Outrage! DAFNE after 1 year

ConradJ

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I've seen different figures quoted in different places. Generally, for two hours after eating, up to 10 would be considered okay as long as it comes down to normal ranges before four hours are up. I've also seen 11 and 12 quoted but, personally, I like it to stay under 10.

Edit: I just spoke to my nurse, I'm calling her hourly with BG readings since I just started on the pump. She mentioned in the call that they expect BG to rise 2.8 an hour after eating, even if you have given the correct bolus. Thought I'd mention that here :)

By that thinking, the NHS is setting us all up for complications - it's not just the high HbA1c that's the cause of problems, but the erratic swings between highs and lows as well.

If you live by the law of small numbers (Berstein) and bolus according to your medicine's capability and your body's metabolic / digestive rate then there's no reason why you can't stay below 8.0 mmol two hours after eating without going hypo. This is what I've been experiencing since cutting back on the Carbs.
 
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Nyadach

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there's no reason why you can't stay below 8.0 mmol two hours after eating without going hypo. This is what I've been experiencing since cutting back on the Carbs.

Sorry, your numbers don't add up. You claim you stay below 8.0 mmol two hours after a meal yet show your HbA1c of 7.8%, which equates to an average BG of 9.8 mmol. Sorry, if you are averaging 9.8 mmol that's not a good level for anyone no matter what diet you are on.

With levels this out of control I would highly recommend that you stop complaining at people doing DAFNE and the very good training it gives, and actually go and sign up for the course as it seems you need it looking at those levels.
 
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ConradJ

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But Bernstein is a quack. He claims he invented Basal/Bolus...he didn't. He claims he invented the home BG meter...he didn't. He just keeps dreaming things up to sell books. He might on occasion say something remotely relevant, but often it's utter trash to sell books, like his current line of re-branding the Atkins diet he's selling.



Sorry, your numbers don't add up. You claim you stay below 8.0 mmol two hours after a meal yet show your HbA1c of 7.8%, which equates to an average BG of 9.8 mmol. Sorry, if you are averaging 9.8 mmol that's not a good level for anyone no matter what diet you are on.

With levels this out of control I would highly recommend that you stop complaining at people doing DAFNE and the very good training it gives, and actually go and sign up for the course as it seems you need it looking at those levels.

Oh dear, who got your groat?

If you read the detail of my last HbA1c (and other posts) you'd gauge that I've only recently been going low carb - and only since the last test.

As for "complaining at people doing DAFNE", I do no such thing - I have made several relevant and strong points that the course only teaches one elementary level of diabetes management, which considering the complexity of this condition and the many facets that can impact upon control makes the course inadequate.

As for being able to "sign up for the course", well I've asked to go on our local version ('Insight') only to be told there's no room and a long waiting list... One of the many reasons I am transferring to another NHS Trust.

As for Bernstein being a "quack", from my point of view that remains to be seen, but if what I've read so far is consistent with the remainder then I'll deign to his quackery.

Ps when and where does he claim to have invented basal/bolus and the home meter???
 
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Spiker

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Bernstein clearly does not claim to have invented the home blood glucose meter. But he did successfully lobby the manufacturers and US medical establishment, persuading them to change their policy, and supply them direct to patients, and not just to doctors.
 
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Nyadach

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By that thinking, the NHS is setting us all up for complications

For someone who hasn't done the course to say it is setting us up for complications is utterly incorrect. It's giving people the tools to deal with the condition while also not limiting their options. It's quiet frankly freedom to live a normal life without the limits being imposed by this condition. That is a good thing and frankly something all of us should have access too, and without people complaining about how bad it is and what complications it will lead to when it is actually doing the exact opposite.

As for Bernstein he claims he invented the home BG meter in his Diabetes University videos, tape 1 actually. He claimed he invented basal/bolus in 1972 as well. He's said it a few times though, and a quote from and interview he did here he repeats them: http://diabeteshealth.com/read/2013/06/05/7886/11th-qanda-with-dr--richard-bernstein/
"He invented blood sugar self-monitoring and basal/bolus insulin dosing, when he was an engineer."
Which as we all know, is utter rubbish.

As for getting them available to patients that goes back to one of the early BG meters inventors Anton Clemens, the guy who got the patent for them anyhow. The University of New York in 1978 did studies on how it affected T1's if they had access to test equipment, and from that study Ames (who Clemens worked for, and then developed from) smaller and more compact meters. Bayer actually beat them to market though using data from the same study in 1981. While these devices where able to be used at home due to the small size, and could be acquired (am sure I have one of the early ones in a cupboard somewhere complete with it's red leather handbag) they never received certification by the FDA and CDC for home use in the US till 1986 (thankfully the NHS didn't care and were allowing us to have them a long time before that!). But this was after lobbying by the meter companies, Bernstein, and others.

So was he involved, a little bit yes. Did he invent it? No not at all.
 

Spiker

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Your quote is not quoting Bernstein. If you read his book it's totally clear he doesn't claim to have invented the home blood meter.
 
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Spiker

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However it's possible he was the first diabetic to perform home blood testing, since when he started home blood testing, the meters were only available to doctors.
 
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Nyadach

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He got his misses (since she's a doc) to buy him a meter (Ames) for him to use at home yes. In his video he does claim it and actually states he "invented the home blood glucose meter". I was actually hoping when he did say it he was going to go into something about as an engineer he did this and that and shrunk an existing meter...sadly that didn't happen. He did make it portable by slapping a couple of 12v batteries to it, but think we all did that as kids in the 70's to pretty much everything to make it portable, but that's not invention.
He could of said he was possibly one of the first to use a meter at home, but he doesn't, and thereby is telling porkies.
 

coco44

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Wish my wait was just a year. I've learnt everything from this wonderful site, reading books on carb counting and lots of tears through trial and error. Diagnosed Type1 aged 55 nearly 4 years ago by admittance to hospital with DKA, My area health authority does not offer DAFNE. Have looked at the online version and it was helpful, but only really understood it because of previous book reading and asking questions and reading people's experiences on here :mad:
 
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Emmotha

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They don't offer it at all?

So, I did DAFNE, and it deffo helped me learn to carb count and dose adjust.
With these skills I have had the confidence to choose to follow Dr Bernstein. Since doing so my BG rarely peaks above 7 (and if it does it's because I've had a naughty treat).

I think a course on how to adjust doses etc but with more freedom of choice around food would be good
 
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ConradJ

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Wish my wait was just a year. I've learnt everything from this wonderful site, reading books on carb counting and lots of tears through trial and error. Diagnosed Type1 aged 55 nearly 4 years ago by admittance to hospital with DKA, My area health authority does not offer DAFNE. Have looked at the online version and it was helpful, but only really understood it because of previous book reading and asking questions and reading people's experiences on here :mad:

@coco44 you need to back to your diabetes specialist team and request access to a course - DAFNE or InSight are two common courses.

Structured Diabetes Education is a requirement of the NICE guidance and your NHS Trust MUST offer that to you; to quote from a recent paper reviewing Diabetes Care in Buckinghamshire:

"In terms of patient education models, NICE recommends that structured patient education is made available to all people with diabetes at the time of initial diagnosis and then as required on an ongoing basis, based on a formal, regular assessment of need. However, it also states that there is insufficient evidence currently available to recommend a specific type of education or provide guidance on the setting for, or frequency of, sessions. However, to achieve maximum effectiveness some principles of good practice are clear,"
 

ConradJ

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For someone who hasn't done the course to say it is setting us up for complications is utterly incorrect. It's giving people the tools to deal with the condition while also not limiting their options. It's quiet frankly freedom to live a normal life without the limits being imposed by this condition. That is a good thing and frankly something all of us should have access too, and without people complaining about how bad it is and what complications it will lead to when it is actually doing the exact opposite.

As for Bernstein he claims he invented the home BG meter in his Diabetes University videos, tape 1 actually. He claimed he invented basal/bolus in 1972 as well. He's said it a few times though, and a quote from and interview he did here he repeats them: http://diabeteshealth.com/read/2013/06/05/7886/11th-qanda-with-dr--richard-bernstein/
"He invented blood sugar self-monitoring and basal/bolus insulin dosing, when he was an engineer."
Which as we all know, is utter rubbish.

As for getting them available to patients that goes back to one of the early BG meters inventors Anton Clemens, the guy who got the patent for them anyhow. The University of New York in 1978 did studies on how it affected T1's if they had access to test equipment, and from that study Ames (who Clemens worked for, and then developed from) smaller and more compact meters. Bayer actually beat them to market though using data from the same study in 1981. While these devices where able to be used at home due to the small size, and could be acquired (am sure I have one of the early ones in a cupboard somewhere complete with it's red leather handbag) they never received certification by the FDA and CDC for home use in the US till 1986 (thankfully the NHS didn't care and were allowing us to have them a long time before that!). But this was after lobbying by the meter companies, Bernstein, and others.

So was he involved, a little bit yes. Did he invent it? No not at all.

I'm willing to forgive your anger and belligerence - is it sugar driven :hilarious:

However, to win an argument in an honest and helpful manner you should not misquote someone. My comment - "By that thinking, the NHS is setting us all up for complications" - that you quoted out of context (and therefore dishonestly) was made not in reference to DAFNE itself but the post-prandial targets being communicated to patients, such as @PepperTed mentioned.

As for Bernstein, is he a quack? Having only read 1/3rd of his book so far, in my 38 years of T1D I can honestly say that he has done more to enlighten about the interaction of insulin, etc., etc., than any health professional I've met through my diabetes 'care'. His theories, practices (as read so far) fit in well with those advocated by Gary Scheiner et al. If he's quack, then you're a fool; however, I sincerely doubt that you're a fool - you make valid points in some areas, but don't go down the road of name calling / libelling someone just because you don't happen to agree some / all of their sentiments / theories / statements...

My contention with DAFNE (and by the way, I have attended a cut-down version on 'Carb-Counting', which did enlighten me a to a variety of facts and figures concerning carb values of foods that I had long believed did not possess any carbs), is that it only covers an elementary level of education about living with Type 1 Diabetes.

As a result of such long standing programmes, HCPs and diabetics have often mislead themselves into thinking that Carb-counting and correct dose adjustment is all that is needed to gain good control when - as many online examples can testify - it is not, which then leads to the HCP 'accusation' towards the patient that they must be doing something to make it all go wrong.

In spite of making HUGE changes to the way I live with and treat my diabetes over the past 19 months, I still encounter spikes for all manner of reasons; I am finally getting tests for Coeliac, Thyroidism and will be meeting my GP today to discuss neurological tests owing to the possibility of gastroparesis (as a result of an incident last week that highlighted issues around my nervous system).

SDE needs to be comprehensive so that all-comers can learn about diabetes in the best way possible for them - Bernstein is a big advocate of 'personalised treatment plans', which the current (and past) NHS system and education does not provide.

And one final point, you said:
For someone who hasn't done the course to say it is setting us up for complications is utterly incorrect. It's giving people the tools to deal with the condition while also not limiting their options. It's quiet frankly freedom to live a normal life without the limits being imposed by this condition.".

Well, ever since comeencing our journey towards a lower-carb diet, my family's diet has been a revelation of meals and foods that we rarely ever engaged with owing to the 'convenience' (and addiction) of carbs - our plates are now full of colour, just like the world!
 
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Nyadach

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My contention with DAFNE (and by the way, I have attended a cut-down version on 'Carb-Counting', which did enlighten me a to a variety of facts and figures concerning carb values of foods that I had long believed did not possess any carbs), is that it only covers an elementary level of education about living with Type 1 Diabetes.

As a result of such long standing programmes, HCPs and diabetics have often mislead themselves into thinking that Carb-counting and correct dose adjustment is all that is needed to gain good control when - as many online examples can testify - it is not, which then leads to the HCP 'accusation' towards the patient that they must be doing something to make it all go wrong.

That is exactly why DAFNE is so brilliant. It covers food yes, but it doesn't lay down any rules on food, it just informs about how different foods effect us, and gives us all the tools to openly do whatever we wish to do with whatever foods we choose to have. It doesn't just cover food though, it covers almost everything from insulin types, ratios, infections, weather, stress, alcohol and lots of other things which is why it's a week long course.

As for colourful food I'm pretty happy with all the lovely bright colours in my fruit thanks. Had a lovely mango, with a bit of pineapple thrown in earlier. Yes they are high carb, but frankly it doesn't matter. It's just another number to be processed and worked with like everything else.
 
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mrman

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I did dafne within 6 months of diagnosis, now realise I was very lucky to have done it in that time. Personally I think it should be done straight at diagnosis going through basal testing, adjusting qa to avoid hypos/hypers but that's never going to happen. I would say I knew many of the teachings before attending the course as I did research alot on the net finding relevant links. Still havnt read any diabetic books but, do mean to get round to it one day. Ref dafne though I think it is very useful, especially to newbies, and also reassuring to not so new diagnosed to run through everything. On my particular cause there was more focus and adjusting for basal,exercise, illness than food. However I was not taught to eat what I like and just bolus for it and am shocked when I read others who have. Gi was mentioned learning how different combos affect absorbtion rates of meals and how foods like pizza act told not to have them not just bolus different for it. To me my course was very good and could be applied to any persons preferred eating. I may be just one of the lucky few with a good dsn who gives good advice and delivered the course efficiently.
 
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bellabella

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Havin been diagnosed with type 1 diabetes this year, I'm in two minds about this.
While I know for a fact that my control would be so much better and so much easier to attain having done the dafne and carb counting education, etc...
On the other hand, being diagnosed with type 1 diabetes at 25, this alone has been enough to take in. If I were to do the dafne course id like to get as much out of it as possible, and to be honest I don't feel ready to do dafne yet. Maybe others feel differently but this is just my stance on it.
I think part of it has to do with wanting to wait until the honeymoon period is over so that the carb ratios, etc will truly reflect your diabetes, and insulin requirements are obviously much less during this transient period
 
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Bebo321

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It's easy it is to find flaws in the current level of 'education' around diabetes, however I am sure that just as when Bernstein published his findings, it was done with the best intentions and put together with what was considered to be the best information available at the time. The trouble is that time, technology and science has moved on and the finances aren't available to wipe away years of dogma. What is thriving however is a community of pwd who are now sharing information and experiences through social media. Collectively this is an extremely powerful tool and voice. Bernstein challenged the entire way of thinking about diabetes - and he was just one man. Apologies that it may seem like a shameless plug :oops:, but why don't you get 'hands on' and join the pwd conference in March? http://www.gbdoc.co.uk/gbdoc/Conference_2015.html Who knows where it could lead.....
 
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lizdeluz

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@ConradJ and @Nyadach, I reckon basically you're in agreement anyway. I've hunted for a difference in opinion, can't find one.
 
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lizdeluz

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It's easy it is to find flaws in the current level of 'education' around diabetes, however I am sure that just as when Bernstein published his findings, it was done with the best intentions and put together with what was considered to be the best information available at the time. The trouble is that time, technology and science has moved on and the finances aren't available to wipe away years of dogma. What is thriving however is a community of pwd who are now sharing information and experiences through social media. Collectively this is an extremely powerful tool and voice. Bernstein challenged the entire way of thinking about diabetes - and he was just one man. Apologies that it may seem like a shameless plug :oops:, but why don't you get 'hands on' and join the pwd conference in March? http://www.gbdoc.co.uk/gbdoc/Conference_2015.html Who knows where it could lead.....

The Conference sounds interesting and innovative. I hope it works as a format. I think it will. If I lived near Nottingham, I'd be buying a ticket.
 
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Heathenlass

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The Conference sounds interesting and innovative. I hope it works as a format. I think it will. If I lived near Nottingham, I'd be buying a ticket.

Heh ! Me too ! Way too far though :( We " North of The Wall where the Wildlings Roam " lot need such a conference ourselves ;)

Signy
 
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