Living with multiple health problems
Continuity of Care
“Continuity of care” describes the way in which different aspects of people’s health care are joined up or follow on from each other. People with more than one health problem might be seeing doctors in different departments and hospitals who may or may not communicate with each other or the person’s GP. Even with one condition alone there might be disagreement between different doctors. When people spoke about the continuity of care it was often about whether they were satisfied with care. The main issues in care continuity people spoke about were:
• seeing different health professionals,
• the transfer of medical information between departments, and
• whether people were followed-up and monitored or not.
The issue that most concerned people was whether they always saw the same GP (at their local doctor’s surgery) or the same consultant or other health worker (in hospital departments). Seeing the same professional at every visit was highly valued. Derrick said he trusted his GP completely and felt he could talk to him as if he was one of the family. Barry felt his GP knew him well; he appreciated that when he phoned the surgery for help the GP would call him back promptly. Nigel was very satisfied with his GP when she paid close attention and made a speedy referral. Anne Y felt that her epilepsy management had improved since she had been seeing the same consultant for a long period of time.
Nigel is very satisfied with his GP and describes how she followed through when tablets didn’t have any effect by making a speedy referral for investigation of his prostate.
Nigel is very satisfied with his GP and describes how she followed through when tablets didn’t have any effect by making a speedy referral for investigation of his prostate.
Anne Y is pleased to have been seeing the same epilepsy consultant for a few years but wonders what will happen if he leaves.
Anne Y is pleased to have been seeing the same epilepsy consultant for a few years but wonders what will happen if he leaves.
I think its fine now. I think, obviously, before I was very ill, I, it bothered me that I had to keep trying to explain myself to more to the doctor, I think, to make her take notice of the fact that I was so ill.
And I didn’t like, at the time, because there was quite a variety of epilepsy doctors I was seeing.
Right.
Whereas now, the consultant, you know, I’ve been seeing him for quite a few years.
So I feel better with him and I, it worries me sometimes that he’ll go and then who will the next one be? But…
Right. Okay, so that continuity.
[mm]
Is important?
Yes, I, yeah, I yeah, I find that is that is important now, you know. At one time, when the nurse left, he did think he would be getting a replacement nurse and, of course, that’s just drifted on and he hasn’t got another one. So but as I feel at the moment, seeing him is fine and I did like it when the nurse was there because that was quite a quite a while but, you know, its fine as it is now. Rosemary complains that she sees a different consultant every time she goes to a diabetes clinic. She feels a lack of connection with her consultants and a lack of follow-on in her care.
Rosemary complains that she sees a different consultant every time she goes to a diabetes clinic. She feels a lack of connection with her consultants and a lack of follow-on in her care.
Do you mean there’s no, you can’t go and see the same person each time or?
Yeah, I mean I don’t really, I don’t expect that I should stay with one consultant. I mean there’s no follow on unless the next consultant, different consultant you see can really follow what the previous one I’d seen has written down and know exactly what went on, oh, I’m getting myself in a muddle here but you know what I mean.
Do you mean that things not get missed but they get suggested and then never put into practice or?
Well, I could, now when I go to the diabetic clinic again in June, I could say, “Oh, when I saw you in December, you said, you know, you was going, you were going to contact my GP and.” And I’d have said, “What was the outcome? Did you decide anything between you?” But because I don’t think he’ll mention it, I mean there’s no follow on, if you know what I mean.Fred’s GP only works 2 days a week and he would have to wait 2 to 3 weeks if he wanted an appointment with her. He mainly has telephone consultations with other GPs.
Fred’s GP only works 2 days a week and he would have to wait 2 to 3 weeks if he wanted an appointment with her. He mainly has telephone consultations with other GPs.
No, the GP I normally see only works two days a week, and as a consequence, I think she’s overloaded with older people, ‘cause she’s very careful, and she specialises in diabetes, so I stay with her and she understands things. But, I’ve changed to others, and I’ve not felt confident with them.
So, the fact that she only works these two days a week then, she’s got a lot of patients, it presumably means it’s hard to get to see her when you want to.
Two to three weeks waiting time, no, you can’t get to see her. And the people that they send have…well they don’t send, they don’t send people, it’s a telephone call, what’s the symptoms… and we’ll send it to the chemist. Pick the tablets up at the chemist. They don’t see you.Tammy wonders whether not seeing the same consultant for diabetes is causing problems. However, she sees specialist nurses she finds easy to approach.
Tammy wonders whether not seeing the same consultant for diabetes is causing problems. However, she sees specialist nurses she finds easy to approach.
Right.
And listen and they’ve, I’ve got phone calls from them, you know, phone numbers rather, if I need to call anyone and they were very much available in the early days. And we saw my diabetic consultant recently, again a guy I’ve never met before.
A related issue was why health professionals in different services or departments seemingly cannot all access the relevant parts of a patient’s medical history. Farza was seeing a psychiatrist in a different town, which seemed to create problems in GP communication. Val was told she did not need to take copies of her test results from one hospital to another, but when she arrived she was instead told they couldn’t access them because they had been done in a different county. Val had sought help from a private specialist while waiting for an appointment with an NHS rheumatologist; she doubted that the two consultants would talk to each other. Andrew said that being referred to a physician and a surgeon at the same time about his appendix problem was “a bit of a muddle”. However, he also said that having to tell his story repeatedly to different doctors, each time he attended the endocrinology clinic, meant that on one occasion he met a doctor who took a greater interest in his history.
Val has been seeing two different rheumatologists who currently have different views on her diagnosis. She has found problems sharing records between the two hospitals.
Val has been seeing two different rheumatologists who currently have different views on her diagnosis. She has found problems sharing records between the two hospitals.
So, are you now…you’ve effectively got two different consultants.
Yeah.
Are you still paying for the private one and you’ve got the NHS one as well?
Yeah. The private one is very good, because, yes, I’m paying for the consultations, but he’s sent me to the [hospital A] for all the bloods, all the x-rays, and the CT, so I haven't been paying for any of the tests. The ridiculous thing, which absolutely infuriates me, is I deliberately asked the…the medical secretaries if I could have the reports that came from the bloods and the x-rays, so that I could take them with me yesterday. They gave me the written reports, they told me that the [hospital B] could access all of the x-rays, they told me categorically, I asked the specific question. Speak to the guy yesterday at the [hospital B] and he said, no they can’t, they cannot get the x-rays that have been done in [county]. And, I’m thinking, this is absolutely ludicrous, this is ridiculous, why can the NHS not share information about a patient, I don’t get it.Farza’s GP doesn’t always receive letters sent by a psychiatrist based in a different town. Farza is sent a copy of the letters and takes them to the GP in case he hasn’t received them.
Farza’s GP doesn’t always receive letters sent by a psychiatrist based in a different town. Farza is sent a copy of the letters and takes them to the GP in case he hasn’t received them.
Yeah.
And my consultant, my psychiatrist, is based in the city.
Right.
Near the city. So, where...it doesn't always, he says he's gonna write to my GP, but sometimes, the GP never even gets the letter.
Yeah, yeah.
And I go and chase it up with him, and he says, I've never heard, I've never heard anything from him last. Which, yeah, it can be a problem, that, yeah. If you're within the same town, then it's fine, but if, if it's a different, if it's a different city altogether, then, you know, it's gonna be one problem for you. And to get the message through, is not very easy. I find that, yeah, because it's...and he sometimes says, I haven't heard anything, have you got a letter from him. Which, luckily, he sends me a letter, like I'm the GP.
Right, okay.
So I bring a copy in, in case he hasn't got it. Because he doesn't always get it, no, which isn't good.Amy values the support she gets from her GP who invites her to book a follow-up appointment after every visit.
Amy values the support she gets from her GP who invites her to book a follow-up appointment after every visit.
Steve tries to see a GP who is knowledgeable about his non-cancerous tumour of the pituitary gland. Having a rare condition meant he was unable to find support from other sources such as support groups.
Steve tries to see a GP who is knowledgeable about his non-cancerous tumour of the pituitary gland. Having a rare condition meant he was unable to find support from other sources such as support groups.
I mean, do you think he had kind of a clinical understanding of this strange condition, or is it a question of, you know, the endocrinologist is the person who deals with all of that, I’m just here, you know, to provide you with general support.
He’s, I know he’s got a special interest in endocrinology…
Right.
…himself. And so he did seem to understand what was going on and he was able to some degree reassure me that, you know, although it’s a major, life-changing thing, hopefully it shouldn’t be too all-consuming. Although talk about general, general support, we did try and explore several different options for support, things like relaxation therapy and ma… or massage therapy, just to try and… because I was very, very stressed out when I was first diagnosed. And because… it was a strange thing, because it was tumour not cancer, because it didn’t fall under the cancerous tumour, it was a non-cancerous – well, whatever the… benign… it didn’t fall into any category where I could get support. So although I was stressed out, we were struggling here trying to manage, you know, being told you’ve got this tumour, you could be on medication for life, there was actually no support available for us. There was some carer organisations that my partner joined at the time that were fantastic for her. But there was nothing for me, absolutely nothing. I was just kind of left, because it didn’t fall under the right umbrella.Lottie talks about having a succession of different Community Psychiatric Nurses (CPN) of variable quality. Her latest one is very good.
Lottie talks about having a succession of different Community Psychiatric Nurses (CPN) of variable quality. Her latest one is very good.
That is my only criticism of it. I had a CPN that, the first CPN I ever was allocated was, she never told me what her job role was. She continually, she turned up for every single meeting we had, she was always about half an hour late. When I was admitted into hospital I said that I had no idea what she was supposed to be doing and what, why she was there. They then changed her and I had a really lovely chap, who I was forming a really good relationship with. They then changed, moved everybody around. I was given a new one, who thankfully has stuck with me. She did warn me though that, potentially, by the end of this year, she could have been moved onto a different position but they were still waiting to hear about that. But she had been, she’s been very good.
Different people had different opinions and experiences of the value of always seeing the same doctors. When people spoke about not minding which doctor they saw they also talked about the availability or transfer of medical records between different doctors. Val believed that some GPs don’t refer on to specialists quickly enough.
Val doesn’t mind seeing different GPs but her personal experience has led her to believe that they are sometimes not quick enough to refer on for specialist opinion.
Val doesn’t mind seeing different GPs but her personal experience has led her to believe that they are sometimes not quick enough to refer on for specialist opinion.
My daughter came with me to the last consult with him, because she was absolutely furious about the diagnosis of the ankylosing spondylitis, and the fact that it hadn’t been diagnosed before. And, the man in [town] said he thought I’d had it since I was in my twenties, but, you know, he’s the latest in a long line.
I’ve been to four GP surgeries in my adult life, because I’ve moved, you know, you…you can’t hold GPs responsible, but you do think, if they don’t know, they ought to know a man who does. And, they ought to be quick off the mark about sending somebody, like me maybe, for some sort of expert consult, and they’re not. And, whether that’s financial, whether it’s just reluctant to admit that they don’t know enough, I don’t know, I don’t know what it is.
But the…it’s interesting the rheumatologist in [town] said that, one of the things that he gets most cross about, is the fact that rheumatological conditions are very poorly diagnosed by GPs, and GPs don’t refer people. Never mind early enough, they don’t refer people to rheumatologists, and he thinks that’s very bad. Because, if it is ankylosing spondylitis, and I have had it since my twenties, there’s a lot of damage taken place that could have possibly been avoided.
But, it’s too late, it is what it is.Robert doesn’t mind which doctor he sees at his local practice as they are all good and have equal access to his medical record.
Robert doesn’t mind which doctor he sees at his local practice as they are all good and have equal access to his medical record.
Right.
They’re all good so I don’t mind who it is and, of course, they’ve got my record up to see so there’s no problems there.
Another key issue for the people we spoke to was whether they were seen by anybody at all for follow-up and monitoring. Once again, people’s experiences varied widely. Some complained that they were never recalled by hospital departments (e.g. following major treatment for a stroke or heart attack). Others reported regular (e.g. 6 monthly) check-ups with specialists; this seemed to be a feature more seen in the interviews with people with diabetes or epilepsy. Angela wasn’t personally sure whether she wanted more or less follow-up, but thought that everything was driven by doctors. Fred had been in and out of hospital and complained about the lack of follow-up after being discharged.
Fred was discharged from hospital at short notice after a heart operation without adequate supplies, including dressings. Within 24 hours he was having to use paper towels instead.
Fred was discharged from hospital at short notice after a heart operation without adequate supplies, including dressings. Within 24 hours he was having to use paper towels instead.
I’m trying to work out from the hospital’s perspective, what was the assumption? Was the assumption that you would have gone and…to your GP in order to get those supplies, or you would have gone out and bought them for yourself or…?
Nothing said, we weren’t given anything, just parcelled off. Just…no description. And, um, they weren’t even sure, when I went back in, ‘cause I said to the girl, I don’t feel that you know what you’re doing. She said, we don’t know exactly what’s wrong with you. And I was told it was touch and go, that I survived.Angela was referred to various professionals after a stroke. She has stopped seeing them but has been given the option to get back in touch if she needs to; she isn’t sure if that’s what she wants.
Angela was referred to various professionals after a stroke. She has stopped seeing them but has been given the option to get back in touch if she needs to; she isn’t sure if that’s what she wants.
Right.
But, you know, I’ve been given the option, if ever I need to speak to them again I can I can go back to them.
Right.
And it, yeah, most departments have said that if I do feel, you know, a real need to go back to them I can call but yeah.
And is that okay for you? Is that as you’d like it or are you happy with that or?
Yes, I think I probably am.
I don’t know what I want.Sue describes the care she currently receives for her various conditions. She has regular check-ups but no ‘hands on’ care anymore.
Sue describes the care she currently receives for her various conditions. She has regular check-ups but no ‘hands on’ care anymore.
Yes.
Which ones do you feel you get the most help with?
I guess the stroke is the dominant one, though I have finished all physiotherapy, all sorts of therapy and what I do on the stroke side of things, is off my own back by going to my trainer maybe once a week. The asthma, I have a check-up, I think it’s every six months and the ulcerative colitis, I go back to [city] once every twelve months and that’s it really. There’s no sort of hands on care as such. It’s just regular check-ups.
Right.
The asthma, obviously, I do the flow meter, flow thing that you blow into and that’s it. On the stroke side, like I say, all therapy is finished.
Okay.
So the on-going care is probably just a courtesy yearly check-up.
And do you have much contact with your with your GP on a routine basis or is it is it as and when or?
It’s as and when I need it really.
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