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DAFNE experience - the good and the bad!

Discussion in 'Diabetes Discussions' started by smidge, Jan 26, 2014.

  1. smidge

    smidge LADA · Well-Known Member

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    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
     
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  2. mo1905

    mo1905 Type 1 · BANNED

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    Wise words Smidge and fully agree with your comments. I attended DAFNE in Dec 2013 and I learned very little to be honest. However, I put that down to being a member of this forum and thus learned so much prior. A lot of the info is outdated but I would still advise attending. Best bit for me was just meeting other T1's and chatting freely ! I also discovered that many diabetics have no clue how to manage their condition.


    Sent from the Diabetes Forum App
     
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  3. FatGenes999

    FatGenes999 Type 2 · Well-Known Member

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    :banghead::banghead::banghead::banghead:

    Sorry to hear that your UK health-care system isn't properly teaching Diabetes patients how they can help lower their BG.through diet.
    Teaching them to rely on the jab for this is cruel.

    I really don't think we are doing much better here in the States, and now with Obamacare, it might get even worse. The whole mind-set among the Western world's general population has always been to rely on drugs for everything.

    What seems to be the deciding factor is the interest the people themselves take in taking full responsibility for their health. I hope that both the medical establishment, as well as the alternative health-care practitioners, begin to more aggressively advocate for patient self-care.
     
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  4. ElyDave

    ElyDave Type 1 · Well-Known Member

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    Mo got in ahead of me, we attended the same course.

    I share a lot of your frustrations of the whole DAFNE aproach, which basically comes down to their definition of normal eating, which appears to be pretty much eat as much **** as you like as long as you take a big enough dose of insulin to cover it.

    The whole understanding of high/low GI, complex carbs, beans, pulses, lentils was appalling as was the discussion on fats. No concept of good/bad fats. I ended up with one of the highest cholesterol readings in the group, but the consultant said my numbers were perfect based on the ratio of good:bad and the level of bad. I eat a fairly low carb diet with moderate fat and protein.

    I think the thing that really annoyed me most was the refusal to accept, or even discuss any alternative approaches and to consider that they might be equally effective or better.

    As MO said, best part was talking to other T1s, and with the follow up earlier this month it was god to see that one of the attendees has got better control of his sugars - still not good by my standards but better.

    For me overall this is simply a tick in the box for my discussion on a pump with a consultant this afternoon where I'll be showing him all of my exercise induced hypos and near hypos, and the excess carbs needed to be ingested as a result.
     
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  5. Engineer88

    Engineer88 Type 1 · Well-Known Member

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    I had a similar experience but I'm very lucky my dietitian is very good and listens to what I've said regarding low carb :D I think seeing me with carbs vs without BG wise was point proven. also I stressed my HBA1c drop post DAFNE was related to low carbing which has gone back up a tiny bit since.

    Looking forward to getting my new CGM today to get things under proper control again :D
     
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  6. noblehead

    noblehead Type 1 · Guru
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    No I do agree Smidge that DAFNE isn't perfect by any means but you've highlighted quite clearly how your fellow attendees have gained a greater understanding of their diabetes and what effect food has on their bg and how to adjust to prevent this,if this was the only outcome from your course last week than I would have to say it was an overwhelming success for those (with the exception of you) who attended the course, why they didn't know this in the first place could be down to lack of information from their HCP's amongst other things.

    The 'normal eating' aspect of DAFNE to me implies that no food is out of the question, however does this imply that you should eat cakes and sweets everyday as part of a healthy balanced diet........ no it doesn't and I think page 3 or 5 of the handbook clearly states that healthy eating is an individual choice, however bringing in sweets and cakes sets a bad example and I wholeheartedly agree with you on this point.

    The not testing bg between meals is a contentious issue and I did bring this up myself when I did my course, we can only know what effect food has on our postprandial bg by testing. The not counting vegetables and such is also wrong too and it all needs to be calculated into the injection dose as do the carbs on the plate, for a 10g snack between meals I would need to inject otherwise my pre-prandial bg would be higher than I'd want it to be. Also not accounting for protein is a mistake, most people will know who have tried to low-carb or occasionally have a no-carb meal will testify that protein and fat raise bg and insulin needs to be taken, this is why when anyone asks on the forum about eating during a basal fasting test I always say to go without food.

    As for the others eating those pesky potatoes and Chinese food, well I can't say too much as I eat carbs with every meal and eat potatoes, rice, pasta, bread and breakfast cereal (porridge) as part of a healthy diet and wouldn't have it any other way tbh, I really love carbs in my diet and enjoy the fact that I can still eat these foods in moderation and dose adjust and still have good bg control, over the Christmas period I had 2 Chinese takeaways but probably not have one again for a couple of months.

    Overall I think the DAFNE course is very worthwhile, the 100's of positive posts we have had on the forum over the years from people who have enrolled on it and come away with a new wealth of knowledge speaks volumes. I like you Smidge had been a member on this forum for around 2 years before enrolling but learnt a great deal on the course, especially to do with Basal insulin, exercise and sick-day rules.

    I don't think this course was ever going to be for you Smidge as a very low-carber and your mind was probably made-up before you attended, but I'm sure it was good to meet and chat with other diabetics.
     
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    #6 noblehead, Jan 27, 2014 at 12:34 PM
    Last edited by a moderator: Jan 27, 2014
  7. SamJB

    SamJB Type 1 · Well-Known Member

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    Very interesting and worry post, Smidge. I guess there's two ways of looking at DAFNE.

    1. It improves the control of the people in the group who are badly controlled.
    2. It doesn't bring people's HbA1c into the range where their risk of complications is at unity with the non-diabetic population.

    The misinformation in there is staggering and it's a disgrace that such rubbish is taught to people (basal test for non-carb meals, don't count carbs in veg etc). I wholeheartedly agree that education is the route to a good HbA1c, but the DAFNE course is not up to scratch; it doesn't bring peoples' HbA1c below 6.5% and gives out misinformation. It doesn't deliver efficacy and if it doesn't deliver efficacy then it's not good enough. We should definitely have a DAFNE-like course, but the content needs to be drastically improved.

    Edit: improved formatting.
     
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    #7 SamJB, Jan 27, 2014 at 1:28 PM
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  8. Scardoc

    Scardoc · Well-Known Member

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    Personal Responsibility.
    Two words that few people in this country seem to like being spoken at the same time but why do we keep forgetting about it?

    There is no one size fits all solution and that is why personal responsibility is so important. If people go into these courses so ignorant, not even knowing what a carb is, and come out knowing that little bit more, then fair enough. If they lower their HbA1c’s from double figures to singles figures, then fair enough. However, whose responsibility is it to know what a healthy balanced meal is? It is the individuals. There’s no excuse for an adult in this country not to know what constitutes a healthy diet. Whether an apple or a mars bar is better for them. Whether they should eat vegetables or not. There’s simply no excuse. The guy who brought two jam doughnuts should damn well know better than that when he’s diabetic!! If I was the nurse or dietician I would probably just think to myself “what effin chance have we got”.

    I have been in a carb counting course and heard a man telling the nurse he’s “down to two bottles of lemonade a night” and is trying to cut it out. I’ve been around enough to know he was telling her what she wanted to hear. We have to face it, some people don’t want to change their habits. The DAFNE course may not be 100% wonderful but at the end of the day, especially in this day and age, there’s nothing in it you can’t look up and research on your own. It’s a starting point. I did the course five years ago and it gave me a starting point to count carbs. Since then I have put the work in to educate myself about my body and my reactions to different food. I have never counted the carbs in proteins or vegetables. I won’t take any insulin for snacks under 10gms. My diet consists of more than 50% carbs on the majority of days. Their advice is not ridiculous.

    The way I see it, the advice you get from the Government is tailored for the majority of the population and rightly so, T1’s make up just 0.6% of the UK. You can’t just look at the food breakdown either, you need to factor in exercise, alcohol, smoking etc etc. Whatever you think of the DAFNE course it’s trying and if everyone who went on the course was trying too then wouldn’t it be a happy clappy World to live in.

    Smidge, you are not relying on the course and for that I salute you! I would, however, question why your BG were “constantly in double figures”? Due to the course?

    NO ONE should rely on it but they should take from it and use it to help themselves. They should also be helping themselves long before they go on it. The stats for T1’s are appalling and I’ve argued for many years now that it is largely down to a lack of personal responsibility. Not many people will accept that or like it being said but it’s rife across our society.
     
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  9. hale710

    hale710 Type 1 · Well-Known Member

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    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.

    They didn't show the healthy eating plate to us once. DAFNE isn't there to pass judgement on what people eat, it's to facilitate "normal" eating. A low carb diet isn't normal for most of the nation.

    You have what works for you. You went, you ticked that box, you met some other diabetics. It's up to you whether you use their tools or not, they can't force you


    Blogging at drivendiabetic.wordpress.com
     
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  10. Robert 2170

    Robert 2170 Type 1 · Well-Known Member

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  11. Robert 2170

    Robert 2170 Type 1 · Well-Known Member

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    We're in the country did you do the course I am doing it in march in Glasgow please don't say Glasgow lol


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  12. nigelho

    nigelho Type 1 · Well-Known Member

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    Hi smidge, I completed the DAFNE course at Addenbrookes in September 2013 and although I may not have agreed everything said on the course, overall the info I gained has helped me manage my diabetes so much better. My HBA1c has improved from 8.9% to 7.6% in 3 months of attending the course. I don't understand your course saying not to test after a meal???my course told us to test 4 hours after a meal and the reasons why this is so. I now do the 4 hour testing and never do any corrections until I know that my insulin has really kicked it. When working I sometimes do a 2 hour test as it's physical work and even if it's more that 2 mmols than before the meal I wait until the 4 hour period has passed. I always use the carbs on any labels, baked beans included, otherwise I'll end up high. I still eat most things although I limit cakes etc. I try and use common sense here my food intake is concerned. To be honest I have used the DAFNE info which applies to me. I cannot get on with CPs and use the grams per carbs to work out my ratios which can vary in each meal depending on what I doing on work days or days off. I carb counted before the course but the info/insulin given to me by my ex diabetes team wasn't right for me and I had 4 years of hell. The last 5 months with my new team and different insulins and knowledge from DAFNE has certainly improved my life. I'm nearly 65 and diagnosed 5 years ago as a type 2 but ender up in hospital within 2 months and put immediately onto insulin.

    Test at least 4 hours after a meal and do your corrections if needed then I use a 1:1 CORRECTION which is more than what DAFNE say but it works for me. I personally say to everyone who's completed DAFNE use what works for you. We're all different and depending what insulins we're using and what we're doing our BSs will vary. Eat in moderation but I feel like a nice chinese meaI have it and allow enough insulin for the meal. If I mis-calculate the carbs then I correct 4 hours later. I'm trying not to let my diabetes rule me. Good luck to everyone in 2014.
     
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  13. hale710

    hale710 Type 1 · Well-Known Member

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    Well done in your improvements nigelho!

    I use grams too mostly and it works fine :)


    Blogging at drivendiabetic.wordpress.com
     
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  14. Daibell

    Daibell LADA · Master

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    Hi Hale10. I would dispute that DAFNE is there to 'facilitate normal eating'; Diabetics shouldn't/can't have a normal diet hence the trainers should not be encouraging anyone on the course to have a 'normal diet'. Anyone on DAFNE has T1, a serious condition, and whilst we all know you can pump insulin to match high carb input it is likely to cause weight gain and possible added insulin resistance. It will also cause larger blood sugar swings possibly into Hypos. Yes, a low carb diet isn't normal for most of the nation but most of the nation aren't T1s on a quite specific DAFNE course. Smidge's post implies that on at least his course the trainers were not doing the job they should have been. The fact that some of the more ignorant left more knowledgeable is no excuse for trainers who could have done their job a lot better.
     
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  15. Garr

    Garr Type 1 · Well-Known Member

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    ' Diabetics shouldn't/can't have a normal diet'
    I enjoy a normal diet and have my diabetes under good control. Why shouldn't/can't I?
     
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  16. Scardoc

    Scardoc · Well-Known Member

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    DAFNE - Dose Adjustment for Normal Eating

    Hence, DAFNE is there to facilitate normal eating. Diabetics can have a normal diet. I have a normal diet and have had for all of my adult life (where I am in control) including the last 6yrs as a T1 diabetic. Less focus is needed on two things:

    1. A "normal" diet.
    2. The people running DAFNE courses.

    And more focus on:

    1. A healthy lifestyle.
    2. The people on the course.
     
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  17. hale710

    hale710 Type 1 · Well-Known Member

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    It IS there to facilitate normal eating. Hence it's called

    Dose Adjustment For Normal Eating

    The point I make is that we should maintain a normal diet. Normal should NOT mean filling ourselves up with cake and sugar etc. I have a friend in the profession and she is a strong advocate of a healthy BALANCED diet. There's no way she'd tell a diabetic it's ok to eat cake all the time, but if it's your birthday or another special occasion. We don't have to make our lives even more miserable.

    Many people do sustain a normal diet using DAFNE and control they BG very well. I don't think telling everyone they have to low carb would work. I certainly will not reduce carbs until such a time as I cannot control my diabetes any other way. I've had diabetes almost a year. I've not had any weight gain except for the few pounds I had to gain in order to be a healthy weight. Diabetics aren't a once size fits all breed!


    Blogging at drivendiabetic.wordpress.com
     
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  18. desidiabulum

    desidiabulum · Well-Known Member

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    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?
     
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  19. noblehead

    noblehead Type 1 · Guru
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    Then what do we call a 'normal diet' Diabell?

    I think like you I eat anywhere between 150-200g of carbs but rarely more as I don't particularly care much (or miss for that matter) cakes, sweets and puddings, however nearly all my meals contain a good balance of carbs, fat and protein, to me this is as normal as you can get but it does fall below the RDA of carbs for a male adult, however apart from being on fixed doses at the start of my diabetes journey I don't think I've ever been a big carb eater (except the odd takeaway;)).

    Gaining good control is much more than about DAFNE and as with any structured education course it only gives you the foundations in which to build on, I don't think any of us type 1's on the forum would be where we are now if we didn't read, test and learn from our experiences, that is why we have a good mixture of well controlled type 1's on here who eat anything from 20g of carbs a day through to 300g.

    As I've said before and this applies to other forum where members are on top of their diabetes despite not LC, we all have one thing in common.........and that is we are proactive in our diabetes management!!!!
     
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  20. Scardoc

    Scardoc · Well-Known Member

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    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.
     
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