Hello, I am currently putting together a proposal to do a study about patient’s experiences with lupus/ other CTDs. Having personally experienced some very good and some very poor consultations recently and read posts about similar experiences, I’m thinking focusing on patient views and experiences of how to improve patient/ consultant interaction to enhance correct diagnosis and management.
If I get ethical approval, I’m hoping lots of you would be happy to be interviewed please?! I really think a scientific paper will have the widest reach to improve the situation.
So in order to get the proposal accepted I need to demonstrate the necessity so I’m planning on detailing some of the weirder mis diagnoses and ones we find most offensive and unhelpful. From other posts and speaking to people I have:
Menopause, health anxiety, functional disorder, alcoholic, scurvy (that’s my current favourite!), depression and a lot of ‘it’s all in your head’ !!
So please can you send me any ideas to include in the paper, anything you want to see improved or has worked well and your worst mis diagnosis (message me privately if it’s not one you want shared - I will of course anonymise if published)