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EMPATHY from a young patient’s perspective

The EMPATHY Seminar gathered young patients aged between 16 and 25, representing several disease areas and nationalities. The seminar was an exciting learning and networking opportunity.

Razvan Barbuta, 20, Romania, Romanian Haemophilic Association

Thanks to the EMPATHY seminar I understood how EU institutions can help people with chronic diseases. The seminar had a major impact on me, it gave me the possibility to learn more about myself and how I can have a more positive attitude towards problems. 

I also learnt more about discrimination and how we can face it. We can help people understand what are our needs and how discriminatory practices can affect us   I now know better how I should express my concerns to my healthcare professionals. I should constantly keep in touch with them because they play an important role, not only helping me to manage my health issues, but also to forge my personality. I was happy to see that we can also be involved in decisions, such as when we met and discussed with the European Medicines Agency representative. I felt my opinion really counts.

As a member of Romanian Haemophilia Association, I will try to use what I learnt to explain to other patients that there is no mountain too high when you have dedicated people around you, and I will try to improve their perspective on the future. They will realise that they are not alone in life and that the health obstacles are easier to overcome with the help of the right people. Last but not least, I felt something special during the meeting and I will use this for myself to move ahead.

Urška Perc, 21, Slovenia, Slovenian Diabetes Association

The EMPATHY seminar was for me a really inspiring experience. I was surrounded by motivated young patients, who want to make a difference for all of us in Europe as well as in their country. I will use the ideas we discussed for our association in Slovenia. I realised that we should never take ‘no’ for an answer and be persistent to always try to find solutions to move forward.
 
So far I have attended a few such international meetings, but this was the first one where several diseases were represented. We discovered that after all our problems are similar. Together we are stronger and if we can build empathy with our healthcare professionals and other stakeholders, I think we are on a good way to overcome many of our problems.

Andrew Zammitt McKeon, 23, Malta, Maltese Diabetes Association

The EMPATHY seminar was the opportunity to discuss and identify issues that young patients face regardless of their nationality or their condition. It also showed to older patient leaders and stakeholders what issues are truly affecting us as young patients.

The seminar was interesting and allowed us to express our views among us but also with decision-makers such as MEP Rebecca Taylor. The main benefits that I personally gained from this seminar were to really talk with other participants, both the younger and the older ones, and share our views.

I was surprised to see how similar the issues we face are regardless of our age, condition, situation or nationality. Issues such as discrimination, lack of understanding and the general lack of young patient’s voice on a national, international and European level were highlighted repeatedly. I believe that these issues were also noted by the stakeholders attending the seminar and that they will start to consider young patients as real partners in health related discussions.

With this experience I wish to help other young patients to deal with their issues and to make our voices heard.

Page Nyame-Satterthwaite, 17, United Kingdom, National Children’s Bureau

The EMPATHY seminar was a fantastic experience. Over the four days I learnt a lot about communication, healthcare across Europe and the similar challenges young people with chronic conditions face across the EU.
 
The seminar was an interesting, informative and insightful experience. From the activities I have learnt how to become a better young patient advocate and how to convey my message clearly.  Information about rights for patients with chronic conditions at European level is especially useful as I am interested in travelling and studying abroad.

My favourite activity was the visit to the European Parliament. This included a tour of the European Parliament buildings in Brussels and the chance to speak with MEP Rebecca Taylor. It was an excellent opportunity to be able to voice the concerns of young patients at EU level and we gained a unique insight into the work of the European Parliament.

The range of activities from role plays to the press conferences made the seminar engaging throughout. I hope to use what I have learnt from this seminar in the UK in several ways, for example as a member of my region’s hospital youth council I aim to highlight the more comprehensive approaches to transition in other countries, which should be used as inspiration to improve the current  UK system. It has also encouraged me to become more involved with patient associations in my own country and at European level in order to be a more active patient advocate like many of the other participants.

In short I learnt so much, laughed so much and look forward to using knowledge gained from this experience to help other young patients.