DAFNE experience - the good and the bad!

phoenix · Mar 21, 2014

Ten years old, study of economic outcomes suggested that it saved money. http://www.dafne.uk.com/Cost_benefits_of_delivering_DAFNE-I367.html
One difference between DAFNE and the model it was based on was that the original course was an in patient course so far more expensive.
My courses here are all in patient but there is legislation that means people who are employed have to be given leave and salary (probably not so good for self employed.) You basically get told that the follow up courses are also compulsory, everyone turned up though there were a couple who had been on a different course so there must be some flexibility.
I remember seeing a statement of rights and responsibilities for a person with diabetes who gets 100% reimbursement from the state. From memory it seems to be based on this one from the IDF. I doubt though that they withdraw 100% care for the non compliant ( they only do that if you miss your contribution payments !)
http://www.idf.org/sites/default/files/Charter-of-Rights-EN.pdf

donnellysdogs · Mar 21, 2014

That all gives me a bit of hope for NHS.. I went to appt at hospital last Sunday with a consultant for tests. I was only one out of 3 people that attended.. And 50% of pain clinic consultants appts are DNA.... So really glad to hear that DAFNE is not totally as I was beginning to think...

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SamJB · Mar 21, 2014

novorapidboi26 said:
Sam, how do you control your diabetes?

That's not including low carbing, as that is a logical way to make control easier......

Did you attend some other educational program that taught something else?

For a lot of people, cutting the carbs down all the time would impact negatively on their quality of life.........its OK to have a whole pizza as a treat from time to time.........DAFNE gives you the ability to cater for such carbs, by initially carb counting, timing, split doses etc....

what injectable regime out there gives the best long term results......?

I use Novorapid and Lantus; I low carb; I change my Lantus dose every day; I take it in the morning so that I can act on any changes immediately instead of waiting until the following evening to change it; I test before and after every meal; I give a correction dose if above 7 mmol/l two afters eating or before a meal; I exercise to keep my insulin resistance low.

Principally, avoiding foods that raise my BGs has had the greatest impact upon my diabetes.

I disagree that my quality of life has been adversely affected. Quite the opposite, in fact. Not having random, daily highs, and not suffering the consequential guilt, depression and worry of complications has substantially improved my QoL.

I do have treats. After every HbA1c I'll go out for samosas, curry, naan bread, rice, pudding, beer (lots) and chocolate. Then I get back on low carbing the next day. I'd be surprised if any diabetic could get through that carbathon unscathed, whether DAFNE trained or not!

And I've not attended DAFNE per se, but attended a series of outpatient appointments where I was taught the principles of DAFNE.

donnellysdogs · Mar 21, 2014

Good for you Samjb

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SamJB · Mar 21, 2014

Thanks

Mrs Vimes · Mar 22, 2014

Hi samjb. I take my lantus of a morning. What do you base your lantus changes on please?
Thanks, Mrs Vimes

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SamJB · Mar 22, 2014

Mrs Vimes said:
Hi samjb. I take my lantus of a morning. What do you base your lantus changes on please?
Thanks, Mrs Vimes

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Hi, I use the calculation given in Gary Scheiner's book, Think Like a Pancreas. Gary is a Type 1 and a doctor, he says that for every 1.6 mmol/l change in overnight levels, you should adjust your levels by 10% accordingly. This assumes you don't eat or inject short acting within a few hours if bedtime.

If you haven't bought the book, but it! I learned loads from it!

Mrs Vimes · Mar 22, 2014

Thanks ever so much - Will download Gary now.

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donnellysdogs · Mar 23, 2014

SamJB said:
I use Novorapid and Lantus; I low carb; I change my Lantus dose every day; I take it in the morning so that I can act on any changes immediately instead of waiting until the following evening to change it; I test before and after every meal; I give a correction dose if above 7 mmol/l two afters eating or before a meal; I exercise to keep my insulin resistance low.

Principally, avoiding foods that raise my BGs has had the greatest impact upon my diabetes.

I disagree that my quality of life has been adversely affected. Quite the opposite, in fact. Not having random, daily highs, and not suffering the consequential guilt, depression and worry of complications has substantially improved my QoL.

I do have treats. After every HbA1c I'll go out for samosas, curry, naan bread, rice, pudding, beer (lots) and chocolate. Then I get back on low carbing the next day. I'd be surprised if any diabetic could get through that carbathon unscathed, whether DAFNE trained or not!

And I've not attended DAFNE per se, but attended a series of outpatient appointments where I was taught the

Principles of DAFNE.

I think samjb has a good balance between enjoyment of treats and living and diabetes. I haven't had dafne course in 20 yeas but I do carb count abd adjust my pymp settings accordingly and have been told I am best patient....

Think like a pancreas is a great bok... Adapt to yourself though... We are all individuals....

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Dillinger · Mar 23, 2014

novorapidboi26 said:
The name of the course could be changed and may in the future, as it is constantly changing and improving......but the name in my experience hasn't given the impression you can eat when you want in whatever quantity......this is all assumption on your part.....

Again, yes low carb provides the best results but in real terms not everyone can stick to it as easily as you could/can......

Well done with HBA1C.....obviously 5.8 is better than 6.5 but is there much difference to the risk of complications.....?.....the hba1c is only a rough image of your average levels......there's a whole host of complications that are effected by fluctuating blood sugars...as opposed to average.......that's kind of veerinng topic though.....

I think accepting good or as you put it good enough blood sugars is perfectly acceptable......we could both eat the same food every day but still face different blood sugar challenges with different risks of complications....

What is your daily carb intake....?

Did you feel that you were too low as the gp suggested.....?.....what changes did you make....?

You can surely see that cutting carbs down/out isn't that easy for most despite the obvious benefits....?......hence why education such as but not limited to DAFNE is important.....

How would you deal with patients if you were responsible for advice/care....?

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Firstly, I didn't expect the Spanish Inquisition...

1. Normal eating according to DAFNE is plenty of carbohydrates, that is my problem with it.

2. Not being able to stick to low carbing is not a problem when you've committed to the cause.

3. Yes, the DCCT shows that each percentage drop in HbA1c improves you risk factors for all complications studied.

4. Well, I'm not sure of the point you are making but the arrival or not of complications is a statistical risk so some people can get lucky.

5. About 30 grams a day.

6. No, I started eating more carbs.

7. See my answer to question 2. What makes it much harder is the constant chorus of people, HCPs and otherwise, telling you not to do it.

8. I would say do Atkins induction for 2 weeks and then increase your carbs and carefully monitor your blood sugars until you find a level that works for you, by which I mean keeps your blood sugars as close to normal as you can and your HbA1c below 6%.

Best

Dillinger

novorapidboi26 · Mar 23, 2014

Lol....there was no inquisition.....just inquiry about your gp experience......

Normal eating according to my DAFNE at least was not plenty of carbs......

dAFNE teaches how to interpret you BG and adjust your insulin......that's the case for a low carb diet too isn't it......also basal adjustment......the actual food you eat isn't the main focus........

Did you feel your DAFNE forced diet recommendations, specifically carbs, down your neck...?

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Miss90 · Mar 29, 2014

I found DAFNE extremely helpful... I had no concept of carb counting despite being type 1 for 11 years !!!!!!!! I now feel SO much more confident in managing my diabetes after completing DAFNE and i'm sorry you had a bad experience as mine was fantastic

SamJB · Mar 29, 2014

That's the selling point did DAFNE, it's measured by Quality of Life and not by efficacy.

donnellysdogs · Apr 11, 2014

More diabetics are being seen BT gastro consultants according to my consultant. I think that alone is proof to me that our dietary systems are all different, and one regime doesn't suit all.

However, for those people that have never looked at the contents of the ingredients in their food and gained an understanding then dafne can prove useful. It is a basic education tool for interpretation to our individual bodies.

I've never been on dafne, never had problems adapting etc, but recognise that some persons (actually the vast majority of non-diabetics) never look at ingredients in a packet or have no idea of eating healthily. The fact dafne includes a starting point for adjusting insulin is great, but this needs to be adjusted to individual bodies afterwards and ongoing.......

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mo1905 · Apr 11, 2014

It does teach how to adjust balsa/bolus though which should cover for age or ingestion rates though. DAFNE is dumbed down and is far from perfect but it does teach that diabetes is dynamic and it encourages keeping a diary and adjusting where required.

mo1905 · Apr 11, 2014

Sorry Brian, I still don't understand why for a given meal your readings will be different every day. Not saying you're wrong, I just don't get it. What ages are we talking about ? I'm 47 and still fairly constant ?

mo1905 · Apr 11, 2014

Brian_H said:
Because the time from eating to carb absorption, for a given GI content, is variable. T1 is an "open-loop" control problem.

Non-diabetic: In a "closed-loop" control system, the control stimulus (in this case insulin) is put directly into the blood stream by the beta-cells. The wider the error (between present BG and target BG) then the more insulin is produced. Also, the stomach produces a feed-forward signal (incretin secretion) which warns the beta cells of an impending carb dump. So, if the muscles around the stomach are not working the same each time, the control systems in the non-diabetic will be able to control the BG.

However, in a T!, the control is open-loop. We inject the insulin into the fat, and we assume 1. that the insulin absorption will be the same each time and 2. that the other signals are not causing problems 3. that the stomach muscles will react in a constant way. Using these assumptions, the only way there can be an errir is if A. carb-counting is bad B. hourly variation in insulin-resistant hormones is the issue (e.g. dawn rise).

Whenever we see our HCPs, they usally point to item 1, or item A, or item B ....or a combination.

In 2008 I spent a lot of time googling "slow digestion" (or similar). The only thing I could find were a few references to "gastroparesis", and when I put "gastroparesis" into google, there were more references, but not many. Even wikipedia only had a single paragrpah.

Now, if you google "gastroparesis" there are hundreds of pages, but gastropresis is only one "lable".

Check "incretins", and check out ANS (autonomic nervous system).

What I am saying is, that HCPs and DAFNE are using models that are too simplistic, and more-or-less the diabetic gets the "blame" for poor control. If HCPs and DAFNE could come up with a less-dumbed down description, then IMO T1's would stand a better chance of success, even in the face of an open-loop control problem with several variables that are often unpredictable,

Thanks Brian but way over my head ! In simple terms, what age are you saying this occurs and why are my levels fairly consistent then ?

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donnellysdogs · Apr 11, 2014

I went from a normal digestion rate to avert slow colonic transit. When the slow colonic kicked in I needed more insulin as my levels could go really high due to the food not digesting and absorbing correctly.

However, after being on a dose adjusting course surely you are told to monitor your readings after meals and look for patterns etc?

I have never been on a dafne course, and I adjusted my pump to account for slow colonic when it occurred. This has rectified itself after 18 months since stopping jelly babies.

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donnellysdogs · Apr 11, 2014

Brian_H said:
That would be over the head for most DAFNE "tutors" IMO

Here are my answers:
1. jelly babies are high GI, but, fats also contribute to slow carb absorption. So, I would postulate (without consulting the fats and carbs on a packet of jelly-babies) that the high GI of jelly babies will actually be "variable" in some people each day, depending on BG level when eating (I reckon that high BG itself slows down the stomach and the peristalsis in the intestinal tract). For example: If one starved for say 20 hours and ran a BG of bout 4 for those 20 hours, then I reckon that jelly babies will be absorbed damned quickly. But if one ate a fried breaksfast and had had a BG of say 9 when one ate the jelly babies, then I reckon that it will take a looong time for the sugar in the jelly babies to be absorbed (for hormonal or peristaltic reasons)
2. I would suspect that along the way your BMI has gone down
3. I would suspect that along the way your body fat index has reduced
4. I would also suspect that, as well as rejecting jelly babies, your have also started to eat less other junk food

By taking corrective action, the whole digestive system has become more consistent, and a pump will absolutely help in this process (it's a win-win, you modify the diet, the pump can be used more precisely, and the digestive system will become more predictable)

Wrong.....my bmi has always been the same. My body fat.. I haven't got any!,, I'm always told I need to turn my muscle to fat!,,
I have never ate junk food as my diet.

When I went on a pump I was told I must have jelly babies as my hypo stoppers. Basal testing too had jelly. When my gastro consultant asked what had changed in my diet I thought jelly babies and replaced them with 7 dolly mixtures instead. It has taken almost 18 months for my guts to return to normal, but they have and I no longer have any problems and discharged from my gastro consultants care.

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donnellysdogs · Apr 11, 2014

I am on a pump... Now my stomach probs, which I came to master are finished again I am back to perfect control. I mastered the stomach problems to a tee as I actually listened to the noises my stomach made or didn't.... So I knew whether my levels were going to rise....

We are all individuals and dafne is a basic starting tool for everybody to use to have an insight to management of diabetes.

Diabetes should be self management in many aspects, dafne helps so e people to self manage.

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DAFNE experience - the good and the bad!

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