Blog: "DIY DAFNE" - An Diabetic Outsider's View

Blog entry: DIY DAFNE

Came across this blog today and found it interesting because I understand what they see when it comes to DAFNE (I used to do the guesstimation stuff pre-DAFNE!) but I don't think they see everything DAFNE has to offer at the same time. I feel there is a possibility of DAFNE being shrugged off due to a brief outside view!

For example, how does this person cope when it comes to serious sickness?
Do they just go to the hospital like most of us would have done pre-DAFNE?

I don't know about you, but I was genuinely amazed and frightened about how the DAFNE sick day rules worked - but they do work! It's quite natural for someone who has not done DAFNE to think "oh I couldn't possibly do that" because of the risk of taking the action - it is a lot of insulin to take on such a regular and hourly basis!

Before I did the DAFNE course, my doctor's rough explaination of DAFNE was along the lines of "it's what you do now, but with a bit more information" ... something like that - and I think that's a great thing, not a reason to pass it by.

It's all well and good you DIY'ing your control, but if you can get the research results from day one - good golly, it sure saves a lot of hassle! I don't think it'll be possible to figure out post-hypo sensitivity on DIY alone as well - another hassle saver from DAFNE!

What are your thoughts on this? How do we feel about how well DAFNE stands out within the diabetic community?
Does it need a stronger or louder voice?

My thoughts will come as no suprise, I did after all start this site with Simon, the article like most that have not done DAFNE misses the point conpletely. Just becasue the name of the course includes a reference to eating people presume thats all it is. Those that have done the course know different. Unfortunately it seems that even some of those in the medical profession don't get the point.
DAFNE is evidence based, this means it is based on lots of research and a large amount of data that proves it works. Doing it DIY or doing a PCT version of DAFNE is NOT the same. Changing the course to 5 x 1 day a week is NOT the same. Evidence is base on fact not presumption. This sadly is where it does need a louder voice, to make people understand its more than just carb exchanges and the body of evidence that supports it.
I have no problem with people adjusting their insulin themselves and I too did it pre-DAFNE, however it is niave to compare this to DAFNE and believe you are doing 'the same' as DAFNE. You are not.
Anyway, my views, interested to hear what others think.

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.....

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 !

Hi all


Interested 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

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!

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)

sorry just seen Jwo's post, the DESMOND site is http://www.desmond-project.org.uk and yes it is a DAFNE like course for
type 2's. I like their site, even if I know little about it....

Hi Mark

Don'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:

Finished my first day of DAFNE today. Got a call on Friday to say to do 1u : 1 cp for breakfast even thou I'd been told I could keep my 2:1 before. Seems the peer reviewer said they weren't allowed to do that.

Started out just talking about how long we'd had D, our names, insulin types etc. Talked about what diabetes is. Talked about the main 3 food types (I was shocked how little a lot of people knew). We then sorted plastic food into low, med, and high GI, again I was shocked at what some of the people thought about this.

Had lunch, there was scales and stuff. Everyone had to use 1:1 for it.

Went over insulin profiles and a bit about basal testing (I'm fairly sure I was the only one who had heard of it or done it). Talked about BG monitors and Ketones.

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.