A Year of Progress, Partnership, and Powerful Stories: Looking Back and Moving Forward

Well, here we are again, at the close of another year. And what a year it’s been for Sudden Cardiac Arrest UK. It feels like yesterday I was writing my reflections for 2023, and now we are approaching 2025 and the tenth anniversary of Thirteen Lost Souls meeting in a London pub! It’s been a year of significant milestones in our impact on the broader landscape of cardiac arrest care and our deeply personal connections with survivors and their families. As always, I want to start with a heartfelt thanks to everyone who has been a part of our community this year. Your stories, your support, and your unwavering dedication keep us going.

A Spotlight on Survivorship

This year, we saw a significant shift in the cardiac arrest conversation. It wasn’t just about the initial resuscitation but about what happens next. For too long, the needs of survivors have been overlooked, and this year, we made sure that was not the case.

One of the most significant achievements has been getting a dedicated section on survivorship in the All-Party Parliamentary Group (APPG) for Defibrillators report. This was a pivotal moment, as it officially acknowledged the urgent need for a standardised, holistic treatment pathway for survivors after they leave the hospital. As I shared with the APPG, my wife and I felt utterly abandoned after my cardiac arrest, left to fend for ourselves without the right support network. Many people share this sentiment, and it is now being expressed in government corridors, thanks to the efforts of the APPG and the impactful testimonies from survivors and experts. However, with this year’s election, several personnel changes have occurred, including a new leader for the group. Therefore, we must ensure that we maintain the conversation with them to ensure they continue the survivorship theme.

We also saw the publication of the Resuscitation Council UK Quality Standards for Cardiac Arrest Survivorship, in which SCA UK played a key role. This is a huge step forward. These standards offer a vital framework for healthcare professionals, ensuring that survivors receive the care and support they need to navigate the complex challenges of recovery. We are proud to have been part of this process and are committed to seeing these standards implemented across the country. We will try to ensure that everyone knows about this document, which is essential to all of us.

To top it all off, we took our concerns to the international stage at the European Resuscitation Council (ERC) conference in Athens. Our presence and increased focus on survivorship in the discussions show that our voices are being heard. The conversation is changing, and we will continue to be at the forefront of it, pushing for better post-discharge care and recognition of the issues facing cardiac arrest survivors.

Contributions to Research Initiatives

A strong evidence base drives changes in health system policies. To support this, we have been actively involved in several research projects that incorporate the perspectives of both survivors and co-survivors. These contributions have been vital in shaping the research and ensuring that the needs of all those affected by a cardiac arrest event are met. The three key projects highlighted are:

Child CPR Project

This is a research study from King’s College London that explores the experiences of young people aged 11-23 who have performed CPR on someone having a cardiac arrest. The goal of this study is to understand the potential psychological effects on young people who have performed CPR. The aim is to use this information to enhance youth CPR education and mental health resource and ensure that acquiring life-saving skills does not involve a significant emotional burden for young rescuers.

CARESS-f (Cardiac Arrest Recovery Enablement and Self-management Support-feasibility)

This project, led by Professor Kirstie Haywood and researchers at the University of Warwick, aims to create a comprehensive rehabilitation programme for cardiac arrest survivors and their caregivers. Trustees and members of SCA UK have contributed significantly to the development of this programme. The CARESS-f team sought cardiac arrest survivors and their families to participate in shaping this innovative program through interviews and feedback sessions, ensuring the program meets the needs of those recovering from cardiac arrest. We actively promoted participation in the CARESSf feasibility study, highlighting how participants can play a vital role in developing a program poised to transform the aftercare experience for countless future survivors and co-survivors.

RESCQ Project

This innovative initiative, led by the Essex Cardiothoracic Centre, Essex and Hearts Air Ambulance, the East of England Ambulance Trust, and SCA UK, focuses on creating a website and resource hub for lay responders involved in a cardiac arrest resuscitation event.  SCA UK has been involved in the development of RESCQ, with a filming day dedicated to capturing stories and guidance for lay responders. The project aims to provide support, resources, and therapy services for those who experience the trauma of responding to an out of hospital cardiac arrest. Myself, fellow trustees Stuart Menzies and Dr Tom Keeble, counsellor Liz Sharpe and cardiac arrest nurse specialist Jean Davis were among those who shared their experiences and insights. The project recognises that providing CPR can be an overwhelming and sometimes traumatic experience and aims to support these individuals. The RESCQ project seeks to become a nationwide service, ensuring that anyone with the traumatic experience of responding to a cardiac emergency has the support they need.

Through these projects, SCA UK demonstrates its commitment to supporting survivors and co-survivors contributing to advancements in research and care practices for all affected by cardiac arrest. This collaborative approach, involving professional expertise and survivors’ lived experiences, is essential for shaping impactful and effective interventions.

Sharing Our Stories, Finding Strength

While policy changes are essential, we also recognize the power of human connection. Our community has come together this year to share powerful and moving stories. Our blog has been a platform for many to share their experiences, offering both insight and solace to others. Here’s a small sample of what we have covered:

• We explored the unique emotional challenges faced by women after cardiac arrest.
• We looked at the long road to recovery, particularly in terms of cognitive issues and brain injury.
• We also addressed the mental health challenges that can be caused by the event, including PTSD, anxiety and cardiophobia.
• We discussed the complex emotions that come with the anniversary of a cardiac arrest and the challenge of reconciling survival.
• We offered advice on cautiously returning to sports and navigating practical issues after a cardiac arrest, such as returning to work and dental treatment.
• We explored how mindfulness can help in recovery.
• We even looked at how music can trigger trauma and how just being in a quiet room can be difficult for some.
• We highlighted the importance of community and how connecting with others helps survivors understand that they are not alone.

These articles have provided support and given those struggling with similar issues the understanding and knowledge they need to take the next step on their road to recovery.

Our two-book series, “Life After Cardiac Arrest,” which features firsthand accounts of survivors and co-survivors, has also provided much-needed insight and hope. We see the strength in these stories and how powerful they can be for someone who needs that boost. We know sharing these lived experiences is key to creating a supportive environment. And for those of you who are thinking of sharing your story, we want to hear from you. Your voice matters and could make a world of difference to someone else.

Personal Stories of Resilience

It’s these individual stories that truly bring home the reality of surviving a cardiac arrest. They highlight both the challenges and the incredible strength of the human spirit. Here are a few that have particularly touched me:

Alan Owen, a 53-year-old from South Wales, suffered a cardiac arrest while at a Walking Football competition. His story is a powerful reminder that cardiac arrest can strike anyone at any time and is a reminder of the importance of prompt action and CPR training. Alan now volunteers for the Wales Air Ambulance and the British Heart Foundation and has even written a book, “1 in 10 Survivor”, to help others.

Claire Ford’s blog details her experience of suffering an idiopathic sudden cardiac arrest after crossing the finish line of her first half marathon, highlighting the unexpected nature of the event. Her story is described as powerful and inspiring, emphasising her determination to reclaim her life after the event and encouraging others to share and raise awareness about sudden cardiac arrest.

Rob Molloy, a scuba diving instructor, experienced a sudden cardiac arrest underwater. This is a particularly frightening scenario, highlighting the unpredictable nature of cardiac events. Rob’s determination to share his story and raise awareness about heart health is truly inspiring. He is also helping to push for more research into survival after cardiac arrest.

David Kidd’s story illustrates how cardiac arrest can impact cognitive function and emotional control. Following his cardiac arrest, he experienced memory loss and difficulty managing his temper. Although he found reading comforting, he struggled to recall the details of even familiar books. This demonstrates the very personal and diverse nature of the challenges that survivors can face.

Making a Difference: A Life Saved

One of the most profound moments of the year was when I learned that we had directly helped save someone’s life. A member of our community shared that they had been in a moment of extreme despair and were considering suicide. However, messages from the group had awakened them to the realities of what life could be. We may not be medical professionals, but we are human beings who care. Our community and its stories connected them with the support they needed. 

This experience was a stark reminder that our work goes beyond providing resources and information; it is about creating a space where people feel seen and heard, even in their darkest moments. This is why we do what we do. It is a testament to the community we’ve built and our unwavering belief that no one should face their challenges alone.

Revitalising meetups

Furthermore, SCA UK is revitalising its regional group meetups, with trustee Stuart Menzies leading the organisation of these gatherings. These meetups are designed to provide informal, relaxed environments for survivors and co-survivors to connect, share experiences and compare notes, providing support and a sense of community that is crucial to the recovery process. With a focus on member-led meetups, Stuart has created resources for its members to arrange local meetups, further emphasising their commitment to addressing their community’s multifaceted needs through face-to-face peer support.

A Fond Farewell and a Warm Welcome

This year, we had to say goodbye to a fabulous trustee of SCA UK as Charlotte Pickwick stepped down. She joined us as a bewildered survivor of our Guinness World Record attempt in 2018 and became a trustee when we formally became a charity in 2022. I want to thank Charlotte for her dedication and hard work, which has made SCA UK what it is today. We were fortunate to welcome Joanna Balgarnie, who joined the board of trustees. Joanna is a hugely welcome addition to our team. Having been one of the original attendees at our first meetup in 2015, she brings invaluable experience and a passion for supporting the cardiac arrest community, and we are already seeing the benefits she brings to the charity. We were glad to welcome her to the team.

Reaching Every Survivor

We recognise the critical importance of connecting with all sudden cardiac arrest survivors and their families as early as possible in their recovery journey. The period immediately following a cardiac arrest can be particularly isolating and confusing, and providing timely access to support and information is essential to improving outcomes for survivors and their co-survivors. To that end, we are working to ensure that people know about us and that our resources, particularly our Effective Peer Support leaflet, are readily available in hospitals and cardiac centres throughout the UK.

Looking Ahead: 10 Years Together

As we move towards 2025, I’m excited to think about our next conference: 10 Years Together. This comes on the back of the succes of our last conference Survive and Thrive. Trustee Gareth Cole and the team have been planning this special event for some time now, and it will be a fantastic occasion. The conference will celebrate the tenth anniversary of Sudden Cardiac Arrest UK, and it will be a truly special event. It will be an opportunity to reflect on our progress, connect, and look forward to the future. It will be a day of inspiration, education, and connection. After the isolation and fear so many of us have faced, this will be a space where we can laugh, cry and feel understood and safe with people who share our story. Please put it in your diaries and get your tickets to ensure you don’t miss out. I know it will bring renewed hope and significantly boost your recovery. We have all worked so hard to get this far, and I cannot wait to celebrate with all of you.

This year has been a mix of challenge and success, sorrow and triumph. But through it all, one thing remains constant: our commitment to supporting the cardiac arrest community. As we move into the new year, I want to offer hope to anyone reading this, whether you are a survivor, a co-survivor, or someone who just wants to know more. As I have often said, survival is a journey, not a destination. You are not alone, and we will continue to stand with you every step of the way. We will continue to champion the cause of improved survivorship, ensuring that those who have overcome sudden cardiac arrest can live their lives to the fullest.

Thank you again for your support, stories, and belief in the power of community. We have achieved so much but can achieve even more in 2025. The journey continues – and I look forward to sharing it with every one of you.

Best wishes,

Paul

Paul Swindell

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.