As many of you will know, we are working closely with a team of patients, researchers and rheumatologists on research to identify how people living with lupus, and related systemic diseases, feel about their journey to diagnosis, medical relationships and overall wellbeing. The aim being to raise awareness and improve knowledge and care.
The team, led by a Cambridge University researcher, fellow lupus patient and forum member, MelanieSloan, and also consisting of several other forum members, has produced a draft of the forum analysis for your approval and comments. These can be accessed as Word and PDF files here - dropbox.com/sh/x3krjukg03dj...
Thank you to all of you who gave permission for your quotes to be used, you will see many of them in the paper. Unfortunately, there isn't enough space in this paper to use them all, but they were all used to come up with the overall 'themes' so everyone has played a big part in this.
The philosophy of the team's research is that it is carried out BY the community, so please do read the draft and share your views, either as comments on here for us all to discuss or by emailing Melanie on firstname.lastname@example.org
This is your chance as a community to make your voices heard on a wider stage than the forum, as the finished report will be published in a medical journal and read by rheumatologists, other clinicians and policy makers. We hope this will lead to greater understanding of the challenges faced.
On a related note, we are pleased to announce that I did the prize draw yesterday for the LISTEN study that many of you took part in, and the winners are: FIRST PRIZE of £100 to Fi and SECOND PRIZE of £50 to Katie. They have been informed of their success in the draw and given permission for us to share their first names. Thank you so much to all of you in this study and for completing your questionnaires. There will another questionnaire in 8 months and another chance to win the prize draw!