DAFNE experience - the good and the bad!

[Unbeliever]

Ok, you need to look at the section I quoted and consider the use of "nonsense" and "negativity" within that context. There's a wider discussion from the OP on the DAFNE course and what I originally posted about and came back to was personal responsibility. I expressed my views and my experience on the benefits of personal responsibility. That does not make me narrow minded or ignorant of what others have gone through.

I believe Unbeliever's (say that fast!) comments regarding the information and courses being "geared at those with the worst control" and "based on very low expectations" to be negative and nonsensical. I believe, across the entire UK, that the poor level of control amongst T1 diabetics is not down to the failings of NHS. It is largely down to the lack of personal responsibility. Now, disclaimer time, there are exceptions, of course there are, there are people who, through no fault of their own, are suffering and are suffering badly. But I believe they are vastly outnumbered by those who don't care.

If you want to take it to nth degree then you can look at social, economic and political factors and reduce the number who don't care and increase the number who are being failed. There's always that argument and it doesn't just apply to diabetes, it applies to benefits and obesity, amongst other contentious issues. Whichever issue you look at, the time and resources required to improve the failings in the system are not there - largely thanks to the people who, like in Smidges OP, go to a DAFNE course and take jam doughnuts.

Take a look at this forum. This is what virtually everyone in the country has access to these days. How many people have succeeded in gaining control over their diabetes on this forum and others like it? How many, who have been failed by the system, have learned what they haven't been taught elsewhere right here? How many people are using what they learn here to challenge others and effect change? This forum is a beacon for personal responsibility because we all signed up. No one held a gun to our heads.

For that reason we should all be full of self-congratulatory bluster.

 

[Unbeliever]

Many of those on here doing he most to help educate others are doing so because the system failed them a a crucial time. so hey wish to save others from the same fate.
Much depends on when you were diagnosed and your own personal experience.and even a what stage you found the forum.
We are both speaking from that viewpoint. The only difference being that I oally accept that you have had a positive experience and am very pleased for ypoy/
My experience and that of others who have ot been so fortunate is equally valid.
Do you really believe that we are all the sme and that evryone is equally moivated to inform hemselves.
Unfortunately , I am sure that this isn't the case. And the consequences of not receiving the right advice at the right time or knowing where o find such advice can be catastrophic.

 

[Shaun IDD1970]

Like most things in life: you get out of it what you put into it. OS I am now putting into it!

Left London 6 years ago and DAFNE courses pretty much unavailable to me. Maybe I should commute to London. However ...

Got a BIANCA course in late Spring, which is 4 half days of Insulin & Carb counting: it appears to objectively reconcile personal insulin and eating to help improve control. Going on course as told by Senior House Officers that my HBA1C of 8 is too high, god bless the enthusiasm of junior doctors.

I think I have taken personal responsibility for MY diabetes: it is always evident in diabetic clinics who does not.

 

[novorapidboi26]

For me doing DAFNE...[January 2009]...changed my approach to my diabetes care completely........

Previous to this I was on a mix insulin and never tested my blood, so obviously I had good things to say....

For folk who a more recently diagnosed and are part of support forums like these the impact may be less positive as its likely they will be on MDI and carb counting already.

So these individuals will be going in already full of the knowledge and more importantly their own personal preferences to their BG management.

DAFNE is simply a stepping stone to your own personal BG management, it teaches you to be methodical and patient when considering a dose change, the action of the insulin you use, the effects of carbs on the blood sugar....

I think the Normal Eating in DAFNE may be outdated as it isn't normal to stuff your face with large carb meals, or at least it shouldn't be.....

A relatively low carb diet works wonders for all diabetic blood sugar levels, DAFNE simply allows us to cater for the times when we want a curry, or a pizza, or 500g of pasta all to ourselves....

The message that it is only a foundation to begin with and that each patient will need to go on to fine tune their control and change their diet accordingly should be made clear at the beginning. Unfortunately even the HCPs all learn differently as we do.

 

[Engineer88]

500g of pasta?! god those were the days... *le sigh*

 

[dannilou01]

I've been type 1 diabetic for 22 years adjusting insulin on what my glucose reading was, I first went on a DAFNE meeting back in 2008, struggled to get to grips with it, I had a relapse and carried on with what I knew. Last year they tried to get me back to doing DAFNE, and again lasted a few month, I struggle with it so much, but I really need to do it as my consultant is wanting me to go on the insulin pump. So tips on how you all manage would be nice x


Sent from the Diabetes Forum App

 

[C burns]

Robert 2170

I did the DAFNE course In stobhill and it has mad a significant difference in my life. The dietician and staff nurse who took the course there were tremendous. Obviously the course focuses on adjusting doses for eating normally. Throughout the course it was highlighted that if u want to make unhealthy choices then it's ur decision as a human just like any one chooses wot they wish to put in their body. The aim of the course is to adjust ur doses to wot u want to eat! It's ud responsibility. Yes there were snacks and drinks provided and we ate lunch in the canteen but we were advised to make the choices that we would usually make in our day to day lives and then we were supported to adjust our doses. The snacks provided did include chocolate biscuits, quavers, fresh fruit, etc but it was our decision to make the choice and I hav to say that throughout the week healthy eating was highlighted!

Good luck and I hope u enjoy the course, I personally loved it!




Sent from the Diabetes Forum App

 

[Daibell]

I think it's really sad that DAFNE doesn't appear to also help people make the right food choice. To just get patients to match insulin to their choice of food is a missed opportunity.

 

[Bubbatara]

Oh my god my dietician would have a fit - I was actively encouraged to use a plate for portion control but over half that plate be green vegetables or some form of veg not carbs. It was explained the vegetable carbs to me and not to mix them as I was told I needed some carbs to maintain my sugars but not to centre my diet around this as I would gain weight. As I can't be active with my heart condition. I'm shocked by this and it's promoted to help diabetics ???? To say it sounds beyond all rational and especially to a T1D whom I know things differ to a T2D like myself but still I can't see the diet side being much different other then we can maybe have a little more freedom but not much if you don't want to incur complications in later life.

Flabbergasted is a word I would use


Sent from the Diabetes Forum App

 

[novorapidboi26]

My course didn't promote a carb heavy diet, it was just a normal diet.......

Obviously there were tips and tricks to help with high carb/fat meals etc...

 

[mpe]

DAFNE doesn't suit everyone. But the nurses that took my course stressed that we CAN eat like everyone else, but that doesn't mean we should. Their focus was more on the cake and sweeties side rather than carbs from pasta and bread though.

The problem with such a focus is down to chemistry. There is simply more glucose in amylose and amylopectin (the compounds which make up "starch") than there is in anything called "sugar". Amylose and amylopectin are 111.1% glucose where as sucrose and lactose are 52.5% glucose. Glucose is, obviously, 100% glucose, maltose is 105% glucose and maltodextrins are at least 107% glucose.
The reason these are over 100% is that sugars are joined by what chemists call "glycosidic bonds". Formation of each of these involves production of a water molecule. Changing 10g of glucose into amylopectin yields 9g of amylopectin and 1g of water.

The other complication is that the the glycosidic bonds in sucrose and lactose are the last to be exposed to their relevent digestive enzymes. With the very first digestive enzyme humans apply to food is alpha amylase. Which acts on amylose, amylopectin and largish maltodextrins. Typically resulting in a mixture of glucose, maltose and maltotriose. i.e. a proportion of so called "healthy complex carbohydrates" is likely to be glucose by the time you swallow...

 

[mpe]

They don't encourage low fat high carb. They encourage a balanced diet. Never once did they tell me to eat more carbs.

Problem is that the so called "balanced diet" isn't really that balanced in the first place. It's very much slanted towards carbohydrates and especially glucose polysaccharides (which are about the worst possible thing to eat if blood glucose is an issue).

They DID suggest to someone else that she should change her mid morning chocolate digestive to a rich tea. Ie moderating the carb

Possibly on a per biscuit basis. Certainly not on a mass percentage basis.

 

[smidge]

Well, thank you to everyone for your thoughts on my DAFNE experience. I've been back today for the 6-week follow-up, so I thought I'd give you all an update.

Of the 8 course participants, I was originally the only one who said the course hadn't helped me. I was also the only one with my HbA1c within NICE targets. Everyone else was over target - many by a very long way, but they all enthused aboout the course and how much it had helped them.

Today was the day of reckoning. Of the 8 participants, only 4 (including me) attended the follow-up. 4 have dropped out and will be deemed to have not completed the course. Of the 4 of us that turned up, 1 was an intelligent young lad who learnt so much and has managed to stick to it and has seen a real improvement in his control - he has previously had many serious hypos including fitting episodes, but he has this under control now and has seen some really good stable numbers. 1 was a middle-aged man who has had diabetes since childhood - he had reasonable HbA1c but over target (in the 8s). He has learnt enough that he no longer pushes his BG high before exercise and is more confident in calculating his dose. We didn't have an HbA1c, so I can't say how this knowledge has affected these two, but I think it has been positive for them. The third guy has the most serious diabetic complications I've ever seen - mal-absorption which stops him getting any nutrition from his food. He struggled throughout to understand what he was supposed to be doing. Since the course, he has been in hospital with DKA. He has now been accepted for a pump. I can only hope this works for him. I don't think the course has really helped his control at all. And finally, me - it didn't tell me anything I didn't know and hasn't helped me at all.

So, 2 possible successes out of 8. We don't really know as we didn't measure the outcome. A pre-course assessment; 5 days of DAFNE involving a nurse and a dietician full time, half a day of a consultant and another nurse full time assessing the two giving the course; a further half day follow-up. Was this value for our funding of the NHS - I'll let you draw your own conclusions.

On better news, the dietician told me that she will be attending a course during the summer to learn how protein and fat impacts BG and to learn how to help adjust insulin doses to account for this. She said they were already running courses covering this in Poland and that although it's early days in the UK she is hopeful that they'll be able to start introducing this into an alternative DAFNE course in due course. I call that huge progress!

And so my DAFNE experience draws to a close. I still have very mixed feelings. What about you?

Smidge

 

[noblehead]

All good news Smidge, I hope they all continue to make good progress and the dietitian brings back some knowledge on how fats and protein effect diabetes control

 

[mrman]

2 out of 8 is not good figure wise,but, if I was one of those 2 who had done the course sooner than l had done it would of been 100% worth it. like you, by the time I done the course sourced all the important info myself from google/here. Personally think it has to be done as those who are willing to learn and take control should not miss out on the simple basics of how to basal test, learn how to treat hypos without over doing, adjust for excercise etc. Have seen many posts from newly diagnosed as well as people who have been for years The tools are there in the course,but I do think that these courses are very varied depending on who's running them, some better, some worse as.identified by those with good/bad experiences ,that needs sorting out.

Sent from the Diabetes Forum App

 

[AlexMBrennan]

On the other hand, the course started with the stated objective of enabling us to eat what we liked and jab to cover it and there was absolutely no attempt throughout the first four days to discuss healthy eating, portion control or the elephant in the room

That's because the idea is to Adjust your insulin Dose to Normally Eat rather than to adjust your diet - it's in the even in the acronym; and you are free to apply the DAFNE techniques to whatever you want to eat.

Your criticism is about as intelligent as saying evolution is and because it doesn't explain the Big Bang. If indeed there was ever any evidence to conclusively show that your low carb ideas are correct than DAFNE graduates could easily apply what they have learned to eat a low carb diet so it sounds like you've completely missed the point of the course in your low carb rage.

I have a bad feeling that the positive feedback DAFNE gets is due to telling people what they want to hear rather than telling them what they need to hear.

If you are worried, you could try looking at the studies that found DAFNE to be effective rather than just making up excuses to ignore reality when it doesn't match your preconceived ideas... Unless you are saying that patients are lying about their hba1c in the treatment group.

 

[SamJB]

That's because the idea is to Adjust your insulin Dose to Normally Eat rather than to adjust your diet - it's in the even in the acronym; and you are free to apply the DAFNE techniques to whatever you want to eat.

Your criticism is about as intelligent as saying evolution is and because it doesn't explain the Big Bang. If indeed there was ever any evidence to conclusively show that your low carb ideas are correct than DAFNE graduates could easily apply what they have learned to eat a low carb diet so it sounds like you've completely missed the point of the course in your low carb rage.


If you are worried, you could try looking at the studies that found DAFNE to be effective rather than just making up excuses to ignore reality when it doesn't match your preconceived ideas... Unless you are saying that patients are lying about their hba1c in the treatment group.

Studies that found DAFNE to be effective? Don't make me laugh. Of the references in the link, NONE of them report an HbA1c below 6.5% - in fact NONE below 7.6%. I've seen these studies before, they're on the Diabetes UK website as support for DAFNE. Bearing in mind that these are the studies that report success, let's take a look at the final HbA1c results that each reported:

9%, 9%, 7.6%, 8.4%, 8.8%, 7.8%, 8.6%

And these are the papers used by Diabetes UK and the NHS to report on the SUCCESS of DAFNE! I don't call that success, I call that a failure. No wonder 93% of Type 1s aren't hitting the 6.5% HbA1c target when they're being guided by advice from disastrous studies that are branded as successful.

Two of the papers are from the 1980s (the HbA1c results in the 9s) - call that contemporary modern, effiacious research? Nope, didn't think so.

Most of the references in that link are about improvements to peoples' lifestyles as a result of DAFNE. That's how they brand DAFNE a success. I'd brand it as a success if it brought the participants' risk of complications to be at unity with the non-diabetic population. But it doesn't, does it?

The people peddling DAFNE are either blind to the FACT that it is inefficacous for a population, are stupid, or are deliberately misleading.

Maybe we should all aim for an HbA1c in the 7s, 8s and 9s and so that we can say that our diabetes management is a success. On second thoughts, I'll low carb and keep my eyesight.

 

[novorapidboi26]

It was clear what DAFNE was for me at the beginning.............

The tools that would allow me to methodically evaluate my insulin doses and change them accordingly, that is all it is........there's some other useful information like sick day rules, hypo treatments etc..........

that's it.........

attending a 5 day course will not bring your HbA1c in to the recommended targets, that achievement is always a personal one, through investigation of your own personal preferences......

I don't know anyone that has attended DAFNE say that they were promised a lower HbA1c..........

If anyone comes away from DAFNE thinking that they can eat what they like and will have a lower HbA1c has came up with that eventuality own their own.......

DAFNE is life changing for a lot of people across the world...........any movement forward in education is better than nothing....

 

[noblehead]

That is a great reply Novorapidboi, it's like the old saying: ''You can take a horse to water but you can't make it drink.''

It's how people use the tools that they've learnt that makes the difference, if you take the type1's on this forum there's members who eat as little as 30g a day to those who consume up to 300g, most of us have good control so what makes us different?......one answer we are all pro-active in our diabetes management, the same can be said for other members on other forums who have good diabetes control and Hba1c's.

 

[SamJB]

DAFNE is being marketed as a success. Carb counting is touted as an effective way to control BGs. But look at the evidence that they have for this, HbA1c results in the 7s/8s/9s. Which means that no one that participated in the studies used DAFNE's "tools" effectively. You did, well done. Hardly anyone else did.

If you want to measure success, by "slight improvement in BGs, but you'll probably get complications" then fine, fill your boots with DAFNE. I'd measure success as "risk of complications at unity with the non-diabetic population", which is why DAFNE fails.