EMPATHY from the patient leaders’ perspective
Katrin Rüütel, Estonian Multiple Sclerosis Society
My overall impression of the seminar is very good, both in terms of contents and organisation.
I found particularly interesting the exchange of experiences with other patients and learn how they cope with their condition. I learnt a lot from discussions on discrimination, especially when employment is concerned.
I am developing a project on the same issue so it is essential to hear about others’ experience.
The presentation on how to put together a press release as well as communicate with media is also something needed in every single organisation.
The EMPATHY seminar equipped me with the necessary skills to involve our young members in the EMSS activities.
Hanna Milczarek, Forum of Polish Patients
I came to Brussels for this meeting as a Senior Patient Leader. I came with mixed feelings:
- Number one: am I not too ’senior’ to my younger colleagues, who are only between 15-25 years old?
- Number two: would they accept my leadership and what would they understand by ‘leadership'? I was afraid, that they could perceive me as an older aunt who came to control them and patronize....but I was totally wrong, they warmly welcomed me and directly broke the ice with a lot of questions!
The meeting with the MEP Rebecca Taylor from Committee on the Environment, Public Health and Food Safety was the best example that young patients are not afraid to ask very important and difficult questions.
The meeting with EMA representative was an excellent example to show that no one in the health sector should decide about patients' needs without consulting the patients themselves. The simulation of the press conference was also a much needed exercise!
The main learning outcome to me was the opening of a new opportunity window - establishing a platform of common dialogue between decision-makers and young patients being backed by patient organisations.
I would like to organise a very similar event for a group of young patients from different organisations combined with the visit to Polish Parliament and Ministry of Health. The pattern is there, the problems, issues -very similar to those discussed in Brussels. I just cannot wait to make it happen in Poland.