Do online communities help?

[Administrator]

Following on from this article:

http://www.diabetes.co.uk/news/2010...nuinely-help-diabetes-sufferers-95410979.html

Do diabetes communities like this one have a genuine role to play in helping people with diabetes?

Answers will be used in our community feature this week. From an administrator perspective, I can see how they help, but I think there is a flipside.

Check our current features here: http://www.diabetes.co.uk/features/ and please leave a comment! If you have a question, however, please use the forum as people will get back faster.

Regards,

Admin

 

[sugarless sue]

As Monitors we like to make sure that the information given on the forum is factual, correct and up to date.

This forum gives a balanced view across the spectrum of diabetes, not just on one aspect of diabetic care.

The help and support on this forum is excellent between members and many have benefited from the experiences, good or bad, of other members and have become confident enough in their own diabetic management to then advise others.

In this way we help self empower many members to cope and manage their own diabetes and to be able to ask their HCP's relevent questions on their diabetes.

 

[Debloubed]

that is a hard question to answer without getting emotional! Obviously, there is loads and loads of great advice on here, everyone has something different to bring to the table which is great as we can all learn from that. It can be hard when you are criticised for your particular advice especially if you know it works well for you. But on the flip side of that, that is what makes it a good forum, all the different opinions! I know I have learned a lot but I also have enough confidence with my Diabetes control to know when to not take advice.....if that makes any sense :lol:

The best part? Reading that someone has got the help they need off the back of advice from this forum. Can't ask for much more than that.

 

[Administrator]

Thankyou for these answers! Does anyone have anything to add, as we are shortly going live with the feature? Please leave a comment when it's up.

 

[cugila]

Following on from what has been said previously I think that this Forum in particular has to be the best, most open, honest and balanced place you are ever likely to find on the net. A fabulous resource.

There are all manner of opinions given on here, some factual, some anecdotal. All are worthy of inclusion and of consideration. You can ignore things, take things on board, or just ask questions to clarify what has been said.

As a downside, It is very difficult sometimes for the context of a post to be put over properly. The written word unless you are a poet is notorious for that. There have been times where people have read into a post something that was never intended or meant. So it is good that we can talk it over on the board and get any problems sorted.

I get emotional about this place because this is the one place I came after 12 years of misinformation from HCP's and turned my life around. Got great help and advice from good people. That help has probably saved my life and I am sure countless others. Long may this Forum prosper and go on to bigger and better things.

Ken

 

[jopar]

In the main how good and helpful any online community is... Is totally dependant on how it is managed by the moderation/Admin team..

A online support community based on providing support for a medical condition, needs different abututes to it's moderation/Admin team than that of a supporting the use of the lastest software...

A good community, will be quite well balanced, with debate opposing view points, along side a moderation/admin team, who can not only ensure that the normal bullying, unethical tactics, are kept off the forum, but also spot dangerous information being given, and removed off the forum out of harms way.. They need to be able to pick up valuernable members, who ask for advice and it obvious that the information being given, is totally unsuitable, unsafe and probable leading not only leading to protential suffering but in fact leading the member into dangerous situation/harm..

Online comminties are and will always be open to several valuernabilities,

Varication of information provided
Ability to create multi-user names, which can be used to unfairly under-pin a dabate or information
No control, how any individual will percieve or understand information given..
and several more..

But over all, for the right person then a comminity can be a very good source of information which can be benifcal to them..

 

[IanD]

The strength of the forum is that questions can be answered from experience, & answered quickly.

Those answers need to be weighed as they may be from limited experience, or conflicting, but even then the information bank is expanding.

This forum certainly helped me - it showed the way to restoring my active life when I was contemplating becoming disabled. That's why I stay here - & bang the reduced carb diet drum.

 

[Dippy3103]

Where do i start???

This forum has been invaulable to me in so many ways. I have learned more than i have from the NHS. I can ask questions when they ocurr to me instead of waiting till i see a HCP and rememebering to without feeling embaressed at such a silly/petty question. I know that there are a lot of us around... I could go on forever.

It's a tool for helping to manage ones diabetes.

 

[Catherine_h]

This forum and the people here helped me so much!

Before being diagnosed with type 1 I was very ill ,the lovely people of the forum advised me to ignore the advice I had been given from the NHS and go back to hospital!

In short, I feel the forum save my life!


Catherine

 

[mazbee]

I was diagnosed back in December 2009
Although I had advice from the DN, the dietician and the Desmond information day, I have learned more from this and similar forums on how to regulate my BG and try different diets to find one that suits me, and has helped me stabilise my BG.

This site has given me far more valuable knowledge than my GP practice.
I feel more informed of diabetes with all it problems and complications, and how armed with others knowledge they pass on, I hope to be able to live a normal life as possible for many years to come.

Also the community is active 24/7 and offers help and advice outside of GP practice hours for those who are worried, even if only directing others to A&E at times.

 

[Donald]

I find on Fourms like These is the experience's of the members help.I know everone is different but if someone signs in worrying about something members can help to point the way or give advice to see there diabetic team or doctor.I'm sure you know what I mean

 

[foxglove]

As a very new member may I say how delightful it is to be able to get into the various items soo easily - for me that makes it excellent because I know I'm going to get the advice I need quickly and promptly! The reason I say this is because having been to another forum I found the logistics really hard to use. That, to me, is half the battle of being able to successfully use it.
Thanks, to all involved in the set up.

 

[jameshallam]

When I was first diagnosed I found this place was a brilliant resource that went far beyond the standard leaflets given out at hospital. Being an engineer I was quite intrigued by certain aspects of my new condition and was keen to find out more. Obviously everything on the forum isn't gospel and due to the nature of diabetes itself, managing it is "an art not a science". so long as people understand this I think it is a brilliant place!

 

[ham79]

This forum has been a life line with all the mixed advice that is freely banded around there is an honesty and real view of diabetes on here. There is also the added safety net of an amazing admin who add a balance to keep it real and safe with no junk well done and thank you

 

[Wendy53]

Hi
Yes This online community definitely helps
I have found this forum a massive life line. My husband recently diagnosed with type 2 diabetes and myself with pre diabetes. I was in a state of shock. I have come on here and have been given a lot of information that is not available from the health professionals that we see. I have then been able to research for my self and find out what is useful to us and what is not. With in a very short space of time I feel we have gained a massive amount of help. Given advice about diet information on books I now feel more confident that we can manage this disease.
Our blood sugars are now more under control and the state of panic has gone.
I do not feel alone with this any more.
Hope this helps as I am not very good with expressing myself.

Wendy

 

[Ardbeg]

This site rocks..............

But the moderators SUCK. :twisted:

Only kidding Sue & Ken.............you know I love you both. :wink: :lol:

 

[pang3e]

As a silent member for around 6mths and having finally joined properly a few days ago, I can now add my comments in saying that this site has been extremely useful for me understanding my diabetes. Although having been diagnosed five years ago, most of it has been spent in ignorance and denial and it's only been since my health has deteriorated generally that I have been regularly entering this site and reading other comments about medication, managing diabetes with medication and low carbs etc that I am finally coming round to the idea of taking full responsibility for my own health!

 

[dragongirl]

Online communities in general work according to what people put into them, who belongs, and also how receptive regulars are to newcomers. Occasionally I post a question on the yahoo Mac forum when in need - I don't feel terribly welcome although I get answers usually. Mostly I don't know enough to contribute at their level of expertise. But that's okay. I use it intermittently. I belong a writers' forum for casual chat on things of joint interest - I'm not on there daily or anything because it's not life or death. Here, I feel welcome, I have found life-saving info (which, together with the internet to follow up topics if I think I should check anything, is brilliant) and perhaps leaving more specialist knowledge to others to dish out or comment on. This makes it a welcoming place for newcomers and also a daily treasure trove at times for all of us. So - different online communities have different strengths and weaknesses, different amounts of "attendance" required/needed, and different outcomes. The ones that don't measure up to perceived need don't get used and fall by the wayside. Survival of the fittest, I say (whilst aware of the irony of that phrase in this particular forum!).
DG

 

[dingbat]

In my very humble opinion, sometimes forums can end up as a home for lost souls simply because of the type of people who are attracted to them.
There can be some v v v useful stuff there if you can wade through all the "Ive got this" and the "didn't work for me's", all the "must do this" and musn't do that's"
To state the obvious we are all physically different, emotionally different and have differing circumstances and there is seldom a one fix all answer.
So if the 'buyer bewares' and your personal filter is set from moderate to high then yes it can be a very useful place to glean information.
Having said that I do use the forum but tend to stick with the factual stickies and links and 'expert' advice. But there can be no substitute for hard facts and maybe we're all a bit scared of them.
Huge thanks for the moderators time and efforts and long may they continue, sorry if I seem negative, I'm not, just realistic.

 

[carty]

When I was diagnosed I knew nothing about DB I had never been ill ,onley ever been to GPs when pregnant.I had a look on the net and frightened myself to death :mrgreen: .Then I found this forum and being a sceptic I looked at lots of posts I realised I could get help here even though I dont agree with all posters it has given me confidence to take charge of my DB .Lots more I could say but thanks will do for now. CAROL