Diabetes UK new campaign.

[HelenM]

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 Even then it is out of date.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)

 

[Adrienne]

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. 🙂

 

[trophywench]

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.

 

[Robster65]

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 ?"

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

 

[cherrypie]

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.

 

[Adrienne]

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

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.

 

[Robster65]

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.

And what are DUK doing to campaign about it ?

Rob

 

[Adrienne]

And what are DUK doing to campaign about it ?

Rob

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

 

[Adrienne]

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.

 

[Robster65]

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

 

[Robster65]

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

 

[cherrypie]

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.

 

[imtrying]

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.

 

[trophywench]

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)

 

[everydayupsanddowns]

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.

 

[grahams mum]

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

 

[Adrienne]

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. 🙂

 

[HelenM]

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%