Dafne...why oh why?

[Tdm]

First of all, please don't let the following put you off the dafne course...

But....i was on my first day of the course today and...
1/ I really don't see the point of carb points. It just introduces so many unnecessry rounding inaccuracies, and felt this was summed up somewhat when, when i said my ratios went from 1 to 10 to 1 to 17, that was translated in cp as 1 :1 to 1:1.5...not only is this more confusing, but it also misrepresents my ratio.
2/ the text (and trainers) refered to QA instead of quick action insulin, BI instead of basal insulin, CP instead of carb points and BG instead of blood glucose. I 'm not sure why. Confused me, confused my neighbour.
3/ we were told you are not hypo til under 3.5. Whilst i realise non diabetics go that low, it makes sense to me to treat a 4 as hypo as you are likely to fall plus, with the errors in blood monitoring devices, cgm lag, a reading of 3.6 may actually be a fair bit lower. Also staying 4 or above will help with hypo awareness
4/ they were moving people who had little awareness of carb counting from novorapid to fiasp. Now, from being on here, i don't really consider fiasp as the best insulin for beginners. Luckily, they didn't try to do that with me as the whole class would have heard my opinion on the vaguaries of fiasp, that i have got from fiasp experienced people on here.
5/ my good control was, as always, put down to the honeymoon period with no nod to the amount of work i put into it. Though i am getting used to that. Cos no way should the patient in any circumstanes be considered to be 'doing well'. In half a mind to just not do all the stuff i normally do so i can point to the difference i make, but harming myself to make a point is taking it a bit far. Still, it irks
6/ Once again, i asked for a half unit pen for my basal (on 1 to 2 units) I even told them the insulin i wanted (lantus in place of ablasaglar) and the name of the pen (advised by a board member). What happened? Nowt. Oh well. To be honest i think i may not even need basal, like northerner
7/ questions were not answered. We were told to put on a post it note, then on the board. Presumably they will answer them at the end of the 5 day course? Kind of a disincentive to ask questions. Way to knock interactity on the head!

Anyway, I just needed a rant.

 

[Tdm]

Oh, and another thing...

We were told not to carb count the beans in a tin of baked beans.

A - commercial baked beans, even sugar free, are like rocket fuel to me
B - just how are you to determine what proportion of carbs in a tin of heinz are from beans? I mean, i suppose you could take a tin, rinse off the sauce, weigh the beans....
C - whilst fresh beans may digest slowly, haricots that have been processed to the point of being in a tin of heinz are a different kettle of fish
D - as we were also told not to count tomatos, i suppose that means a tin of no sugar heinz baked beans had no carbs. Well, good luck with that....

 

[Inka]

Rant away @Tdm! I’m not a fan either and the ratio thing is just stupid IMO. It’s good that DAFNE exists for those who need or want it, but it makes a right old palaver about carb counting, which is actually pretty simple.

 

[helli]

1. Sorry this is your experience of DAFNE. My understanding is that is adapted by local teams and it sounds like your trainer is rather old school in terms of "carb points". My local course did not refer to these but had a weird way of calculating insulin doses based on insulin to carb ratios which, as an engineer, I found far too complex.
2. I think QA, BI, etc are also old school terms. Although with 20 years of experience under my belt, they were not things I had heard of until I joined this forum. Like you say, they are not common parlance and do not ease learning.
3. That sounds like semantics to me - technically 3.5 may be counted as hypo but as we are advised to trat anything below 4.0, it makes sense to call 4.0 a hypo. Definitely doesn't help with understanding.
4. I think the challenges of FIasp are die to expecting it to behave the same as fast acting insulins we have experience of. If you have not got the hang of NovoRapid, you don;t have the problem of having to "relearn". I don't know about your class but when I attended the local equivalent of DAFNE, most of the people were not new to diabetes. I think most of us were there as it was a prerequisite for pumping, I had 12 years of jabbing experience before I went on the course.
5. I think that is "horses for courses". My DSN is always telling me I am "doing well" when I want to do better. Some people need that extra push and some teachers think everyone needs to be treated the same,
6. I am surprised you want Lantus. It is quite an old basal with an inferior pen compared to the NovoNordisk ones. The profile rarely lasts a full 24 hours and isn't flat. Have you tried requesting Levemir or Tresiba?
7. handling questions is challenging as a trainer. Sounds like yours is not very experienced. At least they are writing the questions down so you can point out they have not been answered. Maybe you could ask for answers at the start of tomorrow. I must admit, I would be using their inability to answer questions as a reason to ask more. But then, I can be an annoying student.

Fingers crossed the course improves and it is worthwhile for you ... you don't have to adopt everything, especially not carb points.

 

[Amity Island]

@Tdm

I attended d.a.f.n.e course about 10 years ago. I did learn quite a bit, but felt it very pre-scripted. I too was also told about ignoring pulses, peas and beans etc, but these have a huge impact on my blood sugars, thus need to count them.

It's a good starting point, but felt it lacked any depth. I'd of enjoyed another experienced diabetic (@everydayupsanddowns for example would be a good choice) talking about diabetes and taking questions, but they are not "qualified" to give medical advice no matter how well founded it is.

 

[Tdm]

Most of the people they were moving to fiasp were from from novorapid. None of the people struck me as being experienced in carb counting. I mean, they may like it, but i am not keen.

I did keep my criticisms to myself, don't want to spoilt it for others by being disruptive.

My request for lantus was on recommendation from here, as i only took 2 units a day, so a 24 hrs insulin with a half unit pen gives me more fexibility...i'm on ablasaglar so isn't lantus effectively the same, glargine? Anyway, now down to one a day so it maybe a don't actually need a basal...will leave it a couple of days on 1
Unit, see how it goes

 

[Tdm]

@Tdm

I attended d.a.f.n.e course about 10 years ago. I did learn quite a bit, but felt it very pre-scripted. I too was also told about ignoring pulses, peas and beans etc, but these have a huge impact on my blood sugars, thus need to count them.

It's a good starting point, but felt it lacked any depth. I'd of enjoyed another experienced diabetic (@everydayupsanddowns for example would be a good choice) talking about diabetes and taking questions, but they are not "qualified" to give medical advice no matter how well founded it is.

Good point. In th US i belive they license 'diabetes educators'. I don't thing they have nurse training.

Or they could draw on the experience of those in the group. People sharing what works for them..after all, everyone is more than 6 months in so must have a few tips -I know i do, but trying hard not to be a know-it-all...(and failing miserably - ed)
Mind you, most of what i know i learnt here...and think like a pancreas. Hurrah for you all!

 

[Bruce Stephens]

My local course did not refer to these but had a weird way of calculating insulin doses based on insulin to carb ratios which, as an engineer, I found far too complex.

Mine too, though I think they were half still thinking in terms of 10g units and just confused themselves unnecessarily by trying to keep both schemes in mind.

 

[Proud to be erratic]

Hello @Tdm,

First of all, please don't let the following put you off the dafne course...

I did my DAFNE course just over 12 months ago and initially felt discouraged by the end of the 1st day. But it did settle down.

But....i was on my first day of the course today and...
1/ I really don't see the point of carb points. It just introduces so many unnecessry rounding inaccuracies, and felt this was summed up somewhat when, when i said my ratios went from 1 to 10 to 1 to 17, that was translated in cp as 1 :1 to 1:1.5...not only is this more confusing, but it also misrepresents my ratio.

This is what is defined in the DAFNE course book. I, like you, didn't feel the introduction of carb points and different ratios was particularly helpful - on day one. But by day 5 I'd accepted the DAFNE vocabulary and just got on with using it. Also when you get to the lesson about using the simplified Carbs and Cals book the reality is that you are being introduced to a modified system and there is some merit in using slightly different vocabulary to help reinforce this is the DAFNE way.

To be fair DAFNE is trying to make bolus dosing simpler and carb points are their system. In practice if I've made my best calculation of carbs, once I've applied a fairly arbitrary guestimate of reduction for today's activity, then adjusted my correction to counter my natural increased insulin resistance when I'm high .... it has all become more of a guestimate than a precise calculation. And since I got a CGM in Feb 21 after 12 months of just finger pricking then my ability to be responsive to misjudged doses adds to my capacity to stay flexible and not get bogged down real precision.

2/ the text (and trainers) refered to QA instead of quick action insulin, BI instead of basal insulin, CP instead of carb points and BG instead of blood glucose. I 'm not sure why. Confused me, confused my neighbour.

I don't have much angst about abbreviations; but I worked in an industry that uses abbreviations a lot.

3/ we were told you are not hypo til under 3.5. Whilst i realise non diabetics go that low, it makes sense to me to treat a 4 as hypo as you are likely to fall plus, with the errors in blood monitoring devices, cgm lag, a reading of 3.6 may actually be a fair bit lower. Also staying 4 or above will help with hypo awareness

Your point about staying above 4 is very true. But I found it interesting to know that 4 is not the floor. Also one student had only been T1 for 3 months, was looking at her Libre and seeing her latest scan drifting her down towards 4 and was immediately relieved to find she wasn't about to go hypo.

On balance I feel it is right that we at least know something about true nos - even if that detail slips away most of the time. Incidentally our 4 in metric units is x18=72 for America and Imperial units; they naturally round that down to 70 - which is a little bit closer to true hypo at 3.5x18=63

4/ they were moving people who had little awareness of carb counting from novorapid to fiasp. Now, from being on here, i don't really consider fiasp as the best insulin for beginners. Luckily, they didn't try to do that with me as the whole class would have heard my opinion on the vaguaries of fiasp, that i have got from fiasp experienced people on here.

We're they actually moving them from one insulin to another or opening up the possibility? I suspect nothing is yet changed.

5/ my good control was, as always, put down to the honeymoon period with no nod to the amount of work i put into it. Though i am getting used to that. Cos no way should the patient in any circumstanes be considered to be 'doing well'. In half a mind to just not do all the stuff i normally do so i can point to the difference i make, but harming myself to make a point is taking it a bit far. Still, it irks

I had the same difficulty - my decent control and good HbA1c (then) was initially ignored; but I did eventually raise the matter- mainly to let other students know that not everyone was completely adrift!

6/ Once again, i asked for a half unit pen for my basal (on 1 to 2 units) I even told them the insulin i wanted (lantus in place of ablasaglar) and the name of the pen (advised by a board member). What happened? Nowt. Oh well. To be honest i think i may not even need basal, like northerner

7/ questions were not answered. We were told to put on a post it note, then on the board. Presumably they will answer them at the end of the 5 day course? Kind of a disincentive to ask questions. Way to knock interactity on the head!

This is a particular training technique - log the questions and answer them when more knowledge has been shared. The DAFNE syllabus is pretty relentless.

Anyway, I just needed a rant.

After day 5, my frustration had been worn down somewhat because there was a lot of good stuff as well.

My biggest issue was that throughout the course questions and discussion about best use of CGM was firmly quashed - it was just not in the DAFNE syllabus. I felt that was a huge failing - considering how much the NHS is now investing in tech helping to manage insulin dependence. I was told after the course wash-up to raise that with DAFNE HQ; I suggested as an experienced DSN such a dialogue would have more credibility and merit coming from her. But in practice I suspect she was overloaded with work and would probably not have the capacity to take up that challenge; also my perception was that she did not feel it was important. Whereas I did.

Anyway hang on in there - it did get better for me.

 

[everydayupsanddowns]

I’ve never done DAFNE, but I know that it works. It’s one of the few education courses for T1 that has trial data to back it up.

I have heard some interesting experiences from some who have attended. One of the things that seems to happen (or used to) is a kind of reset for everyone. Probably because people may be arriving with some fairly random and chaotic doses, which may be waaaaay off what they need, and resetting to something standard at least gives the educators a chance to separate wood from trees.

As the course progresses, I understand it becomes more individualised?

 

[rebrascora]

My experience was similar to @Proud to be erratic.
Day one was a bit confusing because of the terminology but I kind of understand why they do it. Many people get confused about which is basal and which is bolus insulin so calling bolus QA makes sense. I think we get used to the terms basal and bolus here on the forum because we are using them all the time but your average Type 1 is unlikely to hear the term regularly or may be older generation who have never used the terms.
Keeping the list of questions that crop up until the end of the course means that they don't start jumping about through the course material to answer them and if there is anything left uncovered my the course at the end then I am sure they will answer it. The DAFNE educators have to go through very strict selection and training.

They try to simplify the carb counting by not including things like baked beans unless it is half a can on toast or things like re kidney beans in chilli etc. and they like people to have nice easy carb ratios to make the calculations simple. As Roland said, by the time things like exercise and stress and ambient temp come into play, doing a really accurate carb count is a bit pointless, particularly when you are on MDI. There was a girl on my course who was using a 1:8 ratio and they were keen for her to round it up to 1:10 but she said she was quite happy doing the maths at 1:8 so they left her to it, so I think it is really just about simplifying rather so that people are not put off rather than saying that you shouldn't be more exact.

You do definitely get more into the swing of it after the first day and by the end of the course I had really enjoyed it even though I don't use most of their system now. It did give me confidence to manage my diabetes better and particularly to change my basal doses when necessary and spending time with other Type 1s was priceless.

I think there were one or two people on my course that they changed to Tresiba by the end and 2 people got insulin pumps as a result. I was just after Libre, but it took me another 11 months to get it on prescription for one reason or another. Probably partly down to the pandemic which happened a few months later.

Anyway, try not to feel too despondent after the first day. They have to pitch it so that the lowest level of diabetes knowledge is covered and make it simple enough for everyone to follow, so yes, there will be some things which are over simplified for your level of understanding. It also takes a few days for the educators to get the measure of their patients/students, so you may well find that by the 3rd or 4th day you have developed a better rapport with them.

 

[Tdm]

I hope so, going to stick with it for now, i'm no quitter. Thank you for encouraging me hopefully once we are off the basics there will be more i can get from it.
Part of it may be my pride, and irritation, that i've had to work stuff out for myself, having not got a great deal of support from the prev clinic. Mind you, having read some peoples stories on here, alot of people had it a lot worse. I also appreciate i am a bit like 'i know best, my way of doing it is best' but need to be open to other ways...after all, i though low carb was the bees knees, until i realised i was wrong
As for the fiasp, they had moved most of us. They were picking up the presciption that same day. I presume it had been discussed in their one to one. But then i discussed moving to a more flexible basal in my one to one and that didn't happen.
I have concerns with them moving people who have high h1c and blood sugars in double figures over to fiasp, as a one to one substitution, given i have heard it 'turns to water' with high blood sugars.
Had they announced they had changed my insulin we would have had <words> .

 

[rayray119]

Yeah I found that a little odd as well I think for material is just standard matiertal. In teams of beans it was sujuested for us to go only do half the carbs for beans I unless we already know we need to it all

 

[Drummer]

Yeah I found that a little odd as well I think for material is just standard matiertal. In teams of beans it was sujuested for us to go only do half the carbs for beans I unless we already know we need to it all

I need to count beans at 180% of the number on the packet or tin - one of my rules is 'check, check and check for yourself if you really need to be certain'.

 

[Tdm]

Yes, end of the day, your diabetes may vary.

Well, day 2. I learned...

There is a local 2 year wait for a pump, if you are approved for one.
Lantus is more expensive than ablasaglar which may be why they deny the existance of a lantus half unit pen.

Interestingly, the worksheet we did today switched between carb points and grams of carbs, which confused people.
I am trying to translate my grams into CPs to be polite, but i and still using a 1 to 17 ratio which dafne denies exists...its 1 to 1 or 1 to 1.5 or 1 to 2. S@d that for a game of soldiers!

 

[Inka]

Don’t try to be polite! Do it in the way you usually do. You’ll give others confidence to do so too, and it might mean that the DAFNE peeps actually listen and adapt.

 

[nonethewiser]

Wasn't fan of them using CP must admit, few of us old timers told them so but apparently that is how course is taught & it's in all the pamphlets.

 

[Tdm]

They have a little pained expression if you don't follow the 'dafne way'.
For example, person in excercise today was eating a meal with a donut likely to turn up an hour later. The right answer was you should do 2 injections as meal and snack.
I said i would do one injection, which was very bad of me, and i now sit now with biscuits in front of me that i injected tea time insulin for, including said biscuits, nearly a hour and a half ago. Despite what they said would happen in such a scenario, I have not gone hypo.
I did also point out not bolusing for donut in meal in case friend who was fetching donut had a bakery related mishap and donut did not actually arrive

Oh, and as daphne says you don't bolus for carrots, the 18 carbs in the 250g of carrots in a carrot cake magically disappear, as do the carbs in a can of mushy peas....how you can call mushy peas low gi is beyond me....

 

[Tdm]

Also, you'd have thought there would have been a nod to reading cgm graphs. Snapshots of bs before eating, waking, bed etc don't tell of, say, downward tragectory overnight, which is a lot better indicator of dodgy basal than snapshot...esp if dawn effect has brought bs back up by the time you have checked.
Oh, i was also told alerts should be 5 at night. Why? With no bolus in system and no excercise bs won't change quickly and sometimes they meander below 5 then meander back up again. I don't need to wake up if my bg goes 4.9, i'm not going to do anything about it anyways...

 

[Leadinglights]

They have a little pained expression if you don't follow the 'dafne way'.
For example, person in excercise today was eating a meal with a donut likely to turn up an hour later. The right answer was you should do 2 injections as meal and snack.
I said i would do one injection, which was very bad of me, and i now sit now with biscuits in front of me that i injected tea time insulin for, including said biscuits, nearly a hour and a half ago. Despite what they said would happen in such a scenario, I have not gone hypo.
I did also point out not bolusing for donut in meal in case friend who was fetching donut had a bakery related mishap and donut did not actually arrive

Oh, and as daphne says you don't bolus for carrots, the 18 carbs in the 250g of carrots in a carrot cake magically disappear, as do the carbs in a can of mushy peas....how you can call mushy peas low gi is beyond me....

You come across this with lots of things to do with food, my OH is supposed to be on a low residue/fibre diet following his Crohn's flare up but what counts as low fibre differs depending on whose list of foods you look at. In the hospital he was told he could have soup but not jelly and ice cream. Next meal it was the other way round.