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Outrage! DAFNE after 1 year

Despite being T1 for 39 years I'm learning so much on DUK (bit stuck in my ways lol), but the one thing I don't understand (sorry if this sounds thick) is the 'honeymoon' period people talk about? When I was diagnosed as a young child I was put on insulin straight away, in those days of course it was just a couple of insulins available and not the basal/bolus regime that we know of today. I was put on quite large doses of insulin and stayed that way for many years, until the newer insulins and basal/bolus regimes were introduced when it turned everything upside down for me.
 
Honeymoon is the term used for the period that you haven't fully stopped producing insulin. It appears to last between six months to two years, and if diagnosed as a T1 you get put on insulin anyway. During the honeymoon you may not need as much as when your beta cells are fully destroyed.
 
tim2000s said:
Honeymoon is the term used for the period that you haven't fully stopped producing insulin. It appears to last between six months to two years, and if diagnosed as a T1 you get put on insulin anyway. During the honeymoon you may not need as much as when your beta cells are fully destroyed.
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Thanks Tim
 
tim2000s said:
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.
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5 evenings in the pub with a random bunch of diabetics and a few suggested topics each evening might be just as effective. :-)
 
Spiker said:
5 evenings in the pub with a random bunch of diabetics and a few suggested topics each evening might be just as effective. :)
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A spirits table, a coke/pepsi in bottles table, a soda/tonic table, and a red wine table ought to do it:)
Unless they rename it as Dose Adjustment For Normal Drinking and then we'll have to deal with Lager, Bitter,Stout, Liqueurs and Alco-pops:***:
 
You think thats bad... ive been on the waiting list for 2 years now....
 
itconor said:
You think thats bad... ive been on the waiting list for 2 years now....
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Chase it up as that indicates that you've been lost in yhe system. 2 years is unreasonable totally!
Mind you I've never had a course in 30+ years-lol!
 
donnellysdogs said:
Chase it up as that indicates that you've been lost in yhe system. 2 years is unreasonable totally!
Mind you I've never had a course in 30+ years-lol!
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i go to the Clinic and ask about it every 3/4 months or so always get the same answer. apprently theres not many classes in northern ireland
 
I asked Diabetes UK for their thoughts on the issue raised in this thread, and what timing of DAFNE courses they support, and received the following reply:

'Dear XXXXX,
When DAFNE was first started, they focused on people who had had Type 1 for some time. Most centres will now put people forward for DAFNE after about 6 months – which is really to ensure that the honeymoon period is over and they have got used to injecting, treating hypos etc.
The reason there is a waiting period in some places is because there is still a backlog of people who may have had T1 for some time but have never had a chance to get education. Diabetes UK feels that enough courses should be being run to ensure all those who want access can have it and shouldn’t have to wait too long for it. The biggest problem actually seems to be in areas where no such courses are run (either DAFNE or a similar model). The backlog is often down to staffing and the number of such structured courses that should be run.
However, most people newly diagnosed should be getting one to one educational support for the first few weeks – and should be pointed to sources of information such as our newly diagnosed pack while they learn how to practically live with it. Because each centre will have relatively few newly diagnosed T1s, we think staff feel it is easier to do this 1-2-1 in clinic rather than running extra courses. But obviously it is vital that people get the information they need as they need it over the first few weeks to ensure they are safe. '
 
Spiker said:
Good answer.
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Oooh, I don't know - have you seen the contents of their 'newly diagnosed pack'? :nailbiting:

'Carbohydrates are the body's preferred source of energy' and 'treat hypos with 315ml lucozade' blah, blah.

Just the right info to throw the newly diagnosed into bad eating habits, which 20+ years down the line result in ...
 
Emmotha said:
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?
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Hi @Emmotha

I think (ageing, hypo-fried brain allowing) I've not read your post until now...

Emmotha said:
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...

People cannot just fumble through for a year picking up back habits and not getting control.
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Try "fumbling through" for nearly 38 years and only after listening to fellow compatriots on this forum and then reading up on their hints, etc., have I been able to regain control.

As for DAFNE (or INSIGHT) or DUK dietary and hypo treatment advice, ignore everything but the dextrose / glucotabs / five jelly babies rule - try drinking 5/8 can of coke or 6/7 of a bottle of lucozade whilst your body is screaming SUGAR SUGAR SUGAR becuase that just ain't happening - to me or just about every other hypo-ing T1D on the planet!

The whole NHS / DUK dietary and hypo-treatment advice is a web of contradictions spun by bureacrats and non-sufferers with ignorance and vested interests at heart: they feed you carbs to force you to need more meds, to roller coaster and suffer complications 20 years down the line, all the while glaring and pointing fingers of blame at you without a clue as to how the prescribed treatment is causing all the issues.

Okay, so that's not entirely true, but from my experience it's not far from reality.
 
ConradJ said:
Hi @Emmotha

I think (ageing, hypo-fried brain allowing) I've not read your post until now...



Try "fumbling through" for nearly 38 years and only after listening to fellow compatriots on this forum and then reading up on their hints, etc., have I been able to regain control.

As for DAFNE (or INSIGHT) or DUK dietary and hypo treatment advice, ignore everything but the dextrose / glucotabs / five jelly babies rule - try drinking 5/8 can of coke or 6/7 of a bottle of lucozade whilst your body is screaming SUGAR SUGAR SUGAR becuase that just ain't happening - to me or just about every other hypo-ing T1D on the planet!

The whole NHS / DUK dietary and hypo-treatment advice is a web of contradictions spun by bureacrats and non-sufferers with ignorance and vested interests at heart: they feed you carbs to force you to need more meds, to roller coaster and suffer complications 20 years down the line, all the while glaring and pointing fingers of blame at you without a clue as to how the prescribed treatment is causing all the issues.

Okay, so that's not entirely true, but from my experience it's not far from reality.
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Hi everyone, I've had diabetes for 52 years now and was only put on the DAFNE course 6 years ago. In a way I feel lucky that I was so young (4) when diagnosed, so I didn't know anything other than Diabetes. I can't imagine what it must be like for a person to be told they've got diabetes when they've had a "normal" life. It would be a good idea to have them talk to someone who's been through the same thing as themselves, just to be reassured that their life isn't over just because of Diabetes.
What the course did for me was to totally overturn everything that I'd considered "normal" to me for so long. I must admit some of the course just went straight over my head, but it gave me some tools to help live with this lifelong "illness". Diabetes is scary at times especially when there's only you to control the situation you're in. All I can say is in my experience I just take each day as it comes and I've learnt that I rule it, it doesn't rule my life.

ConradJ, yes when you have a hypo all you want is the whole packet of jellybabies never mind 5.
 
I've found it interesting to read all the criticisms about DAFNE telling people to eat what they want and inject accordingly. To me, this is a reassuring positive. I haven't been on the course yet and I was only diagnosed with T1 a month ago, but I have to admit that probably the ONLY thing that has kept me going through this stressful period of my life is the reassurance that I can eat as normal and not change my diet. Not everyone wants to move on to an ultra low-carb diet to manage their diabetes and my understanding is that, with reasonable exercise, I should not have to change what I eat and should carry on as normal - if I feel like a cookie or ice cream, I should have it and learn how to deal with the insulin dose accordingly. In my opinion it's hard enough living with T1 without having to restrict what you eat and having to take away some of life's food pleasures!
 
pinewood said:
I've found it interesting to read all the criticisms about DAFNE telling people to eat what they want and inject accordingly. To me, this is a reassuring positive. I haven't been on the course yet and I was only diagnosed with T1 a month ago, but I have to admit that probably the ONLY thing that has kept me going through this stressful period of my life is the reassurance that I can eat as normal and not change my diet. Not everyone wants to move on to an ultra low-carb diet to manage their diabetes and my understanding is that, with reasonable exercise, I should not have to change what I eat and should carry on as normal - if I feel like a cookie or ice cream, I should have it and learn how to deal with the insulin dose accordingly. In my opinion it's hard enough living with T1 without having to restrict what you eat and having to take away some of life's food pleasures!
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It all depends on how much you eat and how many carbs. If you eat too mnay carbs you will gain weight, become insulin resistant and get into an insulin spiral. I take your point but no one on insulin can eat normally if that means the typical Western diet. Yes, you don't need to ultra low-carb.
 
Yes, this advice is intended to reassure people, so that they don't get overwhelmed. It can take many years to realised that this reassuring advice isn't actually correct. It's just a way of managing our psychological state.
 
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