Young patient advocacy

Written by: Matthew Hilferty, Policy and Information Assistant, the ALLIANCE

Published: 13/07/2018

Matthew speaks about the EPF’s Summer Training and the need to put young people with long term conditions at the heart of decision-making.

Last week I met some incredibly inspirational people and learned a lot from the European Patients’ Forum (EPF) Summer Training Course for Young Patient Advocates.

The course was very interactive, focusing on group tasks and discussions, which really made you think about how your learning could translate into practical activities back home. As a result, I can already see how it will have an impact upon the way I work within the ALLIANCE, as well as my local Crohn’s and Colitis UK Clyde Network.

Day one focused on the question of what good advocacy actually looks like in practice. This featured a panel discussion including Marco Greco (EPF President), Andreas Christodoulou (EPF Youth Group Chair) and Nathalie Bere (Patient Engagement Specialist at the European Medicines Agency).

Day two encouraged us to consider how we could develop our own advocacy campaigns, including examples of what people living with long term conditions had achieved in previous years.

And day three asked us to reflect on what we had learned so far and how we can support each other to succeed over the next year. We have already scheduled monthly catch-ups to see how we are all getting on!

However, beyond the content of the course itself, the people I met and the connections I made were the most valuable takeaway for me.

Almost everyone on the course had a long term condition. However, they seemed determined not to let that stand in the way of them enjoying their lives. And, more so, they seemed more concerned with helping to support other people with their condition before thinking of themselves.

The course sought to ensure younger people are given a voice. In the Year of Young People, this is particularly relevant. Too often, young people are left out of the decisions that affect them. Thankfully, there is a movement in Scotland to address this imbalance and in Europe the EPF are making similar efforts to make sure young people are put at the forefront of decision-making, as well as policymaking.

The voice of lived experience is absolutely invaluable. This can make a huge difference not only to individuals, but also to the wider groups they represent. After all, who can say what someone living with Crohn’s Disease needs to live well, for example, better than someone who actually lives with Crohn’s Disease?

We may have been through a lot ourselves, but we are determined to use our own bad experiences to improve the experiences of others – turning negatives into positives.

I’d like to thank the EPF (this link will take you away from our website) for inviting me to attend the three-day programme in Vienna. It was an amazing experience and I won’t forget all of the inspirational people I spent the week with.

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