On a rain-spattered Tuesday morning in January, I found myself composing yet another email about the difference between a heart attack and a cardiac arrest. As we journey with our cause and SCA UK celebrates its tenth anniversary, I’ve periodically attempted to correct this fundamental misconception on the National Health Service’s website.
Type “cardiac arrest” into the NHS search bar, and you’ll get nothing but heart attack information. It’s like searching for “broken leg” and getting results for sprained ankles.
The distinction isn’t academic. A heart attack occurs when blood flow to the heart is blocked, often by a clot. A cardiac arrest is when the heart suddenly stops beating altogether—an immediate life-threatening emergency with significantly different symptoms, treatments, and outcomes. For survivors like those who make up SCA UK’s membership, the conflation can feel like an erasure of their experience.
This misinformation is particularly troubling because the NHS is the very institution that saved our lives. We need to trust the information it provides, yet from the very start of a person’s journey to understand cardiac arrest, the NHS website worryingly delivers disinformation. How can patients and families make informed decisions when the primary national health resource can’t distinguish between these critically different conditions?
Signs of Progress
Over the years, I’ve sent emails about this issue and spoken directly to project managers at the NHS. Despite these efforts, progress seemed elusive. However, there appears to be a glimmer of hope on the horizon.
Recently, Joanna Balgarnie, a fellow trustee of SCA UK, and I attended a meeting with a representative from the Resuscitation Council UK (RCUK). During this meeting, we were informed that RCUK had been in contact with the NHS since I raised the issue with them in January, and there are now plans to address the search results issue.
This potential improvement comes at a meaningful time for SCA UK, which marks a decade since its first meeting. Our organisation has built its reputation on identifying care and education gaps and working diligently to fill them.
Representing SCA UK at Westminster
Our approach was evident at Westminster on April 1st—a cool but beautiful bright day in London—when SCA UK’s trustees—myself, Joanna Balgarnie, Gareth Cole, Stuart Menzies, Dr Tom Keeble—and ambassadors Karl Perry and Alan Owen attended the All-Party Parliamentary Group (APPG) for Defibrillators.
The session focused on relaunching the group’s report outlining five aims to strengthen the chain of survival, with particular emphasis on improving survivorship care.
Steve Darling MP, who chairs the group, opened proceedings before Dr Tom Keeble delivered a compelling address. Among other notable attendees were Anne Jolly MBE and John Jolly MBE from SADS UK, who started their charity after the tragic loss of their son Ashley when he was just 16 in 1998.
One of the most moving moments came during Naomi Rees-Issitt’s presentation. Representing the OurJay Foundation, she spoke powerfully about her son, Jamie and the tragic events that unfolded on the day he died. Dr Keeble, a physician, NHS staff member, RCUK representative, and SCA UK trustee, argued that while the UK possesses all the components for an excellent cardiac arrest chain of survival, bold and brave integration is required.
Moving Forward
Dr Keeble highlighted his own Essex Cardiothoracic Centre as evidence of what’s possible. The centre has implemented new protocols that have significantly improved survival rates and established the CARE clinic, providing comprehensive post-discharge support for cardiac arrest survivors.
“It’s about connecting dots that already exist,” including getting the NHS website to acknowledge that cardiac arrest and heart attack are distinct conditions with different needs.
As SCA UK enters its second decade, this small potential victory with the NHS website reflects our ongoing mission: identifying problems, pursuing solutions, and creating resources to fill gaps in care and awareness.
We need to get the policymakers on board with this, too, and this is where you can come in by contacting your MP and letting them know of your struggles post-arrest and how improving post-discharge care is essential.
A Personal Reflection
We finished our day in London by returning to the Mulberry Bush pub, the venue of the first meeting of what was to become SCA UK. Joanna, Gareth, and I had all been on our own unique journeys, but it felt good to be back together where it all started.
As a survivor, I often reflect on how fortunate I am to be here.
For most of human history, it hasn’t been possible to “come back from death”, as I and many others have. Yet the chain of survival still has many imperfections that need to be ironed out. Until they are, needless deaths like Ashley and Jamie’s will continue to happen.
The Economics of Survival
It seems particularly poignant that the APPG event falls on April 1st. Aren’t we the fools not to improve this system? My admittedly limited research into the health economics of cardiac care has uncovered compelling evidence that structured post-discharge interventions make financial sense.
For heart attack and stroke patients, care pathways that include rehabilitation enable quicker recovery, result in fewer readmissions, and reduce the burden on both healthcare and benefit systems. Patients return to work sooner, contributing to the economy rather than drawing from it. This is proven.
With the similarities between these conditions and sudden cardiac arrest, it seems evident that there should be a mandated care pathway for SCA survivors, too. While there is some limited evidence that interventions can improve recovery for both survivors and co-survivors (family members), we desperately need more research in this area.
Policymakers move slowly and methodically—perhaps rightly so—but for many of us, it’s painfully apparent that significant improvements could be made for minimal cost. My research indicates that investment in post-discharge recovery systems would reduce the financial burden on the healthcare system.
My basic calculations suggest that investing in survivorship care pathways could yield savings equivalent to acquiring a discounted defibrillator. These savings could then be reinvested into earlier parts of the chain of survival—more publicly accessible defibrillators, better CPR and AED education—the elements vital to saving those who currently don’t survive. This would create a self-sustaining system where each improved life can save another.
It’s a win-win proposition.
What’s not to like?
And who would be the fool to ignore this?
It’s unfair and unjust that in 2025, with all our medical knowledge and technology, people are still dying from cardiac arrests that could be saved with the right interventions at the right time.
Ten years of steady progress, and still so much more to do.
Join Us at the 10 Years Together Conference!
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This conference is not just an opportunity to heal and grow but also a chance to contribute to improving the system for everyone. We can share our stories, learn from each other, and drive meaningful change.
Don’t miss out on this unique event where your voice matters. Let’s come together to support, inspire, and make a difference. Register now and be part of the change!
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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.
On October 20th 2025 Andy Barber 2.0 will turn 5! My experience, in the midst of lockdown, was earth-shatteringly desperate for my family; in hindsight, for me too but I was the lucky one, too befuddled to really comprehend the horror that my family experienced.
The journey to my cardiac arrest was years in the making, the final chapter was all too short, treated for acid reflux in 2019, put off from seeing my GP due to COVID panic in the wider NHS, and that all too familiar male trait of burying my head in the sand.
Thankfully, my wife, son and daughter are all CPR trained, spent 25 minutes pumping my chest until a paramedic took over and whisked me into hospital.
Then the real nightmare began, every day I was inched closer to the door, on day 8 I was discharged without an aftercare plan. They didn’t even check I was well enough to walk a flight of stairs, until my wife insisted!
2 months later a phone call from a cardiac nurse started a phone monitoring, we finally met on the day she discharged me from her care.
5 phone calls from a physio was all I got to help me back onto a road of exercise recovery.
So many ups and downs, no mental health support and limited access to GP support, it’s only my stubborn, dogged determination that allows me to write this today.
Please keep up the great work, some day another ANdy Barber will be very grateful to you all.