This is mainly a copy-and-paste from another thread, because we'd like your responses to our new idea. The more we get, the sooner we have a chance of making it (or, indeed, something else if you suggest it!) happen.
This thread is in response to a common question - why can't brittle asthmatics talk openly about their experiences on this message board when much worse can be found on the Internet just by doing a quick bit of Googling?
There are a couple of reasons for this, but also there may be a solution - we mods do a lot of discussion behind-the-scenes about what we can learn from decisions we have to make, and we have had a possible idea. Read on...!
Why can't we allow uncensored posting? As I've said before, this board is accessible to anyone. More to the point, it is accessible to any one of any AGE, and this is where we have to be careful. Cathbear and I are both CRB checked with Asthma UK so that we can moderate the kids Kick Asthma message board, and the Charities Commission has a very strict set of guidelines about the activities of registered charities. Quite simply, if we allow posts to remain on the message board that could be distressing to minors, Asthma UK could get into serious trouble - and that's despite the disclaimer that exists in the T&Cs.
Child protection (""safeguarding"" as it is now called) on the Internet is a very big issue, and as such our hands are remarkably tightly tied by this. What we need is a way to separate out the sensitive stuff so that those that would be bothered by it don't need to read it.
So here's our idea; why not add a new ""Talking Point"" specifically for this? It would mean a big chunk would need to be added to the T&Cs, but it would also mean that an essentially censorship-free area of the message board could be created.
What do you folks think? It is, after all, YOUR message board!
Steve
(moderator)
35 Replies
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It might be a good idea, but can't help feeling it could end up as an area for brittle asthmatics ( not intentionally ) which would then segregate the board into separate areas. Brittle asthmatics are more likely to be describing sensitive experiences I guess.
Just wondering what you mods would describe as a ""sensitive subject"" aswell. Where do you draw the line between describing symptoms and describing more severe symptoms? When does it become too sensitive? Just seeking some clarification on this as I hadn't really been sure what is or isn't sensitive.
Off the back of a post by EmH elsewhere on the board, I would like to point out that the new area would in no way be solely for brittle asthmatics; moreover, it would be a place where anything that cannot be discussed on the general board (sensitive topics, posts containing medical procedural detail, adult discussions, and so on) could be posted, an all members who wanted to join in would be more than welcome to do so.
How do you define sensitive? ""Do you think your post would be appropriate for an under-18 who had just been diagnosed with asthma"" is a good starting point, but obviously there will always be a grey area about this. At the moment, if we receive complaints about the content of a post on the board, we review the complaint and take action (or not) as necessary. The new area would remove this possibility of complaint, as the T&Cs would make it clear that you are waiving your right to complain about such content if you choose to view the ""sensitive"" area.
Over the last few months we've had to remove a couple of threads that were created by non-brittles but which contained content of an adult nature. These would be acceptable on the new area.
There would, of course, be nothing to stop non-brittles discussing sensitive things, and nothing stopping brittles from using the main talking point areas as they currently do.
Maybe you could have it a bit like the health pros bit...in that its not openly accesable to everyody ...people should know it is there...and that if a persn wishes to have acess to this area they could do by pming a mod, then it allows both people to expess and echage ideas about sensitive issues whilst ot scaring younge or people with milder asthma away...
i dont thiink it shouldnt be unaccessable to under 18s though...surely even though we are uner 18 and covered by safe guarding/ chld protection we shoukd be able to make our own descisons as to wether wwe want to read something or not...
sorry about bd typing
Some good ideas there, Emma. I thought about it being like the health pro section, but I think that would only serve to exaggerate the divide between brittle and non-brittle that Karly was rightly worried about. On the other hand, it's a very good way of making sure no-one stumbles on the new area by mistake. Certainly one to think about.
And no, there would be no strict rule about under 18s not being allowed to view the board; there are under-18s on these boards who have been through more with their asthma than most of the ""adult"" members have - it would all be down to individual choice.
We're exploring ideas of having some kind of ""click this disclaimer"" access to the board, so that, whilst it remains fully viewable to all, you will need to read and agree to a disclaimer before accessing the content.
This is all speculation, we don't know if we'll be able to do that or not.
It could contain a recommendation that under 18's should seek parental review or guidance or similar before accessing the area. What do you think? We're certainly not suggesting that the area shouldn't be accessed by under 18s - I could certainly name a handful of under-18 users who would benefit from the area.
ooooo maybe if yu knowike theres 4 setions and u clion it to ge into that section there is a page before that says somethin about the nture of the post then there is an option to proceed or go backas you wish.
Yup, that's it. At present we don't have the facility for ""sticky"" topics so we can't just have a message on the board itself.
I think it would be a very valuble area, as in the past few months I have not felt able to post about the distressing admissions I have had for fear of upsetting folk who are new to asthma or have much milder disease than mine. I am not saying that others have pressurised me not to post, just that I am aware that we have to be responsible in what we do post so as not to frighten other, potentially young, readers.
I have been lucky to have others to whom I can turn, but some are not so fortunate, and this would be of benefit to many.
As one of the brittles on the boards, I would certainly not want to 'hide' in such an area, but would want to continue to post in other areas of the board as I do (albeit occasionally) at the moment.
i think that i would be a great.
i think it sounds like a good idea and would be benficial for many but it may be tricky to stop young people (for example) agreeing witht he disclaimer and being shocked by what they read etc. so would need to be carful.
Agreed, Olive.
Webeditor knows of other health-related message boards with similar areas, so he's going to ask their administrative staff how they deal with issues like this.
new area
I think that this is a great idea there are often things that I would like to voice about my sons condition, new treatments that we are on ect, but quite rightly so we cant frighten other people who are new to all of this.... Sometimes there is no-one to listen and what seems to be a big problem can be halved so easily by other people who perhaps could put things into perspective..... Lets hope this takes off..
Bev x
Speaking as a young member of the board, I think it's a good idea.
Im sort of posting in response to 2 threads here, so I apologise for that. I am shattered and can't be bothered doing 2 seperate posts.
AUK as a whole is somewhere for people with asthma to get support and for newbies to ask questions etc. There is lot's of Brittle Asthmatics on the board, and that can be very daunting for a newbie, They automatically think ""Good Grief, I hope I dont get like this, It seems very common"". As it has been said by many a user, It is very uncommon to have Brittle asthma.
The fact that people do post sensitive stuff, has been brought up before, as Mod posts have indicated. The majority of KA do have an account on AUK aswell so do read the posts. We all know that yes, people have been vented as a result of asthma and some of us know someone who has died because of a major attack. It has never crossed my mind that these posts were scary. Yes people have in the past posted about being rather pants, and yes, we do get worried. But doesn't everyone? This is just my opinion, and I don't know what the other members of KA think, but personally, I dont mind them.
I think the idea of a new area is good, It gives a sense of ""safety"" if you will to the boards. It insures that no-one under say 18 or whatever, will get worried. I think It should be a pm requested area though, because for those of us who do have bad asthma, It would be good learning about other peoples experiences.
I posted on a previous thread that I wasn't going to post anymore. And to be honest, I think nothing has changed. I'm posting here because I feel that my opinion as a young user of the board should be heard. Lately AUK has turned into a battleground with the mods working over-time to try and get it back under control. And I really really appreciate that, because there is people who are getting hurt by such posts.
I love AUK, I have met some really good friends through it, and hope others have the same experience.
Vicky
I think it's a good idea!
(Marmite eloquent as ever)
i think this needs a ""bump"" to get more people to respond.
Yes, please post here if you're interested - even if it's just to say (like Marmite, thanks! ;)) that you agree. The more people who express an interest, the more we ammo we have then to convince those who need to be convinced that there is an interest and a need!
being quite new to the board I have not waned to post openley about my expereinces but im not sure if its to protect me or others but at times I have felt it reassuring to read that other brittle asthmatics have gone through similar things but on the other side of the coin have found it hard to read about it when ive just been thro a bad time and im trying to put it all behind me and put myself back together again esp when you come accross such descriptions say in an urelated post that seems to of digressed , so I think the idea that there be a seperate place to be a good one as then people have the choice to read/post or not, and therefore take responsibilty for ourselves!
Thanks
Snowy
I think its a really good idea because of many of the reasons mentioned below ( I am too lazy top type loads).
I dont think I really have anythin particularly profound to add to the previous discussion.
Em
xxxx
I think it would be a great idea !
Sorry, short & sweet
x
I am certainly for a separate area as again there have been times when i really could have done with posting ut felt there was no where suitable that would be ""appropriate""
Thank you for considering athis and for all the support you have all given me.
I think it would be great too. I have always been conscious about what I write as it is my young daughter who has asthma and I know how scared I was when she was first diagnosed, I really wouldn't want to scare any parents with our experiences. I would like to have somewhere though that I could let it all out (so to speak) and openly discuss things with others that have similar experiences to us.
Might not make sense but I'm a bit tired - Its been a long day!
Yes a very good idea... Hopefully it will come to fruition and thus keep MOST members happy!
Susy
x
Sensitive posts
Ithink it is a great idea as recently felt quite isolated and worried that i would upset someone if i posted how i have been
I think it's a good idea! I want that also people with hard experiences can talk freely about them. And that people with milder but still sometimes hard asthma can also read the posts and be encouraged by getting a broader perspective. And all this without a fear of unwillingly hurting someone more vulnerable.
I too think it's a good idea - I have often wanted to ask sensitive questions and also wanted to know a bit more in depth about certain scenarios but haven't felt it appropriate on the boards as they are.
Hope you get the go-ahead!
Sarah
Can I come out of hiding? I still read the boards and get a lot of support from them when I am going through a rough patch.
I have come across a lot of potentially distressing posts since I joined the boards. At that time, I was 16. I learned quickly enough that asthma can indeed be like that, but that mine was not. Reading these types of posts gave me a sense of appreciation for what people do go through and it motivated me to do my absolute best to keep my asthma under control. At times I became worried, because these are real people on the other end, after all! And I suppose that is exactly the type of thing you are trying to avoid.
I think a new talking point would be a brilliant idea, because I know that sharing exeriences and venting frustration about sensitive subjects can really be an integral part of recovery and coping.
So yes! I do hope you get the thumbs-up! Good luck and thanks!!
As Susy says, I think it will keep MOST people happy. There will always be exceptions, but I do think that this is a necessity if the board is to provide total support, where members can describe things how they really are so that they can be understood. This is a sharing support site and to limit particularly those events/subjects which are hardest to deal with for those encountering them would, I think, undermine the full purpose of the forum.
I also agree with Brynne in that, by fully understanding and appreciating jsut how things can be, it is real motivation to try do all the right things to try to keep control. I also think that knowing how distressing things can be also provides, in a strange way, some reassurance to those that have not experienced the ""edge"". Having some of this knowledge when you are new to this condition that we all share gives us an understanding of procedures etc, particularly in those emergency situations. Knowing why medical staff are doing what they are can make things far less frightening.
Go for it.
Alan
Excellent idea..
AUK has provided me with a huge amount of useful information and contacts. About 18months ago I suddenly went from being a 'normal' asthma patient to one labelled as 'brittle' and sadly needing a high level of medical input and going through a lot of disruption to my life....and feeling very alone. I found that I was experiencing huge problems coming to terms with what was happening to me, despite having what would be probably be expected to be a higher level of understanding and sources of information due to my work in the healthcare profession.
AUK has provided me with a means of getting in contact with people with similar problems with their asthma; with people who have been able to provide advice on how to combine asthma and my profession, and also with people who have experienced some of the other things i've experienced in particularly the past 6 months as a consequence of treatment / being in hospital etc.
It no longer felt like i was the alone having to try dealing with these sort of problems, and I don't know how well I would have managed without the help and support of the people I've got through this site, particularly in the really rather rough 6 months I've just had. I just hope that I am offering the same help and support to others.
There have been times early on, when I'm sure i've posted things about my experiences that could in hindsight have been distressing to newly diagnosed patients, or indeed others, and I apologise for this. These posts were mainly before I had really made individual contact with people that I was then able to discuss these things with in the more appropriate setting of PMs / emails.
I think the idea of an area of the site where people can more openly discuss these potentially sensitive topics is a brilliant idea, and one that should be encouraged! Go Mods Go!! You all do a fab job, and over recent weeks seem to have taken a bit of a battering over trying to do a thankless and generally unrecognised task. Thank you!
*nods head in agreement""
The only thing I would say could cause potential difficulties is the new study that shows that many U18s often purposely flout safegaurds put into place by admin teams on websites/forums - there was a lot of media coverage on this yesterday.
I don't mean to put a dampner on this idea because I personally think it would be a valuable addition to the boards, but there are a lot of legal issues that would have to be considered by the admin team and AUK.
Rusty
Fortunately, we're not looking at a section that excludes under-18s - otherwise the problems would indeed be huge!
I'd like to 'second' this idea (or 34th it, or something). I think it's possibly the one area that's missing from the AUK boards, and would be a valuable addition to those of us who do have the most extreme asthma.
I know this isn't really for me to work out, but I'm interested in how this 'sensitive posts' area will be different in terms of access, and therefore make it possible to have this additional area. I'm just being nosey really ... or shall I call it 'interested' ? ;o)
Good idea. It has my vote.
At the moment, we're not sure either Becky! Webed is speaking to other site managers to see how they do it.
As I see it (and this is obviously subject to change) the area won't be hidden or protected as such, but simply have an additional set of T&Cs that need to be agreed to before it is read. If you're not logged in the board would not be visible, so that non-members would be protected from stumbling across the area without knowing what it was.
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