What's your view on the diabetes online community?

[DCUKMod]

@tim2000s - To an extent, aren't you singing to the choir on here? If people felt it wasn't for them, they'd drift away?

Of course, the age old issue is how to engage with those who don't engage for the million and one reasons that might be.

Have you approached Diabetes UK about any of this, bearing in mind their member offering is offline as well as online? For instance, I have no idea how many issues of Balance Magazine they send out each issue, but it's quite a few.

My experience, from a long discussion with a couple of Diabetes UK movers and shakers, is that they're not too special at drilling into those member resources for feedback. It is a great thing to have.

 

[ringi]

Personally I don't consider Diabetes UK to be part of the solution and will therefore advoid most event/forum that they arranged. This is due to them acting as the macketing department for suger drinks makers and inslin makers, both that are harmful to most people with type2.

I believe many people with type2 who have discovered effective online forums will also self exclude themselfs from responding to Diabetes UK surveys.........

 

[DCUKMod]

Personally I don't consider Diabetes UK to be part of the solution and will therefore advoid most event/forum that they arranged. This is due to them acting as the macketing department for suger drinks makers and inslin makers, both that are harmful to most people with type2.

I believe many people with type2 who have discovered effective online forums will also self exclude themselfs from responding to Diabetes UK surveys.........

There are a lot of people out there with diabetes, who may, or may not be engaged in online communities. What I am suggesting is a potential way to reach out to those who don't engage. That might help find out why they don't engage and what their barriers might be.

 

[tim2000s]

@DCUKMod thanks. I think this is a very interesting group, as it's technically part of the "Diabetes Online Community" by definition of what that means, but it's not always acknowledged in some circles that online communities don't exist only on Facebook, Instagram and Twitter.

The feedback in this thread backs up my suspicions that people are happy participating within a forum such as this, without wanting or needing to be online in other forms of social media, and aren't especially bothered about being brought under the wing of a different flavour.

The question that had been raised was whether those who currently participated in the "Diabetes Online Community" are inclusive enough and why some people.werent participating, to which some of us said "are you sure you're looking in the right places?"

 

[ringi]

The other questions is why are we not seeing 100s of new members every week given how common type2 diabetes is.........

 

[Listlad]

The other questions is why are we not seeing 100s of new members every week given how common type2 diabetes is.........

Many don’t find their way here.

This diabetes community is not as well known as we who are members might think. From what I have seen.

 

[DCUKMod]

The other questions is why are we not seeing 100s of new members every week given how common type2 diabetes is.........

Although it is a glib, throwaway remark, you don't have to join to read.

 

[HSSS]

Right now there 66 members online and 695 guests. So perhaps there’s a lot of unregistered readers out there benefitting without us knowing about them.

 

[ringi]

The issue is that the only way to find out why people are not feeling welcome in online communities is to ask people who are not on this forum...... With Type2 it is likely that only GP nurses will get to meet most of these people as most people with type2 never go to any events.

 

[Listlad]

Why would the T2 husband of one of my surgery nurses not be part of an online diabetes community?

 

[HSSS]

Why would the T2 husband of one of my surgery nurses not be part of an online diabetes community?

Because unless they are inclined to turn to the internet for advice support (regardless of subject matter) then they won’t even be looking. Many people have never looked at a forum online. Then they’ll likely be relying on the nurse/gp/ media.

Because if the nurse/gp have embedded the idea it’s progressive and nothing much to be done other than take meds and lose weight (which if they follow advice they’ve probably already tried and failed the eatwell diet) then they won’t know there’s any other options to go looking for in the first place.

The only way to reach those less internet savvy/reliant or who just accept the futile message is via other forms of media, through better educated medical staff, through word of mouth, through leaflets etc etc.

 

[DCUKMod]

Why would the T2 husband of one of my surgery nurses not be part of an online diabetes community?

Perhaps he doesn't consider he needs it, when he has an in-house nurse to advise him.

 

[NicoleC1971]

Knowing a few type 2s (dad, father in law and my walking type 2s), all of whom are web literate I think they tend to want to forget about their diabetes whilst they can still take their pills and are unaffected by complications.
Something said by Dorothy Parker re hor-to-culture comes to mind and I think there has to be enough motivation upon diagnosis then a referral to online resources like this or the NHS low carb app but whilst the messages out there are so confusing people are going to be left floundering thent taking the easiest if least successful path (drugs),.

 

[Hotpepper20000]

I was shocked and mad that I had Type 2 when I was diagnosed. But I finally had answers to why I was feeling so awful for so many years. Why, inspite of exersise I couldn’t loose weight and why I was tired all the time.
So I went searching for answers beyond my Drs. I had little faith that they could help, because I had been let down for so long.
The success stories on this forum showed me it was possible.
I have referred a few people to this forum but none have looked. They say they don’t have time.
I keep saying that the people on here are the exception to the norm.

 

[Listlad]

Because unless they are inclined to turn to the internet for advice support (regardless of subject matter) then they won’t even be looking. Many people have never looked at a forum online. Then they’ll likely be relying on the nurse/gp/ media.

Because if the nurse/gp have embedded the idea it’s progressive and nothing much to be done other than take meds and lose weight (which if they follow advice they’ve probably already tried and failed the eatwell diet) then they won’t know there’s any other options to go looking for in the first place.

The only way to reach those less internet savvy/reliant or who just accept the futile message is via other forms of media, through better educated medical staff, through word of mouth, through leaflets etc etc.

Exactly.

There are those that believe they are doing the right thing, even though they aren’t.

 

[Listlad]

Perhaps he doesn't consider he needs it, when he has an in-house nurse to advise him.

Probably.

The best bit was when she told me she had to scold him for eating 5 slices of toast and she asked why on Earth he had done that and his reply was that he was hungry.

 

[Deleted member 308541]

As one of the largest mixed diabetes communities, I wanted to gather your thoughts on this, and whether you think that

A) there's an issue here
B) What you'd like to see change
C) Do you want to be involved in Twitter/Instagram or Facebook more heavily?
D) Would you volunteer to be sponsored to attend diabetes conferences?

A: What issues are here?
B: Latest XenForo forum software update comes to mind.
C: A big NO to Twitter, Instagram, or Facebook involvement.
D: I never volunteer, my time is worth money.

 

[Grant_Vicat]

Many don’t find their way here.

This diabetes community is not as well known as we who are members might think. From what I have seen.

I agree entirely. I discovered it by chance, thanks to meeting up with @vic hill at a talk I gave in Bury St Edmunds.

 

[Grant_Vicat]

I was shocked and mad that I had Type 2 when I was diagnosed. But I finally had answers to why I was feeling so awful for so many years. Why, inspite of exersise I couldn’t loose weight and why I was tired all the time.
So I went searching for answers beyond my Drs. I had little faith that they could help, because I had been let down for so long.
The success stories on this forum showed me it was possible.
I have referred a few people to this forum but none have looked. They say they don’t have time.
I keep saying that the people on here are the exception to the norm.

Similarly, when I was Type 1 my GP asked me if I would mind having a newly diagnosed Type 1 (usually mid teens) contact me. None ever did.

 

[ringi]

Because unless they are inclined to turn to the internet for advice support (regardless of subject matter) then they won’t even be looking. Many people have never looked at a forum online. Then they’ll likely be relying on the nurse/gp/ media.

I think there is a reason many of us are from a engineering and IT background were Internet forums (and newsnet) have been a way of life since before the Web was invented.