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Diabetes UK new campaign.

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
I don't really believe anybody who read all four pages and the A5 inserts that accompany it could think this was a negative, scaremongering message.

I haven't seen the mailshot so won't comment on its contents but in the same way that an interviewer decided within 30 seconds (I think it is) what they think of a candidate - someone reading a mail shot will look at the first few lines and if its too shocking or distressing not get any further.
 
I haven't seen the mailshot so won't comment on its contents but in the same way that an interviewer decided within 30 seconds (I think it is) what they think of a candidate - someone reading a mail shot will look at the first few lines and if its too shocking or distressing not get any further.

The first lines of the mailshot aren't shocking or distressing, they are bold, positive and affirmative from Diabetes UK in their eye-catching pink...

"WE won't rest until we've beaten diabetes once and for all".

It then moves on to a gripping Human Interest story about Olly and Jacqui Double and their two diabetic children.

An A5 handout accompanying the mailshot goes on to present the Double's story in more detail, and is something that must surely resonate with every T1 parent.
 
No problemo John,

The letter is a pretty good campaigning fund raising letter, well written and well organised.
The stuff about the research on the Artificial Pancreas should enthuse any T1 of any age and give them hope.......
"In the not too distant future, people with diabetes may finally be able to rest easy". Wow!
And the material on T2s responding differently to drugs depending on their genetic background is fascinating and again of great interst to T2s such as myself. ....
"This is a significant step on the path towards being able top personalise medicine for those with Type 2 diabetes". Excellent, I will definitely be responding positively to this letter to support research like this.
It seems to me that the people who are complaining about this fundraiser haven't read it or haven't got past the first page, haven't read all four pages and have taken the attention grabber and the factoids it contains out of context. The attention grabber panel just sets the scene for the upbeat report on current research that follows.
I don't really believe anybody who read all four pages and the A5 inserts that accompany it could think this was a negative, scaremongering message.

Being the parent of a type 1 diabetic obviously gives you a completely different outlook. I did read the whole article and I did find it extremely upsetting and distasteful. I have been to school to find my daughter in the recovery position out cold, I have caught her on the bathroom floor while she lay in my arms fitting, I have lost count of the number of ambulances and the number of nights I have slept on her floor with my phone set hourly to check her blood and feed her right though the night. I admit that Kate is a difficult case, but I stand by my original complaint and please do not assume I did not read the letter fully.
 
Again a post that shows what parents of children with diabetes have to deal with on a daily basis. And again my heart goes out to all of you wonderful parents, along with my awe and deapest respect. Hugs to you Elaine and to your daughter.

I think we can all only give our own account of how we have reacted to this campaign. We all have the right to feel how we feel and no one should try to tell us how we should feel in our own personal circumstances. It's incredibly narrow minded and unfair for anyone to tell others how to react unless we know exactly how it feels to be in their circumstances. Walk a mile in their shoes and all that. I'm talking about empathy. One definition of this word is 'feeling your pain in my heart.' I pray to god that I never lose this quality.

For my own part I don't think it necessary to use such shock tactics to extract money from people. A cheap shot in my opinion. I know Joe (not John lol) said it was aimed at people who are not members of DUK, but a lot of people with diabetes in their lives will have recieved it. Before I was diagnosed I was a regular donator myself and knew enough about diabetes to respect the work DUK do to help sufferers. I don't think for one minute that the letter I recieved today would have made me more likely to give, rather it would have had the opposite effect. Especially the Christmas Eve account. That is particularly tasteless and unecessary. Again in my opinion.

I also agree with Alan, that reading the first page might put many off reading the rest, including the 2 inserts, which are indeed excellent. What a shame if the cheap shock tactics prevents people from reading these inserts. I, like most of us, know full well what horrors I risk in the future if I can't keep good control of this desease. I don't need my nose rubbing in it. Nor do our wonderful parents, teenagers and children.
XXXXX
 
I am a parent too and as much as shocking facts are upsetting I believe these facts need to be out there. Diabetes is widely thought of as a self inflicted condition and for charities to get donations (which helps towards a cure) they need public sympathy.

The UK has lower life expectancy in diabetes and many conditions inc. some cancers because we don't have the care and treatment like other countries. If people don't know that then they will just put up with what we have an not expect better. I'm definitely of the belief that we need facts.
 
Thank you Blythespriit for such a lovely reply, you have summed it up beautifully. xxx
 
Thank you Blythespriit for such a lovely reply, you have summed it up beautifully. xxx

You are more than welcome Elaine. I sent you a PM earlier. Love to you and Kate and I hope you both have a peaceful night. XXXXX
 
Hi guys, haven't been around for a long while but just had to comment on this post and i am fuming!

Those that are FB friends will know that there has been a long ongoing battle with DUK to acknowledge that hypos can happen at night and that the body might not correct itself. They also said that it wasn't up to them to tell parents that this could happen at night. Now, this is totally contradictory to the letter that has gone out to lots of families from DUK over the past week, and sadly it looks as though they are using scare tactics to get fundraising. Whilst i am 'pleased' that they are taking the risk of night time hypos seriously and raising awareness it appears the left hand doesn't know what the right hand is doing at DUK and i am utterly fed up with it. This was DUK's reply a while back refuting night time hypos:

"Thank you for your patience in waiting for a response on this matter. We wanted to ensure we had the latest feedback and comments from both our Clinical Advisor who is a PDSN with over 12 years of experience in paediatric diabetes, and two practising Paediatricians who are experts in this area and who help us ensure our information is up to date and correct.

The information they have given back to us is that deaths from night time hypos are very, very rare, and that in children, there's 10 times the risk of dying from DKA compared to hypoglycaemia, and deaths in children are usually due to DKA rather than from not recovering from a hypo. We have heard from some parents who run their children?s blood glucose levels high to reduce the risk of them having a hypo, however this puts the child at greater risk of DKA. With this in mind, we are currently planning some future work around raising awareness of DKA in children.

We understand that this is a very difficult issue to address, but we do not wish to cause undue worry and upset to parents when the risks are so low that death through a hypo will happen to their child. Our information does state ?in most cases... your child?s body would increase blood glucose levels naturally...? and we, with our consulted paediatricians, feel that this is appropriate given the level of risk. We of course talk to people about these potential risks when they contact us and will continue to do so in future.

We realise this isn?t the response many you were looking for and you may be concerned that we are not changing our position, however we are acting on the advice of experts both within Diabetes UK and within the wider field of paediatric diabetes."
 
this is why i change hospital , graham consultant does not believe in night testing for sure because of this informations 😡(and we lost DLA)
 
Elaine, I was touched by your post and although I haven't got this letter yet, I wanted to send you a hug x I hate the use of scare tactics, it is used by doctors too, to scare us into improving our blood sugars, it upsets me because I already try hard and am scared by this as I feel I need help to improve not scare tactics!

I also wanted to say thanks to JoeFreeman for looking and taking our comments to those who sent out the letter - well done and I hope everyone's comments are considered before this happens again
 
🙂
That's a disgrace! Haven't had mine yet, sounds like I will be complaining too when I get my copy!

Bad enough shock tacticts for adults but I can't believe they would sink to the depths of the Christmas eve part!

I have been steadily loosing faith in DUK over the past few months:( but I will still be subscribing as my way of contributing to the charity.

No wonder DUK don't complain and/or try to set the record straight about misinformation in the press, they appear to think the information is correct😱

Happy Christmas DUK 😡


Hiya if you want to contribute to a diabetes charity there is always JDRF. They are fantastic. They are all about the children and type 1 and research and finding a cure etc etc. They are 100% better than DUK.
 
I've supported the BDA and now DUK since the day I was diagnosed, they are the biggest UK based charity raising vital funds for diabetes research and I shall continue to support them despite what has been said in this discussion.
 
🙂


Hiya if you want to contribute to a diabetes charity there is always JDRF. They are fantastic. They are all about the children and type 1 and research and finding a cure etc etc. They are 100% better than DUK.

What do you make of the statement about mortality that JDRF makes to parents of Type 1 children ....it seems more definite and more alarming than the one from DUK that has caused consternation among T1 parents in this thread ....is it insensitive to tell them this or is it something they should know ?

"On average the life expectancy of a person with type 1 diabetes is shortened by 15 years. " JDRF FAQ answer.
 
I also wanted to say thanks to JoeFreeman for looking and taking our comments to those who sent out the letter - well done and I hope everyone's comments are considered before this happens again

Thanks for the mention there. I've been having a look at all of the further comments this morning which really make for interesting reading. I've again forwarded these around so people here are aware of what is being said. I'm not yet sure what's going to happen regarding this, but I'll make sure you're kept up to date. Thanks again for all the comments.
 
Ive not read nor seen the letter so therefore wont make any comments regarding this,BUT I wanted to add my thanks to Joe for coming on and making your comments it's good that we have someone who actually works for DUK passing on all of these posts.
 
It's great to have actually evidence of people's concerns that I can share with people and say "Look, this is what's happening". The comments are really valuable.
 
Obviously there are statistics showing an alarmingly short life as an average. But hopefully that won't apply to many of us who are taking our health seriously.

Is it possible for the statisticians to break down the figures and show the expected lifespan/complications for different HbA1c figures ?

eg. 8+ is 10 years less and 50% chance of loss of sight.

7-8 is 7 years and 20%

etc

If indeed these figures exist. There's a huge difference between someone who's been sub-7 all their diabetic life to someone who's never tried to get below 10. And I suspect the stats are heavily weighted towards the uncontrolled end, which will always end in complications.

That way, it demonstrates how serious the problems are, if not dealt with but, with support (and research so give generously 😉), life can be fairly normal with a good future. That way it encourages diabetics to be more responsible and shows the public what happens if it's treated as trivial.

Rob
 
I agree Rob. I think it's important to show the difference that trying to achieve good control can make so that people feel they can take individual action to work at managing their diabetes well. I've no doubt that there are many hundreds of thousands of people with diabetes who suffer complications and premature death because of lack of education, motivation or just pure bad luck, especially if they are diagnosed after unknowingly being diabetic for many years and have already developed problems. But the overriding message should be one of hope, and a comparison of the likely outcomes from different levels of control ought to illustrate the benefits of good control.

I'm reminded a bit of that Flora Heart Health calculator a while back where, as soon as you ticked the diabetes box it instantly docked 10 years off your life span - no account taken of levels of control or years since diagnosis, nothing! I wrote to them but they just gave me a stock reply about how it was based on some old study (I forget which) carried out years ago and no doubt lumping those with excellent control in with those whose levels might have been double or treble 'normal'. It was practically saying 'Oh, you have diabetes - sorry there's no hope for you and nothing you can do' :(

In the same way that smokers or heavy drinkers might be told 'If you continue as you are, your life may be shortened by X years, but stop now and start looking after yourself and that threat will diminish. As an ex-smoker I know I found it encouraging to be told that in x years my risks would be practically the same as someone who had never smoked - it gave me hope that it was something worth doing, plus of course I quickly realised the benefits in feeling fitter and healthier, just as a person with diabetes does when they manage their blood sugars well. 🙂
 
Firstly esp for a teenager, but at any age, Kate's HbA1c is FAB! Well done! 🙂

I think Rob's hit the nail on the head in his replies - we know diabetes can, if poorly controlled, be a pretty devastating condition - equally, with the best control methods available (ie pumps etc for T1s, the best meds & test strips for T2s!!), you can & should expect a pretty much normal life span...and Rob's comment about hope is key - so as a group, is there any way we can use this info to our benefit? (Machiavellian hats on...) I'm just thinking that if anyone had been having problems with test strips etc, than this kind of info could be very useful when contacting MPs etc for assistance - as it demonstrates what we can & should avoid if given the right tools.

I think it must be the hardest job in the world finding the right balance between scaring & being totally frank. Shock tactics switch some off, scare others into taking things seriously - but it's always a risky strategy... I read somewhere a few months back some stats which showed the likely reduction in life expectancy depending on age at diagnosis and what year you were diagnosed, which also had comments about the influence on the predictions of genetics (ie why some diabetics seem to evade complications), control & lifestyle factors (eg smoking). It was quite sobering reading, but again looking for a silver lining, I have no intention of rolling over & 'expiring' when predicted too & being horribly flippant, maybe the scary stats will even bump up my pension annuity! 🙄 (Hope that flippancy doesn't offend anyone - sometimes black humour is a good way of coping for me!!!).

One final thing - when I was diagnosed at 11 months old "way back when", my parents were told I'd never be able to have kids...I have 2 healthy rascals now - so even if the current understandings can sometimes look bleak, they are not always set in stone...
 
I agree Rob. I think it's important to show the difference that trying to achieve good control can make so that people feel they can take individual action to work at managing their diabetes well. I've no doubt that there are many hundreds of thousands of people with diabetes who suffer complications and premature death because of lack of education, motivation or just pure bad luck, especially if they are diagnosed after unknowingly being diabetic for many years and have already developed problems. But the overriding message should be one of hope, and a comparison of the likely outcomes from different levels of control ought to illustrate the benefits of good control.

I'm reminded a bit of that Flora Heart Health calculator a while back where, as soon as you ticked the diabetes box it instantly docked 10 years off your life span - no account taken of levels of control or years since diagnosis, nothing! I wrote to them but they just gave me a stock reply about how it was based on some old study (I forget which) carried out years ago and no doubt lumping those with excellent control in with those whose levels might have been double or treble 'normal'. It was practically saying 'Oh, you have diabetes - sorry there's no hope for you and nothing you can do' :(

In the same way that smokers or heavy drinkers might be told 'If you continue as you are, your life may be shortened by X years, but stop now and start looking after yourself and that threat will diminish. As an ex-smoker I know I found it encouraging to be told that in x years my risks would be practically the same as someone who had never smoked - it gave me hope that it was something worth doing, plus of course I quickly realised the benefits in feeling fitter and healthier, just as a person with diabetes does when they manage their blood sugars well. 🙂

It's the carrot and stick scenario. And we rarely get offered any carrots. Except the ones we cultivate ourselves.

Maybe DUK could think about those of us who are blindly (no pun) venturing on to get our HbA1c's down as far as we can without too many lifestyle compromises but don't really know whether we're just pushing ourselves for no reason. I can remember when the BDA as was used to work for us as a support group. But they seem to be sending out messages so far removed from our own experiences that they just seem like another corporate charity more interested in their own politics than the people who they represent. Perhaps Joe could encourage some of them to view a few threads on here rather than making us feel like lepers (with all the mythology that is attached to that illness too).

Just speaking from a personal perspective but I don't feel DUK has anything to offer to me anymore. Which is sad.

Rob
 
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