DAFNE experience - the good and the bad!

ElyDave

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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


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They told me I should eat more carb and less fat.

I'm a lower weight now and fitter than when I started at university 20+ years ago.

I don't believe they are encouraging a "healthy balanced diet" based on what we are now learning about the effects of carbs on the normal population let alone the special group that we are.
 
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hale710

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They told me I should eat more carb and less fat.

I'm a lower weight now and fitter than when I started at university 20+ years ago.

I don't believe they are encouraging a "healthy balanced diet" based on what we are now learning about the effects of carbs on the normal population let alone the special group that we are.

Different hospital different hcp I suppose, but they saw my 120g a day and were fine with that.

Maybe because I'm female!


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ElyDave

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Different hospital different hcp I suppose, but they saw my 120g a day and were fine with that.

Maybe because I'm female!


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maybe because you're "special"
 

kkkk

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I'm being pushed in the direction of DAFNE as I want a pump, and despite having done a carb count test with the dietician about 6years ago when I initially looked at pumps they obviously like the idea of it ticking one of the boxes. I am not convinced I will learn much more on it, I have good HBA1cs, adjust my doses, count my carbs and am now on CGM - just a bit worried that it will slow my pump thing down if I don't go!
 

hale710

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Go and tick that box. It will do you no harm, if you don't take anything from it then that's fine. You've just jumped through their hoop and will be one step closer to a pump :)


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mo1905

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Although the benefits of carb reduction were not discussed, I was never told to increase my carb intake. DAFNE just provides the tools, use it as you wish.
 

desidiabulum

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I'm being pushed in the direction of DAFNE as I want a pump, and despite having done a carb count test with the dietician about 6years ago when I initially looked at pumps they obviously like the idea of it ticking one of the boxes. I am not convinced I will learn much more on it, I have good HBA1cs, adjust my doses, count my carbs and am now on CGM - just a bit worried that it will slow my pump thing down if I don't go!

I don't think anyone is suggesting for a second that you not go on a DAFNE course, if you get the opportunity. Clearly experiences vary, after all, and why not give the forum your feedback afterwards?
 

smidge

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Different hospital different hcp I suppose, but they saw my 120g a day and were fine with that.

Maybe because I'm female!

That's the point Hale - you eat much less than the RDA carb intake - most of the people on the course last week did not. Their 'normal' was streets away from that. The trainers were delivering from a script and simply didn't have the knowledge/authority/gumption (not sure which) to challenge that at all. In fact they compounded it by bringing in biscuits and sweets for us and saying things like 'no-one should tell you any food is not allowed'. It was completely out of control. One guy with extremely serious diabetic complications drank a can of full sugar Coke with his McDonald's meal one evening because he thought he could jab for it. If I hadn't decided to explain to him that it would be almost impossible to jab for that type of carb, the trainers would have said nothing. They only joined in because I challenged it. I seriously believe that was his 'normal' diet and DAFNE simply reinforced that. The same guy had 3 sugars in his tea - I asked the dietician to talk to him about that. Had the course contained phrases such as 'as an occasional treat' when discussing things like snacking on victoria sponge cake I wouldn't be so concerned about it, but it gave the impression that anything was on the menu at any time and just jab accordingly - and it was a very willing audience. As I said, maybe it was a one-off, but I was shocked by it.

Smidge
 
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SamJB

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That's the point Hale - you eat much less than the RDA carb intake - most of the people on the course last week did not. Their 'normal' was streets away from that. The trainers were delivering from a script and simply didn't have the knowledge/authority/gumption (not sure which) to challenge that at all. In fact they compounded it by bringing in biscuits and sweets for us and saying things like 'no-one should tell you any food is not allowed'. It was completely out of control. One guy with extremely serious diabetic complications drank a can of full sugar Coke with his McDonald's meal one evening because he thought he could jab for it. If I hadn't decided to explain to him that it would be almost impossible to jab for that type of carb, the trainers would have said nothing. They only joined in because I challenged it. I seriously believe that was his 'normal' diet and DAFNE simply reinforced that. The same guy had 3 sugars in his tea - I asked the dietician to talk to him about that. Had the course contained phrases such as 'as an occasional treat' when discussing things like snacking on victoria sponge cake I wouldn't be so concerned about it, but it gave the impression that anything was on the menu at any time and just jab accordingly - and it was a very willing audience. As I said, maybe it was a one-off, but I was shocked by it.

Smidge

I'm really shocked, Smidge. It's no wonder there's an HbA1c epidemic in this country when that's the kind **** people are being told by so-called "experts". Makes me cross.
 
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hale710

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You seem to have had a poor set of DAFNE educators. Mine discouraged fruit juice or full coke etc actively


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Unbeliever

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Information and courses for all tyoes of diabetics seem always to be based on very low expectations of improvement and geared t owards those with he worst control. Its as if a teacher only actively taught the dullest children int he class and let the others fend for themselves.
I can understand that the organisers are reluctant to frighten people wih unrealistic expecationsb ut it should be possible to encourage those with better control to aim higher and make them aware of strategies to achieve their personal goa;s.
So much seems o be geared to making people feel confortable with diabetes that the risk of complicaions as a result of long term high numbers seems o be forgotten.
As a T2 I was once give a list of 'healthy foods " which appalled me. It couldn have been healthy and shouldnt have been normal for anyone le alone diabetics.
Further iinvesigation showed that thel is had been written especially with those wih the worst control as a sort of interim measure.
Unfortunately it had foiund its way into mainstream information over a wide area.It was ,in fact ,recommending a worse diet to most people.
These things happen. It seems to me that the definiion of that word "normal" is all imporant yet there is little agreement on it.
 
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rden66

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This is why I turned down the offer of attending a DAFNE course. After reading so many negatives about it I decided I would be better educated about what I should be doing to control my diet/sugars from the good people on this forum.
Down from Hba1c of 76 to Hba1c of 46 in 3 months.
Don't think I'd of achieved that following advice on a DAFNE.

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noblehead

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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

No they didn't with me Hale, I think when I was on the course I was low(ish) carb and was eating around 90-120g a day, there was no mention that this was too low when we were discussing our previous days food and bg readings, in fact when we asked the Endo in the Q&A session about what was the minimum amount of carbs the body needs to stay healthy his reply was 130g, so there was certainly no pushing high carb diets as far as I could see as some seem to think.

As I said earlier it teaches much more than counting carbs and adjusting insulin, better to have these courses in place than none at all I say.
 

ElyDave

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This is why I turned down the offer of attending a DAFNE course. After reading so many negatives about it I decided I would be better educated about what I should be doing to control my diet/sugars from the good people on this forum.
Down from Hba1c of 76 to Hba1c of 46 in 3 months.
Don't think I'd of achieved that following advice on a DAFNE.

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That's a good reduction in HbA1C there.

I achieved a reduction to 40 without DAFNE. The only reason I attended is because it's a pre-requisite at Addenbrookes for a pump. That said, they are now being very supportive of that, and I did learn some useful stuff on DAFNE. Sick day rules came in very handy over Christmas, alcohol rules came in handy as well. Exercise, I already knew more than the DAFNE educators. Techniques not so much, but the idea of focussing on the basal first and getting that right was invaluable.
 

Scardoc

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Unbeliever:-
Information and courses for all tyoes of diabetics seem always to be based on very low expectations of improvement and geared t owards those with he worst control. Its as if a teacher only actively taught the dullest children int he class and let the others fend for themselves.
I can understand that the organisers are reluctant to frighten people wih unrealistic expecationsb ut it should be possible to encourage those with better control to aim higher and make them aware of strategies to achieve their personal goa;s.
So much seems o be geared to making people feel confortable with diabetes that the risk of complicaions as a result of long term high numbers seems o be forgotten.

I think this a very negative view and brings me back to my original point (or rant!) ref personal responsibility. In my experience I have always been given a fantastic level of support, advice and respect from my diabetes team. I don't attribute this to a postcode lottery but I think it's largely a reflection of the attitude and effort I display when it comes to keeping my diabetes under control. I can't prove that but I am certain of it from the nature of conversations and reactions I get from them. In August I had my last appointment and I saw the big diabetic chief of the hospital - first time I had spoken to him in over five years since the day I was diagnosed - he interrogated me on everything from hypo awareness, carb counting, exercise control, adjustments, driving......it was thorough. I had an answer for everything and fact and figures to back it up. His response was to suggest I only attend the hospital once a year. Now, I could see that as an attempt to reduce their numbers but I took it as a huge vote of confidence and agreed on the condition I had a HbA1c reading every 4 months for my peace of mind.

I have not seen a single bit of information on diabetes that I would consider aimed at those with the worst control. That's nonsense. The dull kids in the class will always get more attention as they need it, just as my daughter complains she gets the trouble maker sat beside her as the teacher thinks she will be a good influence. That's life.
 

desidiabulum

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Unbeliever:-

I think this a very negative view and brings me back to my original point (or rant!) ref personal responsibility. In my experience I have always been given a fantastic level of support, advice and respect from my diabetes team. I don't attribute this to a postcode lottery but I think it's largely a reflection of the attitude and effort I display when it comes to keeping my diabetes under control. I can't prove that but I am certain of it from the nature of conversations and reactions I get from them. In August I had my last appointment and I saw the big diabetic chief of the hospital - first time I had spoken to him in over five years since the day I was diagnosed - he interrogated me on everything from hypo awareness, carb counting, exercise control, adjustments, driving......it was thorough. I had an answer for everything and fact and figures to back it up. His response was to suggest I only attend the hospital once a year. Now, I could see that as an attempt to reduce their numbers but I took it as a huge vote of confidence and agreed on the condition I had a HbA1c reading every 4 months for my peace of mind.

I have not seen a single bit of information on diabetes that I would consider aimed at those with the worst control. That's nonsense. The dull kids in the class will always get more attention as they need it, just as my daughter complains she gets the trouble maker sat beside her as the teacher thinks she will be a good influence. That's life.

Scardoc -a gentle word of advice. Stop your self-congratulatory blustering for a moment and start reading about other people's grievances with an open mind. There are many people on this forum who have shown extraordinary levels of effort and determination and personal responsibility and yet have had to put up with appallingly bad advice and often hostility from HCPs, and literally bear the scars. It is splendid that you have achieved what you have -- spread the good word, encourage and advise others, but don't throw around words like 'nonsense' and 'negativity' when you don't have the slightest idea of what others have gone through.
 
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CollieBoy

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Scardoc,
I see what you mean about personal responsibility being important and like you I get on well with the upper echelons at my hospital (probably because I give info and ask questions) for those without my desire to question I can see problems with HCPs who deliver courses rather than educating (as in leading out things) In group discussions I try to lead out cases and situations to give maximum understanding.
some HCPs delivering courses such as Xpert could be replaced with a tape recorder and if you ask a not in the script question they are lost!
if the participant doesn't realise that they are doing it wrong and if subtle hints are not given then many will not "get" what improvements can be made. With the older generation in particular , a poorly phrased suggestion from their hCP metamorphoses into akin to a additional commandment from The Almighty.
 
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Daibell

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Hi Scardoc.You are one of the lucky ones who have their diabetes managed by a hospital team. Many of us are managed by a GP or nurse at the local surgery. Their skills vary greatly as posts over the years have shown. This is why the forum is so important for those have inferior local support. Both my diabetes GPs were less then helpful and wouldn't listen to me, but fortunately I now have an excellent DN who happens to have transferred from the hospital diabetes clinic and hence is very knowledgeable. As she has discovered that I am quite knowledgeable (but not impolite) she deals with me at an intelligent level which is great; we discuss my treatment and agree the way forward. If only everyone could have that level of support.
 
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Scardoc

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Scardoc -a gentle word of advice. Stop your self-congratulatory blustering for a moment and start reading about other people's grievances with an open mind. There are many people on this forum who have shown extraordinary levels of effort and determination and personal responsibility and yet have had to put up with appallingly bad advice and often hostility from HCPs, and literally bear the scars. It is splendid that you have achieved what you have -- spread the good word, encourage and advise others, but don't throw around words like 'nonsense' and 'negativity' when you don't have the slightest idea of what others have gone through.

Ok, you need to look at the section I quoted and consider the use of "nonsense" and "negativity" within that context. There's a wider discussion from the OP on the DAFNE course and what I originally posted about and came back to was personal responsibility. I expressed my views and my experience on the benefits of personal responsibility. That does not make me narrow minded or ignorant of what others have gone through.

I believe Unbeliever's (say that fast!) comments regarding the information and courses being "geared at those with the worst control" and "based on very low expectations" to be negative and nonsensical. I believe, across the entire UK, that the poor level of control amongst T1 diabetics is not down to the failings of NHS. It is largely down to the lack of personal responsibility. Now, disclaimer time, there are exceptions, of course there are, there are people who, through no fault of their own, are suffering and are suffering badly. But I believe they are vastly outnumbered by those who don't care.

If you want to take it to nth degree then you can look at social, economic and political factors and reduce the number who don't care and increase the number who are being failed. There's always that argument and it doesn't just apply to diabetes, it applies to benefits and obesity, amongst other contentious issues. Whichever issue you look at, the time and resources required to improve the failings in the system are not there - largely thanks to the people who, like in Smidges OP, go to a DAFNE course and take jam doughnuts.

Take a look at this forum. This is what virtually everyone in the country has access to these days. How many people have succeeded in gaining control over their diabetes on this forum and others like it? How many, who have been failed by the system, have learned what they haven't been taught elsewhere right here? How many people are using what they learn here to challenge others and effect change? This forum is a beacon for personal responsibility because we all signed up. No one held a gun to our heads.

For that reason we should all be full of self-congratulatory bluster.