Diabetes UK new campaign.

[FM001]

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🙂

 

[mcdonagh47]

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.

 

[Robster65]

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

 

[Steff]

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

 

[katie]

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

 

[FM001]

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

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🙂

 

[trophywench]

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 .........

 

[Mark T]

...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 😛

 

[Adrienne]

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.

 

[cherrypie]

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_

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

 

[Robster65]

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.

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

 

[Adrienne]

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. 😡

 

[Adrienne]

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

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.

 

[Adrienne]

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 😛

 

[grahams mum]

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.

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)

 

[Adrienne]

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 !

 

[mcdonagh47]

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 ?"

 

[mcdonagh47]

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.

 

[Adrienne]

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 ?

 

[grahams mum]

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