Patient Advocates Seminar 2021 - Testimonials

From February to March 2021, EPF along with The Good Lobby held its Patient Advocates Seminar. Its an online course composed of four online interactive trainings on patient advocacy aimed to give participants from EPF member organisations stronger knowledge of the European decision-making process, as well as enhanced advocacy skills and strategies and increased cooperation between different organisations. Special attention was paid to the impact of COVID-19 on the health advocacy space.

With the success of these online courses, we asked a few participants to tell their story and give their feedback on the Patient Advocates Seminar. Below are their testimonials.

Mary Vella - President, Arthritis and Rheamatism Association of Malta

"Despite the circumstances we are passing through due to Covid-19, there were also good opportunities. I had the opportunity to be accepted by the European Patients' Forum to participate in their ‘Patient Advocates Seminar 2021’.

The seminar was based on four compact modules of ninety minutes each, focusing on how to draft a good lobby plan. The first module focused on ‘Advocacy awareness through the prism of Covid-19.’ Through this module I learnt the real meaning of the word ‘lobby’, how to bring about a change of law or an issue which focused on society to be addressed to policy makers. If the law works for the benefits of health or persons with disabilities it can make a big impact. Thus a better response from society can be achieved. Transparency and accountability can also play a role in lobbying because the NGO will be more trust worthy.

Covid-19 had impacted the lobbying sphere both at an EU and national level. The world seems to focus only on Covid-19 while other issues were neglected.  This has brought about a great change in both society and economy.  Therefore, now is the best time to start reinventing the wheel how to lobby on existing issues that need to be put forward and to start to plan with a different mindset. These were tips given to us in the second module which focused on how to influence EU Policy to bring about change.  It was not easy to absorb all this and put it into practice. However, we were given a toolkit as a means of reference to help us how to create our own lobby plan. 

The third module was very interesting although challenging. All participants had to draft a lobby plan of a law that his NGO wants to change and needs to lobby about to bring it to policy makers attention. This was a hand on experience of how to draft a good lobby plan.  We learnt that there are professional people ready to help pro bono. We were allowed to work in teams. This was an advantage for us as my colleague and I were working on the same law at the national level and we came together to draft the lobby plan which we will be useful to continue to work on and present it to policy makers in the near future.  Sharing with the other participants has been a tremendous interesting experience to hear the different stories they presented.

The last and final module focused on executing the lobby plan and sharing some take away. I found this seminar really helpful and informative. I am sure it will be very useful tool for future reference. Big thanks goes to EPF and ‘the Good Lobby’ for organising these seminars for us to keep us well informed, to learn how to work professionally and be good lobbyist to achieve our goals."

Colin White - Irish Kidney Association

"22 years ago, I was getting ready to marry the woman of my dreams. It was all very hectic and very exciting as we lived in Botswana, were getting married in Zambia and my family from Ireland were travelling over for the wedding. We were two young people with so many plans and our whole lives ahead of us.

Around this time my previously healthy fiancée started developing blood pressure problems but we put it down to the stress of organising the wedding. However, after our wedding her health did not improve and actually declined. A new job opportunity opened up in Harare, Zimbabwe so we moved from the Kalahari in Botswana to a capital city and access to better healthcare.

To cut a long story short, after visiting 14 different specialists we ended up in front of a nephrologist and she was diagnosed with End Stage Kidney Disease. Whilst a diagnosis was a relief, we were also very scared by all the unfamiliar medical terms that were being used.

Being a typical Irish man I asked my mother for help. She contacted the Irish Kidney Association and they pointed us in the right direction such that within 48 hours of arriving in Ireland, my wife was in hospital and on dialysis.

This was our first experience with a patient advocacy organisation and we were blown away by the support they offered. We felt alone, knew nothing of the new sub-culture we had joined and we were so happy to have a supportive organisation in our corner.

Roll forward four years and an opportunity to join the staff of the Irish Kidney Association arose. Knowing the invaluable support they had offered my wife and I, I jumped at the chance and happily they took me on.

16 years later and I am still with the Irish Kidney Association. My role has transformed over the years but I consistently found the greatest job satisfaction in advocating on behalf of the renal population in Ireland in terms of their needs and also in the promotion of organ donation. Much to my delight, just this week the word ‘Advocacy’ was officially added to my job title and I went from National Projects Manager to National Advocacy & Projects Manager.

When I read of this year’s EPF Patient Advocates Seminar series I thought that it would be interesting, I might pick up a few things and I might even make some new contacts. It was my first time to engage with an EPF activity and I can honestly say that it was an experience that exceeded my expectations significantly.

As someone who had picked up advocacy more by raw experience than formal training, the four modules brought clear structure to the journey from identifying a cause to (hopefully) delivering on the desired change.

To me the EU had always been this behemoth that offered the potential for support but somehow seemed impenetrable. The PAS modules helped identify possible routes into the structures of the EU and broke down the steps involved in putting together a deliverable plan – using the EU to further our cause has now become a very real possibility.

I enjoyed the fact that the course convenors from the Good Lobby challenged us. They took us out of our comfort zones and allowed us to make our own way to learning points before bringing us together for review. The project we were given was very enjoyable. I was fortunate to have been able to join up with Maeve from the Global Heart Hub and we worked through it together with both of us teaching and learning from each other.

The opportunity we had to listen to each other and share our own thoughts and experiences in relation to our project work ensured that it was not just about learning from those leading the sessions. I, for one, took plenty of notes and ‘stole’ several ideas to use in my own work.

The enthusiasm of participants to share contact details after the last session is testament to the value of this aspect of the PAS. On the Facebook group we all received an invitation to register for an advocacy event being delivered by the Global Heart Hub. I know that a number of us were able to take up the invitation and consequently continue on our journey of learning in the world of advocacy.

I would like to thank the European Patients’ Forum and the Good Lobby for all their hard work and commitment in putting on the PAS 2021. It was a very positive experience. As someone who was inspired into working in the field of patient advocacy after having benefitted from it, I wish all patient advocate colleagues across Europe continued success in your work."