The Forum's future - your ideas/feelings needed!

[Amberzak]

How can we spread the word?
Depends on whether you have funding or not. Advertising I would say. And word of mouth.

What improvements could be made?
Not that I can think off the top of my head.

What do you find good about the forum?
Mix of all types on one forum. I love how people with both type one and type two chat.

What annoys you/do you find difficult to use, when using the forum?
Sometimes I miss private messages I get because it doesn't pop up to tell me.

What benefits do you think the forum brings to people?
Togetherness. Support. Advice.

How can we get people to engage more with the forum?
There will be many people who drop in and out. But I think it naturally engages people. I suppose us regular people could be conscious of new people and ensuring we engage with them. But personally I find that people often already do. It's such a supportive place.

How does it compare to other social media platforms (e.g. Facebook, twitter) when seeking/giving support?
Well, I'm on a facebook group for my coeliac, and they tend to get really impatient when new people come on and ask the same questions. People here tend to be supportive and always offer advice.

 

[ypauly]

chatroom? what chatroom? I don't rememebr ever coming across a diabetic chatroom

 

[KookyCat]

No surprise here but I love the forum, wouldn't have stayed if I didn't so here's my two pennies worth. It isn't promoted very well by DUK I found it out of desperation whilst thinking I needed to talk to other people using insulin or I'd burst. I'm not a joiner really but I really needed to know that someone understood. So on the newbie front maybe encourage discussion between the newbie folk specifically, live chat would be good but doesn't necessarily have to be. There are two strands to this experience for me, one I needed information and two I needed someone who'd been there or was there right then to reassure me that the way I felt wasn't going to lead to a breakdown. Part of being new to all this is feeling utterly overwhelmed by blood sugar, medication, life, the universe and yes everything, expressing that to a group of people who are managing is hard. I think we're a very lovely bunch but we are copers and to those not coping that might be intimidating. Same for youngsters as someone else said, it might be good to have some targeted discussions for the young adults.

I'd advertise the targeted discussions on DUK and perhaps Google or other reputable search tools and maybe have a guest speaker or two. A bit like webinars?

On the hounding front I think it's less hounding and more overwhelming for the reasons I've mentioned above 🙂. I dislike the search, I can't seem to find anything on it and I'm very impatient, I am famous for three clicks and you're out and it's just too much to trawl through most of the time, otherwise I like the format. Apps would be brilliant because I use my phone quite a lot, and maybe some way of distinguishing information posts from empathy posts in the search. By that I mean a bit like the stickies I suppose. Empathy and support is very important (says it in the name) but sometimes I just want information. Not explaining that at all well sorry.

The other thing that occured to me is a bit off piste but those members who've been here for a while and are willing could write some biographies of themselves, their experiences etc, and maybe offer some mentoring or targeted information for newbies in the same situation. So say Alison or Stephknits were willing they could write about being misdiagnosed as type 2 and the process of unravelling the actual diagnosis. Some of the people with complications could write something about that. Andy and his diet and exercise success. It could be a jumping off point for newbies. Again my brain is not making this very clear to my fingers 🙂

 

[Northerner]

KC, I take your point about it being a bit overwhelming for the newly-diagnosed or those who are struggling when they see so many people coping. However, maybe it shows a lot of people who thought their situation hopeless that there are ways of dealing with it, including perhaps a lot of things that they were unaware of, which might be reassuring and positive. I think we have always been a pretty positive forum, but without rubbing successes in people's faces or suggesting that any individual has all the answers, if only you do as they do.

The biographies idea is a great one 🙂

Regarding chatrooms - I'm really not keen for a few reasons. They are very difficult to moderate, and time-intensive for whoever is moderating, plus, although some may not like the 'chit-chat' threads particularly, I know there are a lot of people who enjoy reading them, even if they don't directly participate. As is often said, diabetes can be a very isolating condition, and I think a lot of people appreciate some 'normality', that it is not all about diabetes, we are all just ordinary people from all walks of life who happen to have something in common. I think it adds to the 'community' feel of the forum, as long as it doesn't become cliquey or exclusive. If such discussions took place in a chatroom they would be lost to the forum. Chatrooms are also dependent on people being available and joining in at the times the chatroom is open - it can be dispiriting if there's no-one there to respond!

Certainly, I think we would benefit from greater DUK involvement, whether via targeted discussions with a professional answering queries, or on a particular topic, such as complications, or sport and diabetes, family and friends support etc. And we definitely need greater promotion. DUK has something like 150,000 supporting members i.e. people who pay a subscription to the charity, and I often wonder how many of them are unaware that we even exist - getting a regular word out to them, whether via Balance or a newsletter, I think would be a 'quick win'. Then we could work on attracting the other 3m who would beneft from us as a resource... 🙂

Keep 'em coming folks! 🙂

 

[DeusXM]

Chatrooms are also dependent on people being available and joining in at the times the chatroom is open - it can be dispiriting if there's no-one there to respond!

The other thing is there's such a thing as responding too quickly, too. I know a lot of people come here wanting answers quickly, but diabetes is pretty complex and I think most of us when we reply put quite a bit of consideration and thought into what we're posting.

Because a chatroom's real-time, you can't really get across your point unless you use very short sentences and then you're missing out a ton of stuff as more questions come. Also, from a selfish point of view, I know I suffer badly from verbal diarrhoea so I find chatrooms difficult 😱

I think we would benefit from greater DUK involvement, whether via targeted discussions with a professional answering queries, or on a particular topic, such as complications, or sport and diabetes, family and friends support

That depends. I know this board is sorta independent but I worry that if it was more involved with DUK whether that might affect the discussion. At the moment we can be pretty wide-ranging and there is a healthy skepticism about some of the 'traditional' advice you get from the NHS, DUK etc. Closer involvement from DUK might mean we start to lose the sorts of discussions that make fair criticism of the charity's (or anyone else's) conduct or advice. I'm all for bringing more people in but if that means we can no longer have free and frank conversations, I think that's a negative.

 

[Northerner]

...I know this board is sorta independent but I worry that if it was more involved with DUK whether that might affect the discussion. At the moment we can be pretty wide-ranging and there is a healthy skepticism about some of the 'traditional' advice you get from the NHS, DUK etc. Closer involvement from DUK might mean we start to lose the sorts of discussions that make fair criticism of the charity's (or anyone else's) conduct or advice. I'm all for bringing more people in but if that means we can no longer have free and frank conversations, I think that's a negative.

I have already discussed this with DUK, and they agree that they should not be immune from the kind of criticism that appears here. It keeps them on their toes, and in touch with what actual people with diabetes are thinking - it would also give them the opportunity to respond and put their point of view, or correct anything which was incorrect or a misconception. I've never encountered any censorship from DUK, however harsh the criticism may have been, and do not expect any in the future - as you say, that could diminish the value of the forum and stifle discussion 🙂

 

[robert@fm]

As well as the broad knowledge base and the community, another thing I like about this forum is that there's often something funny or cute to cheer me up. 🙂

 

[Flower]

The one thing I'm mindful of is posting about serious complications in the General Messageboard. I realise there are already a number of categories but wonder if a specific Complications category would be better so that people can choose to read posts or steer clear.

I find it such a help to write down what I'm going through with my legs and sight loss and have had brilliant support and help but I'm very aware that a lot of newly diagnosed register and ask for help. I don't want the problems I'm dealing with to terrify people who are already coping with a lot of new medical information.

Apart from that I'm so glad I joined. You do a fantastic job Northerner and the other moderators 🙂

 

[Northerner]

The one thing I'm mindful of is posting about serious complications in the General Messageboard. I realise there are already a number of categories but wonder if a specific Complications category would be better so that people can choose to read posts or steer clear.

I find it such a help to write down what I'm going through with my legs and sight loss and have had brilliant support and help but I'm very aware that a lot of newly diagnosed register and ask for help. I don't want the problems I'm dealing with to terrify people who are already coping with a lot of new medical information.

Apart from that I'm so glad I joined. You do a fantastic job Northerner and the other moderators 🙂

It is tricky, Flower. I think that, on the whole, it is better that the full spectrum is available in the General Messageboard - I'd be loath to create a separate category, as there is then the potential that a) people might simply avoid reading posts there, and b) the person posting about the complications may not get the wide-ranging support they currently do. There is something available in the current software called 'tagging', I might investigate and see if this can be used in some way - might also provide a way of separating 'empathy' posts from 'information' ones, as per KookyCat's suggestion.

I've personally learned a lot from reading others' experiences with various complications, and I admire the courage of people who are prepared to discuss them. 🙂

 

[stephknits]

I like kooky cat's idea for biographies.
Would be happy to help.

 

[HOBIE]

I like kooky cat's idea for biographies.
Would be happy to help.

How much time have you got After 48yrs T1 I could write a few books & tell a few tales

 

[Aoife]

I've only skimmed through the thread but as far as social media goes Twitter has a huge diabetic community, I think tapping into that could create a lot more traffic for the forum for example GBDOC have weekly tweetchats, if the forum had a twitter site just a few tweets in the tweetchat would direct loads of people to their profile page and therefore the forum. I have no idea bout facebook as I dont use it!

 

[Northerner]

I've only skimmed through the thread but as far as social media goes Twitter has a huge diabetic community, I think tapping into that could create a lot more traffic for the forum for example GBDOC have weekly tweetchats, if the forum had a twitter site just a few tweets in the tweetchat would direct loads of people to their profile page and therefore the forum. I have no idea bout facebook as I dont use it!

We do have a twitter account, it's @DSForumUK, perhaps I should use it a bit more often! 🙂

 

[qwertyfan]

Certainly, I think we would benefit from greater DUK involvement, whether via targeted discussions with a professional answering queries, or on a particular topic, such as complications, or sport and diabetes, family and friends support etc. And we definitely need greater promotion. DUK has something like 150,000 supporting members i.e. people who pay a subscription to the charity, and I often wonder how many of them are unaware that we even exist - getting a regular word out to them, whether via Balance or a newsletter, I think would be a 'quick win'. Then we could work on attracting the other 3m who would beneft from us as a resource... 🙂

Keep 'em coming folks! 🙂

they'd have a few more supporting members if their online joining worked!
I tried a few times, and it failed on the direct debit page each time.
I could phone up I guess, but that just presents another hurdle ...

 

[qwertyfan]

I do like the biographies idea also.... one of the threads I found most useful was the one about how many symptoms were present (and missed) before diagnosis.
It's like a great tick off list. Perhaps we could have one about post diagnosis too, then save them in a section, more concise for new members/newly diagnosed people as a quick starter?

 

[Northerner]

they'd have a few more supporting members if their online joining worked!
I tried a few times, and it failed on the direct debit page each time.
I could phone up I guess, but that just presents another hurdle ...

I will pass your complaint on!

I do like the biographies idea also.... one of the threads I found most useful was the one about how many symptoms were present (and missed) before diagnosis.
It's like a great tick off list. Perhaps we could have one about post diagnosis too, then save them in a section, more concise for new members/newly diagnosed people as a quick starter?

Good ideas, I can see this being very helpful and a great addition to the forum. I will ponder how best to implement it 🙂

 

[FergusC]

the forum strengths are the strong base of REAL diabetic people with REAL experience of the problems of D, and how they helped conquer it.

 

[Northerner]

the forum strengths are the strong base of REAL diabetic people with REAL experience of the problems of D, and how they helped conquer it.

Absolutely spot on Fergus! 🙂

 

[KookyCat]

What about asking if Tesco can advertise the forum (in stores, or on their website not TV ads or anything 😱) their partnership with DUK is in full swing and they could maybe include the forum in the events they do and on leaflets and the like?

 

[Northerner]

What about asking if Tesco can advertise the forum (in stores, or on their website not TV ads or anything 😱) their partnership with DUK is in full swing and they could maybe include the forum in the events they do and on leaflets and the like?

Good idea 🙂