Yet another opportunity to put our point of view forward with a patient survey. All the details are to be found here on the Lupus forum:
healthunlocked.com/lupusuk/...
Melanie has done similar work before - and the PMRGCAuk forum got a mention in the write up!
Unfortunately the link refused to download - did anyone else have this problem?
Just checked -downloaded for me -but can’t complete as not applicable now my GCA in remission
Perhaps we should send you the link to the other survey that is asking for experience of people without chronic Rheumatology issues , you have experience of both now!
That's okay! Good for you I'll handle it.😍 you certainly earned your stripes!
Seemed to download fine for me, although I haven’t started completing it yet
It will not let me get confirm and start, will try again in the morning
You have to accept the conditions first --box turns blue when you do . You should then be able to proceed to next page
Thanks I wasn’t clicking on the conditions just on the confirm box. Will do tomorrow as in bed now
When you get to the part about how your condition affects your memory you will remember how hard you found it to get past the beginning and laugh.
Completed ✔️
Excellent survey, well worth the time spent, I felt. Thanks PMRpro for alerting us to it 😊
Thanks Pro ,
I completed it and I would recommend everyone to do it too. Please take part , every answer counts.
Whether you have had a positive or negative experience , all your answers will help to give them data that could improve our Health Care in the future.
( Let's face it , in most cases our Clinicians could do with some extra training in bedside manner , spotting rare symptoms or in having real knowledge of how to advise us on Self Care).
At the end it suggests that you also send a link to other friends or family whom do not have long term illness but may have had Rheumatology appointments so they can compare the treatment of different types of patients.
If you know anyone in that position please send it to them too.
Right , as I'm in the midst of a Insomnia and Migraine study , I had better get ready for bed and lay awake again!
Thanks again Pro, Bee xx
Done. Thank you Pro.
Done 👍. Thanks for sharing this
See you put it on Vasculitis UK too
Good thinking 👍
That was a really good one! Thanks💞
At last a survey I qualify for (worldwide) 👍 Working on it now in another window.
All done
I filled out the first half and stopped as the instructions said we could do it later with a reminder from them but I never heard from them. It took me an hour to find this site to hopefully get an answer (from you PMRpro?) I may not get to finish as I am having hip replacement in a couple of days and I am going thu frantic searches for all I must take/do/not do. And wishing I was not doing this. They all say it will be ok. That's easy for them to say. Haha. Anyway, I would like to finish the survey. I probably wont have time to read any more forums for about a week and will miss you all.
Did you ask for the reminder? If not, click on the link and at a guess when you get in and enter it it may reconise you. Actually, the second part is faster than the first one, I just went to the loo and carried on and it was fine.
If you have the stuff with you - I find a bit of time on the forum is quite calming while in hospital. Done it a few times!
Thank you. I've just been in a panic mode today. Monday is the day and there is so much to get done-- house/pet sitter instructions, current meds to take or not, bath not to take, no food after 12 midnight, which meant no food with pred so started taking right after midnight so that by Sunday night I could take pred with food before 12. Only 3 mgs but I don't need another ulcer caused by pred with no food. Couldn't sleep all night worrying about strokes, ulcers, ad infinitum, wondering why I am doing this. But then the pain re-appears and I'm glad I am, that all may be well soon. I will try to finish the survey now. Thanks for listening. Will update later.
Yes, do tell us how you get on. It'll be fine. And I'm told the relief from pain is amazing - even if it is a different pain at first. All the best.
Thank PMRpro. I have appreciated this forum so much through the years. I panicked yesterday when I was asked for my password and thought my computer had been hacked and I wouldn't be able to get into the site for a long time. But, miraculously, a day later and a second try, here I am again. I'd drink to that but my meds won't let me.
Disappointing letter from Rheumatology.
NHS assesses risk of Covid-19 infection in rheumatology patients
