Outrage! DAFNE after 1 year

[noblehead]

In my experience, the DAFNE instructors don't have the requisite teaching experience. They may have the requisite knowledge but can they impart it? Do they get sufficient training or are they expected to deliver DAFNE as an add-on? If so, do they feel put-upon and ill-prepared? No teacher in our secondary schools would be expected to succeed with the conditions currently undermining the DAFNE classes. It's got to be a whole lot better, come on!!!

The DSN are trained on running a course, we had a one on our course who was being supervised by a senior DSN who had run these courses for years, I'm sure if a DSN/Dietitian didn't make the grade they wouldn't be allowed to teach on DAFNE course.

 

[lizdeluz]

The DSN are trained on running a course, we had a one on our course who was being supervised by a senior DSN who had run these courses for years, I'm sure if a DSN/Dietitian didn't make the grade they wouldn't be allowed to teach on DAFNE course.

Yes, my experience is no doubt out of date. I gave up on DAFNE a long time ago now, probably 7-8 years ago: (I'm not saying it didn't help me, it did) and have self-directed my learning since through the Forum, ( a big thank you!), Think like a Pancreas, dietdoctor, Bernstein etc. etc. When first diagnosed, (1985) online resources weren't an option for me, . There has been a big shift during my diabetes career from doctor telling you what and how much to inject, what and how much to eat, to greater involvement in self-care, and that's fantastic.
However, not going on my own experience (admittedly out-of-date) but on what other people on the Forum are saying, there still seems to be confusion over WHO benefits from DAFNE, and WHEN and HOW.

 

[tim2000s]

I think I've worked out that the majority of people who benefit from DAFNE are those who are getting a pump.

 

[Kelsie]

I was told the same-18months to 2 year wait. I managed to get on one within a few months of diagnosis but that was only because I told the hospital that my brother who is also type one had taught me to carb count right away therefore felt I was suitable to go on it early. I totally agree and think it's ridiculous making people wait so long! No way could I have followed a routine of say 2 units breakfast and 4 units lunch and dinner no matter what the food content-I would have had several hypos/hypers on that regime!

 

[noblehead]

Yes, my experience is no doubt out of date. I gave up on DAFNE a long time ago now, probably 7-8 years ago: (I'm not saying it didn't help me, it did) and have self-directed my learning since through the Forum, ( a big thank you!), Think like a Pancreas, dietdoctor, Bernstein etc. etc. When first diagnosed, (1985) online resources weren't an option for me, . There has been a big shift during my diabetes career from doctor telling you what and how much to inject, what and how much to eat, to greater involvement in self-care, and that's fantastic.
However, not going on my own experience (admittedly out-of-date) but on what other people on the Forum are saying, there still seems to be confusion over WHO benefits from DAFNE, and WHEN and HOW.

Totally agree lizdeluz, there was a few of us the other day saying that we wished the Worldwide Web was around when we were diagnosed.

Don't know much about the dietdoctor or Bernstein for that matter, but the book Think Like a Pancreas is fantastic, I've just read Pumping Insulin by John Walsh for the second time (in preparation in changing to a pump) and have to say that this book is up there with the best.

 

[Type1Bri]

Just got my place on DAFNE for 9th March. Was diagnosed type 1 Sept 2014 and have got hba1c down from 13.5% to 6.3% so far. Hope the course helps me to continue to improve!

 

[lizdeluz]

I think I've worked out that the majority of people who benefit from DAFNE are those who are getting a pump.

Yes, I suppose that makes sense in that, currently, getting a pump is the way forward. I'm hoping we T1s can leapfrog pumps to the next technology being researched: islet encapsulation and transplant, isn't it?

 

[tim2000s]

Yes, I suppose that makes sense in that, currently, getting a pump is the way forward. I'm hoping we T1s can leapfrog pumps to the next technology being researched: islet encapsulation and transplant, isn't it?

Suspect you'll still need DAFNE for that too...

 

[Emmotha]

What you guys are saying about the internet and books and stuff, like me I spent so much time learning for myself having very very little info from the doc. I didn't learn the medical basics until DAFNE and it's just stupid not to give T1s this at the start.
There's only So much u can read in a day.

 

[Spiker]

Therein lies my problem AndBreathe. Officially I am not diabetic. Sorry for everyone I know who I am and forget. I was thisistoodifficult.

Hi beardie / nolongerdifficult!

 

[Spiker]

Problems with running lots of DAFNE courses

• The participants need to take a week off work (or their other responsibilities). This is difficult for most people.
• Two DSNs full time, and assorted other hospital staff part time, need to also dedicate a week to running the course
• Anyone who is honeymooning is going to have a harder time learning, and be harder to teach - even if it ends up being valuable for some of them

In my area, 95% of the people doing DAFNE are doing it because they are on track for a pump. Structured education is mandatory for a pump, under NICE guidelines. DAFNE is therefore one of the bottlenecks for pumps, and so DAFNE courses are more or less monopolised by prospective pump users. Good luck getting on a DAFNE course if you don't meet the other pump criteria. Which as Signy found out, means you have to be struggling to control your HBa1c, or a young person, or losing hypo awareness.

There should be more online education - this does not have the huge costs associated with time off work and allocating lots of hospital staff. Online education can be provided to everyone at a very low marginal cost per additional patient.

And I agree with the idea of a one day 'DAFNE Basics' course for the newly diagnosed. And the idea of additional 'modules'.

 

[tim2000s]

What surprises me is how few people get pointed at BDEC.

 

[Spiker]

What surprises me is how few people get pointed at BDEC.

It's politics. The BDEC people have a long running low level feud with the DAFNE people. And the DAFNE people are locked up under various confidentiality agreements - which is a big part of the reason for the feud.

What's needed is for the NHS or DUK to sponsor BDEC, or something like it, so that it becomes approved. The problem there is that only DAFNE has an evidence base. BDEC extracts the parts of DAFNE that probably are the effective parts, but NICE (and no one else) can tell for sure, because the only evidence base is for DAFNE, exactly as it's always been run, 5 days face to face. It can be argued that if you didn't do it 5 days face to face, it wouldn't work. Hence NICE can't approve anything other than DAFNE. It's frankly mental.

 

[tim2000s]

What would be great would be if the BDEC guys in Bournemouth could follow up with the users that have done the BDEC course and ask for data... Oh well, one can only wish.

 

[Emmotha]

I still very much disagree about the honeymoon period. Never is it so critical to know how to adjust insulin up or down.

 

[Type1Bri]

It is critical when in Honeymoon to understand dose adjustments

 

[phoenix]

I agree that you need to be able to adjust according to your glucose levels because they won't stay on a neat plateau.
There is at least one simpler method that adjusts insulin but not meal composition. It isn't as good in terms of flexibility (so quality of life) or in the ability to fine tune or to have a flexible exercise routine. So there are a lot or downsides but it does work If used at the start Learning how to self adjust for differing meals, differing exercise and could come later when there is less influence from your own insulin ( carb counting though is essential from the start). http://dtc.ucsf.edu/types-of-diabet...pies/type-2-insulin-rx/sliding-scale-therapy/


The charity DUK does point people towards BDEC and also has it's own carb counting materials online.

 

[noblehead]

What would be great would be if the BDEC guys in Bournemouth could follow up with the users that have done the BDEC course and ask for data... Oh well, one can only wish.

That would be good, but if the feedback on the forum is anything to go by it does look like a worthwhile course to register with.

What surprises me is how few people get pointed at BDEC.

I'll pm Giverny and ask if she would perhaps make the BDEC course a 'sticky' in the type 1 forum, but (forum apart) it would be good if HCP's pointed their patients in the direction of BDEC when time and resources are unavailable to teach the techniques of carb counting.

@Spiker, your points are spot on in your second last post, but I believe they do a DAFNE course run over several weeks where people struggle to get a week off work, it's taught on an evening to allow those who work days to attend.

 

[Spiker]

What would be great would be if the BDEC guys in Bournemouth could follow up with the users that have done the BDEC course and ask for data... Oh well, one can only wish.

That would not solve the evidence problem because they would not have a matched control group.

 

[Spiker]

I still very much disagree about the honeymoon period. Never is it so critical to know how to adjust insulin up or down.

Well, this kind of depends on whether it is even possible to dose adjust during the honeymoon period. Not enough is known about honeymoon periods. There isn't even a complete consensus amongst medical people that they exist. DAFNE style dose adjustment, where you have a basal level and a set of ratios, assumes that the pancreas plays no role. As soon as you have an active pancreas then you have a BG-dependent insulin response. Even if the pancreas worked totally predictably, reliably, that would throw out all the DAFNE dose calculations in ways that would be somewhere between difficult and impossible to calculate. But in a honeymoon period the pancreas is malfunctioning and may be working intermittently, with variable effectiveness. And dose calculation is an uncertain enough business before you add in these variables.

If someone's pancreas response during their honeymoon period was highly consistent, changing only very slowly, it might be possible to come up with a dose calculation regime that would work during the honeymoon period. But that calculation would NOT be the same as the DAFNE regime. For example, it would probably have lower basal amounts than DAFNE, and there would be a complex relationship between carb count and insulin dose, not the simple relationship that DAFNE uses. A pancreas producing insulin will also mess around with the apparent action period of injected insulin. Basically it's a completely different problem to solve. A honeymooning T1 diabetic is probably more different from a late stage T1 diabetic than a late stage T1 diabetic is from a T2 diabetic. And T2 diabetics don't do DAFNE, for good reason.

It is good that DAFNE worked for you to manage your honeymoon period better, but in a lot of cases it would be more trouble that it's worth. A person could struggle to adjust their basal and ratios every few weeks and still get it wrong more often that they got it right.

So all told, I think the NHS is correct to advise simpler dose regimes for newly diagnosed T1 diabetics until later, when their honeymoon period is over. I just wish the NHS advised T1s at diagnosis to adopt a low carb diet. For me a low carb diet and a lowish basal dose is the best way to manage the T1 honeymoon period, and hopefully preserve it. I would bring in basal doses only as needed, titrated purely by trial and error.