Facebook/Helpline
Facebook/Helpline
We are very desperate atm, cluster attacks coming every two hours nonstop 24/7, I am sure many members know what this is like.
So when no longer able to cope in the night as my husband writhed around in agony bashing doors and furniture, I remembered a friend recently showing me an OUCH post on Facebook with a fantastic piece of information: '24hour helpline' (I am not a Facebook user). I rang, but all I got was the longstanding recorded message explaining the helpline functions between 10am and 2pm and to leave contact details for a call back. I was left upset, feeling let down and angry that my expectations had been raised.
I think the helpline as it stands is an incredible achievement of caring and devotion from all who have been and are involved in setting it up and running it. We are so much better off than we would be without it and it is fantastic that it exists. We have always received excellent understanding and support from this service.
I am struggling to comprehend why OUCH advertised a service that isn't there? I am sure I won't be the only person to absorb the phrase '24 hour helpline' and reach for it when desperate. What is the point of overstating what is available to people who reach extremes of distress and desperation? Why doesn't the post just state 'helpline has 24 hour message facility'?
And while I am raising concerns, is anyone else negatively affected by the diversion of OUCH onto Facebook and feel it results in the website and forum being a poorer place for members? My personal view is that it makes sense to use Facebook to let people know OUCH exists and provide a link, but that actually conducting the main life of OUCH via Facebook instead of the website shuts out those members who cannot access Facebook, leaving them without access to up to the up to date information and discussion; and unable to join in everything, when this is needed so much due to the serious isolation the condition causes.
Facebook is not available to all. People in certain lines of work are not allowed to be on Facebook at all, and other people have personal/family/safety reasons why they need to stay away from Facebook. Paid up members and supporters of OUCH who are in these situations can be left feeling cut off from the mainstream of what is going on.
I am resisting my British urge to apologise for speaking up, because I feel it needs saying and I am exhausted and upset, feeling let down and at my wits end; but I do want to make it very clear that all who work for OUCH have my full support and appreciation for what they do. The situation for CHers would be incredibly bleak without OUCH all that it facilitates and does for sufferers, and it exists because of the devotion and determination of a few, which I admire immensely.
I am incredibly grateful to OUCH, and I would like to ask that these issues be considered carefully, in case aiming to reach more sufferers is inadvertently resulting in a number of members being excluded from fully participating in the OUCH community.
Harriet.
Login to add comments
I couldnt agree more. I had actually logged on this morning to post an 'is anybody there?' message.
I refuse to join TwitFace, as I have better things to do with my time (this means I am a sociopath, apparently!). I suspect that a lot of the 'older generation' feel the same way and it irritates me that everything these days seems to insist on being forced into signing up to the FaceBook 'community' in order to participate in anything.
Fortunately, I've not had the need to contact the helpline in the middle of the night, but I agree that the information does need to be changed. Maybe the actual opening times should be advertised and the Samaritans number given for 'out of hours' help.
Miss Kitty B.
MissKittyB.
Hello Harriet
The person who told you about the 24 hour service on Facebook, failed to notice the '*' and the sentence below saying '* messaging service; calls are returned between 10.00 am and 2.00 pm 7 days a week'. Also on our website homepage we do state that the helpline is an answering service. It would be impossible for a charity of our size to offer a live 24 hour telephone service, especially as all our helpline staff are volunteers. Calls are accessed by the volunteer on their own phones from the helpline via the 1571 service If your informant had searched on our facebook page for 'helpline' there would have been several posts which state that 'callers ring the helpline number, leave their name and number and that calls are returned between 10.00 am and 2.00 pm, or at a time the caller states and that calls are returned from withheld numbers.' I am sorry this misunderstanding has arisen. Most of the trustees are in Aberdeen this weekend and I will ask them to ensure that it is made absolutely clear, as soon as possible, that on both the website homepage and also Facebook that the helpline is a 24 hour answering service and state clearly and unequivocally the hours that calls are returned.
As it happens, I'm not a huge fan of Facebook, they have too many ways of getting personal information from posts and as Kitty says I have better things to do with my time, but having said that it has helped us reach a huge number of sufferers. I will get back to you when I have had a chance to speak to the trustees.
Val
Hi Val,
Thanks for your response.
Actually my friend showed the Facebook post to me and I saw it for myself. I have just found out how I missed the starred explanation underneath about the hours and messaging.....on a small Ipad the red words just look like a red line, so I couldn't see the tiny explanation. Which means it is also likely to be missed on even smaller smartphones, and of course, there are the sufferers who have to avoid big computer screens because they are attack triggers.
It isn't that I think the helpline ought to be 24hrs, and I completely understand why it isn't; it is just that I don't think it should be called a 24 hour helpline when it isn't one. As I hope I made clear in my post, I think the work that is done by a few dedicated people to ensure there is a helpline at all is wonderful and we have experienced the benefit of the fantastic work they do. 'Helpline' or '24 hour messaging service' would be fine and I think the way it is done on the website is very good, there is nothing to mislead there.
It is really excellent that via Facebook many people have been reached, but I feel it would be good if that brought them to join the website community, instead of creating a separate OUCH community that excludes those who do not have the option to use Facebook. Whereas I think it is correct to say that everyone who uses Facebook and discovers OUCH exists would be able to use the website.
I would be really interested to know what other people think about the Facebook issue. It isn't that I mind another community option existing; what bothers me is the fact that because that other community is happening on Facebook some people are excluded from it.
Best wishes and thanks, Harriet.
Hi Harriet
I take your point about the small print on the FB caveat, and that is being amended. Also the title 24 hour service is being amended too, I don't know to what as yet, but it will be something along the lines that you suggest.
I know that when OUCH first started the Facebook page there were concerns of exactly the nature you suggest, but we couldn't NOT have a Facebook page. I don't have exact figures for a conversion rate, but many of the Facebookers do become members and of course they receive a log in for the forum. The forum and website will shortly be updated and the forum will have a newer and more welcoming look to it and it will be easier to get round, that might help encourage more contributors to the forum. But of course because of our forum is password protected you could say we are excluding Facebookers from taking part in website discussion, a weak argument perhaps, but a valid one. I can assure you that the forum will remain a part of the OUCH website so that those who can't access FB will have a place to ask question and let off steam and talk to other sufferers. Our previously open forum was made password protected several years ago after attempts were made to bring it down by people who gain a sick satisfaction from crashing forums such as ours. The method of accessing the forum may well be reviewed and I will be passing on all your comments to the trustees.
If others reading this thread have comments, the Trustees would like to hear them and any suggestions for improvement are always welcomed and discussed.
Val.
Thanks Val, useful info and history. It is clear thought, time and effort go into all of this stuff, and it is tricky to find the best way to do things because most things have a plus and a minus to them.
My thoughts are that the option to join OUCH and be able to log in is open to all, but the option to be on Facebook isn't. I guess Facebook itself is free because they make money out of people using it, whereas OUCH doesn't so the facility had to be paid for somehow. But then there is the argument that OUCH exists because dedicated people freely give their time and precious energy, so really we ought to be willing to contribute to the running costs of something we want and need to be there, and in general we benefit from.
I totally agree there should be a presence on Facebook.....but I don't know enough about what options there are for the type of prescence.
I am incredibly impressed at the speed and concern of OUCH to respond to the issue of the Facebook helpline post.
Thank you to all involved.
Harriet.
hi ladys and all, i agree with harriet with the need and apperchation for all that ouch are doing, but as miss kitty and few others seam to wait some time to get an answer to questions, i can apprechete staff are busy with there lifes as well but staff seam to chat more regularly on faceache than the fourm, hence i will be copying members unanswered posts on faceache for them and glad to do so,
how meny members dont or wont use faceache? im trying to get an idea of numbers,
is there any way some of the staff could take turns monitering the fourm dayly so members that need feed back,support or just to know theres someone there? maybe a rota of some sorts i know as we all do ch can and will upset any plans so some kinda fall back would be a good idea,
on a personal note, to all those intrested 3bs hampshire raised £500 for ouch last year and gave a check at the conference, concidering that i posted the details on the fourm and spoke to val, dorothy, chloe, and peter asked about the check, i got little mention of it, hard to belive it was forgotten by that meny staff, sadly as a biker we expected this, i give up mentioning my poem enjoyed by those that read it was promesed to be put in nov chit chat and march as it was missed and again for under the hat with foto sent to chloe, if staff didnt want to show it say so,,,
my club has now found another charity ths year but this wont stop me doing all i can for ouch and more importantly for all chers,
can any staff tell me why i cant get an answer to the question" can the ouch logo be used to raise awereness and money for ouch" this question ive asked too meney times to be funny, im trying to help!
d
Hi all
Like many others I am unable to use Facebook and even if I could it doesn't appeal. I do think it productive to promote and assist others find Ouch that could increase member numbers. I do think that if Facebook members wish to access the forum they should become members as we all did. This would increase much needed income for OUCH to keep up with technical advances, improve the OUCH site even further and maintain equipement etc. I don't intend this to sound harsh or unhelpful but there now appears to be an opportunity to increase the number of members, giving us an opportunity to have a louder voice in various arenas that would ultimately provide greater assistance from the Government, Health Providers and also more effectively fight the injustice of DWP, Capita and ATOS. It could also increase the number of stoic volunteers that could provide additional assistance to suffers and I have been most grateful for support during the times I thought I had reached the end of the line.
Steve Walker
All these things have been duly noted. As Val has said the forthcoming update to the website will hopefully improve the situation. Social media seems to be the choice for most people, but we do appreciate that it is not for everyone.
Hi all,
This topic has compelled me to make my first ever comment on the forum. The OUCH website has been a lifeline for me, without it I would have sunk. It was recommended by my Neurologist (he didn't mention Facebook).
Steve has already raised the issue but I want to reiterate, charities cannot survive without funds and therefore it seems essential that new memberships are encouraged.
I don't use Facebook for personal reasons but I am familiar with it's layout. I found it's screens all a bit 'busy', not CH friendly and in my opinion it is what it is...social media. Personally I feel OUCH has far more credibility as a stand-alone website and I sincerely hope it remains that way.
M
Evening all,
as the trustee co-ordinating the gentle upgrade of the website and forum and indeed one of the architects of our facebook group, I too also take on board everything that is being said and shared.
unfortunately as a charity that is setup to help sufferers we absolutely must have a presence on social media, Facebook and Twitter through those mediums we reach many thousands and help sufferers who increasingly use social media as a support tool.
the way users consume the Internet is constantly evolving and we do need to keep pace. But we are also a small team so our resources are spread thinly at times.
the forthcoming changes should make the forum and website easier to view and use from mobile devices, as Darren points out, the trustees and officers do seem to be more active in social media that is because, through phones and tablets social media 'pushes' notifications to use, constantly. The forum currently does a very poor job of notifying us of activity. Which is no excuse really, but alas it's the truth.
but we have a plan, we will be here much more. all the current trustees and officers were initially brought together via this forum, so it holds a special place for all of us.
PF wishes
Scott
Hello Scott,
Thank you for your thoughtful, caring and helpful response.
The extreme difficulties caused to CCHers by the persistent failure of the PIP system to apply the rules and regulations has resulted in many conversations with chronic intractable sufferers in the last year. I have been struck by the fact that for a significant number of these sufferers, screens and print are an enormous problem; triggering attacks and causing endless difficulties when trying to deal with officialdom.
This seems to be happening particularly to those sufferers who between attacks are never free from background/residual symptoms, and also to others during more highly active phases of their CCH. (I feel a survey coming on!) So I suspect that as well as those who are not free to use Facebook, there will be number of others who need more 'CH friendly' media. OUCH is indeed a lifeline for sufferers, even more for those permanently isolated by the chronic intractable version.
I think Melissa's point about credibility is a very interesting one. The recognition OUCH has as a serious expert organisation is an amazing achievement that must not be compromised. I feel that it is important that the website is the place that is reflected, because that is the official public face of OUCH.
The points about membership and funding are also very important. It's not about minding people getting info and support for free....it is about wanting OUCH to have the resources to be effective and for it's much needed influence in the UK to grow.
Again, ongoing thanks to all at OUCH for everything they do, and sincere thanks for the concerned response. I had felt a little hesitant raising all this because it can appear ungrateful and unappreciative, which is not my intention at all. But I think it is really important to discuss things via the forum because as we are a community of far flung and often isolated members, and the forum is our only means of having open and inclusive discussion.
Particular thanks to you Scott for being prepared to be the person who coordinates the media stuff. We would all be in a very bad place without it and appreciation for what dedicated people are working hard to provide must always come above any other issues.
Harriet.
Hi all
Like Melissa, special guest appearance as Harriet's topic is so relevant.
Like everyone I believe the Trustees, Officers and volunteers at OUCH do an amazing job in inceasingly difficult circumstances. We are all indebted to them.
When the FB dilemma first reared its head I knew it was going to be an enormous problem, which, as Val points out did not appear to have a solution as an FB presence appeared mandatory.
As Harriet and Melissa have alluded to the main problem is the quality of the statements in both locations. Between 2006 and about 2011 I recall the policing of the forum was immense. If anybody stated anything inappropriate it was jumped on instantly and the situation was cleared up. It was this that led to OUCH being referred to as 'experts' and 'a centre of excellence'.
The dilution of forums unfortunately diluted the 'police'. I don't mean this in a critical way, it's just an unavoidable fact, volunteer time was spread too thin.
The net result is the standard of comments dropping, crazy situations almost amounting to the blind leading the blind. I have read some comments/medication suggestions which have made me cringe!
I guess the ultimate test is....what would Les think about these posts?
I never like criticising without trying to make a positive suggestion. How would I manage the problem?
I would recruit some forum officers to monitor/police the forum. These would be sufferers/supporters with preferably at least 3 years experience. I would provide them with a training sheet, and most importantly a 'Standard Text' sheet i.e. a sheet of OUCH approved comments which could be copied and pasted on to the forum ensuring consistent information and speed/ease for the volunteers. This would buy the trustees some time. I would ask the volunteers to report anything they considered to be inappropriate to a trustee or Val to deal with and, if necessary, delete e.g. someone posting an inappropriate suggestion for medication.
Well done Harriet, Miss Kitty B and Melissa for bringing this up. The bizarre thing is that I wouldn't mind betting the ideal forum monitors are probably long term lurkers who have been watching this forum slowly turn into a ghost town!!
KBO guys!
Sean
__________________________________________________________________________
Warning: This forum may contain nuts
Hello,
i have been reading the posts lately with much interest and I whole heartedly agree with all that has been said,forum/f/b personally f/b don't ever go there.
but the forum to me seems to be lacking something of late no response etc to many of the members questions.
l admit for personal reasons I have not participated for such a long time, sadly my dear husband George passed away in September.
the ouch forum was for me a gift of information/ friendly /caring people who all knew what you were going through and always there when you needed help we all seemed to connect like family a bit of chitchat and fun at times all there to help you get there,
i wish you all well.
Elma
Hi Elma
I'm so sorry to hear about George, and I'm sorry you didn't feel the old OUCH family was here for you.
I don't know whether you remember me (Sean), but it appears we both dwindled from the forum about the same time, and judging by your comments for the same reasons. I wouldn't mind betting there are several more of us in the same position.
Several years ago this forum used to be a community, and it was a safe place where all posts were properly vetted which is what earnt OUCH the respect of medical professionals. Having read some posts on FB I suspect it is a full time job keeping that platform under control. I'm sure they do their best to keep an eye on this forum as well, but you can't be in two places at once.
Bottom line is I have seen quite a few posts which have made me cringe, and if Les were aware of these posts now I think he'd be turning in his grave.
I hope the trustees and officers don't think I'm criticising, I think the task is almost impossible to manage. I think it is a brilliant idea of Harriets to bring it out in the open. You never know, a meeting of minds and some open debate might help come up with some solutions.
In the meantime, I'm enjoying the family reunion!
Take care Elma
Love & best wishes
Sean & 'Er indoors (Jane) xx
__________________________________________________________________________
Warning: This forum may contain nuts
Hello Sean and Jane
thanks for your kind words,
i remember you well we were one of the regulars to ouch
you were always on hand to give sound and good advice but I think like you say it didn't seem to have the same feel about it a pity but others have opened it all up so ouch can maybe get back on course again. I sincerely hope so lots of folk like ourselves benefited the lift that ouch forum gave them ,
thanks , Elma
Hello Elma
I am so sorry to hear about George, I had no idea he had passed away. And sorry too that the one place where you should have had the support you needed let you down. I know it's late in the day to say this, but I will be popping in here from now on on a daily basis to keep an eye on whats going on and follow up questions and queries. Once again Elma, my apologies for not picking up on your very sad loss, George was a lovely man and I know he was a great support to you.
As Scott has said there will be some changes to the forum soon, which should make it more user friendly and maybe we can encourage more of the FBers to join us as members and take part in the forum. If they only realised that all the info they repeatedly ask for is on the website here and a click or two away from the forum and it is somewhere they can post safely and with confidence.
Val.
Elma, so sorry to hear of your loss.
Sean and Elma, OUCH still have that excellence rating and intend to enhance it
Thanks Scott, but I guess, without wishing to sound like the dinosaur that I am, like Elma, I feel that it's simply not like the good olde days.
Two things prevailed in the old days; a sense of family and community, and a sense of security with inappropriate or naive posts being dealt with instantly. Let's face it, that doesn't happen on the forum these days, and for the avoidance of any doubt I don't blame you or the other trustees whatsoever.
This is may be more of a problem than you realise, and may be Harriet has opened a can of worms here, which, personally speaking, I'm grateful for. The golden rule here is to listen to your membership. The likes of Harriet, Miss Kitty B, Melissa and Elma are the lifeblood of OUCH, you'd do well to listen to them.
There is a solution out there, it may take a meeting of minds to uncover it. I was once told (can't remember by whom) that Cluster Headache is also known as Chief Executives Disease because in the early days it was concluded that a vast majority of sufferers were of above average intelligence and often in high powered positions. Thus, by implication, surely we are in the best possible position to identify the best way forward.
Keep smiling and never forget, help is at hand thanks to all the volunteers at OUCH.
Sean
__________________________________________________________________________
Warning: This forum may contain nuts
hi to all staff and members alike , its good to hear posative debate with like minds working together, new ideas, new aproach, old vlaues, thise days like the fourm is what we make it, knowlege, compshion, support, advice, community, and frendship, this site has it all, with good leader ship we will change the world, one cher one day at a time, this fourm and the work the staff have done so far is much to important to so meney to not be the best we can make it, that gos for members as well as staff, we have to apprechate that the staff are also chers and have the same ups and downs and like wise need support now and then, so if someone reaches out just say hi your not alone, simple words that can and have saved lives, so meny thing we can do thats posative for members like the idea for having and attack with a different view, as we have so meny attacks at home in the same place, a change can be good and worth it like going to the conference or just going to a frends to break the isolation, perhaps a foto show? best pets that support us? best cluster face compatiton? best supporters story? theres so much to ch life other than pain, we still us after all some times we just need to laff, can pictures be put on the fourm? hopefuly with a few more faceachers on the fourm we get that community feeling back,
regards to all d
Elma, I'm so very sad to hear that you lost your husband. would you please accept my sincere condolences. I hope that you will keep checking in on the forum - we are taking notice of this thread and have every intention of addressing the situation. Our members are very important to us so please bear with us and with the upgrade to the website, we hope to improve matters considerably.
Darren, what you raised from your event was and is, very much appreciated but I'm sorry if you felt we didn't show it (by the way, I was a biker myself back in "ye olde days" - Dave had a Velocette with a fishtail silencer, it was fab). Also, I was under the impression that there was a choice of either using poem or story with your Under the Hat photo but maybe I got that wrong. You mentioned pictures on the forum and subjects of interest. If you go into Off Topic you'll find a Pets thread a few up from the bottom. Chloe put some fab pics in there of her big cat pets! I'm not sure whether it's just my laptop but I can't open those photos today. Maybe she'll put them on again if there's a problem.
We look forward to making the forum better than ever folks and with your invaluable help, we can. Thank you for your suggestions so far.
All the best
Dorothy
Dorothy (Trustee)
Elma, so sorry to hear about your husband, please accept my rather belated sincere condolences!
Hello Sean and Elma, it is so nice to see your names appear again, and Elma I am very sorry to hear you are coping with such a recent bereavement.
Looking through the posts on this topic it seems that the advent of Facebook has indeed had unintended consequences and all at OUCH should only be commended for their gracious, caring and concerned response to the grumblings.
It seems that essentially OUCH's human resources have been overstretched which has resulted in a significant drop in quality on the website, which in turn has negatively impacted members. I think it is highly likely that for each one of us speaking up there will be a number of other people feeling the same. It must be disappointing to the trustees and officers to hear the dissatisfaction, and for that I am truly sorry. Everyone at OUCH deserves only appreciation, support, consideration, and respect from all members, and I hope everyone involved feels assured that this is what they have from us.
Anyway, now the issue is 'out there' hopefully this will be resolved, OUCH can reunify and go forward from strength to strength with excellence at its core.
I have been really interested in Sean and Elma's views as such long standing members, and it seems very clear that maintaining excellence is paramount, and that this requires 'policing'.
My thinking is that for OUCH to retain it's expert status, the website must be the central place of excellence available to all. Anyone who suffers the horrors of CH will surely make the effort to access what is after all only a click away.
I think the useful purpose of a Facebook presence is the opportunity to let people know OUCH exists and that is where help and support is available. I feel that if, when people ask questions etc, they were directed/invited to the website, that would simplify everything, focus resources, and lead to OUCH being strengthened in many ways. OUCH would then achieve a combination of reaching as many people as possible and maintaining and developing excellence.
I think it is better to do what may on the surface appear less, but to a very high standard, than spread thin and compromise the key strength of OUCH. Sometimes less really is more.
I would like to say to all at OUCH who are attending to this issue, I think we all know that this has been properly heard and is being attended to, so I am sure we can be patient for a bit longer while it is addressed. Please all look after yourselves as well as the membership. We need you to all stay well and sane, and this was never intended to create horrendous stress to those who work so hard for us all. I may not be technical, but I do know that websites don't just make themselves.
Looking forward to things in due course, in the meantime I am going to satisfy my curiosity by having a look round the Facebook page when I am next with someone who does have access to it!
Harriet.
Just to assure you the Trustees and Officers that are on FB regularly encourage sufferers to look at the website and some of us are constantly putting up links to the website, and as a result a good number have joined as Members. With the advent of the upgrade of the website this should help!
Now I'm REALLY upset.
I got a friend to log in to Facebook and for the first time I had a good look at what is on there. It turns out there is not only questions, discussion, and support, but also other important stuff that simply does not exist on the website. I saw poems by sufferers, a video by two Neuros for CH awareness day, lots of 'under the hat' photos, and a post telling people that someone was going to be on the BBC radio speaking about CH.
So, those who can't access Facebook are missing out on all this stuff. If these things are only going to be put in one place then it should be the place EVERYONE can access, not the place that some people are excluded from.
I am trying to balance how I feel about this with the fact that OUCH are being really sensitive and receptive to the issue and have already given assurance they have a plan to address this, but to be honest, I just want to sit and cry right now.
H.
Hi Harriet
I can understand how frustrated you feel about this. I was there at the time the FB suggestion was put forward to Mike and I was against it but knew it couldn't be stopped. I had urged that time should be taken to consider the knock-on effects, but just like CH it was an unstoppable train. The day it went live I knew it would either seal the end of the forum or it would turn it into a ghost town, which it did. Between 2006 and 2011 there'd probably be one post every ten minutes on the forum, nowadays you might only see one post in ten days! In the meantime, whilst I don't look at it, I wouldn't be surprised if there was one post every few minutes on FB because it is free and open to all. Some will say this is a good thing, but in a group like this, discussing these type of issues, I'm not sure FB is the correct platform to discuss the inner workings of steroid use etc. Just because it is popular doesn't automatically mean it is good.
Like you, it occurred to me back then to ask Mike to explore how it might be used as, using the exact phrase I used for Mike back then, a giant light bulb in the dark attracting endless to its far reaching glow, but then manage them on arrival and channel them in the direction of the forum. Again, I think I suggested a standard phrase along the lines of "if you are interested in what medication options are available to CH sufferers then join OUCH and gain exclusive access to the highly regarded expert patient forum which is a safe and secure environment where all postings are monitored by trained moderators". In other words, entice them in. Mike didn't think it would be possible to manage the situation in this way and the following day it went live.
So Harriet, what could possibly be done about the situation now? The following initial thoughts occur to me:
If I was to say to the long-suffering Mrs Git "whatever you do, do not look in that box" how long do you think it would be before.....
Stay positive Harriet, I'm sure some ideas will come forward.
Take care
Sean
__________________________________________________________________________
Warning: This forum may contain nuts
Guys,
im going to personally put my hands up to the issues Harriet has highlighted today about things being on facebook that aren't here. Why? Because in 3 weeks we are migrating the website and the behind the scenes architecture to ensure the current central pillar of OUCH (UK) remains now and into the future. I didn't move the resources from Facebook to here as it would be double handling for our webteam and I'd prefer them to focus on making the new site as fantastic and as easy to use as possible.
would OUCH have invested considerable money into the new site if we were considering abandoning it? the answer is simply no.
i touched on before that it's absolutely right that OUCH has a presence and a sizeable on facebook, Sean, when talking with Mike 5 years ago few people knew the true direction of social media.
now if we had not gone to add facebook, our presence would have been greatly diminished, forums across the world are not used as much as they were 5 years ago. that is a fact of life.
now I have said I we have a plan to make the forum easier to use via tablets and mobiles. That will help address the common complaint that the forum is fiddly to use.
We have a balancing act, we are addressing it.
Guys,
im going to personally put my hands up to the issues Harriet has highlighted today about things being on facebook that aren't here. Why? Because in 3 weeks we are migrating the website and the behind the scenes architecture to ensure the current central pillar of OUCH (UK) remains now and into the future. I didn't move the resources from Facebook to here as it would be double handling for our webteam and I'd prefer them to focus on making the new site as fantastic and as easy to use as possible.
would OUCH have invested considerable money into the new site if we were considering abandoning it? the answer is simply no.
i touched on before that it's absolutely right that OUCH has a presence and a sizeable on facebook, Sean, when talking with Mike 5 years ago few people knew the true direction of social media.
now if we had not gone to add facebook, our presence would have been greatly diminished, forums across the world are not used as much as they were 5 years ago. that is a fact of life.
now I have said I we have a plan to make the forum easier to use via tablets and mobiles. That will help address the common complaint that the forum is fiddly to use.
We have a balancing act, we are addressing it.
I appreciate that you are investing in the website and forum now, but you can understand why members like Harriet have got so frustrated over the last few years.
Put yourself in her shoes, she pays a membership fee to have access to this forum. Nothing much seems to happen on this forum, and at times it is like a ghost town. Miss Kitty B said the other day she felt like posting "Hello, is anybody out there?". I know of many members who have felt the same way. Now, Harriet takes a look at FB and not only can she see how active it is, but also how much investment has been put into it..........when it is free.........you could forgive someone for thinking you have taken the forum membership fee, left the forum to fade away and invested the money in FB.
I'm not saying this has happened, I'm just pointing out how it might look to the forum paying membership, which helps explain their frustration which I share.
I understand the member is joining OUCH and not just paying to have access to the forum. I understand you have now invested in the website/forum, but for the last 3-4 years the members forum has received little attention if we're honest.
Like Harriet, I have just taken a look at FB for the first time in ages. About the third post I read contained the F word virtually every other word.......expert patient forum......can the new forum have an emoticon for "shaking head from side to side whilst emitting a deep sigh".
__________________________________________________________________________
Warning: This forum may contain nuts
Sean,
swearing occasionally happens, it happens here too, indeed if you care to have a look properly at Facebook and not just with critical eyes you will see a post reminding users of our PG rating on all forums. As I've said previously there is a balance to be struck.
All sufferers are individuals and having met the man whom you are so disappointingly singling out for his language, that is how he is. He uses swears to punctuate, indeed it's quite common to find individuals in the northern parts of the UK that do. He even spoke like that to Professor Goadsby. Until last week he had never met another sufferer, until last week he had no interest in joining OUCH, until last week he believed himself alone in his struggle...
That aside, the officials behind OUCH are doing their best, but the membership were not posting here by your own admission 4-3 years ago. The fact is the facebook group is only 2 years old. The 'like' page is 4.
So in the critical history of OUCH there was a 2 year period where the boards were very quiet as our membership sought support in other places. That posed a far greater risk to this forum and indeed to OUCH as an entity than an moderated facebook group does.
indeed membership is increasing at the minute, so despite this we do seem to be doing something right.
while I'm happy to continue this rather circular discussion, I think we can draw certain key points.
The board recognised Harriet's point and have addressed our own failings with regards to supervision here.
The board recognised that the wider membership aren't posting in an open members forum for 2 reasons, Facebook is easy it's linked to personal social media accounts but importantly it's 'private'. The forum was difficult to access from mobile devices. As a result the new board will be mobile friendly.
The board recognise that the membership in All its forms are important, that includes off line, online and social media users. And are actively addressing and rebalancing the workloads to ensure all parts of our membership feel included.
Members will be actively encouraged to drop into the boards and participate in the forums from Facebook, this task we view as being linked to the launch of the mobile friendly boards.
Beyond that the moderation policy on Facebook, is present is robust and indeed continues to see the users and members self moderate for the large part with occasional reminders to mind the language etc.
i personally have held up the transfer of a limited few documents relating to cluster headache awareness day and under the hat, due to the imminent upgrade of the website.
Finally as you know the team do all this work in their spare time, for free and given the personal circumstances of just over half the team at present. I personally congratulate the officers and trustees of OUCH(UK) for even getting out of bed let alone the fact they meet and often exceed the expectations of everyone who interacts with OUCH be they Member, newbie, non member or critic. While also pushing the charity forward.
Regards
Scott
Scott
I can see I have hit a nerve here judging by your response.
Firstly, it is perfectly fine for any member to raise a concern without being accused by a Trustee of being critical. We pay a membership fee and we are perfectly entitled to enquire how this money is spent.
Secondly, if you check my posts on this thread, and indeed my posts in general, you will see that I am always mindful that Trustee and Officer work is carried out on a voluntary basis. I should know, I used to be a Trustee and I worked behind the scenes for Les and Mike for many years before that.
I think you seem to have missed my point. I could fully understand Harriet's shock and disappointment when she saw FB for the first time. During the last 3-4 years this forum has been a ghost town. One possible reason for this is the quality of postings on here. Between 2006 and 2011 if a post was made by someone which needed tidying up, clarifying or in the worst case scenario deleting then that would have been dealt with by a forum moderator the same day. A posting containing bad language would have been removed instantly as some sufferers reading the forum are sadly children. The quality of posts on the board was permanently high. During the last 4 years I have seen such posts which have remained unaddressed for days. At times it seemed like a Trustee might look at the forum once or twice a week. It no longer seemed like the expert area it once was.
Furthermore, pre 2011 there would always be initiatives on the go on the forum, generated by Trustees and Officers, and they would be posting on the forum on a daily basis. The forum had a family/community atmosphere including fun areas for sufferers trying to take their mind off the pain. During the last 3-4 years it feels like the Trustees and Officers have abandoned the ship as far as the forum is concerned.
The main benefit of the £13 membership fee is that you get access to the forum. Access to FB is free. During the last 3-4 years it seems like all the action and efforts have been targeted on FB. My point is you can now see that someone who has been paying their membership fee for the last 3-4 years solely to have access to the forum might feel, at best disappointed, at worst let down, and might conclude that their membership fee had been diverted from the forum to FB. Again, I'm not saying it has, I'm pointing out how it might look to old school members in order to help you alleviate their obvious frustrations.
I suspect some old members might be thinking that a decision could have been made 3-4 years ago to charge FB users £13 and make this forum free given the way things were going.
Sean
p.s. I'm a sufferer too
__________________________________________________________________________
Warning: This forum may contain nuts
Sean,
let us be absolutely clear, your criticism is welcome, I did however leap to the defence of an individual sufferer with particular needs and indeed the team who responded to him, myself included to highlight a misconception that it's a free for all on Facebook, it's not never has and never will be.
There was no decision 3-4 years ago to abandon forums, unlike many of our sister headache charities across the UK and beyond. Indeed the board meeting in Aberdeen just last week forwarded plans to make it easier for those that only use social media and those that only use forum based applications to be much closer together.
ref your membership fee, it is currently being used as part of the overall charities collective goals a significant portion of the monies raised through membership is currently being powered into the upgraded website and forum and running the helpline service, As well as providing information to our off liners who make up a not insignificant portion of our membership.
Sean, I think you are a great support to the charity. We can play Kiss chase with this all weekend long if you wish, however we have accepted Harriet's concerns taken on board the additional concerns and are moving forward to a solution.
Guys, I feel a little distressed that an altercation appears to be arising.....I am very mindful that airing issues can understandably, provoke feelings to run high; and I am no stranger to situations where one can end up feeling 'Why do I bother if all people do is find fault' and I am truly sorry for any such result. That is emphatically not the aim of the exercise.
It is clear this issue touches different nerves for all of us, as is often the way with the diversity of human beings. I think all of our 'nerves' are legitimate and I hope that this will go down in OUCH history as a time when important issues were examined and OUCH became stronger as a result, rather than anything else.
Scott, thank you very much for sharing the specific decisions of the board. I think it is really helpful for us all to know the boards formal response.
And I appreciate your explanation that the web team needing to focus on the new website resulted in a decision to defer news sharing. I wasn't aware that a new website was already being planned and worked on, and if I should have been and have somehow missed that info to members then I apologise for not being more switched on.
Until yesterday I did not know that the website was not mobile friendly, clearly that will be a major factor in the wider situation, I think it is a fantastic development, and we wait to see how that plays out.
It is interesting to hear that the Facebook page is 'private'. Would I be right in thinking this means that it can only be viewed by people who have asked and been permitted to join it? In practise I wonder how private that really is........how much is really known about the originator of an electronic ask?
At this point I would like to say to all involved that my original and still primary concern is the exclusive nature of Facebook. To be absolutely clear I am not referring to people who are free to use it but don't want to. I am referring to those who are NOT free to have a Facebook presence.
Amongst people I know well (nothing to do with OUCH or CH) are someone who years ago was a victim of serious organised crime who was tracked down via Facebook, a close relative was contacted, threatened, and the overall threat now remains to them and their children; and two people who were victims of horrendous bullying campaigns on Facebook that resulted in serious mental health problems; I could go on...
There are people whose work prohibits them from using social media; people with all manner of personal/family circumstances who need to protect themselves in different ways; and people who have been victims of certain crimes are advised by the police that to protect their long term safety they should not use social media.
There has been a huge rise in the use of social media, but now it has been around a while the risks are becoming more apparent. Last year the UN produced a worldwide wake up call report about online violence. One of their findings was that women in the age range of 18 to 24 are uniquely likely to experience stalking and sexual harassment in addition to physical threats and the BBC quotes figures that 26% of young women have been stalked online.
There is a reported rise in adopted children being tracked down and contacted via Facebook; victims of domestic violence can be tracked down and it is well know that if found after leaving, any resulting violence is likely to be even more severe. Domestic violence has more repeat victims than any other crime and the 2015 report by the Office of National Statistics states that two women are killed each week by a current or former partner. Other figures state that in the same way 30 men are killed each year.
The dark side of social media is not the specific concern of OUCH, but clearly there are many valid reasons for affected individuals not to use Facebook at all. This may be inconvenient and irritating, but it is much more than that for the affected individuals.
My real plea to OUCH is that because its mission is to be inclusive and ensure that all affected by CH have the opportunity access information and support, OUCH makes decisions always bearing in mind that anything that is on Facebook is unfortunately, by it's nature, exclusive.
Harriet.
Afternoon Harriet,
dont worry what is on display here is concern to address the needs of all our members, not nerves being touched, or indeed a disinterest from the board.
the website upgrade hasn't been publicly announced yet (coming soon), but it was important from my perspective to Present to you that we were already making moves to address these concerns raised.
the Facebook group is private so in reality nobody out with that group can see what you post. however you are correct, it's a collection of 2500 individuals and in that regard just like here caution is to be urged. Indeed just such a post was made by me last night.
With regards to checks, we do actually check profiles prior to submitting them into the group and those found to be breaking the house rules are like here, moderated and if needed removed. However it is the internet, to truly be safe then you need to live off-line.
to finally reiterate, the website is our primary resource. What's on Facebook that isn't here is purely because of my decision to delay it rather than a deliberate attempt to create exclusive Facebook content.
i hope your trust is restored in us a little.
Scott
hi sean, scott, and harriet, all make verryvalid points, and we need to be patent a little longer, now we are imformed of the impending up dated fourm lets put in posative in put, and yes some areas will hit nerves its the nature of being resposible for the organiseation as a whole, delagation the key there shareing the load working as a team, some of the postes that may not have seen to answered may have bin answered by pm as some times i do as i feel personal details should be kept of the fourm,
hi dorathy, the point i raised about my clubs charity fund raising is valid, i feel the responce was poor theres a few members asked why it wasent mentioned, what can i say? what can i show as thanks to a club that worked hard 2 weekends apart from an email,, i also premote motorcycling as well as ouch and will continue to do so, big plans ouch wise next year,, please take on board what i have saed small slip broke a heart, yes i gave details of poem and club and foto but couldnt find any where under hat?
i seem to keep hittin a brick wall with thise thngs, let alone asking about the logo? see simple question i know the legal ins and out ect,, but a simple consent signitures will make this legal, if its a trust thing i will gladly pay for anyone that ouch trust to be there on me gladly, as were coming up to the anerversrey of me asking about it, could a wave somthing bigger than a tee shirt for ouch? i will pay for it and donate it to ouch gladly,, all the best working to gether d
Darren,
sorry, there's a very human element to collecting collating and publishing the fundraising efforts of our members and their supporters. The latest chit chat was changed to reflect the effort of members, the conference programmes too, and again the new website will have a specific page dedicated to our fundraisers.
we picked up those issues and are actively seeking to resolve them, we don't mean to snub anyone, but sometimes the copy typist doesn't have the space to include things.
ref the logos you have had direct answers from me on that one, and you will have noted by the changes reflected in the Facebook covers today that we were and are going through a logo change, which would make stickers or anything that you had proposed to produce out of date by the end of the month.
We do exercise tight control of our logo, it's not that we don't trust you Darren, but there are tax implications as well as legal considerations over the production and selling of merchandise.
regards
scott
hi scott ,thanks for the reply about thr logo, its likely ive miss under stood your past answer, my learning difficultys there, i do tend to look for a clear yes or no perhaps lost in the explanatoin,
i will be doing more for ouch next year but will chat with staff on that one as i will need your advise, so next conferance all being well,,
staff and members alike we will make it work well tgether, looking forward to the new fourm and a bright future tgether, d
I look forward to our next meeting Darren your fundraising efforts are well regarded.
Hi Scott,
Thanks for that (post 34). It is good to know that stuff was already going on behind the scenes that will improve things.
I haven't lost trust in OUCH, I was just concerned that certain things had gone a bit off course. My support for and commitment to OUCH remains, as does my appreciation. Actually, I think that the level of concern shown publicly and privately speaks for itself.
Thank you.
H.
Good morning Harriet
well done for all your posts all done and said by everyone to benefit the forum.
no malice or criticism just concern to keep the forum that benefits us all.
we all appreciate the hard work that goes on to keep OUCH running as smoothly as it does for all,I for one very grateful to all so it is also healthy that members can point out their comments and concerns.
Elma
If nothing else, this debate has answered my "Is anybody there?" question!
Lets hope that the forum is reinvigorated as a result.
MissKittyB.
Can I just say that all mediums are very helpful . As a 40+ sufferer I have a few problems with processing information .
I find the forums very difficult to negotiate and the OUCH group has been my life line . The helpline my life saver .
I'm just glad there is a choice as I have never been able to get much help on the forums my brain just doesn't work that way.
Glad all things are out there to help people and the OUCH voluteers and trustees are there to help us all when their own health allows
Karen
Although I can understand some people feel they are missing out, it is a personal choice how members choose to access help. In the same way some people choose not to use Facebook, it is other's right to access information in their chosen way.
Facebook is easier for an awful lot of us because there is instant feedback, in a messenger type format. The forum is slower and it's like waiting for an email.
For me personally, Facebook has been a lifeline. In the wee small hours, there's always other sufferers to talk to, in realtime, to help.
I am not a Facebook fan in my personal life but you can have a profile made that only you can see and then when you join the OUCH Facebook group - it is a closed group and nobody out with the group can see what you post. You are therefore able to remain as invisible as you like. It is a free service that these days is invaluable.
I have only seen this post as I came to look at the new format to the website.
I understand your comments. Still, I encourage members to use both. The forum here is where we "veterans" first met, received our first support and found out about conferences to attend. Without the original website my life would have been very different. We have choices now and that's good. Hopefully the new mobile friendly website will make things easier when people want to pop over here for information. In addition to getting info though, there are some really nice people here on the forum to chat to who, for various reasons, choose only to use the website. There are already some familiar faces who post here as well as in the facebook group but I'm hoping to see more soon.
Dorothy (Trustee)
I noticed a comment from Val today that's its very quiet on here.
As has been said before social media seems to be the place to go but it is very unstructured. To find something specific is not easy and there's loads of other material to wade through which may be very relevant to those posting but not to others.
Again it's been said before it's free to post on Facebook and the posters are getting desperately needed advice, often from Ouch and it's an important and perhaps unique service.
The website forum provides a much more structured response and whilst it remains only members that can post on the forum I personally don't see it getting much busier. I don't have a problem with that since it is member services (and donations/charity events) that help provide the funding for Ouch and to enable the charity to support others in need which of course includes those on Facebook some of whiom may not be aware of the website or perhaps not able to afford membership. Hopefully Ouch does get new memberships from Facebook users.
It would be nice if we had a more vibrant community on the website. Having said that the response time to questions from Ouch on this site is very good and the quality both excellent and trustworthy which is more than can be said from some non Ouch Facebook posters.
For someone who takes an interest in the Charity then between the two media I can generally find what I need. The only thing that might be useful in promoting the Charity and would perhaps be more information on the website about the Charity itself. For example, annual reports, summary of trustee meetings, and activities against the Charities objectives. This would give members and non members a much broader view of the Charity and where they may be able to help and provide ideas. It would also demonstrate how little money Ouch have to operate with and perhaps encourage help in this area. Some of this can be found in other places but it would be good to have everything here. Just a thought.
John