Living with multiple health problems
Strategies used to cope with multiple health problems
The people we interviewed mentioned various strategies that they had used to manage symptoms and dealings with health services. Three main strategies used were:
• being prepared and on the alert,
• developing the role of an expert patient and,
• “pushing” or “fighting” for one’s own health needs.
Specific strategies involved the use of support groups, online information and libraries. Some people appeared to have taken on tasks that would normally be done by services, such as issuing recalls for appointments, instigating tests and investigations, and arranging patient transport. However, others did not want to become knowledgeable about their condition or even came to regret knowing about poor prognosis.
Being prepared and on alert
The uncertain fluctuations of symptoms, disease progression, pain or side effects from a newly added drug gave people a sense that they had to be on constant alert. Amy spoke about starting every day “with her fists up” against whatever was to come. The need for constant vigilance was an underlying feature of those interviews where people described living with a condition (such as diabetes or epilepsy), that was poorly controlled. Andrew wouldn’t go anywhere without a mobile phone in case of emergency. Tammy took sweets with her whenever she went out in case of having a diabetic hypo. Loraine might suddenly feel unwell whilst relaxed and at rest. Steve had a pituitary condition which he had to alert other medical staff about as it could be life threatening. However, this constant vigilance had downsides. Lottie felt that having to remember to take medication everywhere had taken the spontaneity out of life. Her husband is “on a knife edge” when his mobile phone rings in case it is news of her having a seizure.
I think when you… you’ve got to accept the situation that you’re in, that’s definitely as a… from a personal perspective that’s the first thing that you need to have if you’re going to try and keep going day to day; because if you haven’t got the fight you’ll just kind of drop every time, so you’ve just got to keep kind of always go with your fists up, I like to think. So you’re kind of prepared for anything that’s going on. Just I think it’s just natural, you just… I think you learn things from other people as well, kind of like you learn about certain things; with the support group for instance, they’ll tell you things, they’ll put recipes up, they’re like, you know, kind of friendly when it comes to low fat and your diabetes and things like that; so you just pick things up and adapt it to your…your day-to-day life. Mm.
But having diabetes does affect other illness, 'cos two years ago I had viral pneumonia and I actually was quite ill.
And my blood sugars were all over the place. And that took some dealing with really, 'cos I was having hypos because the GP didn't suggest that I cut down my background insulin. So I dropped to two point seven two nights on a run. But I rang the diabetes nurses and they said to me, you know, cut your insulin down to eight from twenty four.
And I had actually had to phone the GP because he'd prescribed an antibiotic which I think obviously I know it was viral, but there were… the risk of secondary infections with diabetes. So I read the information leaflets it said this medication should be prescribed with care in people with diabetes. So I rang the practice and spoke to the GP, and he said, 'oh no, that's fine, it's perfectly alright.' And then of course I had these horrendous hypos which were a bit scary.
So I rang the diabetes nurse for advice and so she told me to cut it down from twenty four to eight. And in fact I've never got back to twenty four I'm only on twelve now. But it was just… First of all they refused to come to the house. I'd been into the practice the previous week saying that I felt really ill, and he gave me a prescription for antibiotics and said, 'don't take them unless you absolutely have to.' It was somebody I'd never seen before. But my daughter's a consultant at the children's hospital and she said, 'For goodness sake, mum, take the antibiotics.' So I did, but over the weekend I became very ill and couldn't get out of bed without passing out.
I think one of the hardest things is just constantly having to take medication to the fact that your life kind of you can’t be spontaneous, because you’ve got to suddenly think, “Ooh, we, you know, do I need to take this with me? Do I need to have this with me?” Or you can’t just kind of go off. Daft things, we, when we went on holiday last year, I think we probably spent more time trying to sort out travel insurance, letters confirming that I did need needles, the insulin, the drugs and all of that and it’s just, it weighs you down. You kind of think, I just, it would just be so nice just to walk out of the door and just go and do whatever.
And get some sort of calm because I think the problem is now, I mean, I can be in the kitchen making a cup of tea and if I drop something, you know, my daughter is in there like a shot, my husband is in there like a shot and everybody, it’s not just, it doesn’t just affect me.
You know, my husband says he’s on a knife edge every time the phone rings, if his mobile goes off he says his heart start racing, you know. I dropped something or bumped into something doing the hoovering and my daughter has an absolutely panic attack. So it’s it isn’t it isn’t it isn’t just about me, it’s the condition kind of, up until three years ago, I’d never seen a seizure, both my husband, my daughter, my mum, my dad, brother, you know, and numerous friends had all witnessed them and I’d never, ever seen one. And it wasn’t until I went to into the epilepsy hospital for the ambulatory EEG, I saw my first seizure.
And, you know, like, whilst it’s me that has the seizures, I have no recollection of them and I, as soon as it’s over, I need to sleep and I will sleep for a day.
Becoming an expert patient
Some people were developing ‘expert patient’ roles. This involved gathering as much information about health conditions as possible to help with managing them. This was usually achieved through searching for written information and/or getting involved with health charities or research projects. When Pat was put on a new drug her diabetes got worse so she read the drug information leaflet before contacting her GP. John, Fred and Loraine were all acting as patient experts in medical research projects and/or as patient representatives in health forums or NHS services. Tammy, Sue and Michael X volunteered for disease societies or patient charities. Ann and Michael X had attended pulmonary rehabilitation sessions that included education about self-management of their condition. Tammy had attended the DAFNE course for diabetes self-management. Michael X had also attended the NHS Expert Patient Programme. Graham was a tutor on that programme. Sue had delivered presentations to health professionals about her experiences of stroke services. Jean had been used as a “dummy patient” as part of recruitment processes for a new doctor at her surgery. Amy was unusual compared with the others in that her expertise derived from extensive use with health services including an extended period in hospital, rather than from training or other methods.
How did you find that programme, the expert patient programme?
I resisted going on it for a time thinking I’m perfectly capable of managing my symptoms, my conditions and I’m perfectly capable of talking to medical professionals, and being very straight and forward with them and asking them questions without any hesitation. And then I thought to myself, well, I’ve noticed more and more that I I’ve been grinding my teeth and I wonder if that muscular tension needs looking at, and perhaps I can I can learn through this course.
And also perhaps I can I can help other people, you know, be a teacher at heart, as it were, and big-headed I found it I found it quite valuable, and I found meeting other people with very varied chronic conditions of value. So yes, it it’s a good course and my wife has since been on it and other friends, and people through the Breathe Easy group have been on it too. And I’ve pushed it too at Breathe Easy with a lot of people, and spoken of it in in favour of it, in favour of it to the group on occasion.
I’m interested in, in kind of how involved you are in the decisions that your doctor…
Yeah.
…makes, or not?
Yeah. When I was in hospital I learned a lot with the drugs that I was on and things like that. So when I went… when I struggled with my anti-sickness, there was an anti-sickness pill that wasn’t working, so I spoke to my support group, and I was kind of, well, what anti-sickness would you recommend; and I asked my mum what I was on in hospital. And then I’d go to the GP, and I had like my… it’s not working so can I try cyclizine because that helped me in hospital and they’re kind of like, oh okay then [laugh]. I do…do a lot of research for when I go to the GP, because I think I know my body more than anybody else; they can have you down with a medical condition but you kind of don’t know it until you’ve got it yourself. So I like…I do a lot of research, because I don’t…not that I don’t trust my GP because I really do, I trust…trust her and I like her; but I kind of… I feel that from going through that experience, the seven months in hospital, I kind of know when my body isn’t happy or if it’s not reacting well with a drug.
Because there was… it was a time in hospital where they were giving me this drug and I was all over blotches and things like that, and they’d be kind of like, we don’t know what done it. So I’m like, have you changed any of my drugs; and then they’d go, we don’t know, you’d have to ask your doctor. And it’s a bit like, well, they’d pushed things through my NG tube – because I had that – but I… I didn’t have a clue what they were pushing in. So it’s a bit like… that’s why I do a lot of research now, because if the person I’m going to for help doesn’t know what to do, I want to have some idea of…kind of like a backup plan.
So if she was kind of like you know, your anti… there’s not many anti-sickness out there, I’d go, well, there’s… and there’s cyclizine, and she’d… she kind of went, yeah, that could work, and… I kind of have this backup plan for if they’re not going to agree with me, I kind of throw some words, and I’m like, yeah, cyclizine worked with me.
However, some people had observed that doctors didn’t always react positively to patients who were knowledgeable. Loraine felt frustrated that not all doctors she dealt with recognised her expertise and listened to her. Others had found that having past experience of working in health services led to a more equal relationship with the professionals. Patients whose expertise was respected by professionals had been allowed to manage certain aspects of their care themselves. Robert was very active in his own treatment to the extent that he ordered his own tests at the practice and had been given emergency drugs to allow him to self-administer them in the event of a chest infection. Anne X self-managed her own warfarin blood tests and dosage.
In fact, he did used to use me as not a stooge but it was an actual, you know, he said to me, “Would you mind, actually?” Because he has students coming through.
Yes, yeah.
“Would you mind if this young lady saw you?” And I said, “I don’t mind at all.” So he did it once or twice, actually, and then he used to come in, actually, while I was there.
Right.
Sat there and he’d say, “Now then, what’s his diagnosis? What have you, tell me what you’ve found?”
Yeah.
And she used to tell him and one of the things I remember him saying to one young lady, he said, “Now then, you’ve got to realise this, this chap knows more about his illnesses than you do. If you ask him the right questions, he’ll give you the right answers that you need. You’ve got to rely on him. He knows. You just have to ask the right questions and you’ll get the proper information out of him.”
And do you find that that generally the GPs are subscribed to that same idea that you are the expert in your conditions, or do you find that that varies or?
Well, reasonably, I think reasonably. I mean I haven’t had, I don’t, I wouldn’t put myself up that high and I don’t think they would either, but they do ask me the right questions and I do know, in actual fact, if I’m coughing up and it’s brown or coloured, I’ve got an infection.
Right.
And, in fact, I do self-medicate of course.
Right.
I’ve got prednisolone and antibiotics.
Right.
In fact, just at present, it’s usually amoxicillin for chest but the last time I did it with amoxicillin, this is before Christmas actually, the last time I did it with amoxicillin, I did it for the week, you know, and prednisolone.
Yes.
And it’s cut down, they’ve cut prednisolone down, well, completely really, six a day, that’s it. There’s no run-on period or anything and when he when I’d finished and I was coughing and, of course, you cough quite regularly if you’ve got an infection, and it was coloured still after the amoxicillin. So I had.
Right.
Some sputum and I put some in, I coughed and, you know, put some in and I took it down to the surgery, and I just said to one of the girls down there, “Would you send this in for me?”
Yeah.
I didn’t see a doctor or anything like that. I just, I just and it hadn’t got anything written on it. I said, “I can’t write on them round things plus I can’t write with my right hand actually.” So anyway, she wrote on it and it went in. The doctor rang me up, my own doctor rang me up a couple of days later, he said, “You’re on the wrong medication.” He said, “You’re not, you need doxycycline.”
Right. Right.
He said, “Come down. I’ve written a prescription. Come down and get this prescription.” And it was for doxycycline and he and he said on the phone, he said, “I’ve given you two weeks’ supply. Take the two weeks.”
Right.
And it cleared me out.
Other strategies mentioned by the people we interviewed included:
• Take responsibility for your own health
• Use patient support groups / disease charities for medical advice (e.g. Breathe Easy, Epilepsy Society, Heart Clubs)
• Attend specialist voluntary courses on self-management (e.g. diet in diabetes, pulmonary rehabilitation)
• Do your own research in libraries or on the internet
• Keep your own medical records so that you can access information when needed
• Act on your own initiative if your life depends on it
So that’s the feet and the eyes and the diet and they really take care of me very well, and monitor me very closely and I feel very lucky, particularly in view of the reports that are going around recently that there are so many of us diabetics type two, and possibly the facilities are going to be stretched terribly in in the coming years. So it’s really down to you to do the best you can for yourself and to go and get help as much as you can as well, because if they point you in the right direction then, okay, go for it, yeah.
Yeah, I have hundred per cent confidence in her because, as I say, she knows me best and she’s only got my best interests at heart, and I fully trust her because she knows that if I take a certain tablet, it can affect another part of my diabetes or my heart, or I’m going to see a surgeon on Monday about prostate trouble. Now I know for a fact that if he gives me a tablet and I read the instructions and it’ll say, “Do not take this if you’re a diabetic.” Or whatever is in there, I will go down to my GP and say, “What we what do you think about this?” But I find the worst thing is that the surgeon I see on Monday, he should know about the effects of a tablet in relation to ongoing problems but they just seem to, I’m speaking before I’ve seen him, actually, but he might not, you know, but, if he does give me a tablet I think or I read might not be suitable for me, I will go and see my doctor and she will advise me.
And do you feel the onus is on you to.
Yeah.
To.
Yeah, I, well, I look after myself. I mean my doctor tells me what to take but, at the end of the day, it’s up to me to take it. She can only advise me to take it or not to take it. It’s up to me whether I take it and try and look after myself as best of my ability.
However, there were some opposing views on becoming more involved in one’s own care. Barry avoided health information to the extent that he had thrown a medical dictionary away. Gogs’ story was interesting in that, whilst she was a former health worker with access to specialist information, she appeared to regret having that knowledge when she was found that she was in the 10% minority of rheumatoid arthritis patients where control had not been achieved with the available medicines.
Pushing for what you need
A popular strategy was the idea of having to “push” or “fight” for your needs in services. This reflects concerns that people can’t always get the care they think they need. The people we spoke to reported having “pushed” for a variety of things including better hospital food (Fred), extra supplies of tablets to allow for dosing mistakes (Loraine) or a referral to another service. Pat asked for a referral to a hospital diabetic clinic, Michael X wanted a referral to a pulmonary rehabilitation clinic, Lottie to a neurologist who specialised in epilepsy, and Val to a gym.
Sue, who had a stroke in her 40s, described how a lot of aspects of her care had been done “off our own backs”. This included locating charity funding to enable her to pay for aspects of her own care. However, as others noted, this kind of “pushy” approach is seen to require confidence to be able to challenge health professionals when necessary. David suggested that patients sometimes need confidence to speak up but describes how pointing out a problem can help a doctor to address it. However, sometimes no amount of fighting will get you access to what you need if there are insufficient services available. Jean failed to get what she wanted from social services, and Farza was having difficulty in gaining access to a Community Psychiatric Nurse.
The only time I wasn't happy with my treatment was when I was being seen by my GP who at the time, since retired, who was himself diabetic. And when my blood glucose levels got rather high I bumped into the practice nurse outside the practice one day and she said to me…, I didn't know at the time she was also diabetic, but she said to me, 'if you were attending the hospital clinic they'd put you on insulin.' So when I next went in to see the GP, I said, 'You know, this is what I heard.' I didn't tell him the source of my information. And he said to me, 'I'm loath, I'm loath to put my elderly patients on insulin.'
And I thought well, I don't mind being called elderly, because I was sixty something, I thought well, what do you do with your elderly patients whose control is not good? So I just asked him then for a referral to the hospital clinic, and I've been there ever since. So that's about eighteen years.
And I have to say it's been fantastic service. And also there's a drop-in facility with the diabetes specialist nurses who are wonderful, and you can actually ring them up virtually any time, they always get back to you. But you can drop… you can go in on a Tuesday and take, you know, take your problems there and they solve them usually. So that, that's you know, been a very good experience of treatment.
Would you have liked more GP input or?
I guess, knowing it was there, oh god, I don’t know, to be honest. It was like, it’s like having a friend on the end of a phone, you know they’re there if you want them. That’s the only way I could describe it. So if my husband hadn’t heard about this centre, then there is no way, any other way we would have heard about it I don’t think.
Right.
So I guess that sort of answers your question. There wasn’t a great deal of input.
And yes, perhaps there should have been more input. A lot of, like I say, a lot of the things that we have done has been off our own backs. For example, the trainer, I found a personal trainer for when I came out of [rehabilitation centre], where I was having forty-five minutes of physio, forty-five minutes of occupational therapy, forty-five minutes of psychology if I needed it, forty-five minutes of speech and language therapy, again, if I needed it. And that was every day and every patient had their own individual schedule timetable tailored to their needs, which was set up by the, what do they call it, like the management team they have.
Yeah.
Is it SMT, something like that, senior management team.
Right.
Where all the therapists, the doctors, the consultants get together so I had my own timetable. I shared a room with a lady who was in her thirties, who had her own timetable and that that’s the difference. Forty-five minutes a day, five days a week as opposed to an hour a week in the community and there’s the difference. No wonder I am where I am because, when I came out of [rehabilitation unit], we found a trainer in [town], who had worked with stroke patients, and he has a fantastic treadmill which is called an Alter-G, a l t e r g, anti-gravity treadmill.
Right. Right.
And, basically, you put on a pair of lycra shorts, you’re zipped into the treadmill and you just walk. Part of retraining the brain to walk, you literally just walk, walk, walk. The machine calibrates itself so it can take a third or two thirds of your body weight off.
Right.
And, literally, hold you in place while you walk and that’s helped my stamina and my walking but I, again, found out about, we Googled him and found about him and the other thing that I also managed to do was find a charity that offered money, bursary, whatever you want to call it, towards women and I got six hundred pounds from them, which went towards my trainer.
Right. Right.
Need only, where we had two good salaries coming into the house you’re just reliant upon your disability living allowance. So like I say, we got six hundred pounds from this charity towards my trainer.
How would you describe your relationship with your GP - do they just tell them what to do, do you take your own problems and they respond, do you have any say in the treatments that you have?
I think [pause], I tell him what to do.
Right, okay.
Because I'm, yeah, I'm the one in charge, really.
Okay.
No him. sometimes, yeah, he tells me what to do and I do it. But it's not him telling me what to do, so I, I prefer that, I think I prefer it the way it is.
Right, okay.
Because I'm the one who's suffering.
Yeah.
So I'm the best to tell someone, what I'm going through. He's not the best...well, he is, he's got, he's got, he's very knowledgeable. But I am the one who experiences it, on a day to day basis. And I can tell him what's this, what's happened, this, and he can revert back, and I can...you know, we help each other that way.
And how responsive is he? So if you say, look, I really need to see a CPN, does he kind of help you to achieve that, that goal?
Well, he hasn't. I asked to see a CPN, but he seemed to brush it under the carpet, he brushed it under the carpet.
I've been fighting for it for a very long time, for a CPN, a very, very long time. But my psychiatrist says, you know, I think, you know, I think he's gonna see if he, if I can, if he can put a word in for me, and see if I can get one. But it's not easy now, it's not easy. I've explained that to him. It depends on each area.
• being prepared and on the alert,
• developing the role of an expert patient and,
• “pushing” or “fighting” for one’s own health needs.
Specific strategies involved the use of support groups, online information and libraries. Some people appeared to have taken on tasks that would normally be done by services, such as issuing recalls for appointments, instigating tests and investigations, and arranging patient transport. However, others did not want to become knowledgeable about their condition or even came to regret knowing about poor prognosis.
Being prepared and on alert
The uncertain fluctuations of symptoms, disease progression, pain or side effects from a newly added drug gave people a sense that they had to be on constant alert. Amy spoke about starting every day “with her fists up” against whatever was to come. The need for constant vigilance was an underlying feature of those interviews where people described living with a condition (such as diabetes or epilepsy), that was poorly controlled. Andrew wouldn’t go anywhere without a mobile phone in case of emergency. Tammy took sweets with her whenever she went out in case of having a diabetic hypo. Loraine might suddenly feel unwell whilst relaxed and at rest. Steve had a pituitary condition which he had to alert other medical staff about as it could be life threatening. However, this constant vigilance had downsides. Lottie felt that having to remember to take medication everywhere had taken the spontaneity out of life. Her husband is “on a knife edge” when his mobile phone rings in case it is news of her having a seizure.
Amy believes that you have to accept your situation. She tries to keep going with her “fists up” against whatever may come along next. She adapts ideas about managing from others met through support groups.
Amy believes that you have to accept your situation. She tries to keep going with her “fists up” against whatever may come along next. She adapts ideas about managing from others met through support groups.
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Pat’s diabetes was affected when she was prescribed antibiotics. She read the drug information leaflet and saw that it should be prescribed with care in people with diabetes. She phoned a GP and a diabetic nurse.
Pat’s diabetes was affected when she was prescribed antibiotics. She read the drug information leaflet and saw that it should be prescribed with care in people with diabetes. She phoned a GP and a diabetic nurse.
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And my blood sugars were all over the place. And that took some dealing with really, 'cos I was having hypos because the GP didn't suggest that I cut down my background insulin. So I dropped to two point seven two nights on a run. But I rang the diabetes nurses and they said to me, you know, cut your insulin down to eight from twenty four.
And I had actually had to phone the GP because he'd prescribed an antibiotic which I think obviously I know it was viral, but there were… the risk of secondary infections with diabetes. So I read the information leaflets it said this medication should be prescribed with care in people with diabetes. So I rang the practice and spoke to the GP, and he said, 'oh no, that's fine, it's perfectly alright.' And then of course I had these horrendous hypos which were a bit scary.
So I rang the diabetes nurse for advice and so she told me to cut it down from twenty four to eight. And in fact I've never got back to twenty four I'm only on twelve now. But it was just… First of all they refused to come to the house. I'd been into the practice the previous week saying that I felt really ill, and he gave me a prescription for antibiotics and said, 'don't take them unless you absolutely have to.' It was somebody I'd never seen before. But my daughter's a consultant at the children's hospital and she said, 'For goodness sake, mum, take the antibiotics.' So I did, but over the weekend I became very ill and couldn't get out of bed without passing out.
Lottie feels that having to take medication everywhere has removed spontaneity from her life. Her family are on constant alert around her risk of seizures, which causes anxieties.
Lottie feels that having to take medication everywhere has removed spontaneity from her life. Her family are on constant alert around her risk of seizures, which causes anxieties.
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And get some sort of calm because I think the problem is now, I mean, I can be in the kitchen making a cup of tea and if I drop something, you know, my daughter is in there like a shot, my husband is in there like a shot and everybody, it’s not just, it doesn’t just affect me.
You know, my husband says he’s on a knife edge every time the phone rings, if his mobile goes off he says his heart start racing, you know. I dropped something or bumped into something doing the hoovering and my daughter has an absolutely panic attack. So it’s it isn’t it isn’t it isn’t just about me, it’s the condition kind of, up until three years ago, I’d never seen a seizure, both my husband, my daughter, my mum, my dad, brother, you know, and numerous friends had all witnessed them and I’d never, ever seen one. And it wasn’t until I went to into the epilepsy hospital for the ambulatory EEG, I saw my first seizure.
And, you know, like, whilst it’s me that has the seizures, I have no recollection of them and I, as soon as it’s over, I need to sleep and I will sleep for a day.
Some people were developing ‘expert patient’ roles. This involved gathering as much information about health conditions as possible to help with managing them. This was usually achieved through searching for written information and/or getting involved with health charities or research projects. When Pat was put on a new drug her diabetes got worse so she read the drug information leaflet before contacting her GP. John, Fred and Loraine were all acting as patient experts in medical research projects and/or as patient representatives in health forums or NHS services. Tammy, Sue and Michael X volunteered for disease societies or patient charities. Ann and Michael X had attended pulmonary rehabilitation sessions that included education about self-management of their condition. Tammy had attended the DAFNE course for diabetes self-management. Michael X had also attended the NHS Expert Patient Programme. Graham was a tutor on that programme. Sue had delivered presentations to health professionals about her experiences of stroke services. Jean had been used as a “dummy patient” as part of recruitment processes for a new doctor at her surgery. Amy was unusual compared with the others in that her expertise derived from extensive use with health services including an extended period in hospital, rather than from training or other methods.
Michael X went on the Expert Patient Course to learn more about how to manage his conditions and to help other people. He found meeting other people valuable.
Michael X went on the Expert Patient Course to learn more about how to manage his conditions and to help other people. He found meeting other people valuable.
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I resisted going on it for a time thinking I’m perfectly capable of managing my symptoms, my conditions and I’m perfectly capable of talking to medical professionals, and being very straight and forward with them and asking them questions without any hesitation. And then I thought to myself, well, I’ve noticed more and more that I I’ve been grinding my teeth and I wonder if that muscular tension needs looking at, and perhaps I can I can learn through this course.
And also perhaps I can I can help other people, you know, be a teacher at heart, as it were, and big-headed I found it I found it quite valuable, and I found meeting other people with very varied chronic conditions of value. So yes, it it’s a good course and my wife has since been on it and other friends, and people through the Breathe Easy group have been on it too. And I’ve pushed it too at Breathe Easy with a lot of people, and spoken of it in in favour of it, in favour of it to the group on occasion.
Before consulting with her GP, Amy draws on her past experiences in hospital and on information gleaned from a patient support group. That way, she has a ‘back-up plan’ to suggest if the GP isn’t sure what to do.
Before consulting with her GP, Amy draws on her past experiences in hospital and on information gleaned from a patient support group. That way, she has a ‘back-up plan’ to suggest if the GP isn’t sure what to do.
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Yeah.
…makes, or not?
Yeah. When I was in hospital I learned a lot with the drugs that I was on and things like that. So when I went… when I struggled with my anti-sickness, there was an anti-sickness pill that wasn’t working, so I spoke to my support group, and I was kind of, well, what anti-sickness would you recommend; and I asked my mum what I was on in hospital. And then I’d go to the GP, and I had like my… it’s not working so can I try cyclizine because that helped me in hospital and they’re kind of like, oh okay then [laugh]. I do…do a lot of research for when I go to the GP, because I think I know my body more than anybody else; they can have you down with a medical condition but you kind of don’t know it until you’ve got it yourself. So I like…I do a lot of research, because I don’t…not that I don’t trust my GP because I really do, I trust…trust her and I like her; but I kind of… I feel that from going through that experience, the seven months in hospital, I kind of know when my body isn’t happy or if it’s not reacting well with a drug.
Because there was… it was a time in hospital where they were giving me this drug and I was all over blotches and things like that, and they’d be kind of like, we don’t know what done it. So I’m like, have you changed any of my drugs; and then they’d go, we don’t know, you’d have to ask your doctor. And it’s a bit like, well, they’d pushed things through my NG tube – because I had that – but I… I didn’t have a clue what they were pushing in. So it’s a bit like… that’s why I do a lot of research now, because if the person I’m going to for help doesn’t know what to do, I want to have some idea of…kind of like a backup plan.
So if she was kind of like you know, your anti… there’s not many anti-sickness out there, I’d go, well, there’s… and there’s cyclizine, and she’d… she kind of went, yeah, that could work, and… I kind of have this backup plan for if they’re not going to agree with me, I kind of throw some words, and I’m like, yeah, cyclizine worked with me.
Robert’s GP asked him to be seen by medical students as part of their training. Robert self-medicates in emergencies and puts in his own test samples without prompting from the surgery.
Robert’s GP asked him to be seen by medical students as part of their training. Robert self-medicates in emergencies and puts in his own test samples without prompting from the surgery.
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Yes, yeah.
“Would you mind if this young lady saw you?” And I said, “I don’t mind at all.” So he did it once or twice, actually, and then he used to come in, actually, while I was there.
Right.
Sat there and he’d say, “Now then, what’s his diagnosis? What have you, tell me what you’ve found?”
Yeah.
And she used to tell him and one of the things I remember him saying to one young lady, he said, “Now then, you’ve got to realise this, this chap knows more about his illnesses than you do. If you ask him the right questions, he’ll give you the right answers that you need. You’ve got to rely on him. He knows. You just have to ask the right questions and you’ll get the proper information out of him.”
And do you find that that generally the GPs are subscribed to that same idea that you are the expert in your conditions, or do you find that that varies or?
Well, reasonably, I think reasonably. I mean I haven’t had, I don’t, I wouldn’t put myself up that high and I don’t think they would either, but they do ask me the right questions and I do know, in actual fact, if I’m coughing up and it’s brown or coloured, I’ve got an infection.
Right.
And, in fact, I do self-medicate of course.
Right.
I’ve got prednisolone and antibiotics.
Right.
In fact, just at present, it’s usually amoxicillin for chest but the last time I did it with amoxicillin, this is before Christmas actually, the last time I did it with amoxicillin, I did it for the week, you know, and prednisolone.
Yes.
And it’s cut down, they’ve cut prednisolone down, well, completely really, six a day, that’s it. There’s no run-on period or anything and when he when I’d finished and I was coughing and, of course, you cough quite regularly if you’ve got an infection, and it was coloured still after the amoxicillin. So I had.
Right.
Some sputum and I put some in, I coughed and, you know, put some in and I took it down to the surgery, and I just said to one of the girls down there, “Would you send this in for me?”
Yeah.
I didn’t see a doctor or anything like that. I just, I just and it hadn’t got anything written on it. I said, “I can’t write on them round things plus I can’t write with my right hand actually.” So anyway, she wrote on it and it went in. The doctor rang me up, my own doctor rang me up a couple of days later, he said, “You’re on the wrong medication.” He said, “You’re not, you need doxycycline.”
Right. Right.
He said, “Come down. I’ve written a prescription. Come down and get this prescription.” And it was for doxycycline and he and he said on the phone, he said, “I’ve given you two weeks’ supply. Take the two weeks.”
Right.
And it cleared me out.
• Take responsibility for your own health
• Use patient support groups / disease charities for medical advice (e.g. Breathe Easy, Epilepsy Society, Heart Clubs)
• Attend specialist voluntary courses on self-management (e.g. diet in diabetes, pulmonary rehabilitation)
• Do your own research in libraries or on the internet
• Keep your own medical records so that you can access information when needed
• Act on your own initiative if your life depends on it
Ann feels lucky that she is well cared for with regard to her Type II Diabetes. However, she feels that services will become more stretched and people need to help themselves as much as they can.
Ann feels lucky that she is well cared for with regard to her Type II Diabetes. However, she feels that services will become more stretched and people need to help themselves as much as they can.
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Nigel feels he gets good advice from his GP about whether he can take new drugs on top of his existing illnesses and treatments. However, it is up to him to take the drugs and look after himself.
Nigel feels he gets good advice from his GP about whether he can take new drugs on top of his existing illnesses and treatments. However, it is up to him to take the drugs and look after himself.
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And do you feel the onus is on you to.
Yeah.
To.
Yeah, I, well, I look after myself. I mean my doctor tells me what to take but, at the end of the day, it’s up to me to take it. She can only advise me to take it or not to take it. It’s up to me whether I take it and try and look after myself as best of my ability.
Pushing for what you need
A popular strategy was the idea of having to “push” or “fight” for your needs in services. This reflects concerns that people can’t always get the care they think they need. The people we spoke to reported having “pushed” for a variety of things including better hospital food (Fred), extra supplies of tablets to allow for dosing mistakes (Loraine) or a referral to another service. Pat asked for a referral to a hospital diabetic clinic, Michael X wanted a referral to a pulmonary rehabilitation clinic, Lottie to a neurologist who specialised in epilepsy, and Val to a gym.
Sue, who had a stroke in her 40s, described how a lot of aspects of her care had been done “off our own backs”. This included locating charity funding to enable her to pay for aspects of her own care. However, as others noted, this kind of “pushy” approach is seen to require confidence to be able to challenge health professionals when necessary. David suggested that patients sometimes need confidence to speak up but describes how pointing out a problem can help a doctor to address it. However, sometimes no amount of fighting will get you access to what you need if there are insufficient services available. Jean failed to get what she wanted from social services, and Farza was having difficulty in gaining access to a Community Psychiatric Nurse.
Following advice from a nurse, Pat got her GP to refer her to a diabetic clinic. She has been satisfied with the service which she describes as “a very good experience of treatment”.
Following advice from a nurse, Pat got her GP to refer her to a diabetic clinic. She has been satisfied with the service which she describes as “a very good experience of treatment”.
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And I thought well, I don't mind being called elderly, because I was sixty something, I thought well, what do you do with your elderly patients whose control is not good? So I just asked him then for a referral to the hospital clinic, and I've been there ever since. So that's about eighteen years.
And I have to say it's been fantastic service. And also there's a drop-in facility with the diabetes specialist nurses who are wonderful, and you can actually ring them up virtually any time, they always get back to you. But you can drop… you can go in on a Tuesday and take, you know, take your problems there and they solve them usually. So that, that's you know, been a very good experience of treatment.
Sue organised her own physiotherapy following a stroke using Internet research conducted by her and her husband. She even found a fund she could claim from to pay towards the cost of a health trainer.
Sue organised her own physiotherapy following a stroke using Internet research conducted by her and her husband. She even found a fund she could claim from to pay towards the cost of a health trainer.
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I guess, knowing it was there, oh god, I don’t know, to be honest. It was like, it’s like having a friend on the end of a phone, you know they’re there if you want them. That’s the only way I could describe it. So if my husband hadn’t heard about this centre, then there is no way, any other way we would have heard about it I don’t think.
Right.
So I guess that sort of answers your question. There wasn’t a great deal of input.
And yes, perhaps there should have been more input. A lot of, like I say, a lot of the things that we have done has been off our own backs. For example, the trainer, I found a personal trainer for when I came out of [rehabilitation centre], where I was having forty-five minutes of physio, forty-five minutes of occupational therapy, forty-five minutes of psychology if I needed it, forty-five minutes of speech and language therapy, again, if I needed it. And that was every day and every patient had their own individual schedule timetable tailored to their needs, which was set up by the, what do they call it, like the management team they have.
Yeah.
Is it SMT, something like that, senior management team.
Right.
Where all the therapists, the doctors, the consultants get together so I had my own timetable. I shared a room with a lady who was in her thirties, who had her own timetable and that that’s the difference. Forty-five minutes a day, five days a week as opposed to an hour a week in the community and there’s the difference. No wonder I am where I am because, when I came out of [rehabilitation unit], we found a trainer in [town], who had worked with stroke patients, and he has a fantastic treadmill which is called an Alter-G, a l t e r g, anti-gravity treadmill.
Right. Right.
And, basically, you put on a pair of lycra shorts, you’re zipped into the treadmill and you just walk. Part of retraining the brain to walk, you literally just walk, walk, walk. The machine calibrates itself so it can take a third or two thirds of your body weight off.
Right.
And, literally, hold you in place while you walk and that’s helped my stamina and my walking but I, again, found out about, we Googled him and found about him and the other thing that I also managed to do was find a charity that offered money, bursary, whatever you want to call it, towards women and I got six hundred pounds from them, which went towards my trainer.
Right. Right.
Need only, where we had two good salaries coming into the house you’re just reliant upon your disability living allowance. So like I say, we got six hundred pounds from this charity towards my trainer.
Farza likes to lead GP consultations and has been fighting to gain access to a Community Psychiatric Nurse (CPN) for some time.
Farza likes to lead GP consultations and has been fighting to gain access to a Community Psychiatric Nurse (CPN) for some time.
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I think [pause], I tell him what to do.
Right, okay.
Because I'm, yeah, I'm the one in charge, really.
Okay.
No him. sometimes, yeah, he tells me what to do and I do it. But it's not him telling me what to do, so I, I prefer that, I think I prefer it the way it is.
Right, okay.
Because I'm the one who's suffering.
Yeah.
So I'm the best to tell someone, what I'm going through. He's not the best...well, he is, he's got, he's got, he's very knowledgeable. But I am the one who experiences it, on a day to day basis. And I can tell him what's this, what's happened, this, and he can revert back, and I can...you know, we help each other that way.
And how responsive is he? So if you say, look, I really need to see a CPN, does he kind of help you to achieve that, that goal?
Well, he hasn't. I asked to see a CPN, but he seemed to brush it under the carpet, he brushed it under the carpet.
I've been fighting for it for a very long time, for a CPN, a very, very long time. But my psychiatrist says, you know, I think, you know, I think he's gonna see if he, if I can, if he can put a word in for me, and see if I can get one. But it's not easy now, it's not easy. I've explained that to him. It depends on each area.
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