annoyed with diabates uk

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leenevitt

leenevitt

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Relationship to Diabetes
Type 1
has anyone else tried to get support from them.... the press office has been quite good.. the regional office sent me a box of leaflets.. but s far as support or help with the wheelchair are concenrned they are useless.... really really diaspointed with them to be honest... i think its about time they stopped pencil pushing and started getting involved with us more... stop ticking boxes ... and understand what is really needed.....
sorry having a rant!!

lee
 
When I needed advice on one or two aspects of diabetes, they seemed to talk round in circles but didn't actually answer my specific question They didn't even say I don't know.
 
i am very very tempted to go the press about all this... its like asking my MP a question.. you never get n answer or they pass you to someone else who cant help... what happened to face to face contact..... i dont feel supported at all.. if i am doing this full time and dedicating my life to it.. then what about those who have full time jobs.. the system needs to change!!!
 
I've had cause to speak to the careline a couple of times when Jessica was tiny. Talk about not having a clue. I believe one person even had a child with type 1 and still was ignorant. I don't bother now. Even Balance isn't very good. I am extremely disillusioned with DUK, have been for years and lots of families are. We support JDRF who are phenomenal in everything they do.
 
i agree with u , i had to phone for various reasons over the years and never got any questions answerd just sent away with the sugesstion that i should talk to him/her etc , they certainly seem very detatched from us lot , they like to shout very loud about statistics and complications and even events (never seem to be any down here ) except your 1 lee , and u never see them reporting on the need for more pumps or sensor avalibility or the standard of care ( which i had probs with) p.s are there any support groups in the real world for us lot down here? thought u might know
 
I haven't been a member of DUK for 15 years or so now. I never found much support and can't say i miss their magazines promising the earth! Don't get me started on conspiracy theories and the government.....🙄
Bernie xx
 
Lee,
DUK are fairly useless to be honest - have you tried ringing JDRF? They are much better than DUK and have people who actually understand. Also, try ringing your local paper and telling them your predicament and I am certain they will run a piece on you - and the more people hear about your challenge the better - you may even get a kind offer of a wheelchair!:DBev
 
leenevitt said:
i am very very tempted to go the press about all this... its like asking my MP a question.. you never get n answer or they pass you to someone else who cant help... what happened to face to face contact..... i dont feel supported at all.. if i am doing this full time and dedicating my life to it.. then what about those who have full time jobs.. the system needs to change!!!
Click to expand...

I work full time. Having tried to get a couple of things I have found it impossible because people don'r believe I work full time or are unable to understand phrases like very early or very late...
 
ummmm have you tried speaking to Joe who does all the online campaigning ?
 
Hi Lee

It could be that JDRF may be able to help you as Bev says. In theory and I'm only thinking aloud here. They may want to help you to 'get one over' on DUK (you never know) and if you transfer your sponsorhip to them for research they may come up trumps. Worth talking to them to see what they say.

We have a support group for the kids in Eastbourne called EDDY. We are NOT affiliated to DUK. They approached us and we said no as all they wanted us to talk about was money and fundraising for them which we don't want. A town near us do that and I find it all quite overwhelming and unecessary. I truely believe that JDRF will be the ones to find the cure not DUK as I don't think they look hard enough. I think that our money goes to their reps when they stay at the most expensive hotels rather than the local B&B ! This is fact !
 
ok... I jave just posted a message on Duk FB site directly to Joe and he has already responded saying he'll have a hunt around .....with the didka stuff we were nocked by Duk till we got hold of Joe .... fingers crossed x
 
Bev.. yeah i have heard alot of good things about JDRF.. i am going to speak to them...i think they maybe the may forward.... i really do think that Duk need to back to basics and get back on the ground and support the local areas more.... i have add so so many emails about this.... i am thinking of getting a group of people togther to see how we can take this forward... fed up of being told thats just the way it is...time to make a stand me thinks... and its not a matter of slagging anyone off its a matter of telling it how it is... there is nothing said here that is not true... i would like to know excatly what there goals are... and what they see the future to be.... and how they are going to achieve it... teh documentary for example has had an amazing impact.... its things like that which is what is needed,... i am not the brain of britain but there must be somethin we can do... if people have tried to change it before..let me know what happened.. or any ideas on how...
what do i want.. i want everyone to be able to have access to a support network.. the people who are willing to put their time in to be FULLY supported and guided on how to run these and funding available... I learn more from seeing other diabetics than my visits to the doc... or is that just me... i am sure there must be a way of putting some sort of financial twist on this... NORTHERNER.. your usually good at that...😉
thanks for your input folk...😉
 
The only good thing I got from DUK was this place. When I was trying to find a way to get my surgery to prescribe strips, I asked them for advice, they were as much use as a chocolate teapot. They were more interested in getting me to volunteer with them than in helping me.
 
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This is their problem, take take take and not a lot of giving......

I hope this Joe person comes up trumps.
 
i aint holding out.. i have spoken to DUK regional office.. and their fundraising mgr and they coiuldnt do anything Joe maybe a nice guy... but i dont think he will be bale to do anything.. i wnet to shopmobility today as well and no joy... DUK advoce was for me to get funding myself.. i would have thought their backing would have got me further .... but they dont seem to think so..... defies logic really to me....
i am gonna end up going to my local garage and getting the 2 front wheels fixed myself... nothin like a good bodge job.....
 
what about the hire company helen M linked to ??
 
DUK have advertised locally for a fundraiser......... ?30K !!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was tempted! lol
 
Your story is not confined to the U.K. Lee.

http://www.medicalnewstoday.com/articles/189136.php

I also saw it on diabetesnewshound.

How about phoning the Health Editor on all the daily papers and the ones local to you and see if they are interested. You can say you desperately need some help to finance your challenge.

Good luck.
 
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