Europe, listen to young patients!

More than 25 young patients from several EU Countries gathered on 8-11 July for the ‘EMPATHY’ seminar, 'Europe meets young patients'. The young adults, aged 15-25, spoke about their different needs as well as their expectations.

Young patients call for the recognition of ‘chronic disease’ as a ground of discrimination. Marek said: “I went to a job interview and the employer did not want to hire me as he presumed I would not be able to fulfil my tasks because of my condition. Finally he reconsidered it but I refused to take the job because I felt already rejected with his first reaction." Young patients are discriminated against on the grounds of a chronic disease but also of problems linked to their age; this must fall within the scope of an explicit regulation that protects them and promotes their equal chances.

The participants identified the lack of information as the main barrier as it leads to misperception. One of the seminar role plays illustrated this with the example of an exam session: a student with diabetes could not bring her blood sugar meter with her and another student with Crohn syndrome lacked time to finish her exam because of going back and forth to the bathroom. “This happened just because the external examiner was unaware of their condition and could have been avoided”, concluded the young attendee.

Young patients call for raising awareness about their different needs. As a solution, they suggest launching information campaigns to educate people and help them understand that their condition does not stop them from working or studying or to live normally; there is just a need for adjustment.

On the other hand patients also need to be informed about their own rights to be able to take responsibilities in their treatment. They are experts in their condition, they are able to search information and advocate for their own needs. However they need support from healthcare professionals and their parents to be empowered to do so. Particular challenges they encounter include unaccompanied transition at 18 from paediatric care to adult system, and difficulties to access healthcare when travelling or going on an Erasmus programme.

Finally young patients need a relation based on empathy with their healthcare professionals. “When the doctor talks to my parents about my condition, I feel ignored and this is rude” said Aneela. “We, as young patients, are anxious and have plenty of questions to ask. We would expect the physician to have the necessary skillset to adapt and interact with us with feeling”, she continued.

In addition to a more human approach in healthcare and adapted support, patients’ organisations also play a crucial role. They can help young patients through acting as a bridge between them, their parents and healthcare professionals and by providing peer support.

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