The recent landmark study published in Resuscitation Plus has delivered some truly remarkable news for our community at Sudden Cardiac Arrest UK. We’re thrilled to share that our organisation has been officially recognised as one of only eight structured cardiac arrest survivor support organisations worldwide – and we’re leading the charge right here in the UK!
A Groundbreaking Study Puts SCA UK on the Map
The comprehensive research, conducted by the European Resuscitation Council and involving distinguished experts, including Professor Kirstie Haywood from the University of Warwick and ERC Chair Dr Federico Semeraro, surveyed organisations across 25 countries. What they discovered was both eye-opening and incredibly validating for our work.
Out of 56 initial responses from across Europe and beyond, only eight organisations demonstrated the structured, continuous support that cardiac arrest survivors and their families truly need. We’re proud to say that Sudden Cardiac Arrest UK not only made this exclusive list but stands out as one of the newest and most dynamic organisations in the field.
What Makes Us Special
The study highlighted several key aspects that make SCA UK exceptional:
- Comprehensive Support: We provide informational materials, peer support, research backing, and psychological guidance
- Inclusive Community: Our 3,000-plus membership includes not just survivors but their families and children too
- Collaborative Approach: Our governance involves healthcare professionals, survivors, relatives, and psychologists working together
- Innovation Focus: We’re actively involved in research support and awareness events
Celebrating Our 10 Years Together Success
The timing of this research couldn’t be more perfect, coming just as we celebrated our incredible “10 Years Together” conference. This milestone event brought together survivors, families, healthcare professionals, and researchers, demonstrating the very community spirit that the European study identifies as so crucial.
Our conference showcased exactly what the research paper calls for: strong connections between survivor organisations, healthcare systems, and medical professionals. For the first time, we introduced a dedicated Healthcare Professionals track, highlighting our commitment to engaging with the medical community. The fact that leading researchers, such as Professor Haywood from the University of Warwick, who leads the groundbreaking CARESS-f project that we’re proudly collaborating on, and Dr Semeraro, attended our event, speaks volumes about the respect and recognition SCA UK has earned within the international community.
Addressing the Gaps in Care
The study’s authors noted something we’ve always understood: cardiac arrest survivors face challenges that extend far beyond medical care. As the research explains, survivors often experience:
- Fatigue and anxiety
- Cognitive difficulties
- Social isolation
- Sleep problems
- Challenges returning to work
These are precisely the issues we address through our peer support networks, information resources, and community connections. The study validates what we’ve known all along – that community-based support is essential for recovery and long-term wellbeing.
Leading by Example
What’s particularly encouraging is that the research shows cardiac arrest survivor organisations are a relatively new concept, with most established after 2000. While we formally became a charity in 2022, our roots stretch back to May 2015 when we began as a Facebook group – hence our recent “10 Years Together” celebration. In just a decade, we’ve grown to become the largest cardiac arrest survivor organisation in the study, with over 3,000 members, demonstrating the incredible appetite for community support in the UK.
The study’s authors specifically noted that many organisations struggle with visibility and public presence. We’re bucking that trend entirely! Our active social media engagement, regular events, and growing membership demonstrate a genuine demand for the kind of support we provide.
The Road Ahead
The research paper concludes with a call for stronger connections between survivor organisations, healthcare systems, and national resuscitation councils. This is music to our ears, as it’s precisely the collaborative approach we’ve been championing.
We’re already seeing the benefits of these partnerships. The fact that many clinicians and researchers joined us for our 10 Years Together conference shows that the academic and medical communities recognise the vital role we play in the cardiac arrest survival journey.
Meeting Our Counterparts
The study revealed a fascinating picture of support for cardiac arrest survivors across Europe and beyond. Alongside SCA UK, seven other organisations were recognised for their structured, continuous support:
Europe
- Finnish Heart Association (Finland, 1955) – One of the oldest, this broad cardiovascular organisation includes cardiac arrest survivor support as part of their extensive services, focusing primarily on peer support.
- Swiss Heart Foundation (Switzerland, 1967) – Another long-established organisation with a broad cardiovascular remit, offering peer support, research backing, and both psychological and medical advice to survivors.
- Fondazione IRC (Italy, 2015) – The Italian Resuscitation Council’s foundation provides comprehensive support, including peer assistance, research, awareness events, and even material support for survivors.
- The Swedish Network for Cardiac Arrest Survivors and Relatives (Sweden, 2020) – With 520 members, this focused organisation offers peer support, information, research collaboration, and awareness events.
- The Heart Warrior Project (Belgium, 2021) – Covering both cardiac arrest and arrhythmic diseases, this newer organisation provides an impressive range of services, including medical advice, psychological support, and research involvement.
United States:
- Sudden Cardiac Arrest Foundation (US, 2005) – With over 1,600 members, this American organisation focuses on informational materials, peer support, and research, demonstrating the transatlantic nature of this growing movement.
- Heartsight (US, 2023) – The newest organisation in the study, focusing on information, research, awareness, and psychological advice, showing how the field continues to evolve.
What’s remarkable is that, despite our relatively recent formal establishment, SCA UK stands out with the largest membership base and one of the most comprehensive service offerings. Most organisations rely heavily on donations and private funding, with only two having representation on their national resuscitation councils, highlighting the pioneering nature of our healthcare professional engagement.
Why This Matters for Every Survivor
This European recognition isn’t just about accolades – it’s about validation for every single person in our community. When leading researchers across Europe acknowledge that organisations like ours are essential for addressing the “multifaceted needs of cardiac arrest survivors and their co-survivors,” it confirms what we’ve always believed: your experiences matter, your challenges are real, and support makes a genuine difference.
The study found that only 50% of similar organisations have strong connections with healthcare systems, but we’re actively working to bridge that gap. Our introduction of the Healthcare Professionals track at the 10 Years Together conference demonstrates our proactive approach to building these crucial relationships.
Our research collaborations are particularly impressive. Beyond our partnership with Professor Haywood’s CARESS-f research project at the University of Warwick, we’re also actively involved in the V-CARE study, which provides online support to survivors and co-survivors. This groundbreaking research is led by our trustee, Dr Tom Keeble, alongside a friend of SCA UK, Dr Marco Mion. Additionally, we’re collaborating on RescQ, an innovative project providing support to lay responders and others involved in cardiac arrest events, led by Dr Uzma Sajjad. These partnerships showcase our close ties with the Essex Cardiothoracic Centre and demonstrate precisely the kind of meaningful collaboration between survivor communities and medical institutions that the study’s authors advocate for.
Looking Forward with Pride
As we reflect on this momentous recognition, we’re filled with pride for how far we’ve come and excitement for what lies ahead. The European Resuscitation Council’s research indicates that support for cardiac arrest survivors is still in its infancy across most of Europe; however, in the UK, we’re leading the way.
Whether you’re a long-time member of our community or someone just discovering us, know that you’re part of something truly special. We’re not just a support group – we’re pioneers in a movement that’s transforming how cardiac arrest survivors receive care and support across Europe.
The study’s authors concluded that “strengthening collaborations with healthcare providers, NRCs, and stakeholders could enhance support networks and improve long-term post-resuscitation care.” We couldn’t agree more, and we’re committed to being at the forefront of these vital developments.
Thank you for being part of our incredible community. Together, we’re not just surviving – we’re thriving, and we’re demonstrating to the world exactly what’s possible when cardiac arrest survivors unite with purpose, passion, and hope.
Don’t go through your survivorship journey alone. Join our growing community now.
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.
Brilliant achievement! Thank you, Paul and all the admins 😀