mr moderator, or perhaps mrs!
Posted , 7 users are following.
it is truely very heartbreaking that people like myself with various health issues use this site as a means of communication with other "sufferers" getting sound advice on medications, therapy, questions to ask the doctor etc etc, spend ages typing a reply to somebody, only for it to be sent for moderation? grrrr.
2 likes, 17 replies
usch david_25160
Posted
There is too much concentration - at every level I have encountered - on filling in Qrisk assessment forms.
There are rigid guidelines as to how much time a GP - or other medical professional can 'spent' on a patient during one session.
The booking systems the NHS has devised are so absurd that they are almost funny.
Has everybody else had to do 'Telephone Appointments'?
anitquated measures regarding your level of 'normal' like the BMI, are still being used to seperate the lean from the obese.
Basically, GP's are being dictated to what they have to 'offer' to patients - may I mention the Statins controversy?
And, the same rituals are being performed - again, and again.
alzheimer david_25160
Posted
grrrr indeed!!
Why the powersthat be should be so fussy - i don't know but if you mention any info including a website by name - it is disallowed.
C'est la vie ..I guess!
jude65855 alzheimer
Posted
Maybe it's an ethics thing, that if they allow mention of a website they could be seen to be endorsing it and they couldn't possibly check them all? Just a theory ....
I've had people on here email me directly & I've responded with info probably not allowed on here, but I don't know how to do it the other way round yet
jude65855 david_25160
Posted
I'm only guessing, but I'd assume that anything with dangerous or illegal info would resjult in moderation? I've had one post deleted a while ago and I later realised why
jude65855
Posted
I'm fairly sure the mods didn't tell me why they deleted my post, but I worked it out myself
derek76 jude65855
Posted
alzheimer jude65855
Posted
I didn't got told either exactly why I had part of my post disallowed.. But like you jude - I figured it out for myself and it was because I had been too specific when I gave actual websites and they don't like that presumably because it appears to be disloyal to this one - or because if a website is mentioned on this forum - it APPEARS that the mods here are giving it credence !
I agree that it is a silly rule really because like you say we have then "to hunt for the hint" that we have given - instead of going straight to it....grrr!!
jude65855 alzheimer
Posted
I wonder if it's ok to say we have info on a website and then get private messages? Except I don't know how you do that, I've received them but haven't worked out how to send them. Help anyone?
alzheimer jude65855
Posted
So if you ever find out how to do it Jude - do you let me know will you !!
EileenH alzheimer
Posted
If you have had a message, it will show up on the top right corner of this page - where your avatar, name, and "my groups" and "my discussions" appear against a silver grey background box. If you have email notifications you will also get an email telling you someone loves you and has sent a message ;-)
alzheimer EileenH
Posted
Seriously...I am very grateful... And have to admit to have never noticed the little envelopes before.... Perhaps I should've gone to 'Spec-savers"...ha ha
EileenH alzheimer
Posted
Maybe you should change your name...
mrbob84 david_25160
Posted
There's another thread here on this site re. Simvistatin 40mg and memory issues. That should be enough info for you to get to it. When I didn't have any links in my post, it was put up pretty quickly, all things considered. It's in that thread.
I also referred to an article on the FDA's website with new warnings about statins and the damage they can do. Rather than put a link up here to that, it's easy enough to have you just go directly there. A nurse at my cardiologist's office did yesterday, while I was on the phone with her.
Of course another thread here by David25160 is the one I answered yesterday with the links, which probably has not appeared because of those links. Let's all try to provide precise search data to use to find these things we are banned from sharing on this site, if they happen to contain links.
I understand their thinking, they don't want any data on their site that is not valid and helpful, but if they hold posts up for scrutineering, surely they would see that those links are actual, efficacious and not damaging to the site at all. In which case they would be posted on the second day after arrival, like such posts are on other sites.
EileenH david_25160
Posted
If you have particular set of links you want to use regularly make up a post and ask the moderator to approve them - then you can provide a link to that post - he usually puts them on the front page of the forum where all the threads are listed. That's what I have done for my "go to"links in PMR/GCA.
If you have specific ones - put the title/subject but not the actual links and if anyone asks for it send it by private message.I know it's annoying - but given the size of this site it is necessary. Any link WITHIN patient.info is allowed.
Emis_Moderator david_25160
Posted
There is an FAQ section here
http://patient.uservoice.com/knowledgebase/topics/59133-discussion-forums
which is linked to at the bottom of every page in the forums which will answer all of your queries in this thread. If you have any questions feel free to send me a Private Message. I would have replied earlier but was off last week so there may have been delays in posts getting approved and spent this week catching up.
Regards,
Alan
david_25160 Emis_Moderator
Posted
alzheimer Emis_Moderator
Posted
yours aye,,,old alz!