Can you help us improve our information?

[Diabetes UK]

Could you help us improve our information for people with diabetes?
We want to make sure that people with diabetes, or people close to them, are involved in the process to make our information as useful as possible.

We’re looking for people who have recently found out they have diabetes, to feed back on the information we provide. We’re specifically looking for your thoughts on two new videos we’re making, to help people understand what Type 1 and Type 2 diabetes are.

If you would like to get involved, please get in touch at web-updates@diabetes.org.uk.

 

[HOBIE]

50 odd years & you don't Know ?

 

[Mark T]

I think the first mistake is assuming there is only Type 1 and Type 2. No doubt the Type 2 video will focus on those who have the insulin resistance form only and forgetting that Type 2 covers an array of different things.

 

[grovesy]

Don't forget the Type 3 people.

 

[HOBIE]

I would like to have a job at Duk, You spend your day getting other people to help you. This is a SUPPORT FORUM for US & not a advert for people. YES I am very well thanks. I have been to work today. 🙂

 

[Robin]

I would like to have a job at Duk, You spend your day getting other people to help you. This is a SUPPORT FORUM for US & not a advert for people. YES I am very well thanks. I have been to work today. 🙂

How does DUK know that it's providing the sort of information that people want? It asks the sort of people who will be using the information, ie, people with diabetes. Where is there access to a huge number of people with diabetes that they could ask? Why, here on the forum, of course!

 

[SB2015]

50 odd years & you don't Know ?

There have been a lot of changes over the fifty years. I am amazed at how things were before I was diagnosed. People access information in different ways, and it is easy for those buried in the daily resources to loose sight of what it is like for people new to it all. I shall look with interest at what is posted as a result of this call for help. It could help to inform any support that I try to give others. It will be good to see some feedback on here from this study.

 

[everydayupsanddowns]

Don't forget the Type 3 people.

And MODY and LADA too of course!

But DUK must inevitably concentrate on the most common types I suppose - though it would be welcome to have the other types mentioned more frequently, I think.

 

[trophywench]

What's this about 50 years?

HG Wells and Robin Lawrence founded it (the British Diabetic Association which comparatively recently renamed itself DUK) about 90 something years ago!

The BDA were the only source of info written for patients in 1972 which of course isn't even 50 years ago - and it's a ruddy good job they do constantly update the info, isn't it! Imagine being told NOW you always have to eat a set exact amount of carbs at the same set times every bloomin day of your life - and boil up your pee in test tubes too.

Much better to get fairly recently diagnosed folk to look at it and comment on things that were missing for them, and they wished they'd known about earlier.

 

[Pumper_Sue]

50 odd years & you don't Know ?

Very odd in your case I would suspect. 🙄😛

 

[Bloden]

50 odd years & you don't Know ?

Any attempt to improve information, especially by asking those in the know (us lot!), is alright by me.🙂

 

[Ljc]

I think this is a brilliant idea. Going by what I read on here 20 + years ago the advise I was given was far better and of far more help than many newly diagnosed with T2 seem to get today.

 

[DaveB]

I think the first mistake is assuming there is only Type 1 and Type 2. No doubt the Type 2 video will focus on those who have the insulin resistance form only and forgetting that Type 2 covers an array of different things.

Hi I agree with some of the other posters about not being too rigid about 'Types'. One of the two reasons I resigned from DUK last year is that it didn't recognise LADA and was over-rigid on what T1 and T2 were. Anything that can help bridge that gap would be useful especially for newbies who may well have been mis-diagnosed by their GP as I was.

 

[MikeTurin]

My 2¢ on deneral advice

There is a spectrum of conditions. Type 1 and Type 2 is a rough taxonomy.
They have a lot of similarities but a lot of differences.
If we put in the mix LADA and MODY we have a broader spectrum of types.
Next for type 2 we could have different treatments with exercises, weight loss and diet only,
with added metformin as medication,
with added medicined that aren't causing hypo
with added pills that could cause typo
with added insulin.

Lowering the carbohydrate intake to control the weight should be ok with metformin only, but with insulin both for type 1 and 2 should be followed by a dose adjustment. Using a meter on hypo inducing treatment or not has to follow different strategies, so using a traditional vs flash vs contiuous meter, and so on.

But the thing that have to pass is that for everyone diet, weight control and exercise are paramount, and that it's not only sugar that is a problem, but also starches especially refined starches and that people could react differently on the same food.

 

[Diabetes UK]

Diabetes information changes frequently and we update our material to give the best information we can.
We also value the opinions of anyone who may use our information, so we reach out for input, to get a broader and more balanced result.

There is of course no obligation to be involved, but for those who may wish to offer their insight we would love to hear from you.

Great to hear your thoughts on diabetes types. We currently have some basic information on less common types but hope to expand this at some point, so good to get your input on this too.

 

[HelenM]

I think its really important that DUK makes clear that you don't have to be young to get T1.It is often the first port of call for people who are worried they may have diabetes. It certainly was for me when I had suspicions, I was living in a non English speaking country so it made it a very important source of information.
I was not overweight, so I read that I was unlikely to have T2,(although I now know there are many normal weight T2s) and in any case if I did have T2 then the first treatment was diet and I already ate very healthily. I was far too old to get T1 which occurred mainly in the under 25s and in any case it had a rapid onset. I ignorred my worries and eventually ended up in hospital with DKA .I was there for 10 days and left with insulin pens and a diagnosis of T1
(really a 'classic' case of LADA)
This was 15 years ago and I think the page on symptoms has improved since then. However, I still feel that it needs to be made much clearer that there are many adults who develop T1 and that in adults the symptoms may not have a rapid onset. Your own report makes it clear that in 2011-12, 20% of T1s were diagnosed when above the age of 40. https://www.diabetes.org.uk/about_us/news/1-in-5-cases-of-diabetes-diagnosed-in-the-over-40s (that figure may be low since there are probably still a number of others who are misdiagnosed as T2s needing insulin)

 

[AndBreathe]

Not so long ago, I was in a meeting discussing a proposed booklet, designed to help those newly or relatively newly diagnosed T2. There were a small number of people who had been diagnosed T2 there. One of the most universal real turn offs, universally across the group, was the use of almost solely very overweight individuals, generally wearing ill-fitting clothing and waddling around.

That isn't in any way meant to be insulting to those who do (or did) carry some pare pounds around their diagnosis, it was as it was. Perpetuating the all T2s are salad dodging, anti exercising, over eaters is highly offensive. The reaction of a couple of those reviewing the content was quite simply to push the booklet away and had to be persuaded to move forwards from there.

I do think it important that those being diagnosed are being empowered to educate themselves, rather than be told they will learn on the various courses, such as DESMOND.