# Diabetes UK new campaign.



## elaine1969 (Nov 29, 2011)

Has anyone received the latest campaign newsletter from Diabetes UK.  I was in a good mood until I opened the post this afternoon.  Apparently there are 100 amputations each week,  3 people dying every hour from Diabetes and the bit which real cheered me up - that my lovely daughter will have on average 20 years knocked off her life expectancy.  The list actually goes on and on with its "shocking facts"

The letter goes as follows "imagine tucking your children into bed on christmas eve...giving them kiss goodnight... and then worrying that they might not, in the words of one parent i've spoken to, still be in the land of the living the next morning"

Can you believe they are sending this out to type 1 parents?? I thought they were there to support us not terrify us!!  I know only to well what that feels like,  I have crept into Kates room many times and checked she is breathing.

Sorry for ranting but what if Kate had opened this letter and read the facts - it would have caused her real distress.  I have been on the phone to them this afternoon complaining and apparently they have had a lot of complaints.

Can anyone just confirm the life expectancy bit - 20 years seems a little extreme to me - I didn't think it was anything like that high.


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## casey (Nov 29, 2011)

Hi elaine
i received my letter yesterday and it scared the living daylights out of me. I put mine straight in the bin, glad you complained though, i did not think of that.


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## Robster65 (Nov 29, 2011)

Hi ELaine. That is appalling to send it out like that.

It sounds like a daily mail article gone wrong 

30 odd years ago I was told I could knock 10 years off my life expenctancy. I was told recently that they now say T1s live as long as anyone else, so don't worry about that.

It's possible that an uncontrolled T1 or T2 might lose 20 years. But that's not a statistic they should use. It's shock tactics that are inappropriate.

No idea on the amputations stat. I've no intention of losing any limbs and no one should if they have decent control (not perfect, just decent).

Well done for ringing them. They need a boot up the backside.

Rob


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## Pumper_Sue (Nov 29, 2011)

The most up to date research I have seen is 4 years less than average.
I know people on the net who have had diabetes for 70 plus years and are still fit and active.
I would complain as well if a letter like that dropped through my letter box.
Now why was it I do not subscribe to duk?


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## elaine1969 (Nov 29, 2011)

Thank you guys,  I didn't think that could be right.  I thought it was just a afew years at most if well controlled.  I won't be subscribing to DUK either Sue!!  I'm absolutely outraged, of all the people to get the facts wrong its hard to believe they do!


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## Robster65 (Nov 29, 2011)

elaine1969 said:


> Thank you guys, I didn't think that could be right. I thought it was just a afew years at most if well controlled. I won't be subscribing to DUK either Sue!! I'm absolutely outraged, of all the people to get the facts wrong its hard to believe they do!


 
You'll get to know them better as the years go by ! 

Rob


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## MeanMom (Nov 29, 2011)

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


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## Northerner (Nov 29, 2011)

Sounds like it was written in the same vein as the infamous issue of Balance which concentrated on as many negative, soul-destroying topics as they could drag up at the time. I thought they'd learned their lesson after the complaints they got about that  

Haven't got mine yet, will have a good look through when/if it arrives.


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## dmarshall (Nov 29, 2011)

Wow bad letter to send out !!!!!!!!!!!

I have always been told good control over T1 is the key . and if you get that we should expaect to live as long as normal . what ever normal is ?


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## Northerner (Nov 29, 2011)

I personally think I will live longer since my diagnosis, since I have learned so much about how my body works and it has made me do a much better job of looking after myself than I might otherwise have done.


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## trophywench (Nov 29, 2011)

Tell your daughter instead that I am 61 and have no intention of dying! - neither TG do I have any complications other than background retinopathy - after 40 years.

And what Sue said is true - a chap in America whose internet persona is Richard157 being a case in point.  Should see the photos of him with all the other Joslin Institute Golden Oldies - 50, 60, some of them 70 years post diagnosis.  Joslin are trying to find out why they haven't got complications.  They've been trying to find that out since before I was diagnosed !  They'll have to cast an '80years' medal soon I bet!  By the way in those photos, some of their 'other halves' looked a good deal older than they did!

If you subscribe to the untruth that you are gonna die 20 years early - then I wouldn't be surprised if you did ....... and funnily enough, I haven't met a T1 diabetic yet that gave credence to that tale.


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## elaine1969 (Nov 29, 2011)

Thanks everyone,  I shouldn't take things so much to heart,  it is still early days I suppose and there is still alot for us to learn.  Kates last hba1c was 6.7 which I believe for a teenager is pretty good - maybe she'll be receiving the 80 years medal in the future!!


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## Pumper_Sue (Nov 29, 2011)

elaine1969 said:


> Thanks everyone,  I shouldn't take things so much to heart,  it is still early days I suppose and there is still alot for us to learn.  Kates last hba1c was 6.7 which I believe for a teenager is pretty good - maybe she'll be receiving the 80 years medal in the future!!



Hi Elaine,
That's a good result tell Kate well done 
If it helps I was diagnosed aged 4 1/2 and 47 years later I have no complications at all.  When I was diagnosed there were no means of home blood sugar testing, yet many more like me are alive and well with no complications. (2 fingers up to duk for scareing you like that)


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## HelenM (Nov 29, 2011)

stats from Pittsburgh USA, but there aren't necessarily other studies to compare.


> For those diagnosed with diabetes between 1965 and 1980, the life expectancy was approximately 15 years longer than for those diagnosed between 1950 and 1964 (53.4 years vs. 68.8 years). The 1965-1980 diagnosis cohort life expectancy was approximately 4 years less than that estimated of the US general population at that time (72.4 years), while the 1950-1964 diagnosis cohort had a life expectancy approximately 18 years less than the general population (71.5 years).


http://www.endocrinetoday.com/view.aspx?rid=85054

should have commented on quote, This shows that for  people diagnosed  (in one county in the US) between 1965 and 1980  mortality had improved greatly compared with those born earlier . The life expectancy was within 4 years of the norm for people in the US.   . Since these people  spent their earliest years at a time when testing was still rudimentary and insulin once or twice a day I would have thought that things have improved since then.


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## mcdonagh47 (Nov 29, 2011)

HelenM said:


> stats from Pittsburgh USA, but there aren't necessarily other studies to compare.
> 
> http://www.endocrinetoday.com/view.aspx?rid=85054



There was a study from Toronto in 2002 or 03 which suggested 10-15 years off life expectancy for T1s and 5-10 years for T2s.


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## Northerner (Nov 29, 2011)

mcdonagh47 said:


> There was a study from Toronto in 2002 or 03 which suggested 10-15 years off life expectancy for T1s and 5-10 years for T2s.



When were the study participants diagnosed?


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## Hanmillmum (Nov 29, 2011)

What parents need is support and hope not scaremongering, we have enough anxiety and stress day to day (and night) without supposed supportive organisations hamming it up


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## Ellie Jones (Nov 29, 2011)

I've just shown this to hubby his reply, was have they lost the plot or what shaking his head in total amazement  Now I know why we're aren't members of the DUK...

The only problem when looking at some of the statistical figures are based on out of date factors and don't always reflect the improvements in understanding, treatment options and new technology!  But another factor I also ponder though is the impact of the source health care system on individual's...

Take America where medical is private where even with the aid of medical insurance some people still struggle at times, with access to enough medication or perhaps monitoring check ups, due to they can't afford their portion of the bill..

Where as in this country we've don't have to worry (for the time being) about access to enough insulin etc to treat our diabetes, or avoiding a blood test etc due to the cost of our portion of the bill.


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## Robster65 (Nov 29, 2011)

All good points Ellie. Different stats for different health systems.

Although several of us were diagnosed in the days of urine tests and twice a day jabs, we're mostly healthy with only minor changes after decades.

Averages can be heavily influenced by extremes also. If you look at those who take rather less care of themselves, including smoking, drinking, lack of exercise, etc, then I would expect them to have a much shorter life due to complications. As there must be a fair few T1s about who fall into this category, they will have a big effect on the average. Just think about some members (me included) who are largely uneducated on the latest methods. Proactive diabetics who want to be as healthy as possible should live as long as they would have done without diabetes I would have thought.

Rob


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## Tina63 (Nov 29, 2011)

I received my copy yesterday.  I opened it, had the quickest of scans over it, then left it on the side to read later.  The top headline in red is SHOCKING FACTS.  I came back to it after a bit and read the first couple of facts, then my son walked in.  I just walked off, thinking it would perhaps do him good seeing it, as he is still not taking things too seriously, and at the time felt really positive that he appeared to be reading it (I didn't make it obvious he had noticed).  

After a couple of minutes he said "I would rather have breast cancer and prostate cancer rather than this" as there is another highlighted comment at the bottom of the newsletter saying "Diabetes currently causes more deaths than breast and prostate cancer combined."  I hadn't read that far.  To be fair, I had read very little.

I then had a proper look over it, and like the other mums found it very shocking and upsetting, especially over the life expectancy bit, and actually then felt guilty leaving it out for my son to see.  Had I read it properly when it arrived, I would never have left it out.

I did then make light of it, telling him to open it up, and notice that actually they are only after our money, and said they have to shock you to get you to put your hand in your pocket.

But truthfully, I was NOT AMUSED, in fact like others have said, totally shocked that they could send this to people and parents of children with type 1.  Very unprofessional and very upsetting.


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## Pumper_Sue (Nov 29, 2011)

My Personal view is that as per normal duk have shot themselves in the tootsies.
I know as a fact if I had read that as a teenager I would think why bother to control my diabetes if that's going to happen to me.
duk would be better off focusing on the good/positive side of things rather than the it might happen. After all it might not happen.
Also if they are printing stuff like this, what exactly have they done to educate people on the management of diabetes so these statistics that have been dredged up from the basement are not a reality in the future?


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## Lady Willpower (Nov 29, 2011)

Damn. I thought that having diabetes for 46 years was going some and I haven't met anyone that has had it as long as me, well until I came in here lol, but 70 years is going some and I will have to live a lot longer with better control if I want to beat them lol I don't know if I am happy I can have it for that long or more miserable that I am nowhere near 70 years lol :-D


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## trophywench (Nov 29, 2011)

yeah but you'd only be 70.

I'd be 92 !!


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## FM001 (Nov 30, 2011)

Shocking and appalling that they are mailing this out  Diabetes doesn't shorten lives by 20 years at all and provided we manage the condition well we can live as long as the average person.

It would be welcome if someone from DUK would respond on the forum to whats been said in this thread.


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## Northerner (Nov 30, 2011)

toby said:


> Shocking and appalling that they are mailing this out  Diabetes doesn't shorten lives by 20 years at all and provided we manage the condition well we can live as long as the average person.
> 
> It would be welcome if someone from DUK would respond on the forum to whats been said in this thread.



I've let them know about the reaction toby.


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## cherrypie (Nov 30, 2011)

The statistics are out there but to have them invade your own home is not something that a charity whose aim is supporting diabetics should be doing.  Adults have difficulty handling scare stories so why would they send it to parents looking after their Type1 children.  This really needs sorting out.

Statistics are a bunch of numbers that can never be individualised.  Like others have said, looking after yourself is the key to a long life.

I wonder if JDRF send this out in their newsletters?

http://www.jdrf.org.uk/page.asp?sec...e_expectancy_of_someone_with_type_1_diabetes_


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## JoeFreeman (Nov 30, 2011)

Morning everyone - Northerner has sent me a link to this thread and I've just been having a read. I'm sorry that this letter has caused upset to those who have received it. 

I'm forwarding a link to this thread to the team who have sent this out, and will work on getting a response from them today to share with you all.

Thanks you.

Joe


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## grahams mum (Nov 30, 2011)

i can wait to see the magazine and complaint i already complaint to DUK for something on itv even they did not know about it so i am going to do it again this is why we have such stupid consultant ( in my case at least ) because DUK send always wrong messages out


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## Copepod (Nov 30, 2011)

JoeFreeman said:


> Morning everyone - Northerner has sent me a link to this thread and I've just been having a read. I'm sorry that this letter has caused upset to those who have received it.
> 
> I'm forwarding a link to this thread to the team who have sent this out, and will work on getting a response from them today to share with you all.
> 
> ...



Thanks Joe, will look forward to the response.

I've only just got in from work to read this, so just catching up now. Like many others, I have no intention of living fewer years than my grandmothers who both lived into their 90s and grandfathers who both reached their mid 80s. 16 years since diagnosis so far and no complications nor problems, just loss of careers in TA, marine biology, professional SCUBA diving etc despite my effrorts to keep fit and healthy. Licensing bodies and potential employers are also affected by these negative messages, so that when they see "type 1 diabetes" on an application form, even if followed by "16 years since diagnois, with no problems, nor complications" they might not consider application further.


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## mcdonagh47 (Nov 30, 2011)

JoeFreeman said:


> Morning everyone - Northerner has sent me a link to this thread and I've just been having a read. I'm sorry that this letter has caused upset to those who have received it.
> 
> I'm forwarding a link to this thread to the team who have sent this out, and will work on getting a response from them today to share with you all.
> 
> ...



just got the thing this morning.
It looks like run-of-the-mill fund raising.
The shocking facts list just sums up basic stuff, it says Type 1 "can take up to" 20 years off life expectancy and T2 up to 10 years , the 20 year figure being a worldwide figure presumably including Africa etc ( but still true nonetheless ).
Knowing that T2 "can" or could take 5 - 10 years off my life expectancy has always been a motivating factor for me and I'm not in the least outraged to be told that.


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## Andy HB (Nov 30, 2011)

Hey, so I'm only going to live to 105, I can live with that. 

Andy 

p.s. I may be being flippant, but I'm also making a valid point, I hope.


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## Blythespirit (Nov 30, 2011)

I got my copy of this letter today. Having read this thread yesterday I knew what to expect but I do think it could have been worded a lot better and still got the message across. I'm a mature and reasonably knowlegeable Type 2. Had I been newly diagnosed, or the parent of a Type 1 child I would have been scared to death and depressed by it. 

I know the statistics are based on fact worldwide or whatever. I also know that there's never been a better time to have diabetes than now because of the better treatments available. So why didn't the letter give this message? Why not say, in effect, we've come so far but there is still a long way to go. Please donate to this worthwhile charity so we can continue to make things better for people with diabetes.

As it stands the letter could have been an article in the Daily Mail, Express or even the Sun. XXXXX


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## FM001 (Nov 30, 2011)

Blythespirit said:


> I know the statistics are based on fact worldwide or whatever. I also know that there's never been a better time to have diabetes than now because of the better treatments available. So why didn't the letter give this message? Why not say, in effect, we've come so far but there is still a long way to go. Please donate to this worthwhile charity so we can continue to make things better for people with diabetes.
> 
> As it stands the letter could have been an article in the Daily Mail, Express or even the Sun. XXXXX




That's the point it could be worded better without the scare tactics.  We all know or at least should know by now the risks associated with not controlling diabetes, I for one don't need reminded and would be more inclined to donate if the mailing has a positive outlook rather than a negative one.


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## JoeFreeman (Nov 30, 2011)

Hi all, thanks for the continued comments. I've spoken with the team involved here...

Thank you for the comments. We?re sorry that this letter has caused some upset and distress ? this certainly was not our intention.

This letter was sent out to people who are not members of Diabetes UK, and therefore sent with the aim of letting people know about the seriousness of the condition.

The appeal uses hard hitting messages but this was not designed to scare parents or children with diabetes, but to raise awareness of diabetes and its complications.  Research we?ve seen and carried out shows that many people believe that diabetes (especially Type 2) is a minor or a trivial condition, and we wanted to inform and educate people about the seriousness whilst attempting to raise funds for our vital work. To date this appeal has raised around ?20,000 towards our work, for which we are very grateful. 

To those who already have diabetes, the figures noted in the ?shocking facts? panel - especially those surrounding life expectancy - do make for difficult reading and we?re sorry for any upset these may have caused. The life expectancy figure is from The Department of Health?s National Service Framework for Diabetes, and provides a national average. If you would like to read the report the statistic is on page 10 under ?Impact and cost of diabetes? and the link is here: http://bit.ly/soMyP8

We?ve made sure that all these comments have been shown to everyone involved with this project and please be assured that we have taken account of your comments and will make sure that we factor these in to the planning of future appeals and letters.

Thank you.


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## Robster65 (Nov 30, 2011)

Perhaps the message should be about how unforgiving diabetes is unless each individual, with medical support, manages their condition intensively and proactively, to avoid becoming one of the statistics shown.

The fact is we need to believe (even if DUK don't) that we can lead a long and healthy life providing we do as we should and more.

As someone said, a newly diagnosed teenager might read that and just give up. All this slog and self deprivation for a short life.

Although it raises lots of cash, it could lose a fair few healthy diabetics along the way. It does need factoring in for the future.

Rob


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## Pattidevans (Nov 30, 2011)

Wouldn't it be nice if, in a perfect world, DUK was run by and staffed by diabetics?  Unfortunately I think they're completely divorced from the reality of the whole business of living life with diabetes.


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## mcdonagh47 (Nov 30, 2011)

JoeFreeman said:


> Thank you.



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.


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## Pumper_Sue (Nov 30, 2011)

> To those who already have diabetes, the figures noted in the ?shocking facts? panel - especially those surrounding life expectancy - do make for difficult reading and we?re sorry for any upset these may have caused. The life expectancy figure is from The Department of Health?s National Service Framework for Diabetes, and provides a national average. If you would like to read the report the statistic is on page 10 under ?Impact and cost of diabetes? and the link is here: http://bit.ly/soMyP8



So what have the Dept of health done to address this then?
Yep that's right no education no test strips = !!!


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## Northerner (Nov 30, 2011)

mcdonagh47 said:


> ...
> 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.



Has it not occurred to you that perhaps people were not encouraged to read any further, given the distress caused by the 'attention grabber and factoids'?


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## Copepod (Nov 30, 2011)

Pattidevans said:


> Wouldn't it be nice if, in a perfect world, DUK was run by and staffed by diabetics?  Unfortunately I think they're completely divorced from the reality of the whole business of living life with diabetes.



At least one senior person at Diabetes UK, Simon O'Neill does have type 1 diabetes, diagnosed as a young adult - see http://www.diabetessupport.co.uk/boards/showthread.php?t=407 (both the organisation and his job title have changed since he wrote the piece that I found so helpful)


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## margie (Nov 30, 2011)

mcdonagh47 said:


> 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.


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## mcdonagh47 (Nov 30, 2011)

margie said:


> 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.


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## elaine1969 (Nov 30, 2011)

mcdonagh47 said:


> 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.......
> ...



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.


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## Blythespirit (Nov 30, 2011)

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


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## Alba37 (Nov 30, 2011)

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.


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## elaine1969 (Nov 30, 2011)

Thank you Blythespriit for such a lovely reply, you have summed it up beautifully. xxx


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## Blythespirit (Nov 30, 2011)

elaine1969 said:


> 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


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## Becca (Nov 30, 2011)

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."_


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## grahams mum (Nov 30, 2011)

this is why i change hospital , graham consultant does not believe in night testing for sure because of this informations (and we lost DLA)


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## Natalie123 (Nov 30, 2011)

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


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## Adrienne (Nov 30, 2011)

MeanMom said:


> 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!
> 
> ...




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.


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## FM001 (Dec 1, 2011)

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.


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## mcdonagh47 (Dec 1, 2011)

Adrienne said:


> 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.


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## JoeFreeman (Dec 1, 2011)

Natalie123 said:


> 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.


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## Steff (Dec 1, 2011)

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.


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## JoeFreeman (Dec 1, 2011)

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.


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## Robster65 (Dec 1, 2011)

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


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## Northerner (Dec 1, 2011)

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.


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## Twitchy (Dec 1, 2011)

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...


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## Robster65 (Dec 1, 2011)

Northerner said:


> 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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## FM001 (Dec 1, 2011)

Steff said:


> 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.





Yes I would like to thank Joe too


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## mcdonagh47 (Dec 1, 2011)

Robster65 said:


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



I seem to remember that the EPIC study did that about 10 years ago. It was  a Europe wide study which had a cohort from Norfolk so its sometimes known as the "EPIC Norfolk" study here.

They correlated HbA1cs and life expectancy/ disease etc and found it was very important even for non-diabetics to maintain really healthy A1cs.


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## Robster65 (Dec 1, 2011)

Thanks McD. I'll have to dig into it when I have a bit more time. I've just googled it and there's a LOT of papers referring to it.

I like statistics but qualitative data, as well as quantitive, gives a slightly more real world view. 

Rob


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## Steff (Dec 1, 2011)

Just wanted to point out this from diabetes UK

Thank you for all the comments regarding our recent appeal.

 We are very sorry and apologise for any upset or distress that our recent mailing may have caused. We understand this is a very sensitive issue that is of great concern to many parents and children with diabetes.

 We understand why this appeal appears to contradict our position on night time hypos in children. However we can confirm that our stance on this subject has not changed.

 Although night time hypos can be a frequent occurrence, the risks of a child dying from a night time hypo are small. This is a position which is supported by paediatric diabetes specialists. Due to the small number of cases, we do not highlight this issue in our healthcare information or other communication channels with our supporters in order not to cause unnecessary distress. We believe this subject is best discussed with your healthcare professional on a one to one basis or with the Diabetes UK Careline where our trained counsellors can offer appropriate advice.

 We apologise for causing any distress by using this message as a fundraising tool and we will revisit how we approach this sensitive subject in the future. 

 Our Careline service is here to help and support anyone that may be concerned about this issue.


*I think this is more to do with what Becca mentioned though*


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## katie (Dec 1, 2011)

Wow. Their campaign letters are usually depressing enough, but this one seems to take the cake!


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## FM001 (Dec 1, 2011)

Steff said:


> Just wanted to point out this from diabetes UK
> 
> Thank you for all the comments regarding our recent appeal.
> 
> ...






Well the good thing is they have acknowledged peoples concerns and will review how future campaign material is worded, not many organisation admit their mistakes so well done DUK


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## trophywench (Dec 1, 2011)

And here's some Good News 

I can indeed confirm that I was able to purchase an 'Impaired Life Annuity' - which if left in the various dribs and drabs of Private Pension schemes I'd paid into over the years (when there weren't 'proper final salary-based occupational schemes' on offer from various employers) would have netted me the magnificent sum of ?400 and odd a YEAR, and achieve an increase to approx ?1,200 a year.  (I needed to maximise it because I was never going to qualify for 100% State Pension)

Type 1 and Depression were the two elements.  Oh, and the services of a very good IFA of course!

Of course, at that time, I didn't want too many people exceeding the life expectancy figures the actuaries have embedded in their calculators.  That would have queered my pitch entirely.  So if people want to make use of the facility, the more 'other people' who continue to die too soon, the better for the impending pensioners really.

I know that's - dare I say? - a Jeremy Clarkson type statement but there you go.  If it wasn't for all these other folk dying sooner rather than later, then I'd be ?800 a year worse off !  LOL  And it doesn't change my intention to outlive em all and bankrupt Canada Life in the process, one little bit .........


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## Mark T (Dec 1, 2011)

trophywench said:


> ...LOL  And it doesn't change my intention to outlive em all and bankrupt Canada Life in the process, one little bit .........


You go for it 

But don't forget to leave some in there for when the likes of me get to retirement age


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## Adrienne (Dec 2, 2011)

mcdonagh47 said:


> 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.



Hiya
Sorry only just seen this, I've been causing merry hell on the DUK FB page so been busy.   I'm so angry with DUK still.

I think that DUK say 20 years off life expectancy.   Do JDRF still say 15 years off?    Is this a recent statement?

No I'm not angry with JDRF, if you knew the good they really did, you would feel the same as me.   They are an amazing charity and they are selfless.  I have met many of the people who work there (indeed our very own Shiv from here does) and they are marvellous lovely people.

I've met a few from DUK and whilst I'm sure lots are lovely, the couple I've met are so 'superior' and yes I've got so and so who has diabetes so know all about it, the usual rubbish of a distant relative and actually they really don't have a clue as they don't have diabetes or a child with it.

Anyway my view on this life expectancy thing is that these were figures based on years ago when pumps and CGM and glucometers were unaccessible.  Technology has changed so very very much over the past few years even,   Lantus only appeared whilst my daughter was little so we are talking less than 11 years.    Pumps are more accessible over the last 8 odd years.  I know they have been around longer but with the patient choice of hospitals more can move to proactive teams and get a pump and possibly CGM.

If they started that study again with the kids of today, I think there would be a difference in that 15 or 20 years.  However saying that, it all depends on whether the children are under a proactive team or not.

At my daughter's school there are probably around 7 or 8 type 1 children.  Only two are on a pump and are under a good proactive hospital in London.   The others are under the local team and I just get so sad when I hear my daughter speaking about them.   They feel ill, they feel tired, they are always in the medical room, they do sports at school with levels of 20 odd and that is all acceptable to them and their families because they don't know any different because they are under a very bad team.  It is sad, so who knows about the life expectancy under that sort of stress.


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## cherrypie (Dec 2, 2011)

cherrypie said:


> The statistics are out there but to have them invade your own home is not something that a charity whose aim is supporting diabetics should be doing.  Adults have difficulty handling scare stories so why would they send it to parents looking after their Type1 children.  This really needs sorting out.
> 
> Statistics are a bunch of numbers that can never be individualised.  Like others have said, looking after yourself is the key to a long life.
> 
> ...



I did put this in the thread where JDRF give the figure on life expectancy.


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## Robster65 (Dec 2, 2011)

Adrienne said:


> Hiya
> Sorry only just seen this, I've been causing merry hell on the DUK FB page so been busy. I'm so angry with DUK still.
> 
> I think that DUK say 20 years off life expectancy. Do JDRF still say 15 years off? Is this a recent statement?
> ...


 
That's a good point actually Adrienne. If DUK are claiming the 20 years as a reality, what are they actually doing to change it other than researching a cure and offering an advice line ?

Are they actively lobbying at the GP level to get them all singing from the same book and trying to find out what diabetics themselves think is wrong with 'the system' ?

Perhaps if they looked in on a few forums such as this maybe they would get a better perspective on what they and the NHS are telling is real and what we actually experience.

There seems to be a huge discrepancy and if it's us who are wrong, then perhaps they should be embarassed by that. Where is the education programme for already diagnosed diabetics to attend for a refresher ?

I'm ranting again. I'll go shopping. 

Rob


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## Adrienne (Dec 2, 2011)

Hiya

I read the DUK reply on their fb page and it is a 100% cop out.   They have not even bothered addressing the question at all.    It is amazing.  Time and time again they get away with it because they are the biggest diabetes charity around and no-one knows any other.

They are appalling.

I am a parent of child with type 1.   I personally (like Alba said) have no problem the letter and contents about children and not waking up etc etc.  This is a hard hitting document which is factual and it does happen however rarely it does.  We hear about them too many times on the internet on fb. 

However DUK stated in a recent Balance magazine and I am not using the actual wording but this is what they said 'bodies will self correct overnight so no worries about treating overnight hypos'.   This obviously means no overnight testing is needed etc etc.

We took issue with that as that mechanism doesn't always work in everyone (quite a few actually, you would be surprised) and we said that you cannot leave it like that, what about all these newly diagnosed children, their parents will read that and think everything will be ok overnight, no need to test or anything.    We provided evidence in the way of studies and papers written but they still stood by their very stupid irresponsible statements.  We hit a brick wall.

Then all of a sudden all these parents with type 1 kiddies receive this letter with this hard hitting, is your child going to wake up this Christmas day morning etc etc.   Give me your money.

Marvellous !

So finally we have DUK actually saying that yes this can happen and it is fact and you need to beware and they are using it as a way of fundraising, ok no problem.   Yippee we all think.   They have changed their minds.

So we asked them.   Have you, DUK, changed your minds about your irresponsible statement that bodies will self correct overnight therefore unnecessary to treat hypos or test.    

You would think the answer would be 'yes we are sorry, we have changed our minds and will publish in the next Balance a statement or do a feature on this'.

But nooooooo  they say they are standing by what they said.

Helloooo what the hell does that mean?

So on the one hand they are telling all and sundry that no need to test, most of you will be ok overnight, your bodies will self correct if you are hypo and then WHAM they send this very contradictory letter etc out using the very thing we told them they needed to make parents aware of just to make money yet they still stand by their original statement.

Confusing eh?    Maybe you can see why we are so cross and angry with them again.    If they want to use kids in this manner they have to be prepared to back it up with proper data and features about the hazards of what could happen overnight to your child.

I know the family in this letter DUK have sent and they are a lovely lovely proactive family and what they have said is 100% right, it is DUK who are at fault with the contradictions they still seem to be standing by.

They have lost a lot of families these last two days.   I stopped my subscription a while ago as I cannot bear it anymore.   

I expect I will be shot down in flames due to this message but I feel very very strong about this and am more than happy to meet anyone from DUK and talk this over.  I am fuming as are many many many people.


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## Adrienne (Dec 2, 2011)

Robster65 said:


> That's a good point actually Adrienne. If DUK are claiming the 20 years as a reality, what are they actually doing to change it other than researching a cure and offering an advice line ?
> 
> Are they actively lobbying at the GP level to get them all singing from the same book and trying to find out what diabetics themselves think is wrong with 'the system' ?
> 
> ...



Hiya Rob

You are right of course.   

However DUK say it is not in their remit to educate parents of things that could go wrong.  Seriously, this is what their original argument was.   It is the job of the parent to talk to the DSN whose job it is to tell the parent of any so called problems like DIB or blindness or amputations.   It is not DUK's job. This is their stance, they have catergorically said it is not their job.  

Suddenly however it seems it is their job to frighten the bejesus out of parents and children (some kids opened this mailshot) and tell everyone that you may not wake up !

However when questioned, suddenly it is not their job again and stand by what they said, it is the DSN's job.

They really need to make up their minds.   Parents will not be made to lay down and be silent on this one.


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## Adrienne (Dec 2, 2011)

cherrypie said:


> I did put this in the thread where JDRF give the figure on life expectancy.



Sorry, I didn't see this.   I haven't read the whole thread, I'm supposed to be sitting here working (I work from home) and I instead am looking here whoops


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## grahams mum (Dec 2, 2011)

Adrienne said:


> Hiya Rob
> 
> You are right of course.
> 
> ...



for some parents that is not true either as WE KNOW some cosultant and dsn you should not even testing overnight , so what happen if parents follow their consultant advice?  oh sorry my son had an hypo overnight and is dead  why you did not tell me that ???( you know what i am talking about adrienne)


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## Adrienne (Dec 2, 2011)

Yep Daniela I know what you mean.

The policy apparently where we live is that if you are on injections you do not need to test at night at all.

Apparently if you test your child at their bedtime (the child's) and give them a snack then whatever level the child is at that point will be the level the child wakes up on !!!

Apparently it is only if you pump that you may need to test at night.

Interesting stuff eh !   Doesn't make much sense does it !

Bloomin' idiots !


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## mcdonagh47 (Dec 2, 2011)

Robster65 said:


> There seems to be a huge discrepancy and if it's us who are wrong, then perhaps they should be embarassed by that. Where is the education programme for already diagnosed diabetics to attend for a refresher ?
> 
> Rob



It's called DAFNE Robster and it is a great credit to Diabetes UK.

DAFNE was originally a course at Stuttgart run by Prf. Berger. BDA/Diabetes Uk paid for  docs and dsns etc to go over to study it in the late 1990s. Diabetes Uk then paid for the Dafne Study in 2000-1 which ran for a year and proved the efficacy of the revised German course in Britain.
Diabetes Uk then paid for the training of Dafne staff and paid for the roll out of the first 30(?) Dafne Centres.

The question "What have Diabetes Uk ever done for us ?" is rather like the question on the Monty Python film ( and with a similar answer ) "What have the Romans ever done for us ?"


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## mcdonagh47 (Dec 2, 2011)

Adrienne said:


> Hiya Rob
> 
> 
> Suddenly however it seems it is their job to frighten the bejesus out of parents and children (some kids opened this mailshot) and tell everyone that you may not wake up !
> .



Oh come on, the mailshot is not telling everyone they might not wake up. Its explaining the fear Parents of diabetic children have of that happening, explaining it to the general public and Parents of non-diabetic children. In the hope that they will put their hands in their pockets to fund the research of things like the Artificial Pancreas, featured in the mailshot, in order to help allay those fears in the minds of Parents of diabetic children.


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## Adrienne (Dec 2, 2011)

mcdonagh47 said:


> Oh come on, the mailshot is not telling everyone they might not wake up. Its explaining the fear Parents of diabetic children have of that happening, explaining it to the general public and Parents of non-diabetic children. In the hope that they will put their hands in their pockets to fund the research of things like the Artificial Pancreas, featured in the mailshot, in order to help allay those fears in the minds of Parents of diabetic children.



You are right to a certain extent.   However this mailshot was supposed to go to non members of DUK and non parents - (by that it was meant without diabetic children).   I reached the doormat of many members of DUK who do have children with diabetes and there was something on the envelope (I do not know) that some children took it upon themselves to open and read.  That is scaring the bejesus out of children and out of many newly diagnosed parents whose teams had not told them of any 'added extras'.   

I think you are missing the point though.   I am not dissing the mailshot, I think it is good.   What is wrong is that they have hugely contradicted themselves.  The left hand is not talking to the right hand.    I understand that this mailshot was arranged a while ago.   One of them came first, this mailshot or the awful misleading, badly worded article in Balance which contradicts the mailshot.   However DUK are still standing by that misleading article.  They are still saying it is up to medical teams to tell parents of possible situations.   So if that is the case then why are they sending out this mailshot.    I think they should be and I think that is where people are jumping to conclusions.     We think that DUK should be warning people/parents whatever of the good bits and the bad bits. It is them who say they will not warn or educate the bad bits but they will use it in order to get money.    

Hypocritical ?


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## grahams mum (Dec 2, 2011)

mcdonagh47 said:


> Oh come on, the mailshot is not telling everyone they might not wake up. Its explaining the fear Parents of diabetic children have of that happening, explaining it to the general public and Parents of non-diabetic children. In the hope that they will put their hands in their pockets to fund the research of things like the Artificial Pancreas, featured in the mailshot, in order to help allay those fears in the minds of Parents of diabetic children.



 i havent seen the article but every parents is always in fear of the child going in hypo i am sure you havent experience your child going to sleep in the car only and you dont know if is tired or low and start pocking him to see if responds imagine when is a 12 hours sleep we dont really go to rest  is always in our mind any noise or you go to the toilet and you test your child is not a nice feeling at all


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## HelenM (Dec 2, 2011)

I'm still not sure where they get the 20 years from, the Framework doc they reference doesn't  itself seem to have have references.
I found that  there was a British Diabetic Association Cohort Study covering  those diagnosed 1972-93 and followed up to February 1997. The oldest  subjects would have been 55 by the end of the study and it wouldn't reflect todays potentially better control . Reading the abstracts they may have extrapolated a figure for life expectancy. (can't get access to the study)
 I  also found a study that was trying to model the cost benefits of intensive glucose control. It appeared well researched with an extensive literature search. They used the UK Framework figures for the prevalence of T1 but not for mortality.
http://www2.lse.ac.uk/management/do..._intensive_glucose_control_in_T1_diabetes.pdf



> As most death certificates of diabetic patients do not report diabetes as a cause of death, official statistics that report causes of mortality are unreliable for diabetes. So we estimated mortality from diabetes using mortality rates from longitudinal studies (Soedamah-Muthu et al. 2006a;
> Rossing et al., 1996)


 
 The 2006 study mentioned is  indeed the only 'recent' one I've been able to find for the UK.  Even then it is out of date. (certainly if you look at the improvements since then shown in the Pittsbugh study,)  It compares deaths  of people with T1 to those of people without, over the period 1992-1999.   There is no doubt that mortality is higher in  every age group but I can't see that it anywhere suggests a 20 year difference (The only  overall averages are deaths during the period (remember most people didn't die during those years.) There was a 7 year difference (55 with T1 v 62 without)
http://www.springerlink.com/content/p52u7m1236r01u73/fulltext.html

The second study was from Denmark and was looking at risk factors so not helpful for UK overall figures)


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## Adrienne (Dec 2, 2011)

Helen, I have never ever heard of 20 years either.

The figure that I have always heard is 15 years, that is in studies and has been banded around for years.   That was from a study or studies from donkeys years ago and nothing to do with todays people with diabetes on the current regimes which allow much tighter control so in essense even that 15 year thing is now obsolete as well.

There are no up to date studies as yet.   If there were, we would know I'm pretty sure.


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## trophywench (Dec 2, 2011)

Well if DUK were identified on the envelope, the diabetic child automatically knows the letter is about them, doesn't he?

Oooh, is this about a competition my mum can enter to win me a new i-Pod?

Have to say when I was little and thereafter, my mum would have absolutely killed one of us if we had opened a letter addressed to someone else in the family.  When I went to work, letters addressed to individuals were walked round the office with the Manager's secretary carrying the date stamp and the stamp pad, never opened by the people on Post Opening detail.

I still don't open envelopes addressed to my husband unless I know where it's from and what it is.  Eg Arbury Citroen will usually be advertising matter as we once bought a car from them and we sometimes have it serviced or MOT'd there. 

I am still a supporting member of DUK.  I've seen little about JDRF, although I know of their existence - their name makes me believe it was never for me anyway, so why would I ever look at them or to them?

I have rung the DUK Careline twice and did get some partially helpful info, but not the real help I needed at the time.  More a 'There there dear' response ....... and a statement that 'That should not happen because ...'  Well I already knew that thanks, so what can I usefully do about it then?  They didn't know and couldn't advise blah blah ......  (I rang em the second time cos I thought maybe the first person I got at the time was a lame brain, so made allowances and rang another time, got someone else who was also no help either.)  I didn't expect them to come and sort me problem out - I just needed them to point me in the right direction to get what I needed.  Not.

I probably just stay in it for old times sake and the fact they are the only people the NHS pay lip service to in it's treatment of me.

And they really annoy me by printing letters from people which they know will enrage their members without making any comment themselves - eg the nurse immortalised by Northerner who thinks we should be confined to a box to do our jabs or the chap I whinged about recently who thought the hypo-ing woman should be lynched for using so many test strips.

Not their job to disabuse these people - THEIR MEMBERS - of their ridiculous beliefs?  Incroyable.


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## Robster65 (Dec 2, 2011)

mcdonagh47 said:


> It's called DAFNE Robster and it is a great credit to Diabetes UK.
> 
> DAFNE was originally a course at Stuttgart run by Prf. Berger. BDA/Diabetes Uk paid for docs and dsns etc to go over to study it in the late 1990s. Diabetes Uk then paid for the Dafne Study in 2000-1 which ran for a year and proved the efficacy of the revised German course in Britain.
> Diabetes Uk then paid for the training of Dafne staff and paid for the roll out of the first 30(?) Dafne Centres.
> ...


 
If you live in an area that offers DAFNE, you're very lucky. I would need to travel 50 miles each way to get on a course. After sitting on a waiting list.

There's no actual updating unless I research and then ask for futher details. Nothing's pushed. The assumption is always that I must know everything because I've been diagnosed so long. Bad assumption.

And as has been hinted at, HCPs often take their lead from DUK and try to refute what you try to tell them is happening. If DUK could actually take note of the real world experiences rather than seemingly out of date trials and textbooks, I'm sure we'd all be a lot happier.

I was told about 10 years lower expectancy over 30 years ago and was recently told that it's now considered to be about parity. I was diagnosed in 1978 and haven't had 'tight' control for most of that time but have no signs, as yet, that my health is suffering. I hope that my recent improvements will give me another 30 years or so with future advances.

I still think that to die 20 years early, you'd have to have really bad control and be given poor support. Plenty of them around in that situation but not inevitable by any means.

ROb


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## cherrypie (Dec 2, 2011)

Adrienne said:


> Helen, I have never ever heard of 20 years either.
> 
> The figure that I have always heard is 15 years, that is in studies and has been banded around for years.   That was from a study or studies from donkeys years ago and nothing to do with todays people with diabetes on the current regimes which allow much tighter control so in essense even that 15 year thing is now obsolete as well.
> 
> There are no up to date studies as yet.   If there were, we would know I'm pretty sure.



I did find this.

DUK 2010. Key statistics on Diabetes.

http://www.diabetes.org.uk/Documents/Reports/Diabetes_in_the_UK_2010.pdf

If you go to Pg. 14 , Life expectancy and mortality.


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## Adrienne (Dec 2, 2011)

Robster65 said:


> If you live in an area that offers DAFNE, you're very lucky. I would need to travel 50 miles each way to get on a course. After sitting on a waiting list.
> 
> There's no actual updating unless I research and then ask for futher details. Nothing's pushed. The assumption is always that I must know everything because I've been diagnosed so long. Bad assumption.
> 
> ...




Hi

I forgot but I was going to answer this as well.   DAFNE is only for adults and as Rob says if you are lucky enough.  There are waiting lists so long you wouldn't believe.

So what do the kids do?   What do the parents of the kids do?    We are not allowed to attend DAFNE at all.

If we are lucky enough to have a great dietician then that is lovely.  Some places don't even have a dietician, yep seriously and sometimes when there is one they are not diabetes specialised so don't really know much about carb counting.

So what do we do?    We self teach and teach each other (I've helped a few on here as well who haven't been lucky enough to do DAFNE).

I am totally self taught and I, along with many of my friends, help other parents when they are starting out.   I think carb counting is one of the hardest things for the parent to embark on and get their head around yet there is nothing for us at all out there.


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## Robster65 (Dec 2, 2011)

Adrienne said:


> Hi
> 
> I forgot but I was going to answer this as well. DAFNE is only for adults and as Rob says if you are lucky enough. There are waiting lists so long you wouldn't believe.
> 
> ...


 
And what are DUK doing to campaign about it ?

Rob


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## Adrienne (Dec 2, 2011)

Robster65 said:


> And what are DUK doing to campaign about it ?
> 
> Rob



Ummmm let me think for a minute............


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## Adrienne (Dec 2, 2011)

Nope nothing.   They don't seem to do a lot for children.    They will tell you they are.   They will.   However things that friends have helped on have been shelved with no thank yous or reasons.    

There have never been any big campaigns about kids in schools, they will tell you there has been but have any of you ever seen any of the huge campaigns and posters they do about children?  You know, the ones in the shopping centres.   Silent Killer, Measure Up, those type of things.   I've never seen one about children.

That is why we love JDRF.

I'm going to start a new thread about JDRF as someone said they didn't know who they were and it is implied its just for kids.


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## Robster65 (Dec 2, 2011)

I suspect you're not going to throw a surprise response into the mix !

It is all very sad to lose confidence in the association that represents us but they seem to have lost their way a bit, at least for a % of us.

Perhaps it's not just the media who have a distorted view of diabetes.

Rob


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## Robster65 (Dec 2, 2011)

Adrienne said:


> I'm going to start a new thread about JDRF as someone said they didn't know who they were and it is implied its just for kids.


 
They have a distinct image problem. I'd only heard of them through this forum last year, and am still not sure what they have to offer.

Will have a read later. Stuff to do, etc.

Rob


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## cherrypie (Dec 2, 2011)

http://www.kick-off.org.uk/timeline.php

This is a 4yr. project started in 2008 and funded by DUK.  Sheffield Hospital is running this project and it is studying carb counting for children along similar lines as DAFNE.


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## imtrying (Dec 2, 2011)

Robster65 said:


> The assumption is always that I must know everything because I've been diagnosed so long. Bad assumption.



Rob, I'm with you - this makes my blood boil. If I assume if I need to know anything, my diabetes team will tell me, but they assume I know everything, we're never going to get anywhere.

This let me down for the past 10 years.


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## trophywench (Dec 2, 2011)

I wish you would do a post about JDRF, they are a mystery to me!

(It's the Juvenile bit that makes me assume it was never intended for me, I never was a juvenile diabetic (was 22 and married) and there's not much chance of me being one now LOL  Neither had I ever heard of Ragnar Hanas' book before embracing this forum although I now understand he trained under my original consultant at the QE in Brum - and it's only in the last couple of yers I found out exactly how brilliant 'my' chap was.  What a shame he's dead because I'd have loved to have known it way back)


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## everydayupsanddowns (Dec 2, 2011)

trophywench said:


> I wish you would do a post about JDRF, they are a mystery to me!
> 
> (It's the Juvenile bit that makes me assume it was never intended for me, I never was a juvenile diabetic (was 22 and married)



It's a peculiar legacy name isn't it. The BDA changed their name to DU without any bother, but years after Type 1 was last called Juvenile Diabetes (and I'm glad it isn't any longer) they are still sticking to the old name.

I've done the JDRF 'Walk for the Cure' a few years back, and got everyone where I worked to take part as well, but immediately after they sort of dropped off my radar. Much more of a big noise in the US, of course.


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## grahams mum (Dec 2, 2011)

trophywench said:


> I wish you would do a post about JDRF, they are a mystery to me!
> 
> (It's the Juvenile bit that makes me assume it was never intended for me, I never was a juvenile diabetic (was 22 and married) and there's not much chance of me being one now LOL  Neither had I ever heard of Ragnar Hanas' book before embracing this forum although I now understand he trained under my original consultant at the QE in Brum - and it's only in the last couple of yers I found out exactly how brilliant 'my' chap was.  What a shame he's dead because I'd have loved to have known it way back)



hi i did put the discovery dates on the forum and they are really good they are not only for children they are dedicated to find a cure for type 1 , DUK is a big mix


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## Adrienne (Dec 2, 2011)

trophywench said:


> I wish you would do a post about JDRF, they are a mystery to me!
> 
> (It's the Juvenile bit that makes me assume it was never intended for me, I never was a juvenile diabetic (was 22 and married) and there's not much chance of me being one now LOL  Neither had I ever heard of Ragnar Hanas' book before embracing this forum although I now understand he trained under my original consultant at the QE in Brum - and it's only in the last couple of yers I found out exactly how brilliant 'my' chap was.  What a shame he's dead because I'd have loved to have known it way back)



I guess it was because it was started by some parents of children and type 1 was always called Juvenile blah blah blah for years because it was assumed, wrongly, that only children got type 1 and it is only in recent years that they now assume it is 40 years and under (there are quite a few older than 40 that get diagnosed as well with type 1) so that assumption of 40 is wrong as well.

I guess because they are JDRF and do a lot for children and maybe people support children's charities more they have kept with that name as that is what it was always known as and we are only a tiny part of it, its huge in the  USA.

Right signing off for a while, busy busy.   We have our own charity party tomorrow that I help organise and Sir Terry Wogan (huge name drop) will be coming.  He is our patron.   This is for Jessica's real condition, why she is type 1.

www.hi-fund.org in case anyone is interested.


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## HelenM (Dec 2, 2011)

> DUK 2010. Key statistics on Diabetes.
> 
> http://www.diabetes.org.uk/Documents...he_UK_2010.pdf
> 
> If you go to Pg. 14 , Life expectancy and mortality


but it only references the same National Framework, which has no references (or at least I can't find them)
http://www.dh.gov.uk/en/Publication...ions/PublicationsPolicyAndGuidance/DH_4002951

The DUK doc does reference a paper on deaths attributable to D. This highlights the differences in areas. As in everything the more deprived areas of the UK have far higher rates than richer areas. Newnham 17.08% of all deaths are attibuted to D, in Buckinghamshire it's 9.25%


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