Please can I just remind people to be mindful of not asking questions that request medical advice. Whilst we are happy for people to share experiences of symptoms/side effects etc, medical questions/advice should be directed at the individual's healthcare team, as it puts other forum users in a difficult position and can lead to people giving what could be deemed medical advice, which can of course be dangerous, especially without knowing the full facts.
(EDITED - examples added to post for clarity):
For example:
"Just up your steroids, that should reduce the swelling" would be medical advice, and could be very dangerous. However, you could say:
"I went through something similar, and my rheumatologist upped my steroids, which seemed to help. Maybe give them a call and see if they are happy for you to do that?"
It's a simple change of wording, but it makes a big difference. Also, some people go on the forum asking questions that are asking for medical advice. For example:
"I forgot to take my medication today, is it okay to double the dose today?" This would be an inappropriate question, as people may answer with a yes or no, based on what they are able to do, without knowing how different this person's situation might be. We therefore discourage both medical questions and medical advice.
If you notice anyone asking for or giving medical advice, please report this for the admins to look into. Reporting doesn't mean someone is automatically in trouble, it is just a way of alerting us to any concern in a particular post or comment.
Many thanks
Victoria
(NRAS)
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Discussing meds, their effects, side effects and new research is a very big part of this forum. Could you please elaborate on " medical advice" how would you define it?
I’m not sure either, I’ve just suggested to someone who says her husband has dry eyes that he uses preservative free artificial tears and outs them in frequently throughout the day. I did suggest that her local optician could advise on what type to choose but I also suggested the ones I use.
I’ll go back and suggests he sees his optician to make sure his problem really is dry eyes.
As I see the present situation a very big part of the forum talk is in fact medical advice. Meds are a central part of our treatment and forum members have a lot of know how. We also know that everything is not picked up by doctors. If we as patients are helped to view our situation from different angles it can be seen as understanding our treatment better and giving new thoughts to share with our doctors. This is how a good relationship is built.
I think the safest thing may be to say " I have found X useful but Ask your medical team before trying" Their doctor will have full info on someone's condition.
There may be cases where for some reason a spouse knows but person concerned is too fragile to cope with certain details of their condition. OK
......not ideal......but up to the people concerned.
So If we suggest somethings without the warning....... that may really upset things.
I know everyone on here only makes suggestions with the best intentions, but care is needed.
Don't most folks know we are not docs? Seems obvious to me. It's a support forum not a GP surgery. Though to be fair, its often more informative on here! 😁
Yes, I don't think anyone on the forum sees themselves as a replacement for good medical advice but many of us do have experiences that are far superior to that of any Dr.
For example my rheumatologist said she had never heard of people with RD being hot and on fire overnight and said it must be the menopause , which I had 15 years ago !
Whilst many people on this forum advised that feeling hot and burning up at night is a common phenomenon of RD. I could give many more examples of medics just not knowing common issues RD people have.
So not medical advice, but the advice is far superior.
We have always had this as a pinned post, but I re-posted it, because it had dropped down a bit in the 'pinned posts' list.
As AC has said, it is basically all in how you say it. This is absolutely a place where people can discuss their medication and condition, but it is NOT a place for medical advice. Discussions should be more about your personal experience, rather than you advising someone else on what they should do. For example:
"Just up your steroids, that should reduce the swelling" would be medical advice, and could be very dangerous. However, you could say:
"I went through something similar, and my rheumatologist upped my steroids, which seemed to help. Maybe give them a call and see if they are happy for you to do that?"
It's a simple change of wording, but it makes a big difference. Also, some people go on the forum asking questions that are asking for medical advice. For example:
"I forgot to take my medication today, is it okay to double the dose today?" This would be an inappropriate question, as people may answer with a yes or no, based on what they are able to do, without knowing how different this person's situation might be. We therefore discourage both medical questions and medical advice.
Yes, as you say, most people know not to do this, but it does come up reasonably regularly, so we try to keep a pinned post about it, to make newcomers aware, and even some regulars have accidentally done this on occasion, by just being too assertive in their language, saying 'do this, it's great' rather than 'have you tried this. It worked for me'.
Hope that helps clarify. I will copy the examples and put them in the post itself.
To elaborate on why I asked the question on the short time I've been on this forum I've ascertained how supportive, helpful and how widely knowledgeable the admin team are on our medical conditions. Consequently I was curious.... It's does not feel great being told that my question is not relevant!
My point is all questions should be considered relevant! As long as asked in a sensitive, supportive manner and with the utmost respect to people's feelings, thoughts, personal situations and their anxieties etc then we should feel safe enough to (within this framework) express curiousty. It's a forum whereupon people work in partnership offering mutual respect, guidance and support. Whist I may have gone off piste with my question it was relevant to me! Often when a post is put up peole identify and explore different options, thoughts and feelings, some of which may come across irrlevant to the question in hand, however who are we to stand and judge and make assumptions on what we deem relevant or not.
I don't personally have RA or a health condition. As Aged Crone has suggested, it isn't for me to divulge the health conditions of my colleagues, but I can choose to discuss my personal experience. I can also say that Ailsa, our Chief Executive, has RA herself and this is why she set the charity up. We all work closely with her, and I myself have friends with RA as well.
In terms of my experience, I have worked at NRAS, within the helpline team, for over 10 years, responding to over 6000 contacts to the helpline. I would never feel that this in any way means that I know what you all go through, living with this condition on a daily basis, but I do have a very good knowledge of the condition, medications, rights at work etc and I also have a good overview of the way people feel about their condition etc through all those conversations, though as I say, I would never claim to know that I knew how it felt to really be going through it.
I am not trying to restrict the TOPICS discussed, just asking people to avoid giving potentially dangerous medical advice, like the steroids example I added to my post (not sure if you are commented on the initial thread I wrote, or if you have seen what I added, to give people examples of what I meant).
If this is still unclear, please feel free to contact me by direct message or over the phone in the office to discuss. I don't want people to feel restricted, it is just dangerous when we have situations where people TELL someone to do something, rather than suggesting it might help or helped for them.
Ok. We know we are all very different in personalities and characters. It's normal! What I don't understand is ' why is this post getting left unanswered by the admin team? It's been such a long time. Can you reply or let us know why you can't reply?
I have replied twice to this thread, most recently 1 day before you left this comment, so a little unsure what you're referring to in terms of this going unanswered?
Regards
Victoria
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This is a disgrace
