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Total BS by DAFNE and goodbyes for now

Discussion in 'Type 1 Diabetes' started by NowClosed11, Aug 11, 2015.

  1. NowClosed11

    NowClosed11 Type 1 · Well-Known Member

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    Hello
    As some of u may have been aware I was told I was to go DAFNE course in two weeks time
    But my body has thought it would be a good time to have my hoonymoon time now
    So they won't let me do the course

    So- I give up- done everything bloody thing they wanted and more and just coz my stupid feckwit of a body wants to try t-cells again I have been pulled of the course and told it could 6 months before I do DAFNE now
    I will not and can not go on like this NO MORE just constant changing of the goal posts

    So I told my DNS and the diabetic team and handed em back te meter and pens
    And left .... Daft to Some but if I am making insulin why would I take it anymore
    And am not keeping to 170grm of carbs per day for another six months just coz I was on fixed rate - but as not taking anymore - who the **** cares as I dknt no more
    Maybe I can have a day where I don't feel like dead to world all time
    But....
    This is what they told me .... So far as I can see there rules are total bull. The QCC for lewisham is just a joke and the care I have had since being told has been a joke


    So te last laff is on them when they have to explain why one of there t1s is laying on a slab of marble


    Take care all good luck with it all
    I had enough of it all .... So may be back may not be ....

    Mr Blooming "fecked off and had enough of it all " grumpy
     
  2. buckley8219

    buckley8219 Type 1 · Well-Known Member

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    You'll be able to keep those beta cells abut longer if you keep taking your insulin.

    You can gain all the knowledge shared on a dafne in afternoon online.

    I believe the Bournemouth Hospital pack is even available for download.
     
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  3. buckley8219

    buckley8219 Type 1 · Well-Known Member

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    Gary Schneiders think like a pancreas book is a good start, learnt more from that than the DAFNE course.
     
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  4. azure

    azure Type 1 · Expert

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    I know it must be annoying being taken off the DAFNE course, but in the long run it'll be to your benefit as your numbers could be up and down at the moment so that'd. A&E it hard to set ratios and give advice.

    Why give back your meter and insulin? The honeymoon can cause mad figures and you shouldn't stop your insulin without your doctor's advice. I know the first year or so of diabetes is hard, but if you give up you let diabetes win.
     
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  5. Daibell

    Daibell LADA · Master

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    Hi. Why are you so worried about taking the DAFNE course? Some posters have found it dreadful (to be fair others found it useful). All of the information DAFNE gives can be found on this Forum or you can ask. I've never been on DAFNE or been offered it but my bs is well maintained and believe I know what I'm doing. Do worry about your diabetes and not DAFNE. If you need guidance come back to the forum as there is tremendous range of experience here.
     
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  6. NowClosed11

    NowClosed11 Type 1 · Well-Known Member

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    Not blooming worried about it !!!
    This is te second course that has been canceled on me and I am not willing
    To wait anymore nor am I willing to do D

    I just want to clear that up
    It's not fact of worry - it's fact I would have to stay on fixed rate of 7s -5f-5f-7f-7s
    For another six months and basicity low amounts of food and NRG

    An as such the whole fhing has got to much and am outta here
    Just wanted to clear that bit up ...
    Plus if u r reading this u can see the other reasons why
    MR BG
     
  7. Juicyj

    Juicyj Type 1 · Expert
    Retired Moderator

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    Ah bless - I can feel your frustration..

    Bournemouth has this online course: http://www.bertieonline.org.uk/

    Personally I have a responsibility to myself to manage this and prefer not to rely on anyone else, my DSN is useful when I can get hold of her but otherwise I figure every thing out for myself, ultimately I want good health and to be honest I think as far as NHS is concerned I am a tick box, so I just work it all out by myself and come here when I need support mentally, even if it's just to respond to someone else.

    Don't give into the marble slab, that's pointless, stay and fight, that's courage ;)
     
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  8. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    So are you on or were on a mixed insulin or told to stay at a fixed dose using MDI?
    If on a mixed dose then DAFNE would be no good to you at all.
     
  9. azure

    azure Type 1 · Expert

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    I've never done DAFNE either. I got some initial advice about carb counting from a dietitian along with a basic leaflet with some carb values, and then once I was on MDI I started adjusting my boluses myself. Obviously, I proceeded REALLY carefully and did lots of blood tests after meals, but it wasn't too hard to get it working and be able to be more flexible about what I ate.

    Maybe you'd find diabetes a little,less hassle if you could do that or do one of the online courses like that mentioned above, Mrbloominggrumpy?
     
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  10. tommyg2014

    tommyg2014 Type 1 · Member

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    im on dafne, but they never gave me any training, just told be how it works and sent me on my way
     
  11. xAoifex

    xAoifex Type 1 · Well-Known Member

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    No one willingly does D, we do it because we have too.
    It is clear that your relationship with your team has broken down, the only person this will harm is yourself so maybe a referral to a different hospital and a new start is what's needed?
    DAFNE will be great once you have finished honeymooning and things stabilise out.
    The honeymoon is frustrating but it wont last. Diabetes is frustrating and it will last as will the complications (and death is pretty permanent and no one will be having the last laugh because, quite frankly, corpses aren't funny).
    DAFNE is not a prerequisite for carb counting, all it does is give you the basics, everyone on DAFNE starts at 1:10 so there is no reason for you not too when you decide to take control of your condition again.
     
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  12. jgordon5

    jgordon5 · Well-Known Member

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    Thanks for that information. I'd rather download and read than go to a 5 day course. I'm counting carbs and injecting accordingly anyway but I have to convince them if I want a pump.
     
  13. jgordon5

    jgordon5 · Well-Known Member

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    It may have been a bit highhanded of the Dafne people but please don't hurt yourself because of that. I don't quite understand why they did it because you don't know when you're going to produce insulin and so you still need to count carbs and measure your BS. I used to do that, produce insulin, but I was still classed type 1 and the consultant had to explain that to my surgery.
     
  14. Type1Bri

    Type1Bri Type 1 · Well-Known Member

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    I think if you want funding for a pump the DAFNE course is a prerequiste under the NICE criteria
     
  15. jgordon5

    jgordon5 · Well-Known Member

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    Yes, I think you're right. I looked at the timetable and 5 days from 9 to 5.30 would be really difficult. I hope there are some alternative timetables.
     
  16. noblehead

    noblehead Type 1 · Guru
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    Some area's (check if yours is one) do the course over several weeks on an evening for those who work days and can't get time off.
     
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  17. Gaz-M

    Gaz-M Type 1 · Well-Known Member

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    I did mine over 5 weeks, 1 day a week but if I,m honest 5 days straight would have been better
     
  18. ButtterflyLady

    ButtterflyLady Type 2 · Well-Known Member

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    @MrBloominggrumpy I hope in a few days when you're feeling less grumpy you'll reconsider managing your diabetes and seeing a new team. I quite like your witty posts and I will miss them if you're not around this place. Do you have family that you care about? I'm sure they want you to be around for as long as possible.

    @everyone
    Re DAFNE, I think it's bizarre that they expect people to attend a course all day every day for a week. Some of us have other health issues and couldn't physically manage that. Surely it doesn't take 40 hours of tuition to learn how to manage T1 diabetes? People in NZ learn how to do that in much less time.
     
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  19. mrspuddleduck

    mrspuddleduck · Guest

    @MrBloominggrumpy, I totally get how your feeling but Welling would never be the same without you;)! Deep breath, us honeymooners (past and present) have to stick together, cos who else can understand the chaos and turmoil that a bad boy pancreas can cause?Did you really think it would be easy!!:) Sue xxx
     
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  20. ann34+

    ann34+ Type 1 · Well-Known Member

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    Agree with what others have said. Its good news that you are making insulin again, but what's wrong with continuing testing? Every day may not be the same, a few weeks ago you needed insulin, now you don't, but next month you might, and then again next week you may get a cold or mild infection and you will need more insulin, and your body may just not be making enough to cover that - how will you know? One of the reasons Type one is a different type of disease from many others is that in the end it is up to us. Seems a good idea to wait for Daphne - not sure how you could learn your ratios when you don't need insulin. (PS even if you get to not produce any insulin at all you may find there are always changes, in my experience, there are no clear rules - any Daphne course can only be a guide.)
     
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    #20 ann34+, Aug 11, 2015 at 11:42 PM
    Last edited by a moderator: Aug 11, 2015
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