Does Dafne work?

|Thanks to all the responses to my original question namely Does Dafne Work? I doubt I will have the chance to attend a proper DAFNE course in the short to medium term and in some ways I wish I had the intensive version that you have benefited from. I did wonder why my course could not provide any follow up material online and now I understand why! I like the CHO counter plus BG diary and will keep an eye on the forums for interesting topics.
IF anyone is able to refer me to other publications online or on paper to supplement my knowledge (our course covered insulin dose/CHO ratio, sick days, dose adjustment, exercise and alcohol) then I would be grateful as I am wondering if I missed something!
We also briefly covered psychological aspects of managing a chronic disease and I wondered if anyone's read anything useful on that recently? g.g. strategies to counter the guilt caused by not being a perfect diabetic!

I am responding to the basic question as to whether DAFNE works. It has for me.

I am a first year Type 1 and recently spent 6 weeks in Australia. Without DAFNE training I do not know how I would have coped with:

• the long air journeys;
• preparation for the trip and insulin care;
• having my time zones turned upside down and changed as I crossed the continent;
• eating out most days;
• hot and humid weather;
• and having a very varied activity level.

So in terms of how I see the value of DAFNE, it has provided me with an improved understanding of my condition; a rules set; a support structure; a learned ability to analyse and understand my BG patterns; and the means to correct and control BG levels independently with confidence and without my previous anxiety.

I realise that I am lucky that as a chartered engineer, the course helped me so much, in that DAFNE has placed diabetes management a level down as an essential lifestyle activity, as opposed to dominating my world.

I too saw very little change in A1c – and yes, it is quite correct that because the A1c is an average it cannot identify whether bg patterns have been relatively flat or swinging from lows to highs. Only daily monitoring and judicious testing can do that.

Interestingly,Dafne was created just before the first serious appearance of research into the effect of spikes (particularly post-meal). I think the academic trend is now moving much closer to seeing spikes as potentially significant in later complications. Obviously Dafne will evolve and I suspect this is one area that may come under review in the next few years. Certainly when I did it, post-meal readings were regarded as insignificant. I wonder if that will change.

Having said that, and perhaps surprisingly, I do think Dafne works, if you look at it for what it is. For me it is the tools to manage your individual condition. How you apply those tools depends on where you set your targets. Certainly mine do include trying to keep post-prandial spikes as low as possible.

I somewhat disagree with: "The idea of DAFNE is you DONT have to be so careful about carbs because you match your insulin too the carbs you eat. The only variables are how much background insulin and how much fast acting insulin to take, although I agree the best way is to keep testing and adjusting to get it right."

It may work for some, but for many I suspect it will cause problems. Speaking to those on some education courses, I note that some dietitians are beginning to acknowledge that there is some merit in controlling carb intake if the individual wants to do so, if for no reason other than that large intake of carbs needs large doses of insulin which is then subject to much wider margins of error than at lower doses and may lead to poorer control.

I think the headline "Eat what you want and inject for it" was certainly catchy and attracted people, but I think, in reality, most Dafne educators would be horrified if people chose to pig out on carbs and would underline that Dafne's strength is that it gives the ability to manage the level of carbs any individual feels comfortable with and gets the best bg figures with.

And I hope you will allow me to say, in answer to
"...the 'official' DAFNE people, we cannot give access to parts of the site because the information they contain is specific to their version of DAFNE. Understandably they don't want people who have not done the course to access this information, because if they follow it and have problems they could take legal action against the DAFNE people..."
that I don't actually understand this at all and never did. By contrast to this frustrating secrecy, the highly respected and innovative Bournemouth Diabetes & Endocrine Centre (BDEC) has been running an online course for some time in addition to its local face-to-face training, which has been much copied by other health regions.

Those I know who have done the online course (and some of these have done Dafne too) speak incredibly highly of it. Indeed it may even be ahead of Dafne in considering itself less a set of absolute rules and more a set of guidelines upon which better blood glucose control may be built by individuals according to their own circumstances.

Having "only" done the BDEC online course I have to concur with TerryG. I have no issues with the DAFNE organisation making sure they are legally protecting themselves but that should be easily done with a disclaimer. The secrecy aspect has always been slightly worrying however. I have certainly felt in the past that this has led to a feeling of "the privileged and the denied", at the end of the day we are all diabetic with the same needs and for those intelligent people who are willing to educate themselves, why should they be denied a simple method of managing their diabetes? At the end of the day the DAFNE principles are applicable to anyone totally dependant on insulin, regardless of whether they happen to live in an area where it is on offer, or whether they have been misdiagnosed or whatever!

Sorry I also neglected to say that there is significant research into whether or not the Hba1c is relevant. It is certainly now being very much considered (as a result of studies) that the post meal spikes have far more relevance to later complications than has been previously thought.

it is NOT about secrecy, it is about backup and support. People who attend a DAFNE course often have radical changes made to their insulin regime. These are NOT the kinds of changes that can be made after reading some stuff on a website and trying it yourself. Terry may well have tried dose adjustment before DAFNE, I did too, however most people do not and need the support the course gives them to undertake these changes. There is no question of secrecy, if you have done the course you can have access to the course materials. If you have not we have been asked not to provide this material to people and for the reasons above we do not provide access. I don't think its worrying, I think it is sensible. We want to help people, not hinder them by providing information without the support and backup to apply it. I suspect you will disagree with this, as is your absolute right to do so, however since we have made a commitment to DAFNE central NOT to allow open access to the course materials we will not break this agreement.

I agree that education is good, however any 'online' education should be treated with caution. Anyone can set up a website and give information with no control whatsoever. I have seen some truly amazing information given by seemingly legitimate sites that is just plain insane. For this reason I would treat all websites for what they are peoples opinions and NOT facts. The same is true for this site, everything in the forums is opinion and should NOT be treated as fact. We encourage everyone to contribute opinions but that is all they are.

Mark I understand and respect your position. But looking back at some of the posts here from the peeps who seemed not to have the full DAFNE they have had some education, which is terrific. I have done the BDEC online, frankly if that is all you are to be offered then I can recommend it over and over again. I suggest you check out the qualifications of Dr David Cavan, Consultant Physician and Honorary Senior Lecturer at this llink http://213.105.192.75/bdec2/staff/index.shtml who has devised the online BERTIE course and furthermore has been my mentor. If people are not able to take DAFNE then I can truly recommend this course to them - we are all intelligent people and lets face it, we can look at the internet and make our own minds up.
Before this I had to educate myself, so for the past 6 years my Hba1c has been under 5.7 not due to multiple hypos, but due to education even if self taught. Please don't dismiss the power of the internet, even though we all need to sift and ensure that our sources are bona fide.

I'm not dismissing the power of the internet, the problem is how do you know what to believe. Even 'intelligent' people can have problems with this, our natural inclination is to believe things that align with our own views even if they are incorrect. No disrespect to David Cavan but
how much research and study undermines his online course. I have a huge amount of respect for my Diabetes consultant however that doesn't mean he is always right. I will check out this online course as soon as I get the time and I agree, as I said before, that all diabetics should have access to education to allow them to make informed decisions about how to manage their diabetes. My concern is this needs to be done in co-ordination with the Diabetes care team, so that if they have problems they can get help and backup. If something goes wrong and all you have is the internet for backup you could be in big trouble. There will always be 3 differing views on what you should do and which is right ?
I also happen to believe that it is the NHS's job to use their budgets to educate Diabetics NOT make short term savings on education in exchange for long term larger costs of treatment for complications. On of the objectives of this site is to encourage PCT's to provide DAFNE
training for all Type 1's. I would also support people trying to get DESMOND training, although that is primarily not what this site is for. My worry is if people get online training they will not get access to more intense training like DAFNE.

Lets not forget also that DAFNE and similar education courses are not just training material, they are a chance for people with Type 1 (or 2 in the case of DESMOND) to meet people with the same condition. This interaction with other diabetics which rarely happens in normal life is a fantastic opportunity to share experiences, learning from each other as well as the education team on better ways for managing the condition because lets face it, diabetes is something where you never stop learning; whether it is about insulin adjustment, how different foods/activities affect BG levels, or even about dealing with complications. It is this kind of interaction which is lost in online courses, and is arguably a very important factor.

With regard to releasing the DAFNE materials on our site, they are published here to act as a refresher for people who have been on the course, who may have misplaced their handbook or would prefer to look up topics on the internet. They are not intended as a means of education, because as I mentioned above, DAFNE is so much more than reading a handbook.

I agree, Simon, that face-to-face courses are invaluable, for the reasons you mention. And while this is to be welcomed for all T1s, sadly those without access to such a course may face the choice of no education, self-education, with the perils and pitfalls you mention, or some sort of reputable structured online education. I guess which of these is considered preferable is down to personal opinion.

The sharing and questioning aspect is, in my view, absolutely key. And I see online forums such as this as an extension of the mini-network created on Dafne and similar courses, extending it from half a dozen other people to maybe hundreds. That's got to be good. Especially if the feedback helps improve Dafne's effectiveness at delivering education.

For ultimately, I see the value of the Dafne brand as the innovative delivery and promotion of education. And I see its "research and study" as about enhancing this rather than devising innovative treatment methods. In fact all the factual material used by Dafne has been available, in one form or another including the internet, for a long time, and merely - well, actually not mere at all, as it's a great achievement - brought together within the Dafne package. Which is to be applauded.

I won't comment on what has been said about BDEC and David Cavan because of the obvious legal implications.