• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Outrage! DAFNE after 1 year

If you want my opinion the problem is that the DAFNE course takes far too long, hence the high cost and hence there isn't enough budget for it. Surely it needs a radical review so the key objectives can be covered in something like a couple of days. I had carb-counting explained to me by my superb DN in about 15 minutes in the surgery. I've never had sick days explained but it's pretty obvious what to do using the meter. Yes, the course covers other things but after a few months anyone on insulin will already have been forced to learn themselves, from this forum, or their surgery etc. I guess some people may not agree but a radical reform is needed rather than assume DAFNE should continue as is.
 
Daibell said:
If you want my opinion the problem is that the DAFNE course takes far too long, hence the high cost and hence there isn't enough budget for it. Surely it needs a radical review so the key objectives can be covered in something like a couple of days. I had carb-counting explained to me by my superb DN in about 15 minutes in the surgery. I've never had sick days explained but it's pretty obvious what to do using the meter. Yes, the course covers other things but after a few months anyone on insulin will already have been forced to learn themselves, from this forum, or their surgery etc. I guess some people may not agree but a radical reform is needed rather than assume DAFNE should continue as is.
Click to expand...

I agree actually. But at the moment it's the only thing out there and ppl can't get to it. A condensed version would be very good to cover the basics. I didn't know about correction doses or anything. Or how to adjust bolus, especially how to adjust basal properly and safely

I think some people would struggle with sick days if it happened to them shortly after diagnoses tbh

I made a lot of effort to research and learn in my 4 months before my DAFNE. But it's not as good as compared to learning from an expert and having someone go through your ratios with you.

And learning all the stuff you didn't know you needed to learn about
 
Last edited by a moderator:
robert72 said:
Seriously, if they're saying you have neuropathy then you need to be referred to a neurologist. I would be making a fuss.
Click to expand...
My arms and legs feel like they they belong to someone else. My hands and feet don't feel temperature difference. My whole skin feels no pain if slapped. doctor says don't worry. I say is it common. She says never heard of it.:eek:
 
I was told by one of my DSNs that it was too soon to go on DAFNE when I started asking about it 6 months after diagnosis. I was also told that I shouldn't try and improve my understanding of diabetes too much before I went on the course, as otherwise I wouldn't get the most out of it. So basically, to let my BG be all over the place for a year and not worry.

I then got a reserve place on a course a year after diagnosis when somebody cancelled. 2 other people did not turn up at all and another 2 only came to one session.

It made me quite angry at the time, as I wanted to be proactive about my care, and I couldn't believe people would pass up the opportunity - worse still, not turn up and prevent someone else benefitting.
 
ArtemisBow said:
I was told by one of my DSNs that it was too soon to go on DAFNE when I started asking about it 6 months after diagnosis. I was also told that I shouldn't try and improve my understanding of diabetes too much before I went on the course, as otherwise I wouldn't get the most out of it. So basically, to let my BG be all over the place for a year and not worry.

I then got a reserve place on a course a year after diagnosis when somebody cancelled. 2 other people did not turn up at all and another 2 only came to one session.

It made me quite angry at the time, as I wanted to be proactive about my care, and I couldn't believe people would pass up the opportunity - worse still, not turn up and prevent someone else benefitting.
Click to expand...
Woah that's crazy. I just cannot see the benefit in waiting, especially if they tell you not to try and learn. Why not just send people straight on it.

My diabetes doctor told me about "the legacy affect" where if u have good control in first 2 years then you massively reduced chances of long term damage. Their knowledge of this is obv why they offer the course early in my area. Fair play to them then, I didn't realise this wasn't the case else where
 
beardie said:
My arms and legs feel like they they belong to someone else. My hands and feet don't feel temperature difference. My whole skin feels no pain if slapped. doctor says don't worry. I say is it common. She says never heard of it.:eek:
Click to expand...
How's your control?

My advice is see another doctor, see a specialist.
 
Okay, BDEC has been around for 10 years and is DAFNE online. I don't understand why people aren't pointed at this as it gives you ratios, carb counting and corrections. The only thing it doesn't give you is sick days, but based on the rest of the course, you should be able to manage thanks to corrections with the metre.

Realistically it would do no harm to have the diabetes.co.uk website run BDEC and sick day online courses that any hcp could point at.

I think the main issue is that the audience for DAFNE is made up of a wide variety of people, and there are a significant number, probably the majority, who struggle with carb counting, corrections, etc, without a lot of help. Due to the lowest common denominator approach that the NHS has to take, you end up with this kind of delay. If you pester enough in a long delay area, you may well get on sooner.

I chose BDEC over DAFNE due to DAFNE running during the day when I couldn't take time off work (which is also crazy).
 
I wAs told that in NI you must be diagnosed a year before they even add you to the waiting list for dafne and then it could be more than 6 months after that you might get on a course. I get told one thing by DSN, another by GP , different advice again from consultant. Who to believe!!? Was diagnosed T1 in August and don't fe as if I'm any further forward!
 
I can't sleep because I'm angry about all this.

I had to take time off work I was lucky as they were cool with it.

I'm now thinking I must be lucky to have my clinic.

I think the confusion is each branch probably thinks the other has given u the basic advice. Hospital > DN > Dr > GP.

In reality I can say for sure I got off to a good start but having the course so early was great

Who can we write to?
 
could part of the decision be because newly diagnosed T1s have a honeymoon period or could be LADA and therefore it can be very difficult to work out accurate dosage and ratios and that it can take up to a year before things can be read properly? I don't know, I was diagnosed in 1985 and DAFNE wasn't around then - in fact I only got a place on it in 2014, a full 29 years later
 
The Minister for health.? I know what some are going to say, but it's a start ? or a daily newspaper ?

RRB
 
Alasdair said:
could part of the decision be because newly diagnosed T1s have a honeymoon period or could be LADA and therefore it can be very difficult to work out accurate dosage and ratios and that it can take up to a year before things can be read properly? I don't know, I was diagnosed in 1985 and DAFNE wasn't around then - in fact I only got a place on it in 2014, a full 29 years later
Click to expand...
I think though this makes it more important to be able work out ratios for yourself as they're constantly changing
 
Having had a chance to think about this one overnight, it's much more difficult than it first appears. Any kind of regime during honeymoon has concerns, whether MDI or twice daily mixed insulin with a more rigid food regime that is strictly carb counted, as the body is still producing insulin and it is very easy to overdose. Amounts of required food or insulin therefore change, and can do on a daily basis.

I therefore understand the restrictions put in place relating to DAFNE, however, that is no excuse for no education as to how to manage the condition in the interim period.

It is still important to understand the relationship between carbs and insulin, how important metering is, what to do on sick days and what to do in the event of high (or low) blood sugars. I know that some of these things are covered, but I get the impression this is not done well.

From what I understand, there is an expectation that recently diagnosed diabetics will be in constant and regular contact with their diabetes care team, although the reality may differ.

Coming back to the point, DAFNE very early on may not be appropriate for all diabetics. Coming back to the lowest common denominator again, many wouldn't cope with it early on, however, those who would benefit shouldn't be stopped from participating when they are ready.
 
It took me 7 years to get on a DAFNE course.It depends what hospital you go to..... some clinics dont offer it because their staff are not trained in DAFNE.
I think every DR and Nurse who treat diabetics should do the course too!!!
 
I believe there is actually a business opportunity in this if anyone wants to take it up...
 
Back
Top