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.

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).

There are lots of positives about DAFNE above and beyond developing good carb counting expertise. The key thing is that it has helped ME to deal with MY diabetes, the point being that it isn't a one-size-fits-all methodology. I spent a (brilliant) week learning about the "engine" which is my body and the impact which diabetes can have. The week, given my new understanding, then gave me a "toolkit" to use to keep my body in good running order and to effect any corrections when things change or go wrong. DAFNE completely changed my relationship with my consultant and my diabetes team; they are now very much true "consultants" in supporting me with managing the impact of my diabetes. DAFNE empowers its users - empowers us to manage our condition effectively rather than being ruled by it, and empowers us in our relationships with the clinicians who support us.

I couldn't agree more about positive experiences during the DAFNE course - discussing our personal diabetes experiences with fellow students for the first time, the awakening to a real understanding of why we have those weird and often previously unpredictable symptom,s and some light-bulb moments about my own condition are things I can still recall clearly. But again, DAFNE is about so much more than those five days. Four years after I did my course I am still using the knowledge gained every day and can't envisage a time when I won't be.

I think the DAFNE course is the best thing that's ever happened to my Diabetes. Have been reading through all the posts on here and agree - a lot of what you know is through experience and trial and error but I just think the old regime did not work. It didnt seem to matter what I ate before - even a healthy meal and my BG's would be bad and then I'd eat something 'bad' and my BG would be fine - v confusing.
Before going on the DAFNE course I thought I understood about nutrition but found I didnt really know anything - especially with regards to portion control - was regularly having 200g of pasta or rice with meals thinking that was a normal size portion - but wasnt - now always stick to 100g.
I havent had a negative response about DAFNE just a confused response 'whats that about then?' - family/friends and work colleagues are all interested and am now recommending DAFNE to non-DAFNE diabetics.
Think the carb counting is genius - had not heard of that before - has helped hugely with portion control plus am losing weight which was a important thing for me. And the best bit - am definitely injecting less than before - am lucky to be on a 1:1 ratio at breakfast and lunch and a 1:5:1 ratio at dinner.
Just wish DAFNE had been around sooner - have been Type 1 for 33 years.

Its amazing how it took so long to organize a simple and effective way of educating us.............you gotta love the Germans...........lol

I was diagnosed 47 years ago and spent a week as in In-Patient at King's College Hospital - being 'stabilised'. We were taught the basics of carb-counting - an egg-sized potato was 10g of carbohydrate, as was an apple and an orange and various other foods were also covered. Does this ring a bell? 10g of carbohydrate was called a 'portion' and we were given a diet sheet - say 4 portions for breakfast, 5 for lunch and 6 for dinner. Our meals were prepared in the Diabetic Wing's own kitchen and were really nice. We were taught how to inject and told how much (twice a day - before breakfast and dinner). Of course there were no blood sugar meters in those days - testing consisted of dipping testing strips in urine and you hoped that it showed 'no sugar'. There was nothing you could do if it showed the presence of sugar.

I was quite amused when I went on the DAFNE course and found that the 10g portion had made a come-back. So in my opinion, carb-counting is not new at all.

Much of what you say holds memories for me Alan, although I was diagnosed a mere 30 years ago. Remember we referred to "exchanges" and you were allowed so many per meal, as you say. I used to live from meal to meal and hated being starved. The early blood glucose monitors were awful, well not the monitor but the finger pricker, which was at best lethal.
Dafne, for me was great, I learnt so much more in that week than the previous 28 years, however, control is slightly better but I now have far more hypos than ever before.

Haha, I still remember my first finger pricker - that was a nasty looking thing, but I was a heart broken little girl when it eventually broke!

It was one of those ones that you'd put the needle in a sort of 'catapult' bit and then you'd watch it fly down the side of the body into your finger. The place where you put your finger was like a little target! XD

Golly, I can't find a picture of it any where online!

Do you mean this

Yes, I remember these - terrible things! And that 'shunk' noise they made - OUCH!