On 19^th and 20^th March, the EPF Youth Group gathered in Brussels for its two-day Spring Meeting to discuss key issues, such as capacity development, preparatory work for the Roundtable on Transition to Adult Care and for the Youth Group’s participation at the European Youth Event in May 2016 (#EYE2016).

First on the agenda was an assessment of the capacity development tasks implemented in 2015. The Youth Group acknowledges the advancement and how they feel stronger and self-aware but also took the opportunities to share their views on weaknesses, such as the commitment of members, plus how to be more active and engaged with the EPF in general. The Youth Group identified some concrete actions to enable a better involvement of current and new members.

The discussion moved onto the key topic for 2016: Transition to Adult Care. The lack of information and guidance from healthcare systems, young patients being undermined by healthcare professionals, the risk of discontinuity in adherence to treatments and the sense of the unknown and feeling scared by change were just some of the common themes debated in the room. The Youth Group acknowledged the consultant-patient relationship and diagnoses can differ greatly in adult care compared to children’s care. They stressed there is still lack of legal and financial framework for transition, where clear leadership and the role of a Transition Coordinator need to be defined. Local patient organisations would also be more involved in the transition process, together with the need for peer-to-peer support and specialist care for young patients.

Finally, the Youth Group considered their plans for the European Youth Event – a unique platform to exchange ideas and perspectives on youth-related issues – which will take place from 20^th-21^st May at the European Parliament in Strasbourg. They will be hosting their own workshop in cooperation with the European Multiple Sclerosis Platform titled, “Young Patients: Ready, Brilliant and Able to Work”, which will aim to challenge expectations and change attitudes of employers who view young people with chronic diseases differently.

Contact persons:

Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu

Laurence Woollard, EPF Youth Group Intern, laurence.woollard@eu-patient.eu

Laurence Woollard

Laurence Woollard is a 26-year old professional with severe Haemophilia ‘A’. He currently volunteers as a Youth Ambassador for the Haemophilia Society UK and is a patient representative for his Haematology Centre at the Royal London Hospital. Laurence is passionate about raising awareness of Haemophilia and providing peer-support to young Haemophiliacs with managing their condition.

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