The Forum's future - your thoughts please!

[everydayupsanddowns]

One current weakness is the Private Messaging system which facilitates cliques and alliances being formed behind the scenes. Let's have an open, transparent group with no secret messages out of sight of other members.

I send and receive almost no PMs but would really miss the ability if it were removed. Sometimes I've just wanted to offer some quiet support to someone.

I tend to agree with Rob about the 'perception' of a tight knit group. I've not posted in St Bedeia either, but its existence does not worry me. Nor do I find myself glowering sideways at those that enjoy swapping silly gags in there believing them to be somehow excluding me from anything. I'm glad it's there for them. If I want to join in I will. If it takes me a while to work out what's going on I'll try to think of slightly funnier things to say. Same with 'off topic'. I rarely read much there let alone post, but it's existence doesn't make me feel left out.

 

[Mark T]

Yes, I do think there is still a place for such a thread and that a periodic revitalisation is necessary so that appears 'new' to everyone and they feel more encouraged to participate 🙂

Well I did share an idea with Andy HB for this; although discussing it would probably go off topic here 🙂

But I am happy to put together some suitable pictures for the thread start

 

[Tina63]

I think the PM bit is vital. I offered some near expiry BM strips to anyone who could use them a few months ago. We used the PM facility to exchange addresses. I am sure the lady concerned wouldn't have wanted her home address posted for all and sundry to read.

 

[imtrying]

Here's my views for what they are worth!

Positives

1. This forum is totally full with all sorts of different people, which is what makes this work. From the more technical-diabetic-minded, to those that just are here to give support and reassurance....it's the balance of detailed scientific replies and those of just experiences that makes it what it is.

2. I think this forum is very welcoming. I understand the comments about seeming a bit clicky, but I think when you first join something you always will feel like that. Overall, I don't think the forum is.

3. There's something for everyone...whether you just want to read what people write, or just make posts and not look at anyone elses, or you want to meet other diabetics, or you want to learn things in more detail, you get to pick and choose what you do, and people get to make this forum what they want it to be to them.

4. It's the most support I've ever had, and I think it's a life saver for so many of us on here, whether experiencing problems ourselves, or wanting to ask questions as a parent. You get it all here.

5. There's always someone here, and someone always has an answer, and if you don't understand the answer, there's always someone who can put it in terms you do! There's so much I hadn't known when I joined this site, and over the months I have really had to rely on the lovely people on here to help me manage my diabetes with posting blood results and carbs consumed etc and got lots of very useful advice.

Things that may be nice to improve or change

1. I think a chat room maybe for when people just want to talk, rather than post something pertinent would be a great idea. (I don't know how easy this is).

2. I have to say i feel VERY strongly about this - I really, really, do NOT want this to turn into the DUK facebook page. Some of the comments on there are absolutely disgusting and I hope we would never be a part of it, or put ourselves at risk to be anything like it. We have a great forum that 99% of people are happy with 99% of the time...you can't get better than that. If it is the route people decide to go down, please just do the research to make sure it doesn't end up the same. People love this place, and we have a good name. I'd hate for that to ever be in jeopardy.

3. I do agree with what some others have said that if you don't come on here every day, it's really difficult to catch up. I suppose it's a really good thing that so much goes on, but I suppose for some it may seem hard or put people off if they don't feel they can keep up (I have no idea what the answer to this is!!! or if there even is one!).



I completely agree that we need more advertising and as I've said ever since I joined this forum - being part of this forum should be part of your care and treatment. It's invaluable. Simple as that. BUT...I personally don't think it would be a good idea to be seen as an arm of DUK. If there's a way we can keep our own identity, and not become 'associated' with them, that would be brilliant.

I also have no idea what this island thing is that you're all talking about lol I shall go and investigate now.

Sorry for the long post, but hopefully there's a little bit of something useful in there. 🙂

 

[RSVP]

The only reason the pm system may appear to be cliquey is due to people mentioning the pm's in threads. This makes other seem out of the loop.
There isn't a need imo to tell the world I've pmd you.

I have & do feel like an outsider. Maybe my own fault I don't post enough and I am just a partner, but I know Rob's diabetes nearly as well if not equally as well as he does. But because I aint got Type 1 in my profile i don't count 🙂

As an aside could do with a Carer+type2 type thing for my profile 🙄

I'll shut up know and scurry back off to my corner & none of this is really answering the opening post

Sarah

 

[David H]

Let me give you a bit of background to this. The Island was a follow-on to previous threads (The Banting and Best pub and the Glucophage and Glargine, and before that the 'one-liners' threads). Early on in the forum's 'life' it was noticed that some of the more prolific posters were posting one line responses to normal threads and things would swiftly go off topic, which can be very frustrating for people who have hoped for an appropriate response to their questions. It was requested that any such comments and conversations were moved into a single permanent thread which could be about all and sundry, hence the introduction of these threads. However, as the forum has matured things have changed and so current incarnation St Bedeiea is much less used.

I used to use dLife, an American forum and they had something similar called the Coffee Lounge, but that seemed eventually to go the same way, so maybe it's something to do with the way things naturally move on 🙂

Hope this explains a bit! 🙂

Thanks for the explanation, I honestly thought it was a Virtual story like add the next bit, the subject title was/is a bit confusing!

I think a new thread with a new title should be started and on the first page explain what the thread is about even have a suitable title 'The Chat - a - Newbie - Choo Choo'
The more inclusive it appears the better and the more traffic it will attract.

 

[Northerner]

In the 18 months since becoming diabetic not one Diabetic Professional (Consultant, Nurse, Dafne) have mentioned this forum let alone recommended it. Perhaps these people should be targeted more. This could be via Diabetics UK or perhaps we could all take more responsibility and sell the forum when we have a consultation. Perhaps a PDF listing the benefits provided.

As someone who doesn't have the opportunity to visit the site daily it would be good to have the ability to list "areas of interest" so that when I visit the site rather than paging through days of posts I may not be interested in I am presented with a list of threads you may like to review.

I think some of our members were directed here by their team, but I'm pretty sure that there may be a reticence to recommend using the internet for support by some teams, or perhaps it's something that they are simply not aware of. Hopefully, we can make them more aware and also persuade them of its value 🙂

I did trial a forum newsletter a while back but did have some technical problems with it and it only reached a few people. I will raise the possibility of providing this in future, or (just thought of it!) getting some forum information and current topics into the DUK letter where it would reach a wider audience and promote the forum at the same time 🙂

 

[Adrienne]

I belong to a few forums and email groups and this is one of the best. Yes there are a few spats every so often but of course there are going to be as we are all so very very different.


As for 'cliquey' (I really hate that word as it has a derogatory meaning nowaday) well if it is what is wrong with that anyway. It is all about the person and the personality and whether you can join in. If there is a group of friends chatting about diabetes or on the Off Topics then some people will feel they can join in and some can't. The people that can't or feel they shouldn't are generally the people that may think it cliquey (I'm not being personal here about anyone at all just general thoughts) but others that can just join in don't think there are any cliques.

It is interesting seeing different people's views and interesting that some feel it is cliquey and some not. Just goes to show how diverse we all are.

I have no problem jumping into a conversation and chatting because that is my personality. Sometimes if I have done that and then consequently been ignored I'm not bothered in the slightest and either try again or don't, to me it doesn't mean anything other than the group chatting were on a roll.

Funny old bunch we are eh !

From a parents point of view this forum is invaluable as we can see and hear how you feel as older type 1's and we need to know this.

I can't be without CWD however and I have no problem recommending it, I think they both have their place and some may prefer this and some may prefer there. CWD is a place purely dedicated for children with diabetes whereas here its a free for all and one is a forum and one an email group, both different and both very much needed.

🙂

 

[Robster65]

I think it safe to say that the PM system is going nowhere and is an essential part of the forum. We couldn't function without it and many members who feel unable to post on the open forum can still participate and have social contact.

The Island is what it is and I've noticed a few newer members in there which is good, so it can't seem too exclusive. As ohn said, you get out what you put in and if a member doesn't post, it's difficult, even with best intentions to include them beyond general friendliness.

Some will only post in a section that affects them while others post in almost every thread available within their first week. It's part of the freedom we enjoy. It's more likely to be due to personalities and personal circumstances than a fault of the forum. I think we can always improve how we welcome or attract new members but the overall structure seems to work for the vast majority.

Rob

 

[mcdonagh47]

I'm meeting Diabetes UK in a few days to discuss ways we can improve the forum and provide help and support to more people. As someone mentioned on another thread, although we are generally very busy and increasing the membership daily, we are still only scratching the surface of the huge number of people who might benefit. I have some thoughts of my own, but would like to hear what others think 🙂

How can we better promote the forum?

What are its strengths and weaknesses?

Many thanks! 🙂

With the increasing volume of members and traffic it might also be time to consider Type 1 and Type 2 threads as well as the general suppport thread. So that people can go straight to queries specific to them. It would simply be a way of signalling what the general nature of the subject matter was. A lot of newbie T2s don't want to read posts on insulin that aren't relevant to them and they don't understand. The General thread would still be there.

 

[Steff]

Do we get a activation email when we first join the forum? i cant remember it was so long ago i joined, but if we do then maybe in the welcome email put a few lines in there introducing the forum and abit of a description,including to newbies where they need to post.

Also as well as having FAQ maybe you could have a section that is stickied at the top which it titled questions from newbies,would save trawling through posts and having loads of threads popping up all over from newbies....


How about a newsfeed as well there quite simple to set up

 

[slipper]

As a newbie diabetic I was directed to Diabetes UK by my practice nurse but did not see any reference to this forum, but to a members section within DUK.

Being used to forums I searched and found 2 I liked, this and another one, but no one acknowledged my intro on the other one, however here I was made to feel very welcome.

The strengths of the forum are the participants and their willingness to share knowledge and help others. I was lost at first and got little practical help from the professionals, and now I have been reduced to yearly checks. So my only other means of education are here , the internet and my own efforts. Trust comes into the equation and I trust the advice on here, as so far I haven't been given any poor advice.

As for being cliquey, I can see where this may be perceived, as when one replies to a thread, others can ignore it and respond to others. However I think this is more to do with others being more familiar with each other rather than snubbing anyone. We cant be best mates in 2 weeks, it takes time.

Chat rooms are in my opinion areas for conflict, as they are rapid response areas rather than considered opinions and I have seen many clashes in such rooms and never go in them now. Moderation could be a nightmare.

I feelperhaps a reference in DUK would be a good intro to us, and word of mouth plays a goodpart too, also a poster to put in the GP reception area, this wasmentioned I think.

Private messages are useful if you want to comment to someone that otherwise would clog the forums, and I would like to keep them, although I dont get many.🙂

 

[everydayupsanddowns]

With the increasing volume of members and traffic it might also be time to consider Type 1 and Type 2 threads as well as the general suppport thread. So that people can go straight to queries specific to them. It would simply be a way of signalling what the general nature of the subject matter was. A lot of newbie T2s don't want to read posts on insulin that aren't relevant to them and they don't understand. The General thread would still be there.

Separating by type has been suggested before I think, but I for one am very glad that all threads are in the same pot. I spent many many years with little or no understanding of T2, but thanks to the 'integrated' nature of forums like this I now have a much better idea of the condition.

I welcome T2 input on any thread I start - especially where food etc is the concerned as although things are slightly different when on rapid acting insulins I have a lot I can learn from someone who has diet as their 'primary weapon' to establish BG control.

 

[pippin]

I love the forum and have never found it cliquey in the way I would feel left out but that might be because I am here as a carer. This is the bit which I feel I fail at as I'm never too sure if I can add to the welcome posts or reply to a post from the 'we do this or have found that...' etc as I would feel my posts aren't valuable at all given I don't have diabetes myself. This is when I feel sometimes I best not ask another question but dad doesn't use my Macs at all so can't ask although he hears about the questions and answers and tells everyone about this forum.

I come here as often as I can and find it a lot less frightening than DUK's Facebook page. I also find it easier to ask DUK via Twitter although my main advice comes from all the posts in here as I read and learn from a lot from all posts up here.


A mobile friendly version would be good!

We would give leaflets to our surgery etc although meet ups are out of the question with NI not that I would be brave enough to go!! If leaflets were available I would send them out or if I can use Twitter every so often with the link to the forum I am more than happy to do that.

Forum is definitely a supportive place and if I could help more I would but know I don't have the knowledge to help people with diabetes. I can only add little things but still love the forum.

 

[everydayupsanddowns]

I love the forum and have never found it cliquey in the way I would feel left out but that might be because I am here as a carer. This is the bit which I feel I fail at as I'm never too sure if I can add to the welcome posts or reply to a post from the 'we do this or have found that...' etc as I would feel my posts aren't valuable at all given I don't have diabetes myself. This is when I feel sometimes I best not ask another question but dad doesn't use my Macs at all so can't ask although he hears about the questions and answers and tells everyone about this forum.

I would encourage you to post Pippin (welcomes... suggestions... everything!)

Not having D yourself does not make your hands-on experience any less relevant.

Think of the number of D-parents/partners who post all sorts of invaluable support and suggestions.

It't the different perspectives that are part and parcel of making this place the success that it is.

 

[Adrienne]

I love the forum and have never found it cliquey in the way I would feel left out but that might be because I am here as a carer. This is the bit which I feel I fail at as I'm never too sure if I can add to the welcome posts or reply to a post from the 'we do this or have found that...' etc as I would feel my posts aren't valuable at all given I don't have diabetes myself. This is when I feel sometimes I best not ask another question but dad doesn't use my Macs at all so can't ask although he hears about the questions and answers and tells everyone about this forum.

I come here as often as I can and find it a lot less frightening than DUK's Facebook page. I also find it easier to ask DUK via Twitter although my main advice comes from all the posts in here as I read and learn from a lot from all posts up here.

We would give leaflets to our surgery etc although meet ups are out of the question with NI not that I would be brave enough to go!! If leaflets were available I would send them out or if I can use Twitter every so often with the link to the forum I am more than happy to do that.

Forum is definitely a supportive place and if I could help more I would but know I don't have the knowledge to help people with diabetes. I can only add little things but still love the forum.

Hey Pippin

As far as I am concerned all posts by all people are valuable. Absolutely 100%. If a post hasn't necessarily been replied to, it is not because it hasn't been read but because maybe there is nothing to comment on and I think all posts have meaning.

Just because you are down as carer/none does not mean you cannot contribute. I don't have type 1 or 2 or 1.5 or whatever. In fact if you get to the nitty gritty neither does my daughter properly. She has type 1 with bells on. However I just post what I want when I want to and I really think that you should as well.

We only learn and collect all this knowledge by listening and reading what other people post.

RSVP - you wrote this : I have & do feel like an outsider. Maybe my own fault I don't post enough and I am just a partner, but I know Rob's diabetes nearly as well if not equally as well as he does. But because I aint got Type 1 in my profile i don't count

That makes me so sad, of course you count, I count and you count and Pippin counts, we all do but all for different reasons. I think this is more about how you perceive yourself rather than how others on the forum do. I bet others felt sad reading that as well. Please don't ever feel you don't count.

 

[Jennywren]

I dont usually comment on posts like this because i really worry about offending or hurting peoples feelings and if i mentiom anything here its not meant to do either of these , like copepod i have a high number of posts but understand what they are saying , i dont think 'clique' is the right word but i do feel some people will only reply to certain peoples post , i posted on a particular board and after many many views i only got 5 replies 3 of which was my own and being a certain part of the board looking for support i was surprised to be honest , maybe Alan between some members we can all take certain boards and sort of 'police' them so all people are getting support from somebody as this is another reason why i think newbies dont go on to post more becasue of lack of replies .Also i strongly agree that the pms remain as there as been certain times when i have felt low and a quick little message to or from someone can cheer you up .I do believe that everyone is entitled to their opions and all these opions go on to help people in different ways and different views make the world go round ,but i do think that sometimes a few people should 'think before they write so to speak' , Just my personal opion .

 

[Northerner]

I don't consider any of the posters here to be outsiders, apart from those who join purely to try and sell something entirely inappropriate (i.e. spammers), or those who join purely to abuse or upset people (i.e. trolls).

Whatever your relationship to diabetes it is helpful for everyone to have your perspective and support! 🙂

Regarding numbers of views of posts/threads and also visitors: it's difficult to determine how many real people are reading posts apart from those who log on. Sites are visited by many things on the internet, many of them automatic e.g. index searches and it's not always possible to separate them to provide a reliable, genuine 'human' number.

I can tell you that we get between 100-200 people logging in daily, and between 200 and 600 posts daily.

Regarding mobile phone access, this is also something I am going to raise 🙂

 

[trophywench]

Sometimes, people ask Q's that hardly anyone might have experience of, let alone have the answer to.

As you never know what people's mindset is (peoples' mindset ?) I always think Oh dear - is it going to help them if I answer, "I feel for you but I'm sorry I haven't a clue either" - or are they already halfway to 'doing something daft' in desperation and I'm going to send em over the edge if they perceive that yet another one of 'All those folk' can't offer any help?

It's hard to know what's best.

The Mods are here to moderate anything in a reply - or question - that may cause offence. So if anyone did say something they shouldn't it will be removed or altered so as not to, and they'll be told (nicely!) that Ooops - they've just opened their mouth and put their foot in it.

Likewise if a person posts and doesn't get a reply - maybe their post contained a 'closed' question instead of an 'open' one so the rest of the people reading it think the OP has already completely and irrevocably made their mind up about that - so won't appreciate eg me saying I think you'll find that's wrong, because blah blah - or whatever it is. So if anyone doesn't get answers, then maybe they should be encouraged to PM a Mod or Admin at the time and say they are disappointed - then if there's anything that is preventing a possible better response, that could be tackled ? - just a thought.

 

[Copepod]

Good idea about PMing someone if their post doesn't get a reply within a few hours, Trophywench.

As well as the possibilities you outlined for no response, there's also the fact that even if mods / admin / other members were always online, there'd still be some situations when no-one knows what to say. Personally, if it's only been an hour or so since someone posted to raise an issue / question, I prefer to leave the thread clear for a definitive answer, although I recognise some prefer a "thinking of you" post to silence. On other messageboards, it's not unusual to wait hours or even days for a reply.