“The rules of the Forum have been developed over time, this is to protect any misleading or inaccurate content being shared with the wider audience.
Please ensure any external links to articles/videos are shared with the Admin team for validity. This is because we strive to ensure the Forum is a safe environment for all members, therefore we ask that the links have been approved on behalf of the AF Association.”________________________________________________________________________________________
Most charities tend to rely very much on support from members who volunteer their time, energy and experience for the benefit of others who reach out to the charity for help and support. It is assumed that charities tend to appreciate the help provided by their members because very often, without it they would find it very difficult to fulfil their objectives in supporting their members. Of course, forums can and do provide a valuable vehicle for sharing information but sometimes they can bring additional challenges which need to be managed to ensure nothing is compromised. However, if there is no tangible benefit, adding to the workload will have a negative effect. Although your members may not be experienced in managing a charity and/or forum, it’s very likely that they possess a wealth and variety of experience which might be worthy of some consideration.
In a commercial environment, enforcing change for the sake of change is rarely a good idea. If it ain’t broke, don’t mend it is a simple, classic example of good management.
Up until now, within an instant, we could immediately provide newly diagnosed members with expert advice from medical experts that will have an immediate impact on their ability to come to terms with their condition and Admin seems unable or unwilling to recognise this simple fact. Surely this is even more critical when members find it almost impossible to seek face to face medical assistance from a doctor, any doctor let alone a specialist.
So it’s always a good idea to assess the need for change rather than enforcing it on a whim. Hope you agree on the concept.
It should be easy to determine, excluding the recent legitimate links which are now included, how many links you have had to remove in say, the last 6 month which have fallen foul of the rules relating to promoting, advertising or drawing attention to someone’s website, blog, product or business. If the answer is possibly as near to zero as makes no difference, perhaps the need for change becomes less necessary.
If there have been any genuine links removed, the next step would be to establish how you were made aware of these infringements. The options are limited to either Admin input or members reports. Of course, without the data it’s not possible to know, but from what has been said in the past, I would imagine Admin input is as close to zero as makes no difference. Therefore, if there have been any member reports, any change you impose which is clearly not essential would likely alienate the very people that so far have helped you to keep this forum a welcoming and safe place for members to ask questions and share information.
Is it really surprising therefore, that members who perhaps possess a better understanding of basic management than Admin might give them credit for are angry and disappointed at having change imposed which is unnecessary and will achieve no additional benefits to anyone, on the contrary, it will stop them from being helped quickly and effectively.
Of course it’s your charity, your forum and your responsibility to make it work and of course, we are not aware if there are any genuine external influences such as your relationship with HealthUnlocked. Perhaps it might be helpful if any members of this forum who have experience of using other HUL forums could tell us if they are aware of any similar rules enforced by other forums.
I hope there is no suggestion that I have been disrespectful or unreasonable in my assessment of the situation that would cause this post to be deleted…….
Well said, I notice the number of replies to newbies is a) not as rapid nor as numerous or b) as expansive and welcoming.
You in particular FJ have put a lot of time and effort in promoting and fund raising for the AFA so I am particularly upset at the stance admin are taking.
On the positive side - as I will not be commenting I should have a lot more time to dedicate to other interests.
Thank you CD, I know we haven’t always seen eye on somethings, but we have always had a common goal…..maybe you can go back to your first love, sailing 😉
Thank you Flapjack for caring about this forum so much. Any newcomers here please checkout Flapjack’s posts under his bio - eg “Anticoagulation considerations for newly diagnosed AF members” - a very informed, helpful and intelligent post that incidentally includes 2 links, both to that rather fringe organisation “The AF Association”
This is a hard one isn’t it. In this age of internet influencers, conspiracy theories, charismatic ex-scientists trading the enquiring mind for hard selling certainties, I for one wouldn’t relish the idea of being an administrator having to decide what is and isn’t a legitimate link. I wouldn’t want to be dealing with the kind of upsets that arise when one link is deemed ok but another receives complaints and is borderline controversial.
In the balance, I think as long as there are responsible members prepared to keep this forum safe, then we should respect one another’s input and treat one another as intelligent and supportive individuals, capable of maintaining the very high standard we’re all used to on this forum. In my own experience running a social network (community not digital!) the more you believe in people to behave responsibly and work for the common good the better the outcome.
When I came across a dodgy link (someone offering to pay members to participate in research) I was straight away messaging with other members to discuss what to do and we were quick to report it.
I hope the administrators will join this discussion and recognise that as the main supporters of this forum the members are capable of sharing links without needing policing. The pseudo science, the conspiracy theories, the internet influencers are not going to go away. All the more reason we learn to recognise and deal with this ourselves.
I think it's sad that the administrators of this forum feel that they cannot trust the content of York Cardiologist Sanjay Gupta's helpful YouTube presentations. He explains in a clear, easy to understand way, how problems with AF occur and can be helped. His posts will certainly be missed by so many members of this forum.
People often come on to this forum when in deep despair and we members can provide instant support to them. How long will it take for you to approve a link we want to use? What if it is a Saturday and no admin are on duty. The words provided from a link to a qualified cardiologist can give instant reassurance to some posters.
I would beg of you Admin to allow us to go back to how we were without this new rule that we can't post informative AF links without gaining consent from yourselves.
We are adults, most with a vast experience and deep understanding of the fear and distress that AF can cause, not children.
Jean
Evenings, weekends and Bank Holidays, no doctors are around then either, at least the post hasn’t been deleted so far so maybe there is hope. I felt really bad about my reply to MausanMumma because it looked like a cheap jibe but it demonstrated future outcomes despite Admins unusually rapid response.
Just noticed posts from Admin advising members of HU Resources and stating the forum is personal experiences and not professional advice/recommendations. Have seen a few of these in the past but the past day or so have been more numerous ?
Perhaps there was a legal issue and/or complaint about advice received which resulted further in a legal complaint to HU ? If so, HU should address within parameters to the forum to promote a better understanding.
This is a great forum, very helpful info, and a family atmosphere. In the US, after being here 2 plus years I am even starting to talk like you all. (beautiful accent)
Totally agree, but where exactly have you seen this mav. I have always acknowledged that HUL might be imposing restrictions on the AFA but why not be upfront about so we can adapt accordingly. What doesn’t make sense is we are told that links are OK provided they have been approved by the AFA and we are aware that a couple of days ago, a video apparently offering professional advice was approved by Admin.
What an absurd way to run a forum for people with a heart condition!!!
Just a guess on my part about the possible legal issue if that is what you are referring ?Just trying to reason what brought on the strict enforcement.
As you previously mentioned, “using a sledgehammer to break a nut”. When members offer advice, many prefer to add a link for complete info. And what few inappropriate/controversial links are posted are often quickly removed.
The fear of legal redress drives these things every time. There's no way a charity could afford the costs of legal copyright challenge. It's a very worrying thing to have received such a thing. Why the admin here enjoy the rather mysterious and close-minded approach they do is another question as openness costs no-one anything, but such is society.
This is such a shame. And madness too. I can only think that there's some pressure to not post links in case of seeming to promote individual medics. On the thyroid forum we're not allowed to give recommendations of individual practitioners but I've not seen this type of policing of links that frankly are useful to members. As Jean says- we aren't children.
I think folk would probably be more accepting if admins were to explain what the reason is. Not great if they are deleting stuff or asking for it to be deleted without advising people what the issue is. 🤷♀️
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