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Outrage! DAFNE after 1 year

Emmotha

Well-Known Member
Messages
1,123
Type of diabetes
Type 1
Treatment type
Insulin
Hi all,
I am feeling outraged.
I've read that people are being told they have to be diagnosed for at least a year before they can get on a DAFNE course or similar.
I feel really upset about this. I was diagnosed in June and went on my local course in October. Only there did I learn about ratios, sick days, travelling etc.
People cannot just fumble through for a year picking up back habits and not getting control.


Surely we can do something about this? What can we do?
 
It does seem like complete BS to me. First place to start is always Diabetes UK.
 
This is what I was told

Yes there is a course you can do.....but later on into your diagnosis is
best, otherwise lots of the info will be irrelevant. It's called REACCT,
so approx. 1 year on from diagnosis is best.
We'll keep it on your radar!
 
I think it is all down to money.

There is a DAFNE online website and it looks as though they were trying to raise a petition asking for structured education for all diabetics but this petition did not get many signatures and ended in 2013.

http://www.dafneonline.co.uk
 
I'm not T1, so can only make an observation on this specific, but sometimes it seems to me new diabetics get the mushroom treatment (kept in the dark, with regular doses of manure), so that when there is eventually something offered, we'll be ridiculously thrilled to receive/hear anything.

I thought it was poor for new T2s, but it's unlikely we (T2s) would do massive, permanent, harm to ourselves by deferring action for a short while. Sadly, that's a potentially lethal scenario for a T1.
 
I wonder if we could do something. It seems really unfair. I found it so so useful in the early days and my BS is so much better.
 
Having said that, given what my cousin went through in the nineties, where his family was told taught MDI without carb counting (basically adjust your bolus based on your pre meal blood test without knowing how much was needed for the meal), it seems little different...
 
Yeah I think it's because I'm still in honeymoon period but still I don't know what to do if I get sick x
 
I think it depends on your area. There is a long long waiting list here ( Northumberland) and only a few courses each year. So I think it would average out at around a year for the first opportunity to come up post diagnosis, plus there are people who have been diagnosed a long time that wish to attend as well as it being criteria to be considered for a pump.

I attended DAFNE last year despite it being many, many years since I was diagnosed. Firstly because I was hoping to be considered for a pump, and secondly, cat like, I was so curious about it and wanted to know what was on the other side of the door ( Some members may remember my grumbling about it being easier to infiltrate the Illuminati than find out DAFNE course contents!)

The DSN on the course said it could be heartbreaking, because the no show incidence for the course was so high and so many more people were desperate to attend. To run the course is frighteningly expensive, hence so few per year. On mine, eight people were due to attend, three were no shows, one dropped out after week one ( it was one day for five weeks) and another on week three. Leaving just three of us to complete.

Oh and that pump. I won't get one, apparently I am too well controlled on MDI

Signy
Ps. And those secrets ? All I'm saying is , watch out for my forthcoming book :" DAFNE - The Truth: Diabetical Adjustments For Novorapid Errors "
 
I just think it's ludicrous for people to fumble around on their own for a year without proper guidance. It's irresponsible and silly
 
I'm going to add that I did mine after 4 months and it was so incredibly useful. I learned so much and don't see how you can go a year without learning sick day rules, travel tips, ratios etc etc
 
Being well controlled is a curse isn't it
 
Emmotha said:
I just think it's ludicrous for people to fumble around on their own for a year without proper guidance. It's irresponsible and silly
Click to expand...

As said in the other thread it is, support should be there from diagnosis until the person gets their bg under control.
 
noblehead said:
As said in the other thread it is, support should be there from diagnosis until the person gets their bg under control.
Click to expand...
But it isn't. It just isn't.
I feel really upset that people cannot get the advice and support. You need to know sick day rules, how to calculate ratios, how to travel, how to look after ur feet etc etc.
 
Emmotha said:
But it isn't. It just isn't.
I feel really upset that people cannot get the advice and support. You need to know sick day rules, how to calculate ratios, how to travel, how to look after ur feet etc etc.
Click to expand...
I have had no appointments for my feet although I have been diagnosed with neuropathy in my feet and hands. I have been told there is no point as it wont get any worse. Hard to believe.
 
Emmotha said:
But it isn't. It just isn't.
I feel really upset that people cannot get the advice and support. You need to know sick day rules, how to calculate ratios, how to travel, how to look after ur feet etc etc.
Click to expand...


You would have to have a heart of stone to not feel pity for those who are struggling and don't get any support from their HCP's, I'm sure there are many, but just the same I'm sure there's many that do get the advice and support from their HCP's, you should start a poll off in the Type 1 section of the forum and see what feedback you get.
 
Sorry for ranting lol but DAFNE was a god send for me as I learned so much. Just silly things like knowing how to go on holiday. It allowed me to live.
I just can't stand the thought of people being denied this help, not knowing sick day rules for a whole year. This has happened to several ppl I've spoken to
 


Your OK Emmotha, its good to have a rant from time-to-time and get rid of some stress

We are all singing from the same hymn sheet when it comes to the level of care we should expect, like you I found the DAFNE course extremely useful, hence why I recommended it to anyone who hasn't done the course before.
 
beardie said:
I have had no appointments for my feet although I have been diagnosed with neuropathy in my feet and hands. I have been told there is no point as it wont get any worse. Hard to believe.
Click to expand...
That's outrageous. Were you seen by a neurologist? You definitely need to get a referral to a podiatrist. Supposing you got an ulcer or charcot foot because you weren't being looked after. I get an annual foot check with podiatry and I only have very mild nerve damage to feet.
 
Been seen by nobody other that 4 gps.
 
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