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Diabetes UK new campaign.

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elaine1969

Active Member
Relationship to Diabetes
Parent of person with diabetes
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.😡
 
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.
 
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
 
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?
 
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!
 
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!
Click to expand...

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

Rob
 
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 😡
 
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.
 
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 ?
 
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.
 
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.
 
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!!🙂
 
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!!🙂
Click to expand...

Hi Elaine,
That's a good result tell Kate well done :D
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)
 
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).
Click to expand...
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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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 😡
 
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.
 
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
 
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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