EiR Patients Meeting
On Thursday 26 and Friday 27 January, the Patient Meeting Committee welcomed an audience of patient delegates attending what was the first Patients Programme to take place during the Excellence in Rheumatology conference, Madrid, 25-28 January 2012.
The Patients Programme was developed by representatives from NRAS, National Rheumatoid Arthritis Society, Lupus Europe, the NHS (National Health Service) and rheumatologist clinicians. It comprised of two half days, including a general part and two distinctive parts focusing respectively on issues related to Rheumatoid Arthritis and Lupus.
The varied sessions ensured that the audience was informed on latest treatment developments and stimulated to exchange information, experiences and ideas together with the local and regional active patient representatives. The programme also included keynote presentations on the psychological effects onto patient management, doctor-patient communication, interactive workshops discussing pain in a daily reality and exchanging personal experiences and ideas about pathways from the newly-diagnosed to treatment, and patients’ expectations of rheumatological services.
Fifty patient delegates were able to attend the meeting thanks to a full bursary covering registration, round trip travel and hotel accommodation in Madrid.
All patient delegates expressed their appreciation for this opportunity. Learning and key messages from the meeting will be passed on in their respective patient communities via their own communication channels in their own countries and languages, so that to ensure greater and wider benefits are spread well after the conference has finished.
Some of the many testimonials from the Patient Programme attendees:
"Glad that I was welcomed to join – lots to take back home!" (Patient Meeting attendee, Canada)
"Meeting has been stimulating and informative. Very good for networking both amongst UK group and with others. A learning experience in many ways. Many thanks." (Patient Meeting attendee, UK)
"A marvelous event. I especially enjoyed meeting patients from all over Europe…All presentations were of high quality and stimulated me to make more changes in my behavior." (Patient Meeting attendee, UK)
"Thank you for this excellent opportunity to take part in this conference". (Patient Meeting attendee, Estonia)
"The first patient delegate stream I felt was a huge success. The venue was very good, the speakers were informative, interesting and above all, understandable to us as the patient. It has been a privilege to attend EiR on a bursary and I have found the experience of great benefit." (Patient Meeting attendee, UK)
"Excellent opportunity to learn and exchange ideas. So useful to have the chance to talk to healthcare professionals as well as patients." (Patient Meeting attendee, UK)
"On behalf of the five UK attendees, I would like to thank you for all your help and of course for giving lupus patients the opportunity to attend such a well organised and interesting conference. We all learned a great deal and will make sure we feedback information in as many ways as we can." (Patient Meeting attendee, UK)
"Being back in cold Denmark I sit with a smile and a very good feeling of having had a wonderful experience in Madrid at the Excellence in Rheumatology. From the very beginning and to be home again it has been a great experience of a very caring hostess and organization giving me the opportunity to learn a lot about SLE, as well as meeting other patients with the same disease…I was so lucky to be allowed to take some pictures of the three great ladies in rheumatology doc. Betty Diamond, doc. Michelle Petri and doc. Joan Merrill sending their best wishes to the Danish SLE/Lupus group, how lucky one can be. So…thank you so much for helping me to join this conference." (Patient Meeting attendee, Denmark)
