DAFNE experience - the good and the bad!

[hale710]

Desidiabalum - I agree entirely that there is always room for improvement and that we should strive for it.

However, my argument is that people should be grabbing the bull by the horns themselves and stop looking for all the responsibility to come from the NHS. There are two main reasons I believe this:

1. The NHS do not know everything and never will as our bodies are unique.
2. The resources simply won't be there for a second course. We have a national debt heading towards £1.5TN - the DAFNE course will be binned before it is extended.

It's already been binned in Aberdeen for lack of staff


Blogging at drivendiabetic.wordpress.com

 

[noblehead]

Ahem! Reading your earlier post noblehead wouldn't it be fair to say in response that your mind was made up before you read Smidge's post? I’m surprised that you agree with a number of her points yet still adopt a very defensive, protective posture towards DAFNE. No one is denying that it achieves some good with some diabetics. But what is wrong with correcting or improving something? How do you think any sort of improvement ever happens? If this is the one time that the NHS is giving detailed advice to diabetics, why settle for the lowest common denominator, and tell T1 diabetics that 'they can eat Mars bars all day and it is fine' (an actual quote from a DAFNE course, endlessly repeated by an experienced T1 HCP of my acquaintance, who continues to have bad control). There is no second-stage DAFNE course where people who have been enticed in by the promise of 'normal eating' can have this glossed more responsibly. For many of those taking it, the course is gospel-truth,. delivered once for all time by the all-knowing NHS. What is wrong with suggesting that this opportunity, stretching over a full 5 days, should be used more responsibly? Surely you agree with this really? I think that you do, but that is why I find the tone of your response puzzling and unnecessary. You have a balanced viewpoint on many things – why not on this?

Not at all, as I said I figured Smidges response to the course wouldn't be positive going by a post she made yesterday, I give an honest account of what she wrote and that is why I agreed with her in part but emphasised that it has turned 100's of peoples lives around on the forum who have posted to say so, nothing is perfect in life and there could be more added to the course on nutrition but like many things there's a cost value.

I don't think any diabetes educator would be telling anyone to ''eat a Mars Bars all day'' as you have suggested as that would be plain stupid and they'd be no reason for doing so.

 

[desidiabulum]

Desidiabalum - I agree entirely that there is always room for improvement and that we should strive for it.

However, my argument is that people should be grabbing the bull by the horns themselves and stop looking for all the responsibility to come from the NHS. There are two main reasons I believe this:

1. The NHS do not know everything and never will as our bodies are unique.
2. The resources simply won't be there for a second course. We have a national debt heading towards £1.5TN - the DAFNE course will be binned before it is extended.

Hi Scardoc -I agree entirely with you. I wasn't suggesting having a second course, for precisely the reasons that you give -- that is why the one course needs improving. You are exactly right that the key to effective diabetic management for all diabetics -not just insulin-dependent ones -- lies in taking independent control and responsibility, but people need proper guidance and information (and test strips!) to use that independence effectively, especially those whose personal circumstances leave them less able to assert vigorous independence in managing their health.

 

[desidiabulum]

Not at all, as I said I figured Smidges response to the course wouldn't be positive going by a post she made yesterday, I give an honest account of what she wrote and that is why I agreed with her in part but emphasised that it has turned 100's of peoples lives around on the forum who have posted to say so, nothing is perfect in life and there could be more added to the course on nutrition but like many things there's a cost value.

I don't think any diabetes educator would be telling anyone to ''eat a Mars Bars all day'' as you have suggested as that would be plain stupid and they'd be no reason for doing so.

I don't think we're in disagreement, noblehead (given how many of your posts I agree with I hope not!). I just worry that perception of low-carb attacks can sometimes breed an uncritical approach to the status quo. As I said, this was more a comment on the defensive tone of the response. Alas, the remark about eating Mars bars is indeed a direct quote, and if it was a light-hearted throw-away remark, all I can say is that the person who seized on it was an HCP with decades of experience working on intensive care wards. If she misconstrued it then so might many others.

 

[CollieBoy]

The problem, as i see it is that the course is supposed to be one for Ds who have no background knowledge.
If this is so then the delegates can not be expected to be able to do what most of the people on her DO do and "sort the wheat from the chaff". This means that a higher standard of teaching MUST be expected from the educators. Just saying "Well they got SOMETHING out of it "is not good enough IMHO.

 

[Scardoc]

Hi Scardoc -I agree entirely with you. I wasn't suggesting having a second course, for precisely the reasons that you give -- that is why the one course needs improving. You are exactly right that the key to effective diabetic management for all diabetics -not just insulin-dependent ones -- lies in taking independent control and responsibility, but people need proper guidance and information (and test strips!) to use that independence effectively, especially those whose personal circumstances leave them less able to assert vigorous independence in managing their health.

I certainly appreciate that I am able to exercise full control and am able to have test strips as required. I live in fear of the day when it will become "means tested" - which may be soon if the referendum up here returns a yes vote! Another topic however.

The more personal responsibility we see in diabetics the less of a cost it will be to the NHS - this would hopefully then free up resources for better information, more help for those that need it most and maybe even better people teaching us about it. Whilst I am, and always have been, a staunch supporter of the NHS it is, like any other industry and sometimes you can't get the staff with the resources you have or the staff you have are too stretched.

I'll give you a great example. The head diabetes guy at my hospital also works in A&E and has had enough and is taking a position elsewhere. He was fantastic too.

 

[Scardoc]

The problem, as i see it is that the course is supposed to be one for Ds who have no background knowledge.

The mission statement for DAFNE does not stipulate this and I wasn't offered it until after being diabetic for a year. I was told to get a handle on things before taking the next step.

 

[CollieBoy]

The mission statement for DAFNE does not stipulate this and I wasn't offered it until after being diabetic for a year. I was told to get a handle on things before taking the next step.

Maybe but what checks are done to check that the D has "got a handle on things" and what could be done to remedy any deficiencies

 

[hanadr]

So I spent the whole of last week on the Type 1 carb-fest AKA DAFNE. I've come away with very mixed feelings about the course.

On the one hand, most of the participants had had diabetes for most of their lives and had very poor diabetes control. For first time, they were given some information that would help them take control of their condition. For example, some didn't know what a carb was. Some were on fixed doses of bolus regardless of what they ate. None of them had the basic information that 10g carb would raise their BG by about 2 - 3 mmol and 1 unit insulin would drop it by about the same. Only one participant other than me had done any carb counting at all and yet all were on the basal/bolus regime. Most of these people really had been left to fend for themselves without much support and without the basic information and skills to even start managing their condition. The HbA1cs were dire and really did re-emphasise the appalling statistics of Type 1s failing to manage safe BG. By the end of the course, these people all knew what a carb was, what effect it had on their BG, how to estimate the carb content of their meals and how to calculate and adjust their insulin. I have no doubt that for some of them, their HbA1cs will improve as a result of the course - but the bar was so low that the course could hardly fail to bring about some sort of improvement.

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 - carb reduction. Only on the last hour of the last day did we cover healthy eating where the dietician talked us through the dreaded eatwell plate, encouraging us to cut visible fat from meat and eat plenty of starchy carbs with each meal - explaining that carbs should make up 50% of each meal. I expected the eatwell plate and the NHS high carb low-fat mantra, but I was absolutely shocked by the attitude of the course trainers to the clearly unsuitable food and portion choices being made by the participants throughout the course and by their encouragement of poor choices. For example, the trainers provided a big tin of chocolate biscuits for tea breaks and packets of mini biscuits etc as prizes. The Thursday lunch out was to a pub where the food was virtually all carb and the portions were enormous - everybody had double-figure fasting levels on Friday morning. One guy brought two packets of jam doughnuts back to the hospital for the afternoon tea break. Not once did the trainers (a nurse and a dietician) object or advise at all. Friday lunch time was a buffet containing sausage rolls, ham rolls, cakes, crisps etc etc. There was not a single mention of reducing carb portions as a means of diabetes control - just the premise that you can eat anything and jab to cover it. Some people were snacking on foods containing 30 - 40g carb and had chips with every meal. One guy had a Chinese takeaway for his tea one night consisting of large portion chowmein, egg fried rice and chips - his BG was at 17 the next morning and we discussed that he had underestimated the carb content and therefore undercalculated his insulin requirement. We worked out his meal had contained 250g carb and he should have injected 50 units whereas he only injected 32 units - not a word about the unsuitability of that meal. It truly was a carb-fest.

For me though, the worst apsect of the course was that much of the factual information given out was just plain wrong and some of the advice was ridiculous. They told us that we were not to test after meals - we should only test before meals and if our BG was in range at that time we had bolused correctly for the previous meal. We were told protein does not raise BG and requires no insulin. We were told snacks up to 10g carb require no insulin and we were given a list of suitable snacks that we would not need to jab for including a nectarine or peach, an apple, 100ml fruit juice, a yoghurt, a hobnob or two rich tea biscuits, a large rice cake or an oatcake and so on. We were told to test our basal levels by eating a carb-free lunch - this should show if our basal was holding us level (presumably they based this gem on the incorrect assumption that protein does not raise BG). We were told that we should not bolus for vegetables (except peas and a couple of other particularly carby veggies). Neither should we bolus for tomatoes, onion etc. Beans and pulses require no bolus. Baked beans should only be bolused for the sugar content of the sauce, not the beans themselves. HbA1cs should be kept between 6.5 and 7.5. A normal non-diabetic HbA1c would be about 6.5 - this was then contradicted by the consultant who came to answer questions on Thursday. The whole course was just so full of misinformation.

By the end of the course, my BG was constantly in double-figures - and those who know me know that I usually keep tight control of my BG. Luckily for me, I'm not relying on this course and this information to manage my BG, but others are. Although the course will be shown to be successful in that it will have helped reduce the double-figure HbA1cs to single figures, it will not enable 7s and 8s to reduce those to normal or near-normal HbA1cs and quite frankly, that means a greater risk of complications. All the other participants were undoubtedly happy with what they'd learnt as they went away knowing much more than when they started, and they were undoubtedly happy to be told they can eat what they like and jab to cover it, so the course will get very positive feedback. Maybe my experience of this course was a one-off, but 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.

Smidge

Shocking, but not unexpected.
Hana

 

[smidge]

Please don't take this thread down into a low-carb/anti war - it is not intended as that. There is no need to defend the DAFNE course - I readily admit that some people will have benefitted from it. If you read my post, I have made that very clear and stated that i have mixed feelings about it for that reason.

I do low-carb, but I never expected DAFNE to promote or approve of that. I did expect that it would make it clear to participants that carb-reduction and portion-control of carbs is the most powerful tool in managing diabetes and I think that every diabetic should be given that information - what they choose to do with that information is personal choice. Almost all the well-controlled Type 1s on this site eat well below the carb level recommended to non-diabetics. I know there are a few who manage to eat the recommended level of carb and keep good levels, but that is not common. This did not come over at all in the course I was on last week. I also have some sympathy with the view that people should take responsibility for their own condition, but some people's education, skills, resources or background do not make that possible for them without a significant amount of support.

Above all, I expect the information given out to be correct.

I am not suggesting that we don't need a DAFNE-like course. I am asking if the one we have is good enough or if it is just better than nothing. Personally, I think diabetics deserve better.

Smidge

 

[Scardoc]

Maybe but what checks are done to check that the D has "got a handle on things" and what could be done to remedy any deficiencies

Speaking from personal experience: I had regular contact with the diabetic nurses after diagnosis and this was gradually reduced as time passed. The emphasis was always very much on self management.

 

[Scardoc]

Almost all the well-controlled Type 1s on this site eat well below the carb level recommended to non-diabetics. I know there are a few who manage to eat the recommended level of carb and keep good levels, but that is not common.

I think it is a lot more common than you think and certainly don't believe it to be "a few". I'd also disagree that it is the "most powerful tool in managing diabetes". What about exercise?

 

[SamJB]

I think it is a lot more common than you think and certainly don't believe it to be "a few". I'd also disagree that it is the "most powerful tool in managing diabetes". What about exercise?

Most of the well controlled on here are on 100-200g per day. The GDA for carbs is around 300g per day, there aren't many people on here with that amount of carb consumption and maintain an HbA1c < 6.5%.

As Smidge said, lets not drag this down the low carb vs carb route.

 

[phoenix]

When DAFNE started dietitians were concerned about it not emphasising healthy eating and the doctors were worried that removing the pattern of regular meal times and snacks would lead to hypos.
The method had worked well in Germany, though there it was an in patient course.(less opportunity for 'unhealthy' eating?)

In the UK it has worked in that it lowers HbA1c , reduces hypos and greatly improves peoples confidence in managing their diabetes. However, It hasn't been nearly as effective in lowering glucose levels in the UK as in the Eastern European nor it seems as well as in the newly introduced DAFNE clones in places like Kuwait and Singapore.
Perhaps eating patterns in those countries are healthier than in the UK . On the other hand no-one in the UK can think that the chips, fried rice, biscuits, doughnuts and sausage rolls are part of a normal healthy diet for anyone.

It's interesting that on Smidge's course there was a session about eating healthily. That wasn't in the original curriculum. In the first incarnations there was a Q and A session with the dietitian. Maybe this dietitian emphasised healthy eating because she was concerned about the unhealthy eating habits of this group. Maybe in the UK today that is not unusual so it's become a normal part of the course.
There is though the possibility that the people in this course were experimenting with outlandish choices in what they perceive to be safe conditions It is possible that at least some of them wouldn't normally eat large quantities of these things .

Should the trainers have intervened .and said something? I suspect that is against the protocol since it would change the whole ethos of the course.

Dr S Heller is at present involved in research as to why DAFNE hasn't had the expected effects on glycemic control. It's quite possible that the course will either change or disappear.

Perhaps, there should be more emphasis on it being OK to eat certain things for a special occasion and here's the tools to dose for them but that isn't the way to eat everyday.


The problem I've encountered is that once you include healthy eating as part of the course you can then impose a certain pattern which is less flexible.
.
Here, I was taught: carb counting, dose adjustment according to results, BUT also that it was very important to stick to the prescribed healthy eating pattern ie 3 meals a day ,' balanced ' meals with prescribed amounts of carbs (50% of cals), veggies, proteins dairy and appropriate fats together with exercise .
There is no doubt it works , HbA1cs are generally good amongst the group I did the course with. I live in a rural, quite old fashioned area and people tend to follow professional advice. They already tend to eat mostly fresh foods and eat 3 meals with no snacks. When I go on refresher courses though I realise that most of them still rigidly adhere to their regimes ; and come to think of it, so do I for most meals at home It's just that they haven't gone that step further to allow for a bit more flexibility

Emphasising one way of doing things can really constrain some peoples lives because they are frightened of doing it 'wrong' . One lady has an HbA1c of 6%, fasting glucoses in the 5s so is doing fine physically. Emotionally not so well, she's now a widow and since diagnosis (nearly 10 years). she has avoided meals with family and friends because the meals won't conform to pattern. It would be rude to refuse or leave anything and she is scared stiff of adjusting her insulin for a few more or less carbs.

 

[Picci]

I agree with Smidge. I was encouraged to eat a carb free lunch to see if my back ground was working. Mmmmm everything that passes our lips contains carbohydrate!!! They promised me it was a 'full proof' way of testing my background!! My post carb free meal result was sky high. They suggested I try it again the following day to double check. The following day I 'fasted' and guess what, my bg had stayed stable well in to the late afternoon.
Nothing is free of carb, and this is a fact whether you follow a low carb or high carb way of life ( read about Bernstein's Chinese affect ).
I did however find a number of aspects useful, sick day rules and insulin while exercising. It was good to be with other type 1s, to talk openly with them, this was a first for me. I understand why they say nothing is off limits. Some of the young men were craving pie and chips and DAFNE allowed them to enjoy this treat. But yes, i think it should be emphasised, although nothing is off limits, we should also eat 'healthier' and be discouraged from the carb/fat/sugar fest.



Sent from the Diabetes Forum App

 

[Daibell]

Hi. OK I take the point that the DAFNE acronym includes the term 'normal' so I stand corrected. I guess I am influenced by two things. First on the forum over the last few weeks there have been several posters on insulin who claim to be overweight and struggling to control their sugars despite a high number of units. These posters are either having an above normal diet or they have their own view of 'normal'. Posters like these need good guidance. I guess because I came thru the 'T2' undiagnosed LADA route I struggled to maintain sugars on tablets despite very low-carbing. My diabetes GP told me to have a normal healthy diet which was pretty stupid at the time. So, perhaps I'm a bit pro low-carb but I believe 'balanced' is certainly better than 'normal'

 

[Randy L]

I'm sad to hear that a low fat, high carb diet is what's considered "normal" to DAFNE, I WAS wishing I could send a relative with T1 to the course to help her control Her BS better, but it sounds like they wouldn't teach her anything new (she does know what a carb is) and would only re-enforce bad information already given to her.









Sent from the Diabetes Forum App

 

[hale710]

They don't encourage low fat high carb. They encourage a balanced diet. Never once did they tell me to eat more carbs. They DID suggest to someone else that she should change her mid morning chocolate digestive to a rich tea. Ie moderating the carb


Blogging at drivendiabetic.wordpress.com

 

[mo1905]

I can smell a low carb "discussion" brewing


Sent from the Diabetes Forum App

 

[hale710]

I can smell a low carb "discussion" brewing


Sent from the Diabetes Forum App

Can it wait until after dinner? I want to have my pasta first


Blogging at drivendiabetic.wordpress.com