs]. Bless her. No, it’s wonderful. Really nice [laughs]. I go when I go.
 

Ronald has told health care staff many times that he is having problems with what he thinks is a hernia. Nobody responds to him on this issue.

Ronald has told health care staff many times that he is having problems with what he thinks is a hernia. Nobody responds to him on this issue.

Age at interview: 70
Sex: Male
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And would you like more help with any of your other conditions, or is the one that gets the most help about right or?

Well, the cholecystectomy, there’s not much they can do. The only thing that I may have is a hernia but I’ve mentioned this so many times to my GP and various other people, and they don’t seem to offer a comment at all, which I think, you know. Because I am a bit lopsided and I know what a hernia looks like, and not many people seem to be interested. But it doesn’t cause, very very little physical discomfort. 

The only thing is, I have to lie on my right side when I sleep because it’s the most comfortable. Other than that, nothing really affects me much at all.

Do you feel that the GP prioritises different things to you yourself or.

No.

Is the match about right or? 

I don’t I don’t know really this, you know, it’s a case of I would think, there’s a job to do and he just sees so many people, and it’s just one of those things. I think it’s the system rather than the doctor.
 

Eric has no problem bringing up issues with his GP but his experience has been that the health service only deals with one problem at a time.

Eric has no problem bringing up issues with his GP but his experience has been that the health service only deals with one problem at a time.

Age at interview: 84
Sex: Male
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Is that something you feel you could broach again with the GP or do you feel that?

No, I don’t feel restricted in talking about it at all, you know. It’s just that when you go to see the GP, you’ve got your sort of immediate problem to sort out, if you’ve got a problem and that’s the only time you go to a GP, if you’ve got a problem you know, and like I did on this occasion with the bladder inspection. I went there because I was having pain but it wasn’t the time to start talking about prostate again. It was just a question of getting that bit sorted out.
Health problems affect people in different ways (see ‘The personal impact of multiple health problems’). The complexity brought by different combinations of health problems and drugs creates problems for patients and doctors alike. Andrew spoke about how health care needs to account for lots of different factors in order to be successful. Some people referred back to their GP when faced with conflicting advice. For example, Lottie said that only her GP had an overview of all of her problems. However, Anne X said that whilst doctors do their best, it is impossible for them to know about all medical conditions.
 

Andrew points to the various factors and issues involved in illness. He thinks this is complicated for health services to deal with.

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Andrew points to the various factors and issues involved in illness. He thinks this is complicated for health services to deal with.

Age at interview: 65
Sex: Male
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I mean I think we’re I think we’re, I don’t want to get preachy because especially wearing a dog collar, but I think we’re actually getting to the stage now where we’re discovering that illness in all its forms is multifaceted and it isn’t just about something that’s wrong with a bit of your body. There all sorts of different things in play and that, in fact, successful healthcare has got to actually, deal with all of those things at once, and how you do that for everybody when they’re all different, you know, is what makes the situation impossible or very complicated.
 

Anne X thinks it would be a “very tall order” for a health professional to be able to view her as a “whole person.” It cannot be easy for them given the number of problems she has.

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Anne X thinks it would be a “very tall order” for a health professional to be able to view her as a “whole person.” It cannot be easy for them given the number of problems she has.

Age at interview: 79
Sex: Female
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Do you find that she concentrates on one condition in particular or does she look at your conditions as a whole, or how does that work?

Well, I think it would be difficult to look at me as a whole because only really someone who is holistic as well as a GP would, and it’s a very tall order, you know, to be an expert in the human body and to know just what’s going on and what’s the best way of treating it. If I could, I’d have done herbal herbalism or something.

Not necessarily, not the other one, not acupuncture. That is very, very successful but I can’t have it because of the warfarin.

I think they can only do the best they can. I’m just amazed how much they know, in view of the fact that each area requires a specialist.

To know it fully and you get all these diverse people coming in and you daren’t make drastic mistakes with them, and I’m surprised how much they sort of know. So they can’t and they’ve got to gloss over you. When you’ve got as many problems as I have, it’s probably very difficult, I’m not an easy person because I don’t really want a test unless I really need one, particularly a TOE, which scares the pants off me, because I had a very awful one the first time.
Given the apparent need for a tailor made approach to the clinical management of people with multiple health conditions (see our Resources section) people’s individual wider life circumstances are important. Barry became aggressive and depressed after having a stroke but found that there had been no support for his psychological problems. Similarly, Derrick had found it difficult to control his emotions after a stroke, but there didn’t seem to be any support from the health service around that. Pat and Fiona said they wanted more psychological support in relation to their health problems. Such issues appeared magnified when people lived alone (see also ‘Peer support’). On the whole, these accounts highlighted that there sometimes seemed to be a lack of perceived fit between what people felt they needed help with and the support they received.
 

Pauline says that she doesn’t see any planning when Michael Y is discharged from hospital. She feels that there is insufficient assessment of whether they can cope at home.

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Pauline says that she doesn’t see any planning when Michael Y is discharged from hospital. She feels that there is insufficient assessment of whether they can cope at home.

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And in terms of general well-being.

Yeah.

For both Michael and yourself.

Yeah.

Do you feel that that’s taken into account or considered by medical professionals?

I would say that once the actual diagnosis of what the problem is, i.e. his seizures, and his medication, there doesn’t seem to be any correlation with sort of going home and, “How are you going to cope? Do you think you have the right equipment etc.?”

I mean on his discharge notes this last time, I was given a copy and, obviously, they have a copy and they send a copy to our local GP.

And it actually says the date that he was admitted and it says the date that he was discharged and it says, “Discharge destination unknown.” I said to Michael, “Well, do they not know we’re going to our home address?” “Is he living on his own? What’s the house like? Can he move around the house? We know he’s not walking properly. Do you have stairs to contend with? How does he wash himself?” You know, there is no sort of consideration in that way as to how things are going to be when you’re at home. You know, it’s alright in hospital when you need a wash and you might need a nurse there that can come and help you or feed you, or they’re supposed to do anyway [laughs].

Yes.

But there’s none of that for when you go home. But I mean I know I’m going to take care of Michael. I know he’s in safe hands at home but nobody says, “How are you going to manage?”

There’s almost the…perhaps this expectation that, you know…

Well, they just assume.

…that you will. 

“Right. We’ve discharged him now. That’s the end of it and we’ll see you in your six week check-up.”
 

Derrick gets frustrated that he cannot control his emotions following a stroke. He feels there was a lack of back-up from health services afterwards.

Derrick gets frustrated that he cannot control his emotions following a stroke. He feels there was a lack of back-up from health services afterwards.

Age at interview: 61
Sex: Male
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In terms of physically, are you feeling better now since the stroke or are things still a little difficult or?

Things are still difficult, emotions I find a lot. 

Right.

That I can’t close, can’t control my emotions ever since the stroke.

Okay.

When you’re when you’re supposed to be laughing, you’re you tend to cry, you know, and when you’re supposed to be crying, you excuse me, sorry, you laugh then as if as if you are happy all the time, you know.

Yeah, yes.

So it’s that I that I find very, very frustrating. I’ve had a lot to, lot of work getting my head around that.

Yes, yeah.

So things are well, things are never the same after the stroke. I had the stroke on my left side and I’ve never had the strength back in it.

Right. 

I mean I can’t do certain things like I need to, I’ve lost nearly three quarter use of the legs. She won’t she won’t come around, which is very difficult when you’re changing clothes and things that I still get frustrated from time to time.

Okay and are you able, are you mobile now or are you still.

Yes, I’m mobile, yes, yes, yes.

Okay.

Yes, I am able to go around now slowly, yes.

Okay and just in terms of when you had the stroke, did you feel that it was explained to you what had happened and also what you might expect, or did you feel that there were gaps or that type of thing?

Not really. As I say, there was, the doctor did explain what had happened and I had scans and things like that and but, as I say, there was there wasn’t a lot of back-up.

Right. 

After the stroke. They like they didn’t want to bother, for some unknown reason. 
 

Jean has been told that there’s nothing more that can be done for her health conditions. Without social support, she wonders whether life is still worth living.

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Jean has been told that there’s nothing more that can be done for her health conditions. Without social support, she wonders whether life is still worth living.

Age at interview: 80
Sex: Female
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So is it more your GP that you deal with now relating to your conditions, or do you still have specialists that you see or?

I don’t see any specialists now. Only my GP. There’s nothing they, there’s nothing they can do.

I mean I’ve been told categorically, “There’s nothing we can do.” They can’t operate on my brain to repair the damaged tissue. They can’t operate on my heart because the heart muscle has packed up and the diabetes is incidental to the heart condition and the kidneys. I mean they all start packing up together. My lungs are packing up and not being able to breathe properly. That’s just getting, because the heart doesn’t pump so I get fluid in my lungs.

I hate taking diuretics but I know I know I have to take them. It’s according to how much longer I want to go on living I think, and on a day like today you want to go on living, when the sun is shining [laughs].

You know. And my cat, what would she do without me I say, yeah. Oh I don’t know. I just, I’m sorry to be moaning about it.

It’s really important for us to hear the wider impact that your conditions have on you as well.

No, I think it’s the isolation. It’s the isolation, lack of support. I think if people with my conditions had more support just to make life a little bit more bearable for them, you know, people would live healthy and happier lives and they would stay healthier. I’m quite certain of it. You can get some exercise, if you can enjoy some of the pleasures in life, just even getting out in the fresh air, like this morning, going round the shops, it was great and that’s the first time since before Christmas that I’ve actually gone and looked in a shop window, not just dashed in, grabbed what food I need and come out again.

You know, I don’t think people realise. It wasn’t wanting to spend money. It was just to see something different, do something a little bit different, pass the time of day with somebody different, you know. 

Yes, just that change of scene. Just a change of scene.

Change of scenery and feeling that you’re alive and you’re not just existing, you know. People are not just waiting for you to pop off, you know.
As well as feeling a need for more emotional and psychological help, some people said they would like help with more practical issues such as cleaning or domestic chores. For people with or without a diagnosis of a mental health problem, psychological support seemed to usually involve a long wait for help. When they couldn’t get such support from services some people looked for peer support, whether in face-to-face groups or online forums (see also ‘Self-management of medicines). People found things such as seminars and information sessions (e.g. on diet, lung problems) to be valuable; as were those instances where the NHS had contributed to the costs of, for example, gym membership or slimming classes.
 

Angela found it hard going back to work after a stroke and it was 9 months before she received psychological support.

Angela found it hard going back to work after a stroke and it was 9 months before she received psychological support.

Age at interview: 46
Sex: Female
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I had three months off work after my stroke, and the first couple of weeks I just sat around really staring into space and trying to come to terms with it all.

And is that anything that you received any support with at all or?

No, not really. It was about six weeks before I got any referral to a physiotherapist and it was a whole nine months before I was offered any psychological help, and I feel that was way too late. Before when I went back to work, I found it extremely hard and I got, I was really struggling to do my job and at about the five months point I was really thinking it would have been better that I had died than to be struggling the way I was. 

But eventually, I managed to pull myself out of that sort of… I had big fights with myself at one weekend. I was telling myself that the more I go round thinking I’m miserable, I don’t want to be here, the more I’m going to feel that way. So yeah, I had a bit of a breakdown that weekend and went into work with a better attitude on the Monday. But I really did go through a couple of very dark months where I would rather have been dead, and the psychological support I think came far too late.

Is that something that you asked for, you requested from your GP or was it offered or?

I did go to see my GP regarding my depression and I was, you know, given antidepressants for that but no, the psychological support came from [name] Hospital itself and that is generally the amount of time it takes for the referral to go through. 
 

Ann was referred on a course that involved being taught exercises and being given dietary advice. She also attends a Breathe Easy group and went to a seminar at her local GP surgery.

Ann was referred on a course that involved being taught exercises and being given dietary advice. She also attends a Breathe Easy group and went to a seminar at her local GP surgery.

Age at interview: 68
Sex: Female
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I was recommended to go on pulmonary rehabilitation courses and that involved doing exercises and being informed of what to eat and what to do in order to look after, the chest this is, and to teach you how to do exercises. Because several people in the class didn’t even move from their chairs, possibly because their lung conditions were so bad but they were taught ways that they could exercise themselves that they’d never realised before. And we were also given time to go to a gym, a local gym. Other people in my Breathe Easy group went to the hospital gym which was local to them, but I live fifteen miles away from that particular hospital so we were allowed to use the local gym Tuesday mornings. And we did it for six weeks, and you took a test by running around a set of chairs for so long to start with, and they measure how long it took and how long it took to get your breath back and things like that. And at the end of the course, when you’d worked on all these gym machines and so on, they did the same run around business to see if you’d improved, and that was good. And then we had one which was a little bit more theory actually held at the GP’s surgery and that was very interesting as well. I didn’t learn a lot more than I knew already but then I’ve been at it for quite a long time before I went onto that, but some people who’d been fairly recently diagnosed, it was very, very useful for them. So the pulmonary rehabilitation was great. So that’s worth having if you ever get the opportunity.
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