The European Resuscitation Conference (ERC) 2024 in Athens marked a pivotal moment in cardiac arrest survivorship advocacy. As a presenter in the Patient and Public Involvement and Engagement (PPIE) session, I witnessed firsthand how this global platform is reshaping the future of resuscitation care.
Embracing the Survivorship Journey
The conference’s leadership demonstrated an unprecedented commitment to cardiac arrest survivorship as a new frontier. Not only did Professor Kirstie Haywood (leading the Caress-f project that many from SCA UK have contributed to) present the opening talk on survivorship, but both current and incoming ERC chairs emphasized the importance of extending care beyond immediate survival. This stance validates years of advocacy from SCA UK and the survivor community.
PPIE and the Power of Peer Support
My primary input was a session regarding PPIE, and we had an excellent team consisting of Kirstie, Katie Dainty, Claire Hawkes, and Nathan Pearson, all representing the research perspective; Richard Stephens, a cancer survivor and longtime patient advocate of PPIE; and cardiac arrest survivors Dave Cleland and myself.
During my segment, I shared my journey as a 10-year cardiac arrest survivor and founder of Sudden Cardiac Arrest UK. I spoke about the challenges survivors face in a healthcare system that, despite improving survival rates, often struggles to keep pace with the complex needs of cardiac arrest survivorship.
Our community’s growth to over 4,000 members underscores the vital role of peer support in the recovery journey. This expansion reflects not just the need for such support but also the power of the community to address the often-overlooked aspects of recovery.
From Patient to Partner: Transforming Care Pathways
My pathway from patient to partner in research and advocacy, particularly through collaborations with Dr. Keeble and Dr. Mion at the Essex Cardiothoracic Centre and Professor Haywood and her colleagues at Warwick CTU, demonstrates how lived experience can shape and improve care pathways. Ultimately, as I emphasized in my presentation,
our goal isn’t just to add days to life but to add life to those days.
Broader Perspectives on Post-Discharge Care
During our innovative roundtable discussion, healthcare professionals and advocates across Europe shared valuable insights about post-discharge support systems. While revealing widespread gaps in care, these conversations highlighted the UK’s promising, albeit patchy, approach to survivor support.
Personal Connections That Drive Change
The power of personal connection was never more evident than in an emotional encounter toward the end of the session. Meeting Eleni and hearing about her beautiful daughter, who lost her life due to complications from sudden cardiac arrest, was a profound reminder of why our work matters so much. It brought home just how fortunate I am as a survivor and reinforced the responsibility we have to improve outcomes for all affected by sudden cardiac arrest.
Conclusion
While the conference primarily focused on advancing resuscitation science and improving survival rates, our contributions highlighted the growing recognition of survivorship care as an essential part of the resuscitation story. The connections made and experiences shared in Athens, particularly during our dedicated survivorship discussions, reinforced the importance of looking beyond survival to quality of life.
As Sudden Cardiac Arrest UK has emerged as one of the leading peer support organisations, we are eager to share our experiences and collaborate with colleagues across different territories to help establish similar support networks. Through our journey, we’ve learned that peer support is a crucial piece of the survivorship puzzle – one that can transcend geographical boundaries and healthcare system differences.
These valuable interactions will continue to fuel our efforts to improve the journey for both survivors and co-survivors of sudden cardiac arrest, even as we acknowledge there is still much work to be done in this space. Our mission is clear: to extend the reach of peer support globally, ensuring that no survivor faces their recovery journey alone.
This coming together of passionate minds and diverse perspectives can be a compelling and rewarding experience. We invite you to join us at our “10 Years Together” conference on Saturday, May 17th, 2025, where we will continue to build upon the connections forged in Athens and explore new frontiers in cardiac arrest survivorship. Visit the 10 Years Together page for more information and to secure your spot at this not-to-be-missed event.
After our first meet-up in February 2015, I realised I was not alone. It was the first time since my cardiac arrest the previous year that I had spoken face-to-face with someone who had experienced what I had. This was also true for my wife, who also happened to be my lifesaver. From that meet-up, the idea of SCA UK was born. Since then, we have achieved a considerable amount, primarily providing information, resources and support to others in a similar situation but also raising the profile of survivorship and the need for better post-discharge care. We are starting to get traction in this, and with the formation of the charity, I genuinely believe we have a bright future ahead and will make a significant difference in the lives of many who join our ranks.
Excellent!
Paul, you’re a wonderful man (and the team are wonderful too!)