Diabetes Type 2

Communicating with healthcare professionals

Given that diabetes is a long-term condition that can eventually lead to other health complications, people with the disease will come into contact with many different healthcare professionals. Diabetes care is multidisciplinary so that it includes dietitians, podiatrists, opthamologists and pharmacists as well as nurses and doctors. Most people we talked to felt they were being well cared for by members of the healthcare team and felt satisfied that everything possible was being done to help them.

Andy felt shellshocked when first diagnosed and was grateful to his local pharmacist for being so...

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Age at interview: 52

Sex: Male

Age at diagnosis: 52

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Okay, so I came from work with the phone ringing. It was the GP, it was a Friday, and he said. 'Yes, you've got diabetes, I need to see you. I can't see you today, so first thing Monday'. So round to see my GP and he said. 'Okay. Right. First thing I have to tell you is that we can't cure diabetes'. And obviously I must have looked quite, and he said. 'Don't worry, we can control it. Most of the control has to come from you, okay?' He said, 'But we can control it. And we're not looking at injecting and things like that, this is called Type 2 diabetes'. And he said lots of things and it was just all going over my head. I, I couldn't understand. I was shocked to be honest. He explained that a blood test to show that my cholesterol was very high. He took my blood pressure and said my blood pressure was very high. So there was a number of complications he was concerned about. I also mentioned I'd had a few sort of chest pains and things. So he later on organised an ECG because that was giving him some concern. So basically what he had to deal with was a 51 year old that was diabetic, where my HbA1c was very high, he said that the way I was going on within 2 weeks I'd probably have collapsed and been taken to hospital. So he said, 'We need to get this under control'. And he said. 'We need to bring your blood pressure down, and we need to sort out your cholesterol'. So it was take a statin every day, take an aspirin every day, have to start helping the blood. There's a blood pressure tablet to take every day.

And then for the diabetes there was a metformin and a gliclazide. So it's then off clutching my prescription off to the chemists where I'm sort of pretty shocked, shell shocked I think, and the chemist sort of looked at the prescription and said. 'Oh, newly diagnosed?' And I said, 'Yes'.

So the pharmacist asked me to sort of go to a little room that they've got and just sort of said lots of reassuring things whilst they were preparing my prescription. You know. 'Don't worry about this. It's not the end of the world. Diabetes is something that lots of people have. Just be a little more careful about what you eat and just take the tablets and you can lead a perfectly normal life. Don't worry about it'. Which I thought was'[It] actually cheered me up more than anything else to be honest.

Tina has developed a good relationship with the podiatrists in the hospital who are very helpful...

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Age at interview: 45

Sex: Female

Age at diagnosis: 33

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I do probably again' Because you feel, you do feel like a bit of a victim, and you do feel like, I don't like being talked down to, and so, sometimes, not everybody, but some people can talk down to you a little bit. As soon as you've got a problem, you know, they can talk down to you a little bit, and then and you don't really want to listen then. I don't anyway because I'm not very good at that. But I do like to find things out for myself, and but I also do ask lots of questions as well. I mean if I want to know anything I do ask questions so.

Have you built up a particularly strong relationship with any of the people looking after you, without naming names?

No. I my doctor is particularly good and she is, and my diabetic nurse at the doctors is quite she's very good. At the diabetic clinic you always see different people, so I never, you know the doctors I never, I don't think I've seen the same doctor twice I don't think. So I wouldn't say you have a sort of relationship there really. Although, I do see regular people at the podiatrist and they're very good.

Talk to me about podiatry. What works there?

I think it's because as soon as I've got a problem, I just have to ring up, and they know I'm not just, you know, they know it's genuine with me, and they know that, you know I really have got a problem if I'm ringing up so they see me straightaway. They always do. And they're very straight forward, and they're very direct with you know, the advice they give me, and they it's all common sense. And I mean, you know, like just for instance all the time I had the dressing on my foot, I mean, I did the dressing on my foot. I had to dress my foot myself everyday twice a day for a year, and they were fine about that I never felt like I wasn't doing it right or whatever, I felt always felt okay about' Everything that I was doing, so that was good.

Clinics and checkups with dietitians, podiatrists and optometrists were highly valued and some people said that finding out that they had problems with their eyes/feet had been a turning point in their understanding about diabetes.

Primary Care teams
Most people we talked to were getting the majority of their care from GPs and specialist diabetes nurses. What really mattered to most people was being able to get appointments, and being given useful advice that they could understand and follow. Some people said they wanted to ask lots of questions and liked being able to discuss information they had found on the internet with their doctors and others wanted to feel they were being well cared for, and that their own views and experiences of diabetes were listened to with respect.

James says he feels proud of the care he receives from his GP.

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Age at interview: 67

Sex: Male

Age at diagnosis: 42

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Nowadays you go to the Caribbean and there's a lot of people down there with diabetes and they have got to pay for all their medication. And the doctor never seems to' Just give them the medication, and [they] never test it you know to know whether it is the right medication for them, whether they should increase the does or reduce it or change it to something else. I have seen it done there, with people I discuss this sort of thing, they don't do anything, just give them tablets and think that is it, that will calm it down - it doesn't.

So you feel yours is quite well managed?

Yes. I think mine is 100% managed yes. I feel proud of this and my GP. Proud of this.

I didn't know anything about diabetes. I never met anyone with diabetes except, yes, I have, except my own people said that they diabetic and they inject themselves, so I wondered what it was like until my GP told me. This is something that can give you strokes, is it high blood pressure or sugar level? But sometimes with my diabetes if I stay too long from eating anything I became hot and sweaty, feel weird and [laugh] at one time my GP, I was in his surgery and he took my sugar level, and I showed him the reading I had which was 2 point something. And he just got up like this and just run downstairs and got some biscuit.

Her relationship with the GP is good because he listens well, is responsive and doesn't...

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Age at interview: 54

Sex: Female

Age at diagnosis: 50

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And is there anything that looking back you feel worked particularly well for you?

My GP letting me take control of it or not control of it' I mean he was' I mean I said to him in January, 'I want one last try to get these under control.' And he said, 'Okay, but you've said that before.' And I said, 'No, I really mean it this time. I will, and then if I don't get it under control, I will start insulin. And you can put that on my card, that I will do that.' And he let me do that, you know, without, and he hasn't sort of, he hasn't pressured me into stuff that I didn't want to do. It's been negotiated. The increase of medication has been negotiated.

The, I mean I said to him about the atenolol, coming off the atenolol when my blood pressure went down. And he said, 'Oh, I don't know. Oh, all right then, we'll give it a try.' So he responds to my requests. And if my bloods continue to stay the same, I shall ask if I can take lower doses of the metformin. And I'm sure he'll let me if he thinks that's okay, as long as I monitor it.

So there's a lot of, I think for me I'm glad there's a lot of self-monitoring. And you have to take responsibility for it yourself because it is a lifelong condition - it's a 24-hour condition. You can't just take your medicines in the morning and expect to go through the whole day then just doing what you like.

Lawrence understood the clear unambiguous advice he was given by his GP.

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Age at interview: 38

Sex: Male

Age at diagnosis: 37

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Well I mean, I've been with my doctor for years, so we've got a good relationship, he just said to me, 'Look I'll tell you straight what the situation is and what you have. This is what you have and these are the risks that are involved with it, and these are the possibilities.' So he just laid it all on me, and if I had any questions I asked him, and, and he says, and of course with the, with the subsequent visits that we had, whatever questions I had I would, I would always ask him and then he would answer me, you know, straight up. And, and we just took it from there.

So it was a pretty intense 'download' as it were and 'upload' on my part, but I think it helped me because it hit the message home and his concern was that, you know, I get into the groove of things quickly now, because my sugar levels were, were that high, so he was anxious that they come down as low as possible, as quickly as possible so... I think it helped me as well, you know, coming to terms with it quickly enough.

Several people who had had diabetes for many years said that communication had improved. They appreciated the GP and nurses making an effort to give advice and support that met their specific needs.

Tina feels she is well understood by her GP and diabetes nurse and that they listen to her ideas.

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Age at interview: 45

Sex: Female

Age at diagnosis: 33

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I was given a whole load of information which was too much to take in, definitely. And also, because I was quite angry about being now 'a diabetic', I felt, when I went to hospital I felt like a bit of a victim. So I actually stopped going for quite a long time. I had a bit of well' Some of the nurses, at one point, said, 'Oh, you know, this is Tina and she thinks she knows it all'. And that was on one visit, and I didn't think I knew it all at all, but I just, I was a bit probably a bit I my, you know my defences were up probably so I didn't, I stopped going.

But then I went to my doctors and my they have, you know, they hold diabetic like surgeries, I suppose, or clinics. And I that was I, that was much better, having more of a one-to-one relationship with a diabetic nurse who I got, you know, got to know so it's a bit better that way. Yeah. And that was so I personally, bought a few books on diabetes and you know, and now of course, you know, I look on the internet and on various sort of you know, because it's much more up-dated isn't it - everything's, you know, the latest whatever they have you know [laughs].

I think that my doctor is very understanding but without being sort of patronising. So I mean she also sometimes she actually asks me what I think should happen - how I think things should go, or you know, not what treatment I should be having, but how, you know, I feel about things - [which] is quite important, because you know you are the person with the problem.

And also my diabetic nurse you know, she very aware that, you know, obviously you know I am a diabetic, but she's very aware that I still work, that I have to fit in my family life, that I have to fit in things that crop up unexpectedly. And so she's very good sort of talking to me about that and giving me advice on how I could deal with different situations, but without again without being patronising you know which is quite nice.

Some people had gone through periods of not controlling their diabetes well, which had made them quite sensitive to criticism. Several people described themselves as having been 'defensive' particularly in the early days. Some people, particularly those who felt they were not coping very well with diabetes, said they preferred to talk to the diabetes nurse for advice and support rather than the GP. A few people said they had not been given clear enough information about how to recognise possible complications when they arose.

Alex feels communication broke down when he had problems with his eyes and didn't connect it with...

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Age at interview: 54

Sex: Male

Age at diagnosis: 51

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But when you came and asked your GP when you came back from holiday did , how did they respond when you described your symptoms?

They were' I said earlier they were surprised that I didn't realise, now, this led to a few exchange of words to be honest with you, like, I've got no knowledge of the, the subject as such but they assumed because I'd been diabetic for a couple of years that, that I knew this. So whether it was assumptions on their part that they thought that I'd been imparted with this knowledge somewhere along the line or it had happened to me before but, it was a new experience and one I didn't really relish too much. That, that was probably the way it was meant that it was a wee bit of a surprise in their part that I didn't know what was happening to me, because I was diabetic and that I should know this. So there's [been] a breakdown somewhere in communications.

See there's the danger here that I have been told and I've forgotten about, about the situation, and I don't think I would've forgotten that, it was just , like I say I think there's been a breakdown in the communications circle, somewhere whether my GP thought this knowledge was imparted to me through the health centre service, I don't recall this happening and I'm sure I wouldn't have panicked so much if I'd known that this could've happened. I was, aye, I was frightened, I was, especially when my eyes were affected. Like I say the running into the toilet and the thirst I can cope with, but not understanding what was causing it and I didn't understand it, I really didn't associate it with diabetes, so I would suggest that I didn't know. Because I'm daft, but I'm not stupid. So yeah, somewhere along the line it didn't happen, I didn't have the information. And yeah, I'm a big boy now I can go out and find out things for myself and I didn't do it, and I never even thought about it when I was away. I had access to the internet while I was away, I could have looked but I just didn't even think about it - just didn't put the two together so...

Zoe prefers to talk to her nurse because she gives helpful advice and listens to her.

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Age at interview: 32

Sex: Female

Age at diagnosis: 20

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So I avoided doctors for a long time. And then my partner now, said, 'Look you've gotta get this sorted.' And I went in and I saw my doctor and, yes I think he did it for the right reasons because he knows' He must've realised straightaway I was stubborn - I will do things my own way - but he was also very rude and obnoxious, and I did feel like wanting to change my doctor but then I thought well maybe he's doing it because I am that kind of awkward person that, I will only go in if need be. But at the same time he was still quite rude - I suppose if somebody's not going to look after themselves then yes they've got every right to be rude - but it does make it hard going into see them.

And I just luckily enough my nurse, she actually looks better, looks after me a lot better, than my doctor and I go in there and we'll sit and we'll actually chat and she'll ask me how I'm feeling, what's it like when I take my insulin.. she suggests little things, you know, like just going out, going shopping in, in the daytime. And I've felt that she has made a difference to my health and wanting to get better because she's took time to understand me and my problems first. You know, to realise, you know, it's more than just giving out somebody a pill, or saying, you know' Like she'll say, 'Just, you know, if you're going to smoke just cut it down.' You know, she's given me little guidelines like 'Gradually do this' Not, 'That's bad, stop it.' 'This is like this, stop doing that.'

And like she understands like, it's like, because of the size of me, like a lot of people automatically think you eat all the time, and it's like it's not often that case. I mean [partner], he actually eats like anything, I've never seen, you know, somebody eat so much and it's like, how can he be the size he is and what he eats and what I eat, how can I be my size?

But I purely know now it's exercise that's going to get my weight down. And you know, I'm not a junk eater, I like fresh food, I like vegetables, I like fruit, but when a doctor just looks at you, like my first doctor, and he says, 'All I could see is.' because like I said to him, 'Every week I went in with my diet plan.' And he said, 'But you can't be eating that because of your size.' And I said, 'Well I, why would I lie, I'm coming to you for help? I have no reason to lie I want to change, you know, you know I, I don't wanna be this size.' But obviously there's something wrong - that's why I was going to him.

But it took like, for him to find out more about me, to make him realise that, you know, just because I'm a big girl doesn't mean I sit and eat all day. And like I have exercise and I go out, I used to do a lot more exercise than I do now which I will get back to, but it took that, you know, because at first he was like, 'Oh I just give you this pill and I'll just give you that.' And it wasn't that, I think it, it took that little bit more, for him, I think to open it up and say, you know, you can treat this by doing this and doing that, but yeah doctors are the, the scariest of things.

Sallie was dreading being weighed at the clinic but said that the nurse was 'brilliant'.

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Age at interview: 50

Sex: Female

Age at diagnosis: 44

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Well actually, within the last two weeks, when I went for my check up yesterday, because I am going to a weight clinic now apparently. I call it the fat clinic, but it is the weight clinic. And she asked how I was getting on and I said I was doing really well and feeling a lot better on the medication. She said, 'Do you think you have lost weight?' And I said, 'Well really, if I have it is a bonus, because I'm feeling so better, and the losing weight bit doesn't really matter.' And I have lost 7lb in two weeks. So, obviously what I am doing is working and' I got on the weights and she said how tall are you? I said, '8' 3''' So anyway, I was only 5' 4' which was disappointing. So I've shrunk two inches somewhere. I always used to be 5' 6'.

So do they kind of zap you with science, like talking about your body mass index. I mean do you know about stuff'?

No, no, the nurse I saw yesterday was absolutely brilliant. The first time I'd met her. I was a little bit apprehensive. Late going in. I thought I am going to leg it, I can't go through with it. But I did go in and I was glad, yeah. Then the word obese come up on the computer. And she said, 'I want you ignore that word.' She said, 'It is the most horriblest word ever.' Because it is, you know, like how they describe you isn't it? Like if you are over such and such a weight, but we were laughing about that. But she was alright, very good. Very good.

Some people liked a direct 'can-do' approach to diabetes, but didn't necessarily like it when doctors were too blunt. Several said they had felt shocked and upset when the doctor told them that they had 'lost years' of life because of diabetes. Some simply found doctors 'scary' or said they just couldn't think of any questions to ask. One man felt that his medical team moaned at him whatever he did and didn't appreciate the effort he was making to control his levels.

Nicky reacted badly to some of the suggestions made by her GP when she was first diagnosed.

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Age at interview: 46

Sex: Female

Age at diagnosis: 42

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The other part alongside the disbelief, was complete denial, because one of the first things my darling GP said to me was, 'This is going to knock 15 years off your life.' Gee thanks, doc, you know, sod off! And the other thing is that I had these two young kids. I think they were about 8 and 10, maybe 8 and 11, at the time. You know, it was inconceivable to me that I was having a degenerative disease that was just going to tail off until, poof, there wasn't going to be anything there. So no, that was definite denial. Also what he told me to do was to lose weight. Well, you know, like every other damn woman in Britain, I'd been trying that for some years without any success. And to take up squash. Squash was going to sort my obesity problems. Okay, right, you know, bloody ridiculous! So my first reaction to anything is to go and learn about it so I. Oh and 'Don't look on the internet because the internet is full of rubbish'. So, went on the internet, as you do you know!

Rita says she just clams up when she goes to the GP.

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Age at interview: 74

Sex: Female

Age at diagnosis: 68

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And do you feel that you are able to ask questions if you have any questions?

No. You go in, you go in and they take blood. I suppose it's me, because I do tend to clam up when I go to the doctor's because I don't like the doctor's at all. Most probably it's an inward thing, you know. But I suppose if I did ask, you know, I would get an answer. I don't know. But like if you had a group, you could all discuss like we are now. Which is easier, isn't it?

Do you feel that you don't want to ask questions because, why is that, that you feel like you can't ask questions?

I just don't know. I just clam up. I think it's maybe fear of going for surgery. It's the same when I have to go for a hospital appointment. I'm sick for three days [laugh]. I'm terrible. At 74, is that laughable, isn't it [laugh] I can't help it. That's me. I don't like any fuss and bother, you know. But I suppose I could go, no problem, if I wanted to. Well, I'd have to, wouldn't I? You know, if I come up with a problem I would have to air it like, wouldn't I? But I'm, I'm lucky because I say to my daughter, 'Oh, so and so.' 'Oh, yes, Mum, yes. I'll get that sorted out for you.' She'll ring the surgery, you see. Save me going out, all the way up in a taxi and all the way back home. She's quite good like that. Or if I have a new pill, you know, and it's made me a bit, you know, iffy, she'll ring the nurse and, or she'll ask her own sister in work.

Mo recently took part in a diabetes study and says she felt more supported by that than by the...

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Age at interview: 52

Sex: Female

Age at diagnosis: 51

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And as for the doctors, you know you make an appointment and you see a locum nine times out of ten so again I don't feel I know the doctors well enough or they don't know me well enough because when I go I find that they're looking more at the screen for information you know rather than actually interacting with me as a patient.

Yeah, I mean you feel like you get more attention in the study that you would...?

Well certainly because there's, it's like you've got a one to one person and you can say, 'Well I've got this symptom and you know', chew it over, they're checking your weight, they're checking you know your diet and you don't have that sort of thing with your doctor I mean, say you go in, and it's a screen and off you go. So, rightly or wrongly but they just don't have the time for that sort of, I think that's why they set up with a diabetic nurse, but as I say because I'm seeing a diabetic nurse, and I'm seeing a dietician, and I'm seeing a doctor I think, I'm getting a better deal than someone who just goes along to their GP or the practice.

Chris refuses to take metformin and feels he's done everything right. He can't understand why he...

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Age at interview: 61

Sex: Male

Age at diagnosis: 56

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And I'm doing quite well - I think I'm doing quite well anyway. I feel good, other than my depression of course, you know. But, but my body feels physically fine. I can't say that I've had any problems from it at all, you know. In fact I think the' I'm going back a little bit now, because when I saw the last nurse and I refused to take the tablet, she said, 'Oh, you don't want this clinic then, do you?' So I said, 'Well, no, not really', you know. I said, 'The only thing I worry about is my eyes' you know. I said, 'Well, you know, if they go, they go. There's nothing I can do about it. So, 'Oh, well, you know, it's out of control and'' You know. And she had a good old moan at me like. And then I walked out into the waiting room and there was a bloke, well half a dozen people waiting there, and they were fat, they were, beer bellies on them something dreadful. And I don't drink, you know. I'm, I don't do, you know, anything like that.

And yet they're, they're telling me now when I've been up the shop, people who are diabetic, they're still drinking, they're still smoking. I don't do any of it. I stopped the smoking, you know. So I've done everything right and they're still telling me off. I'd like to be in there when they speak to some of these others, to see what they say. Because, you know, I mean if they have a go at me like that, what must they say to them? Or is it just me they're picking on? You don't know, you know. That's one of the things that might be interesting here, to see that everyone gets the same sort of treatment.

Several of those who said they had felt depressed or had experienced sexual problems said they had felt able to ask their GP for advice. Most were given medication to help overcome the problem, but had not been offered the chance to get any follow-up appointments for counselling or other kinds of psychological support.

Hospital care
Some people we talked to were looked after by diabetes teams in a hospital setting and they preferred this care to that on offer through the GP. They felt reassured by seeing doctors who were clearly diabetes 'specialists', and generally liked being seen in the hospital where various different specialists and clinics are all under one roof. (See 'Care and treatment'.)

Last reviewed March 2016.