The Forum's future - your thoughts please!

[pottersusan]

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! 🙂

As a relative newbie I find the forum invaluable - so far much, much more useful than my consultant appointments!

The thing I still find a bit confusing are the abbreviations and acronyms that are used. Perhaps there could be a glossary to help with this.

Although my diabetes is not 'standard' type 1, people have been very helpful with giving me food for thought, if not always the answers.

The forum certainly shows up some of the shortcomings in my care - I found it by chance and there are no posters etc in the centre I go to. I would know nothing about the importance of carbs without the forum. What is Balance?

perhaps in talking to Diabetes UK you could say something about what I've been told is Type 3 (medically created), as they could offer me no support at all when I rang them.

I haven't felt the forum cliquey - just some people post more often than others. 🙂

 

[Andy HB]

As a relative newbie I find the forum invaluable - so far much, much more useful than my consultant appointments!

The thing I still find a bit confusing are the abbreviations and acronyms that are used. Perhaps there could be a glossary to help with this.

Although my diabetes is not 'standard' type 1, people have been very helpful with giving me food for thought, if not always the answers.

The forum certainly shows up some of the shortcomings in my care - I found it by chance and there are no posters etc in the centre I go to. I would know nothing about the importance of carbs without the forum. What is Balance?

perhaps in talking to Diabetes UK you could say something about what I've been told is Type 3 (medically created), as they could offer me no support at all when I rang them.

I haven't felt the forum cliquey - just some people post more often than others. 🙂

Aha! There is a glossary in the information/links section (also accessible from the information for newbies sticky) ....

http://www.diabetessupport.co.uk/boards/showthread.php?t=16567

If anything is missing, just ask! 🙂

 

[everydayupsanddowns]

What is Balance?

It's the regular(ish) magazine from Diabetes UK. If you sign up as a member you should get it a few times a year.

M

 

[AJLang]

I sometimes feel that I could be accussed of "ignoring" people when they post but it's just because a) I really don't know what to say and b) I haven't always got time to reply to all relevant posts............but then I feel guilty that I may (wrongly) appear to be ignoring people when I'm not. I do know that I tend to prioritise replies to those who have supported me before but I someimes have to priorities due to time constraints. Possibly if there are a lot of people in the same position as me that may be why there is the mis-perception of us being cliquey when we are not.

 

[AlisonM]

I don't really think it's a matter of popularity or cliques, there are times when folk don't post because they don't know what to say, or perhaps what they would have said has already been said, or maybe someone has said it better and they don't want to detract from that. Or perhaps it's simply a subject they know nothing about.

 

[Northerner]

We do seem to have ended up with the thread splitting into two topics, but with no easy way to divide them. My original request was for things that I could take to my meeting with DUK for improvements to the forum, but I doubt they can do anything about people's perceptions of cliques and popularity, so can we please not have further discussion of it here. I have found it very interesting to hear though, so thank you to everyone contributing. 🙂

 

[Katieb]

I suppose I am coming at this from quite a personal level, but when you register with the forum you are only given 3 choices - Type 1, 2 or Carer/None. I have IGT (or prediabetes or whatever it is know as at the current time as it changes!) For this reason, it may be good to add a fourth category of IGT/Prediabetes. I know, and for me I certainly consider that IGT is in fact Type 2 diabetes and I always treat it as such. However, when totally ignorant and first diagnosed, I assumed I was not diabetic which is what I was told, but now realise that a failing pancreas is just that! There are quite a few people on the forum now with IGT, so be interesting to know what they think. I guess what I'm saying is that newly diagnosed IGT may not join if they think you need a firm diagnosis to be a member (does that make sense?!!!).

In all other ways the forum has been fantastic. I have always found the links I need (the one at the top of the Newbie section good). Perhaps a link for newbies could go at the top of the main page though to encourage reading and simplify access to info like recommended reads?

Some of the comments made so far have been really good, especially regarding no replies threads. I feel the need to reply sometimes when a post has been left with lots of views but no response, even if only to acknowledge it.

Thanks all involved for a fab site for which I am personally very grateful! Katie.x

 

[pippin]

Just a thought DUK might be able to provide a link or details about the forum in the Diabetes Tracker App. Just tweeted a link

 

[alisonz]

I feel I should come out of hiding and throw in my tuppence worth. I joined this forum (the only one I have joined) at a real low point in my life and was made very welcome (thank you for that) However I very rarely post on here simply because I feel I have nothing to say, that is I still (12 months on) feel I know very little about my diabetes. I have made and met some lovely people on here (one very special friend in particular) and attended one "meet", very nerve racking, and I'm so glad I did. I personally couldn't be without the PM system as it allows me to stay in touch.
Yes this forum should get more recognition, yes the forum should be well advertised, I came across it by pure luck, and yes I would be willing to ask my surgery to promote the forum.
Alan I wish you all the luck in the world at your DUK meeting and look forward to finding out the results.

 

[mcdonagh47]

We do seem to have ended up with the thread splitting into two topics, but with no easy way to divide them. My original request was for things that I could take to my meeting with DUK for improvements to the forum, but I doubt they can do anything about people's perceptions of cliques and popularity, so can we please not have further discussion of it here. I have found it very interesting to hear though, so thank you to everyone contributing. 🙂

Doesn't Duk have an annual conference ? Perhaps a table/display there or folks giving out leaflets or cards etc. Or an informal off piste presentation about the group.

 

[Northerner]

Thank you pippin Katie and mcdonagh for some more good suggestions, much appreciated 🙂 You may not see me for a week armed with all this! 😉

 

[Hazel]

forum is brilliant - no change required

AGAINST splitting T1s and T2, as a T2 on insulin, I get a lot of tips from T1s

old chestnut - why no DAFNE access for T2s on insulin - we still need to carb count

why the massive differences in care around the UK - sharps boxes a prime example. see my recent facebook thread.

 

[grainger]

Hi,
I've not read all the posts but my only suggestion would be it be made more obvious where meets are? It may just be that I haven't looked through the site very well (I tend to just read the new posts of the day) but if the meets could be made more obvious that would be good?
In terms of new people possibly feeling awkward or an 'outsider' I can only give my opinion of being a new person. I've found that although I wouldn't comment in some posts because i'd feel like it wasn't my place or people might think it strange. I have also found that people are incredibly supportive, helpful and friendly - I've received some great advice and been made to feel really welcome by many.
I think this site is great in it's current state - i personally don't think changes are needed for change sake but would in the same respect find any new additions interesting and probably great 🙂

 

[rachelha]

Hello

I think the forum is brilliant, I am very much against splitting it into different types.

One thing that has worried me about the forum is the lack of privacy, in that any one can read things without having to be a member. I can understand why it is open, so as many people can get advice as possible, and people may be put off joining something they can't see in advance. I think my issue is with posting about things that people in my "real" world are not aware of, e.g. Pregnancy and depression.

Maybe I should have chosen a less recognisable name!

 

[Hanmillmum]

Hello

I think the forum is brilliant, I am very much against splitting it into different types.

One thing that has worried me about the forum is the lack of privacy, in that any one can read things without having to be a member. I can understand why it is open, so as many people can get advice as possible, and people may be put off joining something they can't see in advance. I think my issue is with posting about things that people in my "real" world are not aware of, e.g. Pregnancy and depression.

Maybe I should have chosen a less recognisable name!

I too worry about who may see and recognise the posts so refrain from saying too much/ being too open.

I do like the forum, like the lay out, easy to find things and read the threads which appeals, hate searching for stuff, time precious and all.
It took me a long time to find it though and that was random searching!

I like the mix of people, personalities and experience. It's important to me to have support and information from a good cross section like this and not just purely other parents, though that too is invaluable (just my opinion).I like to see where it is going (D), how to deal with things ahead etc I don't think there should be any segration for T1 and 2's IMO.

 

[David H]

Hello

I think the forum is brilliant, I am very much against splitting it into different types.

One thing that has worried me about the forum is the lack of privacy, in that any one can read things without having to be a member. I can understand why it is open, so as many people can get advice as possible, and people may be put off joining something they can't see in advance. I think my issue is with posting about things that people in my "real" world are not aware of, e.g. Pregnancy and depression.

Maybe I should have chosen a less recognisable name!

A PM to Northerner and he can change user name and even photo, if you're worried about anonymity

 

[Persil]

Hi all!

I don't post an awful lot on this forum (hopefully this will change), but I have always felt welcome amongst you all, so I have no concerns there. But I do agree with Rachelha about the whole privacy thing - I post on here about problems to seek advice before I've spoken to my friends or family, especially when my friend was going through diagnosis and I was referred to DWED. However, that is the risk we take by posting on here. I think there's a fine line between our own privacy, but then making sure that people that aren't ready to join the forum can still get advice and support, and I know that because I used to be one of those "lurkers" before I joined! It's a difficult one.

With regard to promotion, I think Balance is a very good way to go, and I like the idea of having "business cards" for HCPs to give out to people.

I hope this helps!

Vicki 🙂
xxx

 

[hyper-Suze]

Hi Alan and all...
Have only read page 1,2 and last so I am sorry if I have repeated anything!

Strengths:
Alan, Moderators and all fellow postees!!! Hurrah!!

The support and suggestions(not medical advice!) is invaluable, but also when I reciprocate my pearls of wisdom, it is nice that it is reinforced by others that I have a good point. Without this site and help from others, there are many things which have been brought to my attention and I have attended clinics and gp app's forearmed with knowledge and queried my care

The fact that you can be as active or anonymous as you like, and no-one judges when you do return! I have been missing for 6-8weeks and returned this evening, its as if I never did! It is nice that you can read without having to log in or post...

The topics are broken down, great way to navigate all the threads, obviously there is more activity in the general, off the subject but it is nice to have other topics relevant to different times in ones life, for example, pregnancy and pumping are my 'go to' areas these days.
I absolutley agree with Alan in an early post, that off the subject is needed as the social isolation and having things in common with other diabetics is very important and if the off the subject/jokes were not on here, I may not hardly visit as much. It is the place where we get to know one another!

There is hardly any trash talk on here/trolling which makes it enjoyable to visit AND if anyone does step outta line, it is nice to have that solidarity and unity with fellow posters that timewasting people like that are not welcome unless they have something constructive to say.



Weaknesses:
I would like a link maybe, similar to FB that if you create a thread and someone replies, that it gets copied to our email? Sometimes I can post, log off and get delayed in returning, by then my post is pages and pages back, others have made a nice effort to reply to me and then I may appear rude by not replying back?

More smilies to chose from as limited choice

Maybe the option to be able to share more info about yourself or pictures? It may break down some people feeling alone if they see they may have something in common which is not known at the moment

An easier way to adjust the fonts, size, style etc , or a way of seeing the changes made as you type, it is a bit confusing if you want to make something bold to then see 'coding' for that change?

 

[HOBIE]

I like the forum the way it is & i guess people who use it do so. I regularly go to DUK meetings with 30+ people & didnt know you were after "more folk". Should we be recuting ?

 

[hyper-Suze]

Also wanted to say, agree with Vicki about that although some worry about the information they post but that is a risk which we all take and make a decision on. Each individual has the choice to post or not to post that information. The internet is not the right arena to be private on and we all know that so shouldn't really expect any different?