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Not enough education on type one DB

donnellysdogs said:
So what anout us years ago that got taught 10g = 1 exchange and 1 unit etc.. And to change our food choices etc... We still had honeymoon periods... Where we had to learn to adjust our doses ...

I was so good with my care 6 months after diagnosis I was referred back to my GP care... It wasn't until pens etc came out that I asked to go back to hospital care as I knew my GP wasn't aware of all the changes.

Care nowadays has gone too much out of control with no recognition that the way you are treated when diagnosed is going to set your learning up for your understanding and life ahead. Its no wonder so many T1's are not getting hba1c results as necessary.

Rant over....makes me grateful for the care I have had even more!!

Ps.. Never seen a dietitian though..
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Yes the good old carb exchanges :)

I think the resources and treatment methods available nowadays is far beyond what we could have expected when we were diagnosed DD, but as I've previously said support should be there from the onset.
 
noblehead said:
I'm not so sure, there's many people who get good support from the onset, I know sometimes people do have to ask for that support and that is why many of us always suggest that a newly diagnosed person contacts their diabetes team when experiencing difficulties.
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Plus, a 6 week wait for your initial appointment at the clinic.
I don't think you know how little support some areas give for newly diagnosed adults (can't speak for children).
You go and see a specialist they rush you in and out. There is nothing like spending 4 or 5 full days learning the in ands outs of your health and how to live with it. It's more than just about blood control difficulties.
I would not be doing half so well without the DAFNE and I'd probably be phoning my diabetes team every day. Now I don't need to.
Why can't the DAFNE be the support and education you speak of?

Sorry for ranting but as someone who's been through it all since June I just feel strongly about this
 
I do understand and and some great points have been made on here. I personally feel that people,( whether it's health care professionals, the media, or Joe Public) don't know what it's actually like, day by day, week in week out, to have type 1 diabetes. It's not eat what you like and take an injection for it, end of.
Wouldnt it be great if it was as simple as that............. if only :arghh:

RRB
 
Emmotha said:
Plus, a 6 week wait for your initial appointment at the clinic.
I don't think you know how little support some areas give for newly diagnosed adults (can't speak for children).
You go and see a specialist they rush you in and out. There is nothing like spending 4 or 5 full days learning the in ands outs of your health and how to live with it. It's more than just about blood control difficulties.
I would not be doing half so well without the DAFNE and I'd probably be phoning my diabetes team every day. Now I don't need to.
Why can't the DAFNE be the support and education you speak of?

Sorry for ranting but as someone who's been through it all since June I just feel strongly about this
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No I get where your coming from and understand your frustration, but wind the clock back 20 years ago and there was no such courses such as DAFNE, much of what you learnt was from experience, speaking with your DSN/Consultant or reading a book.
 
noblehead said:
No I get where your coming from and understand your frustration, but wind the clock back 20 years ago and there was no such courses such as DAFNE, much of what you learnt was from experience, speaking with your DSN/Consultant or reading a book.
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Very true. I do honestly count myself lucky that all the tech is about. But if you still don't know the basics, how much use is it all? The thing is, the course is out there, people aren't turning up and there's people that need to go on it. Aargh it's all so frustrating!
 
noblehead said:
No I get where your coming from and understand your frustration, but wind the clock back 20 years ago and there was no such courses such as DAFNE, much of what you learnt was from experience, speaking with your DSN/Consultant or reading a book.
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Very true, the library was very good for info. I did have a great diabetes consultant, Dr Bell for a short time, but he left and went into research.
 
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Emmotha said:
Very true. I do honestly count myself lucky that all the tech is about. But if you still don't know the basics, how much use is it all? The thing is, the course is out there, people aren't turning up and there's people that need to go on it. Aargh it's all so frustrating!
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Except in an emergency or illness there's no excuse for not turning up on the course, it takes nothing to pick-up the phone and say you can't attend and let someone else take your place.

It's much the same with gp and clinic appointments, the cost of missed appointments is immense to the NHS which is already on its knees.
 
Robinredbreast said:
I do understand and and some great points have been made on here. I personally feel that people,( whether it's health care professionals, the media, or Joe Public) don't know what it's actually like, day by day, week in week out, to have type 1 diabetes. It's not eat what you like and take an injection for it, end of.
Wouldnt it be great if it was as simple as that............. if only :arghh:

RRB
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Yes! At the moment this is what everyone is saying to me! Oh just eat it and have a bit more insulin.....over Christmas and new year I had a bit more than normal (didn't go mad though and all low carb and worked out carb content etc) but felt rotten for couple of days after Christmas because bloods stayed elevated for a few days :(
 
Mine too were elevated over Christmas, a little bit of alcohol and a few Quality over the festive oeriod. I even made low carb chocolate truffles for Christmas day. They were okay, but teenager, her friend and my adult son, didn't like them at all :eek:
 
noblehead said:
Except in an emergency or illness there's no excuse for not turning up on the course, it takes nothing to pick-up the phone and say you can't attend and let someone else take your place.

It's much the same with gp and clinic appointments, the cost of missed appointments is immense to the NHS which is already on its knees.
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Unfortunately this is the price you pay when the service is free at the point of consumption. For all the hoohaa about the NHS, its value gets forgotten and people just expect it to be there. The result is they devalue it and simply don't bother turning up.

It should be free at the point of consumption, but if you are booked and fail to consume, it should also cost you.
 
I always turn up at my diabetes appointments, only missed the diabetes clinic, once because of illness, as I want to know what's going on, if I have any questions or moans, weight gets checked, blood pressure, urine gets tested too. So it's a must for me, thumbs up.

RRB
 
Robinredbreast said:
I always turn up at my diabetes appointments, only missed the diabetes clinic, once because of illness, as I want to know what's going on, if I have any questions or moans, weight gets checked, blood pressure, urine gets tested too. So it's a must for me, thumbs up.

RRB
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At our diabetic clinic someone was saying at our course that if you miss an appointment or don't go regularly you get kicked out then your GP has to re-refer you
 
Well, I suppose if someone is in the habit of not showing up or doesn't phone to cancel appointments ( with a genuine cancelation), then I would think this could happen.

RRB
 
Emmotha said:
At our diabetic clinic someone was saying at our course that if you miss an appointment or don't go regularly you get kicked out then your GP has to re-refer you
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This is true of the London clinics. One strike and you are out.
 
Emmotha said:
The thing is, as ur in honeymoon it is very important to know how to readjust ur basal and ratios as they change frequently. It is more than important than ever. I have had to redo mine many times and I wouldn't have really known how to properly
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Interesting. And I would have thought it was the opposite - that during the honeymoon period it is almost impossible to calculate your ratios. How do you reliably calculate a ratio or an accurate basal level, when your pancreas is still making insulin - in more or less random amounts? DAFNE doesn't explain how to do this, and I don't really think it's possible is it?

While I think there should be more education, earlier, and in particular not the total loss of contact that I and others have experienced, I can see the point of not trying to introduce full DAFNE style dose adjustment while the honeymoon period is going on and while the person is trying to get to grips with the basics.
 
Robinredbreast said:
I always turn up at my diabetes appointments, only missed the diabetes clinic, once because of illness, as I want to know what's going on, if I have any questions or moans, weight gets checked, blood pressure, urine gets tested too. So it's a must for me, thumbs up.

RRB
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Me too, trip to clinic for a red-letter day! Everyone is purposeful and supportive. I wouldn't miss it. I've always found clinics to be like that, and was shocked to read of @yingtong's experiences in '64. I was diagnosed in '85, so the regime was still old-school, but I had a peaceful 6 or so hours in clinic, quietly weeping with relief that something WAS wrong with me and WOULD be sorted out, followed by daily visits at home for a few days from a nurse who seemed to know about as much as me (not much) about diabetes. I was not unhappy, I was glad to have the means (insulin) of not feeling like death any more.
So between '64 and '85, there must have been a sea-change and a change of 'policy', a realisation that they shouldn't knock the newly-diagnosed over the head with scare-tactics. Perhaps they realised they wouldn't like it themselves, when they thought about it!:eek::(
I've been given, not one, but three Dafne courses ! - I'm a slow learner where diabetes is concerned, I think I just can't believe that such a strange illness can exist! I found the classes good, but I couldn't keep up with the other 'students'/patients. The classes were for about 12 people. I needed more individual help, particularly with programming my meter, and carb-counting, and, in the day, we didn't really get on to testing for correct bolus and basal doses, your dose was decided by your doctor!
@Emmotha, I'm not surprised you feel outraged, because there's so much still not right. I share those feelings. With the benefit of age, though (!), I look back and see that we've come a long way, and that this Forum is going to increase the speed of progress and act as a catalyst to the NHS diabetes provision. (What else can we do? We diabetics are a pretty silent bunch! Why??). There's fantastic diabetes research going on around the world, but there are still the haves and the have-nots: people with diabetes in countries and war-zones where even the most basic health care is still not available.
 
Spiker said:
Interesting. And I would have thought it was the opposite - that during the honeymoon period it is almost impossible to calculate your ratios. How do you reliably calculate a ratio or an accurate basal level, when your pancreas is still making insulin - in more or less random amounts? DAFNE doesn't explain how to do this, and I don't really think it's possible is it?

While I think there should be more education, earlier, and in particular not the total loss of contact that I and others have experienced, I can see the point of not trying to introduce full DAFNE style dose adjustment while the honeymoon period is going on and while the person is trying to get to grips with the basics.
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I'm newly diagnosed (June) in my honeymoon. I went on the DAFNE and I NEED to adjust my ratios every few weeks. Should I not understand how to do this? Should I have continued to hypo every day?
The DAFNE helped me no end so I don't see how you can say I shouldn't have gone on it. Those views are out of date, I would have been a lot worse controlled if I didn't go on it
 
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