Please complete the research survey!! Your experiences and views. Diagnostic journeys, misdiagnoses and relationships with doctors

[MelanieSloan]

Many thanks to all of you that completed the lupus experience questionnaire - we have well over 100 responses and some very useful combined information that will really help people in the future. I will share it with you all as soon as I can as it is already showing some very useful combined experiences. If you haven't completed or only got part way through (I realise it is quite long, quite a few people have stopped part way so please continue/restart if you have the energy!) please do try and complete because the more we get the more the Drs and policy makers will listen to the patient views - bit.ly/LupusQre

Please remember that responses from ALL members of Lupus UK will be valued and published (anonymised) so if you have a different disease or are still in that diagnostic uncertainty stage please do also complete. Whether you have had good experiences or bad (or a combination) your experiences will help others in the future and help doctors understand how patients feel.

The info and links are all on Paul's pinned post about the survey but please do contact me if you'd like to give any more information or feedback about the study/ questionnaire.

[e-mail]

Thank you very much!

[Barnclown]

WOW & YAAAAY: 100 in already...even more to follow...i just messaged several lupus buddies with the link to Paul’s post about this...am copying this link in below now cause its discussion was songreat that readers may want to go there once they’ve read this news + comments from you here

Thanks melanie, for everything

XOXOXO Coco

healthunlocked.com/lupusuk/...

[eekt in reply to Barnclown]

I was wondering about posting on the Vasculitis forum - where I drop by now and again for first-rate nose advice - given the overlap and uncertainties and even longer times on the diagnostic odyssey faced by folks there?

Strength in the face of adversity: by golly, I need it and I'm finding it here. Thanks Coco, Melanie and everyone on the forum and at Lupus UK xxx

[MelanieSloan in reply to eekt]

Yes please do Eekt, lots of overlap and valuable responses.

Early results are showing the most positive ratings for level of support are that provided on the forum with some fantastic responses and ideas to help diagnosis/ medical relationships so the more we receive the more impact we can have!

[Barnclown in reply to eekt]

Good Idea: GO FOR IT👍👍👍👍

on my forums re other conditions (SRUK, PID, hEDS, DES Daughters etc) there are lupus patients...i never know if they’re aware of this HU LUK forum...gotta be possible there are VUK forum lupus folk who haven’t yet discovered LUK 🤷🏼‍♀️....❤️🍀❤️🍀