Learning about Young Patient Advocacy

A couple of weeks ago, Team Metabolic’s Young Person’s Project Officer, Sally, got the opportunity to go to Vienna to attend Summer Training for Young Patient Advocates led by the European Patients’ Forum, to learn more about how young people can be the best patient advocates for their condition and how we can ensure their voices are heard in the important decisions facing them – a topic very close to our hearts. Here, Sally, explains a bit more about her experience at this incredible course in Vienna and how it will shape our young people’s support programme, NextGen


Why did you go to Vienna?

Sally, our Young Person’s Project Officer (pictured in the middle) with Marco Greco, the EPF president, (pictured left) and a fellow summer school attendee and patient advocate (pictured right)

I was lucky enough to get a place on the Summer Training for Young Patient Advocates, which was created by the European Patients’ Forum (EPF), an umbrella organisation that works with patient groups in public health and health advocacy across Europe. This is the third year that they’ve run the summer school, as part of their ambition to increase the voice and influence of young people in European healthcare and decision-making, by developing the skills and knowledge of young patient advocates.


What did you do at the training and how did it help?

This year’s theme was ethics, and the training was designed to get us thinking about what it means to be an advocate and to represent others; how we can grow in our work; and the ethical questions we might face – topics that are so important to our NextGen programme. The agenda was really dynamic – there were some presentations but a lot of workshops, discussions and collaboration.
The sessions were also kick-started by talks from expert speakers, including the EPF President, Marco Greco, a Patient Engagement Specialist from the European Medicines Agency and a leading advocate for HIV positive patients. They all shared their own insights, tips and experiences, and took time to answer our questions.

Did you meet other patient advocates with Inherited Metabolic Disorders?

I didn’t! But that meant it was a great opportunity to raise the profile of these disorders with other people working with rare diseases, who hadn’t heard about Inherited Metabolic Disorders before. The attendees represented a wide range of chronic disorders and came from all over Europe. They were mainly patients, but some were non-patients working as advocates or involved in healthcare. So, it was fascinating to hear where everyone had come from and why they do the work they do.


What was the best thing about the training?

This is the best training I’ve ever experienced (and I’ve done my fair share)! But that wasn’t just because of the quality of the information but the way in which the whole time was organised, to allow us to really open up; get creative; and connect with each other. For me, and for everyone there (I think!), the highlight of the training was the relationships we were able to form in such a short space of time and how much we were able to learn from each other.
We were in a perfect setting in a small hotel surrounded by parkland and just outside the city centre near the famous Schönbrunn Palace. There was time set aside for us to just hang out over food and share our stories. On the last day, we were given some time to go away and reflect on our own and then to come back together and share what we were thinking and feeling before we left Vienna, and it turned out be a really emotional afternoon!


From everything you learnt at the training, how can young people be the best patient advocates for their condition?

That’s a big question! We were given a lot of words of wisdom during the course, which I’m not sure I could do justice to here, but I’d say to any young people affected by a rare disease that your story and voice matters. If there are things you care about and want to change, now is the time for young patients to be heard; and people are starting to listen. I’d encourage anyone to find out how they can do more, such as signing up to our NextGen programme; reaching out to a patient community on social media; or learning more about groups like the EPF.


Thank you to Sally for sharing your experience at the Summer Training for Young Patient Advocates and how each young  person can become the best advocate for their condition.

To learn more about our young people’s programme, NextGen, please see the following link: https://www.metabolicsupportuk.org/young-people/ , or contact Sally on sally@metabolicsupportuk.org or 0845 241 2173.