What does ‘EMPATHY’ mean for young patients?

The EMPATHY project or “Europe meets Young Patients” consisted of a four-day seminar that took place in Brussels on 8-11 July. The EPF Youth Group organised the event with the support of EPF. Policy discussions focused mainly on two major topics: health issues and discrimination.

A role play launched the policy discussion on health issues, highlighting the major challenges young patients face in their daily lives. The teenagers highlighted the lack of direct communication between them and health professionals. Indeed the intermediary role of parents alters the relationship and young people do not always have the chance to express their concerns directly. Moreover parents’ attitude may be overprotective or not supportive which creates another barrier for young people.

This situation is further amplified during the transition from childhood to adult care. This transitional phase can be critical if young patients cannot rely on the emotional and practical support, both of their family and of their healthcare providers.

A good relationship is however possible.  It depends on the ability of health professionals to play the role of a ’bridge’ between parents and teenagers. They need to adopt an even more human approach to address the young people’s concerns.

Young patients, when empowered, can also become self-health advocates, like adults. They can take more responsibilities in the management of their treatment and advocate for their own needs. Patient organisations can provide peer support to young patients and their parents as well. They can also act as a bridge in communicating with health professionals.
The second policy discussion looked at discrimination and stigma. Young representatives identified three sectors where they face discriminatory behaviours: education, access to employment and access to treatments.

  • To ensure equal access to education, administrative rules may need to be adapted to their specific needs. Examples are numerous: the need to miss courses because of treatments, difficulty to perform exams because of health condition, etc. Teachers and examiners may sometimes be the involuntary cause of discrimination as ‘standard’ rules do not fit all. 
  • Discrimination often appears during job seeking. Young patients soon learn that a selection process may not be based simply on meritocracy and professional skills. Employers sometimes fear that chronic conditions might undermine their employee’s performance. Employers need to be trained and learn that a chronic disease does not necessarily affect the quality of work. 
  • Finally young patients face discrimination in access to treatments. They may experience difficulties in accessing treatment while travelling abroad for studies, for instance.

Young patients had their first opportunity to express their needs towards European policy-makers and stakeholder actors. With the help of EPF, they wrote a press release to call European decision-makers to adapt their policies to their specific needs.