DAFNE confusion

fairylights

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I found DAFNE very useful because of the way it teaches you to check and make adjustments in a much less haphazard way than I had been doing previously. Because I met other real life diabetics, Because I got to know the DSN and dietician much better. Because I didn't feel like a failure any more for not being able to get my Dawn Phenomenon under control. And ultimately because I got a pump within a year after doing it, a pump was never on my wish list but the DSN and consultant persuaded me that it was the best thing for me and they were so right.

Yes they talk about carbs as that's what most people eat, there was a guy on my course who put sugar in his tea and drank full sugar coke and ate chips for lunch every day, but the aim was to help you with what you usually do so they tried to help him in the same way they would help with me eating lower carb meals and I would expect would help anyone eating low carb meals. Also we went for lunch with them everyday and they didn't exactly eat many carbs themselves to be honest.

Maybe I was lucky but there was no pressure and no judgement (but maybe a little persuasion to give up sugar in tea and full sugar coke).
It was definitely a turning point for me (I had only been diagnosed 2 years at the time)
 
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Blackers183

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No unfortunately not, basically its a generalised course but varies depending on who is giving it.

Go on the course see what you learn and then come here and ask any questions you have. You're much more likely to get a better answer.

The course is supposed to delivered 'exactly' the same as DAFNE is a research project and the outcomes (attendee BGL result) are used as part of the analysis. Presenters however have different backgrounds so you do get natural variations in what is presented. I summarised the course on 2 pages at the end to get it very clear to manage by BGL consistent with the DAFNE 'rules' and it works for me :)
 
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RuthW

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So, here I am, at the diabetes department waiting room, for my appointment with the nutritionist who will teach the DAFNE course which I will attend next week, deliriously happy that I will finally know how to handle my condition instead of shooting blindly and rather aimlessly.

Having done my homework (“Think like a pancreas” and “Dr. Bernstein’s Diabetes solution”) and with my carbohydrate and calorie counter app in hand (a trusted tool for the last 2 years) I waltz in the room confident that I will prove myself to be a good diabetic! I have googled my 500 rule, my 1800 rule and I keep a very consistent food diary.

“Show me your food diary” my nutritionist says.
Now… I add up the carbs content in everything I eat (other than the teaspoon of single milk which I use in my coffee).
I also have a diabetic friend who gave me a suggestion on how to calculate carbohydrates in protein so I add these too.

She looks at my diary which mostly consists of salads and meat/fish.
She gets this annoyed look…
“No, no, no, no, no” she says. ‘We do not calculate these as carbohydrates!”

I am like… “huh??”

She continues “anyway, keep doing what you are already doing and we will correct it next week.”
I ask her “so we do not add up the carbs content in vegetables and meat/fish?”
“No” she responds.
“No even in tomatoes?” I ask
“No” she replies.
“How about cheese?”
“Nope!” she replies.
“And what about legumes and fruits?” I ask
“We do not add up the carbs in legumes because they have very low GI and GL so the carbs break down very slowly and, as a result, they do not create a blood sugar rise. We calculate fruits except grapefruit.” She replies.

‘So do we only calculate pasta, rise, bread, cereals, sugar and flour basically?” I asked.
“Pretty much…” she replied…

Confused enough I went home…

On the next morning, I decided to have a grapefruit for breakfast without bolusing.
I went from a 9 to a 16… I sat on this 16 like an elephant for about 5 hours…

I am feeling rather weird about the DAFNE course…
Any suggestions are very welcomed.

Thank you
Regards
Josephine
Good grief, you start your morning at 9? That's not good at all. Hopefully, the good DAFNE lady will be able to help you bring that down. Plainly your current regime isn't working.
 

tim2000s

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Anyone who has done the DAFNE course, was what is considered a "Good" Hba1C level or average blood glucose discussed on your course?
 

Claire007

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@tim2000s From the handbook 'We believe the best hba1c is between 45 and 55'
But the 'in range' starts from 42.
I had a very positive experience, even as a low carber. I ate fairly low carb before I was diagnosed earlier this year so I wasn't about to change. My hba1c was below dafne target @ 40, I wasn't asked to raise it. (Even though I suspected they would)
Some people found the course very hard, had very little understanding, and made some very dangerous decisions while on the course. One guy gave himself twelve units of insulin to correct a pre bed BG reading of 12, then 'felt hypo' didn't test, ate a banana and went back to sleep :***: This was the night following a whole afternoons session on hypos, how to treat and importance of testing.
The course leaders honestly had the patience of saints. On the last day someone else had about half a pint of fresh orange with her lunch and 'didn't realise it would contain sugar' so didn't bonus for it :banghead:
The course is intense but they really need to consider some pre course learning for people who haven't carb counted before ( or don't ever test their BG)
 

RuthW

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@tim2000s From the handbook 'We believe the best hba1c is between 45 and 55'
But the 'in range' starts from 42.
I had a very positive experience, even as a low carber. I ate fairly low carb before I was diagnosed earlier this year so I wasn't about to change. My hba1c was below dafne target @ 40, I wasn't asked to raise it. (Even though I suspected they would)
Some people found the course very hard, had very little understanding, and made some very dangerous decisions while on the course. One guy gave himself twelve units of insulin to correct a pre bed BG reading of 12, then 'felt hypo' didn't test, ate a banana and went back to sleep :***: This was the night following a whole afternoons session on hypos, how to treat and importance of testing.
The course leaders honestly had the patience of saints. On the last day someone else had about half a pint of fresh orange with her lunch and 'didn't realise it would contain sugar' so didn't bonus for it :banghead:
The course is intense but they really need to consider some pre course learning for people who haven't carb counted before ( or don't ever test their BG)
Yes, this is why all the 'medic-bashing' on this site is so out of touch with the reality of clinical practice. There are many, many people out there that medics deal with who haven't got the faculties to deal with diabetes at all. The number of times I have tried and failed to explain to someone what carbohydrates are, where they are found, and how they affect the body.... I can't count. Too often.
 
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ann34+

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I am in the exact same situation... I so feel what you describe.
10 days prior my monthly, my levels are high and so persistant. This insulin resistance lasts for 2 days after my period comes and then, my blood sugar levels drop like a stone. The next 10 days are the days that I have the most hypos during the month, my ratios change completely, my insulin sensitivity changes so much that I don't know what to bolus for... and after these 10 days, when ovulation starts... well, here we go again... up in teens and struggling to find the correct ratio to lower my glucose numbers...

i was the same, with at most only 5 or 6 level insulin need days (when ins needs low, and carb needs had to be high, no exact pattern, just had to accept there was no pattern and go with it, got good overall control but too many hypos and highs, no pump available then, though. But it was time consuming. It was still good to get older have not have all that effort.
 

tim2000s

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So there is stuff in the handbook that describes what a good number is, but how much emphasis is on the course?

And doesn't it beg the question, isn't trying to teach people who "don't have the faculties to deal with diabetes" as @RuthW says, to carb count and adjust their doses to eat the same old rubbish, completely pointless? Wouldn't they have a better time if given a stricter, less varied diet with more concise instructions? It would certainly cost the NHS less in the long run?
 
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ann34+

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So there is stuff in the handbook that describes what a good number is, but how much emphasis is on the course?

And doesn't it beg the question, isn't trying to teach people who "don't have the faculties to deal with diabetes" as @RuthW says, to carb count and adjust their doses to eat the same old rubbish, completely pointless? Wouldn't they have a better time if given a stricter, less varied diet with more concise instructions? It would certainly cost the NHS less in the long run?

That was tried for a lot of the years since insulin came in, to mid 1980's,. When i was diagnosed, there was only strict, simple advice with 10g carb 'exchanges', and just before that there had been the even stricter black and red line system. In the USA they counted fats, proteins, and carbs. Then In the UK the exchange system was abandoned, then even carb counting was abandoned, Balance magazine stopped publishing carbs on their recipes, we were told we should just 'eat healthy and normally', my consultant said most people did not follow the exchange system anyway. Being very careful was thought to be obsessive. There was also the new availability on prescription of testing strips (a limited number of these were available before this through teaching hospitals). Daphne may have been a response to these no counting years and to the findings of the DCCT, (in 1979 there were still arguments in the medical press over whether control was linked with complications - there was not much encouragement to get what would now be called good control ). Are you thinking the exchange system could be an option again?
 

RuthW

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So there is stuff in the handbook that describes what a good number is, but how much emphasis is on the course?

And doesn't it beg the question, isn't trying to teach people who "don't have the faculties to deal with diabetes" as @RuthW says, to carb count and adjust their doses to eat the same old rubbish, completely pointless? Wouldn't they have a better time if given a stricter, less varied diet with more concise instructions? It would certainly cost the NHS less in the long run?
I also have passed through all the changes in fifty years. I have come to the conclusion that education is the only hope, but education takes time. Most people will need a lot more support over a much longer time than DAFNE etc currently offer. But a couple of years ago, they were saying that over 70% of diabetics had "poor control". If DAFNE reduces that figure by 10-20% only, which I believe it can, that's quite a result.

Also, in the long term all the technological support available now, such as carb counting apps and recipe sites, will eventually wash through the population. That will make DAFNE more effective.

But, in my view, any policy with the words "strict" and "diet" in it is bound to fail! Look through some of the boards here and see some of the psychological problems people have with just having diabetes. People need the prospect of (at least relatively) Normal Eating, or they just can't cooperate.
 
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Claire007

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There's plenty of emphasis on the impact of poor control. An afternoon was spent on complications, what happens to the organs when BG runs high, etc but unfortunately four people on the course already had quite severe complications as they'd either stuck their head in the sand in one case or lacked understanding in the others.
My DSN is part of the original team who brought dafne over from Germany, the course doesn't vary as people seemed to suggest up thread, it's regulated and the teams who deliver it are assessed and observed by Dafne every two years.
They are not allowed to vary the content in any way, and they have to deliver the full content of the course. This was all stressed in full at the start of the course.
I guess they vary the way they explain things depending on the individuals they have.
People will have the diets they choose to have, the course is run with a DSN and a dietician. Healthy eating advice is also part of the course but the EatWell plate was the part of the course I personally dismissed but given the diets some of them had, EatWell would be a improvement, if it makes a small difference then that's a start.
 
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tim2000s

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This all raises interesting questions though. I was brought up on Exchanges, countdown, etc. That was all about carb counting. I know DAFNE shows evidence of sustained improvement after 6 and 12 months, but there is no evidence after 24. I've carb counted all my life, and in spite of not having DAFNE, when moved to MDI was given basics in ratios (and we are talking somewhere around 1991). This is what I've done all my life.

What I don't really see is what is different about DAFNE-like courses? CPs are equivalent to exchanges, and fundamentally it's all about carb counting. The NDA figures would suggest that there hasn't been significant change in the way most people manage their diabetes.

Is a 10% improvement on a 72 going to make any difference to complications?
 

staffsmatt

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Is a 10% improvement on a 72 going to make any difference to complications?

Yes probably, surely any improvement will make a difference. I'd been doing carb counting all my life too, I still learnt a lot, I didn't know bolus lasted for IP to 4 / 5 hours so used to correct after 2 (and go low). I didn't know about ratios, I just had a set amount of insulin for certain foods, and I also didn't know about sick day rules, I didn't even have a ketone meter!

I think one thing that DAFNE does very well is to give you a boost in confidence in what to do. It is of course up to you to do it...
 

tim2000s

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I think one thing that DAFNE does very well is to give you a boost in confidence in what to do. It is of course up to you to do it...
That in itself is a big thing. It raises another question for me, given that we appear to have historical evidence demonstrating that carb counting wasn't followed. Once a DAFNE course has been taken, should there be a refresher day every 18 months?
 

Claire007

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There is, every year you get a schedule and choose the modules you want a refresher on. It's about much more than carb counting.
 

Gaz-M

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Ive not had a refresher option and I did the DAFNE course years back
 

Claire007

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You can repeat the whole course in you need it, or just elements of it.
 

Claire007

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You can repeat the whole course in you need it, or just elements of it.
 

tim2000s

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Interesting that for a course that has a mandated delivery approach, the two of you @Claire007 and @Gaz-M are seeing very different after care approaches. When I've read through the DAFNE website, there is nothing mandated about a yearly follow up.
You can repeat the whole course in you need it, or just elements of it.
Given the waiting times for the course (or equivalents) in some parts of the UK, I'd be surprised to see that offered in many places!
 

novorapidboi26

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I too never had a refresher, although there was mention of one..........

I think with my group there wasn't a demand for it, any specific needs of certain individuals could be dealt with at one on one appointments....