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Feb 26, 2011
JayBee
587 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View Liking the posts, it is incredibly sad that this sort of thing goes on... but at the same time, I'm not surprised. If PCT includes GP practices, then absolutely not surprised.For example, late last year, I changed my GP because I needed a more conveniently placed doctor because of where my workplace had stationed me (far off from my last GP!). When I met my new GP for the first time, he said he didn't understand DAFNE and seemed very dismissive of it. Instead of showing more interest (like one of the nurses kind of did), he just asked me what doses I was taking at the time (which was in a situation of shifting because I was dose adjusting at the time - I said this and he wanted to know anyway), typed it into the computer and then it now appears on the label when I ask for insulin. Um, bit pointless really... There has been another occasion - which someone else on this forum started a thread here - I was told I could not have my usual amount of blood testing strips because I was not supposed to be testing as much as I should. I couldn't believe what I was hearing - I thought my GP surgery had gone mad. I was quick to point out that my life depends on testing regularly because I am a Type 1 Diabetic. They actually had to CALL someone to confirm what I was saying was true - I'd been with this GP for YEARS and they had to do that! O_O After experiences like this, I completely understand why diabetics of either type are being let down by their care team. They can't even tell the difference between the two types! On this note though, I can understand why some members of care teams would not be prepared to educate without training - anyone in their positions, without correct training, would... no, should not be prepared to apply advice such as DAFNE guidelines. It's got "legal mess" written all over it and them holding back is safer in the long run for the diabetic. There is also the situation of T1Diabetics feeling that they're either happy where they are, or if they have problems but don't want to change. Even though I had good intentions, when I talked about DAFNE and recommended it to a fellow non-DAFNE diabetic, I must of not explained myself too well or something because even though I was able to explain that DAFNE could assist them with all the problems they had come up, they were too quick to take offence (she latest posted to friends: "How dare she criticise my control when she clearly cannot control herself!" completely missing the point of the conversation (because there was no mention of DAFNE in her rant so that sadly failed to sink in) and my enthusiasm for DAFNE) and shrug it off at the time to say "I'm no good with numbers, I don't think it'll be something for me" and "my brother does that". Sadly two-faced I realise now, but I think this is a great example of what kind of mindset some diabetics have towards anything new - try to run away from it as quickly as they can. I can relate to a certain extent to the phobia of change - I used to be afraid to put my insulin up! Has any one else had this sort of negative response when trying to introduce DAFNE to someone who's not heard of it? Just out of interest - do we have any idea why the carb counting stuff was stopped 10 odd years ago? Were the benefits of it not being realised? I've been T1 Diabetic for about 21 years now and I was never introduced to carb counting until DAFNE. When I was first diagnosed at the age of 5, I was put on something like two-three injections a day of mixed insulin (which I dread to think what my BGs were like at that time with the education I've had now!) then eventually the basal-bolus system (this name still is very strange to me - I just call it "I take 4 injections a day with two types of insulin, one fast, one slow" LOL ;) ) which I cannot remember what age I started. If I had any carb counting education involved, it may have not been passed on to me by my parents (I was only a kid) but I can't be sure of this. I do hope these local DAFNE meet up ideas being discussed at the moment help the cause. I think a more detailed outline of DAFNE would be a great starting point. Considering the problems we've been facing for years with professional help, it's great we have the will to do something about it. Edit: Suggestions for the DAFNE Online site: Pros (and cons?) listing of DAFNE (part of the outline perhaps). Possibly look at adding a forum section so members can start DAFNE orientated blog threads (will give more material for the dafneonline Twitter feed as a bonus). |
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Feb 26, 2011
PNThompson
57 posts
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Topic: General Discussion / BG Graphs I haven't used them myself, but one option maybe is to take a screen shot (Windows = ALT or CTRL and Prt SCN) Think ALT takes an image of the Window open while CTRL take the whole screen image.Mac has an Application 'GRAB' to capture a screenshot. Depending on software you should be able to convert to PDF Format, though the JPEG Screen Shots could be added to an email. |
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Feb 25, 2011
Simon
578 posts
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Topic: DAFNE Online Mobile / How to download data from iphone app DianeH - not yet - planning to do this soon on the site, will let you know when I get it done!Thanks for getting the app, please feel free to leave feedback on the app store if you like it. Simon |
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Feb 25, 2011
marke
681 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View Mike,I take your point about the huge variation from PCT to PCT. Mine reduced the DESMOND course down to a half-day 'brief' which pretty much defeated the point of it. Sadly there are no strict rules over what constitutes structured education. There is/was an initiative to ensure courses ARE to an approved standard its called QISMET and they now have a website. I volunteered to be part of its user committee but didn't make the grade ;-) However I should get the documents and outputs from it. Will it make an difference ? Who knows, but if you don't try.... P.S DESMOND doesn't include insulin education I don't think its aimed at Diet and Exercise I believe. With regards to michelle's comments, I think you hit the nail on the head ! The best thing for me about DAFNE was being in a room for a week with 7 other Diabetics who fully understood me becasue they went through the same things. I learned a lot from them as well as the course. For me it was one of the big pluses of the course, realising that lots of others have all the same problems and challenges as me. |
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Feb 25, 2011
graham burton
14 posts
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Topic: General Discussion / Blood monitors thnaks all but i want to make it easier for me and others with the metres to find a way of doing this if dafen can do some software design for the differnet metres to uplaod into the dafne online dairy be great |
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Feb 25, 2011
michellem
23 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View I've just got home from finishing my DAFNE course after 29 years of DIY and have learned loads. I was also previously told it was what I was doing now with a bit more info and didn't really need to do it. I was never encouraged to do it but after some research of my own I asked to be referred. Sadly I had to wait a year before I got on the course.Although theoretically it is, as I was told, what I was already doing with a bit more info, the qualtiy of the info is the important thing. There is actual sound research, evidence behind it and I'm all for that. In terms of the ratio, the vast majority of the people on my course were put on 1:1 but only because that was similar to what we were taking already. The 2 people with vastly differing amounts were put on different ratios and one even altered hers during the course so it didn't feel overly prescriptive at all. The sick day rules are scary but make complete sense so when I am next ill I will acutually test for ketones (oops!) and give the rules a try. May help me feel better a bit quicker! The best thing for me about it all is feeling like I have some support at last from people actually going through the same stuff as me. Being with other Type 1's for a whole week and now having a forum like this is fantastic. |
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Feb 25, 2011
everydayupsa...
2 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View Hi MarkDon't worry, I didn't feel there was any criticism in the posts here, I was interested to see some this forum in the blog stats and popped by out of curiosity. NovoRapidBoi has spoken highly of the support he finds here on another forum. Regarding the 'default values' thing... here's a snippet of a forum post I read earlier this year:
I've heard of DESMOND, though I've not really looked into the content of the course, I'm not sure if it deals with insulin dose-adjustment strategies (though I don't think it does unless that is covered on the 'Foundation' version of the course). I suspect some sort of structured approach would massively benefit insulin-using T2s especially since there are more insulin-using T2s than there are insulin-using T1s(!) I got quite fired-up about the dreadful lack of carb-counting (and other) education which diabetics are subject to up and down the country and ended up writing to everyone and anyone to highlight the issue. Sadly, National Diabetes Framework or no, it is down to the individual PCTs (or whatever comes next to replace them) to decide what constitutes an appropriate, structured education/support programme for diabetics as suggested in the NICE guidelines. If they decide an afternoon in clinic and an A4 handout is enough, then as far as I can tell they are not obliged to put any more budget toward it than that. As you say, there is more to DAFNE than the carb-counting support, and it is important that this is understood by the (many) long-standing diabetics who don't follow up on DAFNE because they think it has little to teach them. You might find this interesting: The carb counting black hole |
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Feb 25, 2011
novorapidboi26
1,819 posts
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Topic: General Discussion / Blood monitors I use both the online diary and my own homemade booklet for recording my results.............I find that a paper copy is very valuable as it is the basis of all things DAFNE, you can spot patterns there and then and get a picture of what is happening more accurately, for me the online diary gives a clean tidy format to present to your HCPs and conveniently gives you some BG averages which is nice when attempting to predict your HbA1c............... Each to their own eh........... |
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Feb 25, 2011
graham burton
14 posts
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Topic: General Discussion / Blood monitors JWO - yes i am, i have the one of the accu-chek metres that i use where i have to than write doen the blood level in the dafne book.i want a metre where i can do the blood test and also within the metre to say how much insulin i have given and than upload it to the internet via usb, wi fi etc. marke - i think yes that sounds like what i am looking for any info on this be great when you busy running around you have to try and find the book or than find a pen to write it in and than come to the computer to uload the data on to the dafne dairy which is look at the book and type in. |
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Feb 25, 2011
marke
681 posts
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Topic: General Discussion / Blood monitors Hi, we were looking at doing this with Lifescan meters, but the project seems to have stalled a bit at the moment. The person helping to do this, like Simon and Myself, was doing this voluntarily in their own time and obviously haven't had chance to progress it. If/when it is implemented we will let people know.The lifescan meters can be connected to a PC via a 'free' USB cable and upload into their free SW, the plan is to use the same connection to upload the data to DAFNEOnline. |
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Feb 25, 2011
marke
681 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View sorry just seen Jwo's post, the DESMOND site is http://www.desmond-project.org.uk and yes it is a DAFNE like course fortype 2's. I like their site, even if I know little about it.... |
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Feb 25, 2011
marke
681 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View Hi,I agree any training is better than none, however the danger with modified courses is how can the benefit of them be proved. The key to DAFNE is it is based on solid evidence gathered over a number of years and so if a PCT does commit to it, in theory they know that it will work. This is supposed to be what PCT's are looking for and there should be no Diabetics cast adrift since PCT's have targets and the National Diabetes Framework which they should be reporting against. These specify that structured education should be provided to all. The reality is this does not happen in all areas and chances are that those in these areas don't even realise they are missing out ! How this is addresed is the million dollar question. Specifically on DAFNE yes a key component is Carb Counting but its so much more than that and this, as said before, needs to be promoted more. I don't know anything about people insisting on 'default' values, I'm not sure where this comes from. For my course everyone was treated as an individual and everyone was given a chance to 'agree' changes to their insulin regime. No one can, or should, force you to change to something you don't agree with. That said my regime was changed and it was a leap of faith, but one I was happy to take. Perhaps not everyone is comfortable with this. It's good that you are discussing the article, I don't think anyone on here was being critical just highlighting the 'extras' DAFNE provides. We all want Diabetics to get the support they deserve either through DAFNE or some other means ( preferably structured with the support of HCP's) |
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Feb 25, 2011
JayBee
587 posts
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Topic: General Discussion / Blood monitors Are you looking to avoid manual input when uploading results? |
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Feb 25, 2011
JayBee
587 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View Sorry that I cannot reply properly now but for the heads up: T2 Diabetics have a course referred to as "DESMOND". I cannot remember off the top of my head what it stands for but the last two are "Newly Diagnosed" I think. Considering there are more T2 than T1, its a shame its not more heard of! |
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Feb 25, 2011
everydayupsa...
2 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View Hi allInterested to read your thoughts on my blog post. I've read a few accounts of people's experiences of DAFNE over the last year or so, and while I accept that my understanding when I wrote that post was incomplete, it still feels like it wasn't a million miles wide of the mark either. Most of the course does seem to relate to the whole carb-counting/dose adjustment approach, with additional support for eating out, alcohol, sick days etc. Many (most?) people seem to find the DAFNE course extremely helpful, with the inevitable exceptions who get little/no benefit. I have slight concerns over the insistence on people using the 'default' values that I've read about from some attendees (though that may be down to the individual course leader wanting everyone starting from the same place and adjust from there I suppose). The only thing you can really be certain of with diabetes is that Your Diabetes May Vary. DAFNE is a systematic approach to a complex condition, and one that clearly works. For many on the courses it seems that it is the first time they have been introduced to the concept of measuring carb intake against insulin dose and doing anything else than wildly guessing when things don't go as planned. I wish the course were available to all T1s (and wonder if a modified version of it could be developed for insulin-using T2s who get little or no support it seems). What really worries me though (despite the fact that PCTs who run DAFNE are expected to end up in profit as graduates avoid expensive complications) is that DAFNE has become something that PCTs 'don't offer here' either due to cost or lack of trained educators. And since they don't offer DAFNE, they don't seem to feel the need to offer anything at all. Insulin-using diabetics cast adrift without any educational support is the real tragedy, and even if you feel that DAFNE is the best and most comprehensive approach, surely some (non-DAFNE) education is better than no education at all. Mike |
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Feb 25, 2011
graham burton
14 posts
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Topic: General Discussion / Blood monitors hi alli am looking for a good blood monitr for my bloods that i cazn up load the resukltlst to ike the online dafne glosue diary. i do not have an iphone or andriod phone. by good if i can get one when i do my bloods that i can upload to the i=ternet with wf fi does anyone know of such devices. |
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Feb 25, 2011
graham burton
14 posts
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Topic: General Discussion / 4mm needles it is worth changing to smaller needles it helps wityh the diabetes and hurts less or in less time |
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Feb 25, 2011
marke
681 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View again I agree and it makes me think we should do more on this site ( when we have time :-) ).Our overview on the 'home' page doesn't do much to dispell the image of DAFNE being all about Carb Counting. I will try to get a better summary written and then get it agreed by the DAFNE Management Team so I can put it on the site. Its important that people realise the other benefits of DAFNE apart from Carb Counting ! |
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Feb 25, 2011
novorapidboi26
1,819 posts
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Topic: General Discussion / Blog: "DIY DAFNE" - An Diabetic Outsider's View The impression i get from people who have not done DAFNE but are aware of it, is that they would love to go on do the course.............there is a similar course provided online by the BDEC which many people go to whilst waiting on a course to open up..........There are some out there that do not know the extent of the DAFNE curriculum and it would be wise for people to find out in more detail what it actually covers..... I also agree that the sick day rules are fantastic and do actually work, I had the flu for the first time just before Christmas and couldn't eat anything, so naturally my body needed to use my stores of glucose and fat etc for energy, so its a constant production of ketones................brig forth the sick day rules..... |
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Feb 25, 2011
novorapidboi26
1,819 posts
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Topic: General Discussion / Not impressed x 2 The Stomach issue may be causing problems, only one way to find out really, change the sites and see what results you get...........you seem to be holding steadyish over night, so thumbs up for the evening dose, but unfortunately, after seeing what changing your injection sites do obviously, it will simply be a case of upping your BI morning dose until, well, you start to go low..........A pump would obviously help immensely, but is 10 times more work with the testing and ultimately you may still be taking the same amounts of insulin........ Good luck............ |
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Feb 25, 2011
maria51
22 posts
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Topic: General Discussion / 4mm needles I use 4mm only on my thighs with lantus. Used to use 8mm & it hurt a great deal + injection site leaked. With 4mm needles I get no pain, I don't have to "pinch up" & get no leaking. Fantastic !! |
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Feb 25, 2011
Jane Seddon
4 posts
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Topic: General Discussion / Losing Control Hi Vicky,So very sorry to read your post. I completely understand the "putting everyone elses needs before my own" part. I completed DAFNE last week but before then I'd completely given up on ever being in control of my diabetes as everything else (kids/work/home) came first. It got to the point where I was forgetting to take insulin for an entire day at a time. Because of this I couldn't function properly and looked like a shell of my former self. A week on I am feeling and looking better. I feel more positive and can start to bring some order to my life for the first time in ages...anyhoo...what I'm saying (sort of!) is you should maybe take time to focus on yourself and to make yourself feel well again and then in turn you'll be able to takle the issue of pregnancy. I was pregnant with twins in 2006 (HBA1C of around 8%) and the doctors sat me down and asked if I was aware of the risks of what a pregnancy could do to me and asked if I wanted to proceed with it. Needless to say they and I were fine. I guess you need to be in posession of all the facts to make an informed decision but at the end of the day it's a decision for you. Is there any other health care provider you could speak to about your concerns? I really hope you get the answers you are looking for. Jane |
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Feb 25, 2011
jackieh
4 posts
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Topic: General Discussion / 4mm needles Yeah, I too remember the days when you had reusable needles and metal and glass syringes! One needle had to last a whole week! I had to boil the syringe and needle each day - imagine as a 13 year old having to do that each morning before school!We have come a long way and I still have the lumps and bumps. Hey ho! Yes, 4 mm needles were mentioned on my DAFNE course, but, all being well, there's a pump with my name on it, so I'll leave things as they are. |
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Feb 25, 2011
DianeH
7 posts
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Topic: DAFNE Online Mobile / How to download data from iphone app Think I have cracked it. I logged into the Dafne online site on the iPod and it just uploaded. Then all I had to do was sort out the post midnight date. I have set the iPod to see my bedtime as after midnight so it stays on the right page but the main site still stops each day at midnight. Any way of changing that?Best wishes to all Diane |