A Year of Therapeutic Education at National Center of Systemic Lupus

This year again has been eventful!!

Indeed we first have sustained the Therapeutic Education Program always offering 6 learning sessions per month. Moreover, thanks to the availability of caregivers of the team of TEP we have established    « Education Saturdays ». In one day, we animate the 6 sessions of the program, in parallel 2 by 2, which permit to the patient to assist at 3 sessions in the same day. Further advantage for people in activity to attend sessions away from professional constraints, this formula is very friendly. Indeed, patients and caregivers have more time to discuss on a full day than during sessions offered during the week and especially at lunch time, which is a different opportunity to address others aspects of Life with Systemic Lupus. Judging by the presence of a small twenty patients each time, these days are very successful !

Especially, 2013 has been the year of the finalization of the « Intervention of auxiliary patients” in the TEP Program. Already, we asked patients and patient organization to elaborate educational content of program. We also reflected with them (Marianne Rivière, President of AFL+ organization) in ways of intervention of some patients in TEP Program (see Charter of Auxiliary Patient). This become a reality in 2013!

Indeed, among the twenty patients that we have proposed to invest in animation of TEP program, eight have been available to receive a pedagogical training of 12 hours (over 2 days), which took place in April 2013. Thanks to leadership of our educational partner, EDU SANTE, and especially investment and inventiveness of participating patients, this training was very productive :

                     –  This first day of this training was turned toward the « Pedagogy » and was opportunity for patients to learn to relate an experience (by taking the distance and managing emotions, etc…). More importantly, it’s about to learn how to match the time of the lived experience with the educational objectives of each learning sessions (defined in the TEP Program of the National Reference Center).

                    –   The secondary day was an opportunity for the patients to provide many « idea for the future ». So, in order to enrich the current contents of the TEP Program, but also to expand the supply of TEP, auxiliary patients have planned to :

• Post a guide « Tips and Tricks » useful to patient and create « Frequently asked questions » on internet from questions or remarks made by patients during the learning sessions, so that answers can be shared by many more people.

• It was intended to create a Seventh Sessions of  TEP  dedicated to « Fatigue, Disability, Self Esteem and Sexuality ». A such session will be organized by patients themselves under an initial partnership with the educational team. The means to achieve developing a rich session (relaxation therapy, make up workshop, etc…) are being evaluated. We have higher hopes that this session will be launched shortly!!

So, after this training, some TEP sessions were facilitated by a auxiliary patient. In the opinion of all this is an additional asset. Here are some testimonies :

     – Pauline, Auxiliary Patient : « Patients seem to appreciate my presence; I felt my word considered, it was a real plus for certain. I have really enjoyed the day and I also like to start again as soon as possible”

     – Yvette, a member of the healthcare team: « I thought it was very positive! As the auxiliary patient experiences things from the inside, I feel she is better understood « 

     – Kelly, a member of the healthcare team, « It is certain that when the auxiliary patient openly approves me, it gives more importance to what I say »

      -Mrs. O, mother of a patient who attended at a meeting with her: « It seems that the auxiliary patient expresses things we’ve already experienced, she knows what you really feel. Yes, it was very positive. »

The TEP will therefore continue and continue to evolve thanks to the dynamism of patients and caregivers. All stakeholders are grateful! The coming year is already very promising, including the extension of the TEP program in the several centers in Region…..

Dr Baptiste HERVIER

Department of Internal Medicine 2 of Prof Zahir Amoura National

Center of Reference of Systemic Lupus

Pitié-Salpêtrière Hospital, Paris