Outrage! DAFNE after 1 year

[Danny Prince]

Not sure if someone's said but it's litreally so you're out of honey moon period because you learn all your ratios on it, makes complete sense as to why they do it tbh, it's not for no reason

 

[Emmotha]

@Spiker all I can say is it worked for me. That's all the theory I need to know it could work for others.

And even if it doesn't work for everyone's honeymoon at least you are prepared for when you're out of it. I'm sorry but you don't become smarter after your honeymoon period and DAFNE is not rocket science. I'm sure people can remember it just as easily on day 50 or day 500.

How do you expect someone with fluctuating insulin production to cope without the confidence to adjust? Hypo or hyper constantly or constant phone calls to the doctor? No.
It's not as dramatically random in most ppl as you are making out either. There are general patterns which you need to adjust for

Fail to prepare - prepare to fail.

 

[Emmotha]

So all told, I think the NHS is correct to advise simpler dose regimes for newly diagnosed T1 diabetics until later, when their honeymoon period is over.

@Spiker
Yeah they put me on one at first which resulted in poor blood sugar levels and constant hypos. That would be great management for the first year. Not.
Have you never heard of the Legacy Effect?

All the NHS do at first is say "move ur insulin up or down a unit and eat 40g carbs at every meal". So they're effectively still using ratios but without the effort. Why should you live restrictively and dangerously for a year.

I've got on just fine with the DAFNE ratios. I've moved from 1:10 to 1:25 and back to 1:18. Also from 16 Lantas to 10 now 5 on low low carb.
My hba1c is 4.6. I don't hypo often (since DAFNE). People have noticed this at work too.

You're just wrong about it for honeymooners, and you're basing it on circumstantial theories, where mine is solid proof it can work!

 

[Heathenlass]

I understand it is still a common practice to start newly diagnosed Type 1's on a mix such as Novomix for the first few months /year. So it would make sense in these cases not to go on DAFNE as its not compatible with this regime . Actually I know of people to always stay on a mixed insulin, either by choice not to change to MDI , or they have not been offered a choice

I agree that something should be available at diagnosis for all, no matter what regime they re on or who form it comes in. At the very least, a comprehensive booklet containing important information .

My own feelings on DAFNE are somewhat mixed. I do see the usefulness of it but it has always irritated me about the lack of basic information that it covers not being made freely available to non DAFNE people. Because it is contracted in , there is almost a " copyright " on that information. I feel that is wrong.

It also irritated me that some of the information given was at best, broad spectrum and the possibility that wht they advise may not work for some people was not acknowledged or outright dismissed. For example, the " don't bolus for vegetables " may work for some people, but certainly doesn't work for me. Ditto the advice on pulses, and protein.

I had some real issues during the course, and on more than one occasion had to point out that the acronym was Dose Adjustment for NORMAL Eating, and that one person's normal was not the same for another. The emphasis on what to eat certainly seemed to veer towards what I would consider junk .

I think that the whole system needs reworking, possibly getting away from the very expensive contract with DAFNE and allowing each health authority to input in to and develop an education system that is across the board within the NHS. Containing all the information that should be given to Type 1's and a back up support system including availability online information as well as handouts . I know that some areas already do this with success, but they are few. Given that the NHS is cash strapped, it makes sense to develop its own system that would cut costs, reduce waiting times and give people the information that is lacking at the moment.

Signy

 

[Emmotha]

I agree the course wasn't perfect (I did a local version don't forget, based on DAFNE principles).
My debate is more that newly T1s are being old to wait in the absence of any other training / advice.

If people have to go a year without they're basically just making it up as they go along for a year which means unnecessary risks and restrictions to life :-(

 

[Heathenlass]

I agree, they would be, if they are on basal/ bolus. But with mixed insulin they are generally told when to eat ( to tie in with the insulin peaks ) and what to eat in terms of carbohydrate grams. This is a training ground of sorts, as it does introduce you to the concept of carb counting and injecting regularly. Yes, that is restrictive but it is simplified for at least the beginning. And not compatible with DAFNE .

I think that also the emotional impact of diagnosis is taken in to consideration in delaying a place on an education course. For many it is overwhelming , and increases the chances of no shows ( and financial wastage) through denial and fear . Also the places are available for over 18's only on DAFNE , which automatically excludes children, teenagers and also their parents. The situation may be different in local run courses ( and I wish there were more of these )

I'm not saying all of this is ideal, you understand, I'm playing the Devils advocate in a way, from the perspective of someone who was diagnosed long before DAFNE was even thought about, and like many other people survived the process of self education by trial and error pretty much unscathed ( to my amazement ! )

Signy

 

[Daibell]

For info, the latest Draft Dec 2014 NICE Diabetes Guidelines say T1s should be started on Basal/Bolus not mixed as the insulin regime of choice.

 

[Emmotha]

Well I think it's more scary to go it alone without any advice or training. Way more scary. You think diabetes is going to control your whole life and stop you doing loads, and it's only when u r taught how to manage it that you are set free.

I was put on mixed insulin, most people are only on that about 2-4 weeks as doctors pretty much straight away recommend basal bolus

Also I'm not saying you can't survive without the training - well done and I am glad that you did, but that's not my point. I am saying it is out there and it's ridiculous not to offer to newbies is they ask for it and feel ready for it. Perhaps you saw a doctor or a GP who guided you, perhaps you didn't. Perhaps you were children and your parents supported you, perhaps they didn't. Perhaps you had no advice expect "stab this rubber panda and eat 40g carbs at eat meal", perhaps you didn't. It doesn't matter.

My point is why deny help to people that are eager and ready to learn whilst the help is there and they need it

 

[Heathenlass]

For info, the latest Draft Dec 2014 NICE Diabetes Guidelines say T1s should be started on Basal/Bolus not mixed as the insulin regime of choice.

True, and it also says that test strips should not be restricted for Type 1's. Sadly, the NHS can be " non compliant" with NICE

As for how long people remain on mixed insulin, again, it depends on area. Certainly up here people are still started on mixed, and the decision on how long they stay on it is individual.

Signy

 

[tim2000s]

My point is why deny help to people that are eager and ready to learn whilst the help is there and they need it

I think the point being made is that you are the exception rather than the norm. Most newly diagnosed T1s aren't ready to learn. Having said that, I've spent a lot of time this evening reading the NICE and various health authority guidelines, and what comes out is that while newly diagnose diabetics are not recommended as candidates for DAFNE they can be accepted as exceptions.

On the point of mixed insulins, when diagnosed, we were given two protophane (insulin nph) shots per day and set meal sizes. When they were confident the honeymoon was over they put you on MDI. No mixed insulin involved.

I think there is a need for structured education on diagnosis, but I think the issue is how people handle it rather than anything else.

In the meantime, I must do DAFNE to get a pump. I must therefore take 5 days off work to sit in a room while I am told what I already know and practice. I will also be singled out as trouble because I will disagree with what they say in relation to food (remember that one of the key learning points of DAFNE is eat what you want when you want, which encourage poor eating behaviour in newly diagnosed diabetics as they can continue their old ways in the view that it won't affect them), and will promote a low carb diet, using myself and many others as an example. And I will spend five days being berated for this. And of course, I turn up with a Libre so clearly understand the glucose monitoring aspect.

Oh, and work won't give me five days off for this unnecessary waste of my time so I will have to take holiday to do it. And all because structured education is necessary to get a pump. ***. Are parents of children put on pumps made to attend DAFNE?

I have just sat in the office of the Consultant, DSN and dietitian and explained in minute detail how I treat myself, talking about ratios, sick days, bolussing for non-carbs, how correction doses vary by time of day and recentness of food eaten, and you're telling me I still need to do DAFNE because it needs the tick in the official box.

This is probably my biggest problem with DAFNE. One size does not fit all, especially where you already have a lot of experience. I'm sure there are small things that may be relevant, but the reason for DAFNE is really to develop a systematic approach to treating diabetes. I've been doing that for years and this feels patronising.

It's the other end of the scale from @Emmotha really. As a new diabetic it provides helpful, useful information about how to systematically manage your condition. In that case it's great. As a diabetic with poor control, who doesn't understand their condition, it's the same. As someone who has spent far too much time looking into it, doing it and is looking for a pump to increase already good control, verified by normal hba1c, it feels pointless and a waste of the space that could be given to someone who needs it.

Apologies for the rant, but this is one area that I feel there is a real mismatch.


Sent from my iPad using Tapatalk

 

[Emmotha]

I don't think I am the exception tbh. You all seem to have this preconception that newly diagnosed are too overwhelmed to learn. However, I believe you are looking at it wrong. If indeed they are overwhelmed it's more likely to be because they don't have the knowledge to manage, and after a year of self research they are ok. Why not just teach people and give them the tools to manage and then not be overwhelmed.

As for having to go on it for a pump, yeah it was similar on my DAFNE. Half people didn't want to be there as it was just a formality and the other half were long standing T1s who didn't really get the maths anyone. The only person I think it truly benefitted was me!

 

[tim2000s]

The reason I think that you are one of the exceptions is the number of people in Facebook pages and other forums who appear to have done DAFNE or a localised equivalent and still don't get it. The issue isn't that DAFNE is bad, it's that diabetes is complex to manage, and quite a lot of people (about 70%) going on Hba1c results of the population either can't cope or can't be bothered to cope. Do you think educating them earlier word make a difference?

 

[Emmotha]

No not them but that's not the issue. They wouldn't ask to go on it. It's the people that want to understand and ask to go on it that are being refused

 

[tim2000s]

No not them but that's not the issue. They wouldn't ask to go on it. It's the people that want to understand and ask to go on it that are being refused

That's a fair point, and also something that seems to be an NHS imposed limitation, not directly DAFNE. As MDI becomes the standard way to treat newly diagnosed diabetics, I have to admit that I don't understand how they are supposed to manage their diabetes with no understanding of carb counting and the amount of insulin to take a any point in time.

 

[Spiker]

@Spiker all I can say is it worked for me. That's all the theory I need to know it could work for others.

I didn't say it couldn't.

 

[Spiker]

I think the point being made is that you are the exception rather than the norm. Most newly diagnosed T1s aren't ready to learn. Having said that, I've spent a lot of time this evening reading the NICE and various health authority guidelines, and what comes out is that while newly diagnose diabetics are not recommended as candidates for DAFNE they can be accepted as exceptions.

Sounds reasonable to me.

 

[Spiker]

In the meantime, I must do DAFNE to get a pump. I must therefore take 5 days off work to sit in a room while I am told what I already know and practice. I will also be singled out as trouble because I will disagree with what they say in relation to food (remember that one of the key learning points of DAFNE is eat what you want when you want, which encourage poor eating behaviour in newly diagnosed diabetics as they can continue their old ways in the view that it won't affect them), and will promote a low carb diet, using myself and many others as an example. And I will spend five days being berated for this. And of course, I turn up with a Libre so clearly understand the glucose monitoring aspect.

Oh, and work won't give me five days off for this unnecessary waste of my time so I will have to take holiday to do it. And all because structured education is necessary to get a pump. ***. Are parents of children put on pumps made to attend DAFNE?

I have just sat in the office of the Consultant, DSN and dietitian and explained in minute detail how I treat myself, talking about ratios, sick days, bolussing for non-carbs, how correction doses vary by time of day and recentness of food eaten, and you're telling me I still need to do DAFNE because it needs the tick in the official box.

This is probably my biggest problem with DAFNE. One size does not fit all, especially where you already have a lot of experience. I'm sure there are small things that may be relevant, but the reason for DAFNE is really to develop a systematic approach to treating diabetes. I've been doing that for years and this feels patronising.

It's the other end of the scale from @Emmotha really. As a new diabetic it provides helpful, useful information about how to systematically manage your condition. In that case it's great. As a diabetic with poor control, who doesn't understand their condition, it's the same. As someone who has spent far too much time looking into it, doing it and is looking for a pump to increase already good control, verified by normal hba1c, it feels pointless and a waste of the space that could be given to someone who needs it.

Apologies for the rant, but this is one area that I feel there is a real mismatch.

Been there, and I totally agree with every point. A very accurate rant mate.

 

[tim2000s]

Been there, and I totally agree with every point. A very accurate rant mate.

@Spiker, @Emmotha, how much of the course did you feel was unnecessary? Clearly for Spiker it was all of it. But for a newly diagnosed, five days seems like a long time to learn how to do basic maths, use a set of scales to work out the amount of carbs in food that doesn't have it written on the packet and learn how to read packets.

I understand that estimating carb content from looking at a portion is harder, but that tends to come with time and experience once the basics are understood, and I'd suggest that five days is probably not really long enough either.

 

[Spiker]

I thought DAFNE was great, but because of the peer support rather than for the factual course content. The factual content could have been summarised in an 8 page handout.

 

[tim2000s]

Peer support is a very different point. Coming from a history of the only diabetic I've known for most of my life being a cousin, and discovering a pumpers in the office in the last year, the forum is the first true peer support network I've found. I always found DUK to be a bit blue rinse.