Education meeting

[Nettac]

I've been invited to one of these at the hospital. Anyone else been to ?

[Traceydc]

Is this in relation to pain? I have been invited a few times, I did attend 1, but to be honest I found the ones running it a tad condescending! I'm certainly not indicating all are like this particular 1, but they come across very inexperienced & more interested in what have you got, how bad is it & we overheard them discussing who they thought might be malingerers!!!! 1 even said to me that her friend's husband died of what I had, MS!!! (not true, MS doesn't actually kill, the complications of it can, but not the condition itself) I might be wrong, but in my opinion, if they are advising on managing pain & giving seminars they really should research their participants many reasons for their individual pains & how they could improve them. Please don't think I'm implying they all behave like this, but I did actually complain to the PCT that were running it, apparently we had volunteers doing ours, which would explain their ignorance (now whose condescending!!!) only joking, but seriously, if it is organized properly & you feel it will benefit you, go for it, if, after 1 visit it's not for you, you need not return, there's no obligation.

[Nettac in reply to Traceydc]

I think I've been offered it instead of a practice nurse!

I spoke to GP the other day explaining that I was very depressed. I also explained that I felt the depression was caused by inflammation because drugs were not working. Sure enough everything flared up!:

I think GP misunderstood what I was asking for. I understand PsA very well. Mostly I'm frustrated at inadequate treatment. Being stiff and in pain is depressing!

However, I think its now being acknowledged that the meds aren't working. I got a steroid shot today.

I might go to meeting just to check it out.

[Traceydc in reply to Nettac]

I'd definitely see what it is, if only in curiosity!! Hopefully it will help, if it's like my experience, just walk away & laugh!!!! Good luck

[Gnarli]

I think they've given up on educating me! You've nothing to lose really, Nettac. If its useful, great. If not, it's an opportunity to meet others and maybe free coffee or tea. You need not go again if it doesn't suit after all. Big hugs for you and your beautiful boy

Jan

[oldtimer]

Education meetings are often useful, if only, sometimes for discovering that you are yourself an expert!

On this subject, though, have you thought about seeking out a local group? - they can be really useful in providing a forum for discussing your condition and getting tips on how to manage it from the experts themselves.

[Nettac in reply to oldtimer]

Yes I have thought of joining a local group. Not sure how to fo about it.

[oldtimer]

Ask NRAS for the contact details of your local group. You don't need to be a member to attend.

[Nettac]

Thank you..

[Gnarli]

There isn't a group for RA/RD near me. The closest is about 15 miles away which is a shame. I'd love to meet up with others.

J

[Traceydc]

Depends on whether it is a general meeting or 1 specifically aimed at those with RA, 1 attended was for all types of pain, MS, Cancer, RA etc. Bit of pacifying I thought, personally, I think trying to 'educate' the 1s with these illnesses is rather belittling, surely we have 1st hand experience?!!! After all, we know what our illnesses do, we are not text book & unless the 'educators' are suffering these ailments themselves, how the hell can they educate us?!!! Just a thought....

[Nettac]

Letter just says an invite to attend education session on inflammatory arthritis. Says it's a chance to meet rheumatology team, and learn about disease, and how to manage illness. It might be interesting, and good to meet others. That said, I've had to do a huge amount of research on my own anyway...just like everyone else I suppose.

[Traceydc]

yes definitely go & meet others, as for learning about the disease, I'm sure you are the expert, managing it, well we have no choice!!!! Be good to meet with people in the same boat so to speak. I've had a bad experience, makes me cynical, sure you will be enlightened. Let me know how it goes, can't be worse than my encounter!!!!!

[Traceydc]

Nettac, do you know what?! I might as well say it, I find the title 'education' downright rude & condescending!!!!! You are not a child & don't need telling how bad the condition is or what meds THEY recommend to throw at it!!!!!! Bloody hell, I can bet not 1 of the 'educators' have it!! Sorry, but I hate it when they think that a cuppa & a white board will put things right, it won't. Telling you, do this, don't do that, lose weight, run a mile every day, yeah right. I apologize for my annoyance, sure they mean well but unless they are living with these conditions, they only know what they see. They aint in your shoes & in reality, they wouldn't want to be. You don't need educating hun, you need understanding & support, I really hope that's what they are giving you, they need to revise the title I think!

[ITYFIALMCTT in reply to Traceydc]

Someone posted a link to a video of an 'educational' talk by Dr McDougall about the wonders of his diet for inflammatory arthritis. McDougall lost me completely and utterly (altho' I was already annoyed by his cherry-picked references to support his assertions) when he claimed that *every* patient who turned up in a doctor's office with inflammatory arthritis needed to be instructed to lose 50-60lbs and this would put them on the road to feeling better.

Eh, I'd be dead, I think. I currently weigh 100-105lbs and I doubt I'm that unusual.

[Gnarli]

I'm about 4 pounds heavier than usual at 126lb (steroids) but I don't think I'll be following his diet. Being skeletal would not suit me.

J