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DAFNE - Completely Negative Experience?

R

RachCWalker

Newbie
Good evening,

I am new to the forum and can't believe it has taken me so long to find it....! I am type 1 diabetic, and am currently 27 years of age. I was diagnosed when I was 2 years old, so my parents had a pretty rough time in the early stages. I have now been diabetic for the past 25 years and on the whole, have had good, well balance control.

I signed up for the DAFNE course as had a change of insulin regime (dropped lantus for levemir, as lantus not lasting for 24 hours caused too many problems) and struggled a little through a viral infection with high readings. Since then I have adjusted to the new regime, got myself a Libre meter (can't believe I lived without it before) and my HBA1c is 53.

I have just started the DAFNE course this week, and was really looking forward to it, given all of the positive things I have read. I have been told that we all have to do the same background insulin, so 12 units twice a day. This is a fairly big drop for me, considering I am normally 18 during the day, and 20 at night. This has meant that I have been sky high throughout today - bouncing between 17 and 20, which is really unusual for me. I have felt horrendous - really thirsty (surprise, surprise), sick, tired and struggling to focus. I have raised concerns about this to the course leaders (who are the two diabetic nurses who have helped me with my switch from lantus to levemir, so know me pretty well). They just keep saying that I have to "ride with it" and that DAFNE won't allow changes before 48 hours of being on the one regime.

Is it just me, or is this completely mad? We have spent most of the day talking about how diabetes affects everyone very differently how everyone needs different doses and some foods may have a bigger impact on one person compared to someone else. I feel I am case in point! I have always spoken up about the fact that I was nervous about cutting my insulin so drastically, and just cannot see the point in putting myself to dangerous levels. I want to get as much out of this course as I possibly can, but don't think I should risk DKA in the process.

Has anyone else had a similar experience? Any comments greatly appreciated.
 
I've never done DAFNE because I don't want to so I have no experience of what the course involves, but that sounds mad to me too!

Can you not increase your basal closer to your normal level? I'm an independent person and I wouldn't be happy with that at all.

And welcome to the forum :)
 
The course leaders have said that I need to remain on the current (slashed) insulin doses for 48 hours before they will consider changing. Even then, they will only vary them by 10% - which in the context isn't going to make much difference.

I feel that I have worked really hard since the change of regime to get everything back to normal and have good, tight control. The 53 HBA1c reflects both the good and bad period with viral infection, so my HBA1c going forward should be even better (at least, before DAFNE). I feel this course is sending me backwards, and I am going to have to fight really hard for damage limitation, just to get worse control than I started with. I just don't understand how this has been approved and is recommended...?!
 
I might be alone in my view as many Type 1s here seem happy with DAFNE, but I wouldn't ever go on that course. It doesn't appeal to me in the slightest and, in fact, I reckon I'd last less than an hour before I snapped : D

If you don't like what they're telling you to,do, don't do it. It's your diabetes :) You don't 'need' to do anything.

And if the style of the course isn't for you, then don't feel you have to stay. We're all individuals and we all have different preferences. There are other ways to get knowledge and support.
 
I think your course leaders might be doing it wrong... Starting everyone in the group on the same basal dose is ridiculous. That absolutely did not happen when I went on DAFNE - had I been on the same basal doses as the larger, more sedentary gentlemen attendees, I don't think I'd have been in a position to pay an awful lot of attention on the course.

Also, I did just ignore them when they were telling me things I didn't agree with (I.e don't correct, when I was 15, I just injected in the room, all they did was tut...well and suggest I see a psychologist but that's another story).

There are some bits of the course that are useful/interesting and it's good to share experiences with other type 1s. But if they are telling you things you don't agree with, just don't do them. What's the worst that can happen? They aren't going to throw you off the course.

Edit: I politely ignored them, there was smiling & nodding :)
 
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One thing to remember that we are not in the position where we must do everything suggested. We have a right to disagree and not have to do things to keep nurses and doctors happy. We have the right to express our opinions and to not accept advice given to us. We are not forced to do anything against our will regarding taking medicines.

I have in last few months been quite strong for the first time ever in my life when being told to do stuff that I know is just plain and simple wrong. Its been tough to do so but I know I have been right to do so.
 
I did a dafne course last October but with regards to Basal dosage that was left well alone as i had already done a basal check shortly before and all was ok. However my carb ratios where all reduced to 1:1 which i wasn't too happy about but i gradually worked my way back up to what i was more or less before the course.
Can't say that mine was a negative experience as for the most part i learnt a lot and my HbA1c did improve.

Regards

Martin
 
On the course I did we didn't do that, thank goodness! That sounds absolutely ridiculous.

Isn't that like putting a group of runners into the same size of shoe - it's that silly, surely?

:banghead:

@RachCWalker I think you have been absolutely right to question them on this.
 
I've heard of this being done before. It doesn't seem to be done on all DAFNE courses, and frankly, it's the most ridiculous thing that they can do. If you are already on a basal that works, and has been tested by yourself, then I see no sense in doing something that makes you feel ill. I too wonder what they'd do if they were putting people on a basal that was too high and resulted in a bunch of hypos or potentially hospitalisation? Surely they'd end up being sued for negligence in that case?

I'd be tempted to politely challenge them on this during the course today, both on the rationale for adjusting everyone to the same level, and why they elected the dosage they did, highlighting the risks.
 
I've done DAFNE and no this wasn't included on the course and yes I agree it's ridiculous for numerous reasons..

Firstly those teaching DAFNE do not live with diabetes.
Adjustments are going to make people feel unwell in running high.
One size does not fit all, I like the miners shoes analogy.
It would take all week for some to adjust to the correct basal rate, wasting valuable time.

However with that being said, please don't let it affect your view of the course, you have lived with this for a long time, you know what works for you, however DAFNE does teach some excellent stuff like coping with illness, learning about different insulins, ratio adjustments, carb counting and lots more, some of it you will love and some you may disagree with but for content and guidance it's a well rounded course. There was stuff I didn't agree with and did challenge them on this, again living with type 1 you know well what works for you.

What we did on our course was a day of fasting to check our basal rates and made adjustments then, rather than starting on the same rate, we also changed basal insulins when it was clear it wasn't working for some, every day we gave our results in and as a group discussed adjustments for each other, good group bonding session !

Try not to feel disheartened though, it would be interesting to know their thought process behind this ?
 
hmmm, that probably explains my endo's advice as well. He says the same thing to me about not changing my basal dosage for a minimum of 48 hours. As far as courses go, I can't even get into one here as it's only for T1 people even though I'm on basal/bolus insulin therapy because I hardly produce any of my own. They seem to like putting people into boxes don't they. I think I've learnt more about using insulin on this forum and the online course though than I have in person with my endo and the clinic staff. I like to know how things work and being told what to do doesn't always work in my experience. I've only just finally figured out at a rough guess what my insulin to carb ratio is... no one here thinks I need to know that. I would be worried if I was you too about dropping the dosage and having high sugars from it. I agree just do what works best for you.
 
Throughout my DAFNE course I argued with the nurses, and was proved right again and again. I think they were glad to be rid of me!

If you know yourself that that basal is too low for you ignore them and put it up. This wasnt done on my course but again I only did the box ticking to get a pump.
 
This sounds like madness and I'd be furious with them for putting my health at risk. They're only giving you advice regarding the basal...politely decline it and do what you know is best, with YOUR diabetes.
 
I have been unable to get on the DAFNE course (now called DIANE in Scotland), due to the nature of my work and the shift patterns involved. My only reasoning for trying to get on the course, was to try and aid my eligibility for pump therapy.

I had a lengthy conversation with my DSN regarding the course and my issues attending their available dates. She said there was little point going on the course because the knowledge I had surpassed that which is contained in their syllabus.

I don't mean to sound like a know it all, nor do I claim to be. But a long story short, the little I do know - I learned from here and the literature suggested by the members of this forum. The NHS run courses do tend to be pitched at those who have a poorer grasp of their condition and a narrower knowledge base than required for good management of the condition.

So if I were you, I'd go with your gut and apply the knowledge you have of your condition over that of someone else who is likely a non-diabetic and certainly won't understand your needs better than you do.
 
amazing( ly Bad ) !!

welcome to the forum @RachCWalker

I did not have that experience with basals -- but as @rockape37 said -- I was put on a 1 : 1 IC ratio for the first day and spent the entire day in the high teens.
on day 2, I was allowed to bring my I C more into line with what I had been doing prior to the course.

I would politely point out that as neither of your nurses have Type 1 D they should refrain from advice that is given as a 1 size fits all.
 
I think the reason why we are put on a 1:1 ratio has something to do with lets say re establishing correct ratios. As you know the more insulin you take the less effective it can be and you can end up taking far more than you actually need ( high insulin doses can result in less of it being absorbed so essentially its wasted).So the back to basics ratio may actually result in a lower ratio after a period of time.
With me my ratios actually crept right up to a point of being told dont go any higher (5 units to 1 gram of carbs)

Now I'm on a pump my ratios are much lower due to the pump being a more efficient delivery system.

Regards
Martin
 
Here in Shropshire it's called a STILE course. After 47 years of diabetes I thought I knew it all but I learned so much more and reduced my glucose levels. I experienced none of the things you mention as the course leader took note of each individual's insulin intake and diet, then worked out the ratio for them and corrective doses. After six sessions we had all noticed a big difference in our bg levels and were rewarded with a small chocolate bar and advised on how much insulin to take for it. I would certainly recommend this course but in the end only you know your own body.
 
I'm due to go on a course next week. In my area of Scotland where I've just moved to, they call it BRUCIE and it's just one day. I've managed ok for the last 50 years mainly just sorting it out myself, so it will be interesting to see what they can do.
 
Hi @Deb1million
without doubt -- go for a pump:)

I was type 1 for 43 years
14 years old at diagnosis
pumping for 1 year-- it is amazing ( after a short 4-6 week learning curve )
 
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