What about information. Where do you get your information about diabetes from? Because it is quite useful to have?

Internet. If you look probably in your local paper, you’ll be a diabetic meeting. It is worth going along, to one of them. Or whatever, going along to many. Because there are loads of people there with diabetes at different levels and it’s nice to have a chat to people who are at different levels, and how much it’s affected their lives and what they do to control it. And how they have sort of sorted out and that’s the best ways you will get it.

Doctors can’t tell you too much, because the doctors haven’t got too much experience of it, unless they are a diabetic themselves. You go to diabetic nurses, they are trained, but they are only trained to a certain level. They can’t, if you haven’t got experience in that sort of case or whatever it is, then you won’t get any sort of information on it. You’ve got to go and talk to a person who has got it. And you’ll find if you, if you do go to a diabetic meeting it will open your eyes a lot. How it’s affected peoples lives. And how they have controlled it and how they advise you on things you can do, and what you can’t do. And it, it is a good thing. The internet will give you a lot, but again I find, you’re better off talking to somebody rather than reading it.

You can buy all the books you like, but the books can’t give you experience. Only a person telling you can give you the experience. How they’ve done it, and how they’ve got around it. So it’s worth going to a diabetic. And they are all over the country. They’re all in local papers, what dates they are, and where they are. Just give them a call and go along. Theres loads of diabetic centres about.

If we talk a bit more about information. Because sometimes it’s very useful to have clips from people talking about what information they received that they found really helpful to know and what information wasn’t that helpful. And how you went about finding information, and what the doctor told you and that kind of thing?

This is going to be so boring because I’ve never had any information. I’ve never bothered to read it up on the Internet. Nobody’s given me any books. I really had no information given to me at all, other than what to eat, when to take my insulin and how much to take. So I really can’t help on the basis of, of h-, having read all the books and got all the information. Nobody has ever given me any information, what I should and shouldn’t do, in the written form.

Would you have liked to have had more information?

I’ve never thought that I needed it. Because every time I’ve been to see the diabetic clinic they’ve said, “Everything looks fine. You’re, you’re doing well.” So I thought, “If it ain’t broke, don’t fix it.”

Well just to help you manage your diabetes. Is there any support that you would like that you don’t get?

No not really. Just a bit more information. It is, I mean, over the years I have learnt a little bit more, but then it would be great for a bit more information about it. The things that’ What affect it, be later on in life. I know like from the book it has got like your feet go black and your hands go and your nails and that. But’ I am not very good on. Even if they brought a DVD out and I listened to it that way, because I am not very good at reading properly. It would probably be, if they brought a DVD out or something.

I would have liked the hospital to have there own website or microsite, which would of maybe had links to where the useful information sources are. And where you can gain support, useful telephone numbers, you know, because it’s easier to mislay a piece of paper, to lose a file, or maybe lose numbers. Basically, have case studies on it, but you know show how people of different ages are dealing with this, or different stages of your life, how you could be coping with certain issues that you might be facing. What predominantly happens to people on the main then. Again, you know, not taking the ideas from others but basically, linking to the right sources. So someone may have already produced a website on healthy eating recipes, you know, how to I don’t know’ Minor exercise routines that aren’t too you know, too much for somebody to detest maybe [laughs].

You know, as well mainly getting the viewpoint of someone younger. I mean, for instance, just going back to what you were saying in terms of exercise, one thing that, it’s not much, but it is something, is theres the games console the Nintendo Wii, you know, it’s interactive, you’re up there, shaking around, burning calories, more so than you would be than if you just sit down tapping away at a game pad.

So you know, theres little things which build up into a big thing. You know, theres stuff, you could be that kind of person or you could be somebody who’s, you know, you can have those kind of lifestyle options or you can lifestyle option where you’ve got people who’ll go to the gym, you know, go do the treadmills and whatnot.

But the other thing I did was go on the internet, but I was searching in terms of topic, I didn’t know any websites to go to, so I just searched by topic then in terms of, you know, diabetes and social diabetes, and sex with diabetes, and food, and looked through those and read those, and, and really while I might not have a specific book or a specific website to, to recommend, what I do recommend is just soak yourself with information, information, information. Because it helps you (a) in terms of making decisions about how you’re going to conduct your life and (b) in terms of understanding the condition that you have, because if you don’t understand it it’ll be extremely difficult to, to get around it, life and it’d be extremely difficult to manage it, and, to comply with what the doctor tells you, because you might think the doctor’s just, you know, giving you grief, but in effect he’s just, you know, giving you the correct information.

But of course having said all of that it, it’s up to you, really how you respond and how you deal with it. If you take it as a challenge and a positive tone yes but if, you can see it as a burden and you say, ‘Well I’m gonna adjust my life to accommodate the diabetes and hope for the worst and, you know, I’ve given myself five years to live and so forth. Then you will have five years to live [laughs].

They went to great lengths, as I said between, between the doctor the dietician and, and the diabetes nurse, between the three of them they really gave me a thorough [laughs] update on what was going on. So I’d a lot of information then and of course, you know, whatever questions you come up with at the time, they’re just a phone call away so I always used to phone them, ‘Oh what about this? And I’ve just thought of that. So, they gave me a lot of information from the onset, it was really more of me absorbing what they were telling me. They also gave me a lot of literature, in terms of reading material, so, you know, you read for yourself the pamphlet – there’s a standard pack that they give you – and you read through that and it is really very handy because it gives you all the information you want to know. And if you’re not too sure you can always ask them.

But they gave me so much information that, you know, I was able to cope, from the beginning but it just depends. I think also how they presented it to me, helped me in that, you know, they said to me, ‘Look this is what you have and this is what can happen. You, you won’t, you don’t necessarily have to think you’re going to die from it, you can live with it, you can manage it, but, you have to do a, b, c, d,’ so, you know telling me that it’s something I have but I can live with it and I can cope with it, straightaway gave me the hope to say, ‘Well okay so it’s not as bad as it seems to be.

The doctor sort of gave me some information but I just didn’t understand it, because, you know, I went out and bought myself a machine to prick my finger, and he’s telling me that those machines don’t really give true, accurate readings, you know, like what the you know, when you give a blood sample at the doc, at the hospital, that would be. But obviously you can’t go to hospital all the time to have blood tests and you know, he explained it. But I think if they gave you more paperwork, you know, literature that explained it, that might help, rather than them telling you and then you come back there and you think, ‘God, what did he say again?’ Because you just forget.

So you didn’t have any leaflets to take away and read?

No, what I did, what I did myself, I went on the internet, and I started to looking up organisations you know, finding out about diabetes. I did sign up to one, I can’t remember, I think it’s Diabetes UK, I signed up with. Yeah, I think it’s them, because I think they, that that’s the one where you can monitor yourself on their website, you know, your levels and things like that because they gave me, they sent me a lead that I can just plug into the… Which I’ve never used [laughs].

But that’s what I did, I just, and I sort of like made my own little folder. I printed all this information off the website, and I made a little folder that I could sit down and go through it and read to find out what I should be doing, what I shouldn’t be doing. And I found that’s what been more useful than, you know, the doctors really.

But, you know, the nurse sort of gave me a little bit, what I could eat, what I couldn’t, and exercise and she sort of, vaguely sort of told me what could happen, you know, with your feet and things like that. But I’ve found, you know, more useful from the internet.

And finally about information. Where do you, it’s quite useful for us to ask people where they get their information from?

Mainly from Diabetes UK bimonthly magazine. There’s a lot of good articles in there, a lot of good letters. It’s full of, no, it’s not full of contact points, but it’s got a lot of information over and above the physical diabetes. A lot of the adverts, for example one of them is always about how to get a pouch to put your insulins in to keep them cool when you’re away on holiday and that sort of thing, if you don’t have a fridge in your bedroom.

There are leaflets available at the diabetic clinic at the hospital. And twice the diabetic nurse has pulled stuff off the computer in her consulting room from another source other than Diabetes UK. The written word is nothing like as good as the spoken word, because with the spoken word you can have a rapport. If you’re just reading a piece of information you take it in, but Confucius, he say, ‘What I read, I forget. What I do, I remember’ or something. And I think it’s true with reading. I think somebody worked out you retain 5 per cent of what you’ve ever read.

I’ve read that.

Yes. And the great advantage of the, of the written word is if, at a later time you can go back to it to refresh yourself. Whereas the spoken word has gone unless you have a tape recorder or a video camera. But not many of us go into the consultation room with a tape recorder.

And, can you think of anything that might be helpful to somebody else, related to diabetes?

What can be helpful is to say, ‘Look, don’t ever hide it. Many people say, ‘I, don’t tell anyone that I’m not well. Don’t tell anyone that I have blood pressure, that I have sugar. What will people say, that she has an illness. But you should tell. If you don’t tell then how will anyone know what your problem is. Then they will say, ‘Oh she’s so fussy, she doesn’t eat anything. You know how that happens, so that’s why you should tell them, ‘Look, I can’t eat it, I’m a diabetic, I’ll eat some, but only a little bit. Say it like that. You should talk to each other. Sometimes you can get somebody’s advice, or somebody’s dietary tips could suit you too, and it might be like, ‘That person ate that, it suited them so maybe I’ll try it too, and see if it suits me. Sometimes, if you talk to other people you find out so much. If you don’t ever talk to anyone, you won’t find out anything.

Like, earlier, we didn’t used to go to any centre, now we go to the diabetes centre, it’s been 10 years now and I’ve learnt quite a lot, I’ve learnt a large amount. Otherwise, I didn’t used to know anything, what it is and what it isn’t. I didn’t even know what diabetes was? How does it start? What is it inside that isn’t working? Now all that, they showed us slides, told us lots of things, so much we found out. And then over there, we talk to each other. We tell each other that I ate this. They tell us what they ate. How do you cook it, how do they cook their vegetables, how do we do it. So if you talk like this you find out lots of stuff. If you don’t talk about it, you won’t find out anything. So, you should, like friendship, you should talk about it. From one another, you should listen also, and tell also.

So, that’s the advice that I would give that you should, friendship, you should go out, and talk about it. And don’t think that, I will only talk to other Indians. I’m only going to talk to my relatives, my brothers and sisters. Talk with everyone, sometimes, English people are also quite nice. Sometimes, when I’m going to the doctor, going to the hospital, many times I meet some ladies, they talk to me very nicely, they say, ‘I’m also diabetic. I’ve also come for my eyes, for treatment. This happened to me, this happened to me’. And then they ask about me. So you find out so much. Their ideas are different, ours are different. So you can find out so much. So you should think, ‘I, with anyone, I won’t tell anyone. So you should talk. You learn so much.

And you’re obviously very active in the diabetes support. Can you talk in some detail about your experience of being part of a support group?

Yes, well, it started off, there again it was the practice nurse that said, Oh, what you ought to do, theres Diabetes UK, and you can subscribe to the Balance magazine and join Diabetes UK Which I did. I got the magazines and found it quite interesting. And in the magazine it said about local support groups. And I thought, Well, interesting, I’ll go along and see what it’s all about Went for a couple of years and very interesting. They asked me if I’d like to be on the committee. So I thought, Yes, that can’t do any harm So ended up on the committee. Then the chairman retired and they said, Would you like to become vice-chairman And I said, Well, yes, that’ll be all right And looked at the chairman, who was then, who, the vice-chairman then became chairman. And unfortunately about six months later he died. So I ended up chairman. Which is not what I wanted at all, but I suppose I do enjoy it.

We organise six events a year, three south of Bristol, three north of Bristol, to try and encourage people to come along. It’s not like Alcoholics Anonymous, not that I’ve ever been to Alcoholics Anonymous, where you’ve got to stand up and say, I’m a diabetic But most people there are diabetics or carers of dia-, people with diabetes or people who work in care homes and doctors and nurses. They all come along because we get quite prominent people to do talks. And then it’s question and answer. So it’s very low key, very friendly. It’s free. And we just encourage people to come along.

But what, if, if you imagine somebody asking you the question, What, what would somebody get from a support group

Sharing experiences, realising that you’re not on your own. Either the chance to talk to a consultant, a professor of diabetes, which you wouldn’t normally do, but more importantly, to talk with other people on, either on just a one-to-one basis or in a little group. And I’m sure the problems that those, you know, one person has got, everybody’s got, you know. So it’s just a feeling that you’re not on your own. You don’t have to go. You can go to some meetings, you can go to other meetings. It’s just to, to help with support and awareness, and to meet other people with diabetes that have got all the problems you’ve got. So you, you think, you know, I’m not alone here

Very limited, very limited. I went on to the website, well I, for the British Diabetics Association but Diabetes Association [Diabetes UK], but it wasn’t very, it was sort of child’s stuff, and I didn’t find it very satisfying. I’ve read a few books about diabetes, you know, not very satisfying either. So a lot of it has been my own explore, you know, exploration and finding out what happens to me.

Would you have appreciated more information?

Yes. Oh yes.

Is there anything in particular? Any areas in particular you felt it would have been useful to have information on?

I think first of all I think that some form of a support group, so that people who are newly diabetic could meet together and talk about what’s happening. I have a neighbour across the way whos mother’s just become diabetic, and she, her blood sugars are going up and down quite a lot and she’s not sure why, and it’s very frightening.

You can’t really, it’s difficult to go to a clinic and say ‘I’m frightened because of this,’ you can say that they’re going up and down, but it’s not really the thing to talk about your emotions, so you can’t say ‘I’m frightened. And that’s what it would be if you were doing all level where you’re in a room with people who are similarly effected by just, by having conversation, that can be more re-assuring than anything else.

Well they’ve always’ Not really because I have always had a diabetic nurse and a specialist diabetic doctor, but to me I would like, like my friend who lives over in Ilford, they have got like a support centre that you could go in, like meet up, and discuss different ways of how, like this person is doing this with their diabetes, and you know advice, helping people along. In this block, I don’t know of any.

When I rung UK – Diabetes UK they gave me a number and I’ve been ringing the person and nothing. I ring in the day, during the evening and I don’t get any response. Mind you I haven’t got back to them to find out, you know, have they given me the right number. But I think they should have like a set up, something, you know, not just the doctors, something that people form themselves. Yeah.