Cardiac Arrest Survivorship: A New Era of Care?

As a 10-year cardiac arrest survivor and the founder of Sudden Cardiac Arrest UK (SCA UK), I’ve witnessed firsthand the challenges and triumphs that come with survivorship. Today, I’m pleased to share some important news that marks a significant milestone in the journey of cardiac arrest care in the UK—not just for survivors like myself but also for co-survivors and our invaluable key supporters who journey alongside us.

A New Chapter in Cardiac Arrest Care

After nearly 18 months of dedicated work, the new Quality Standards for Care and Rehabilitation of Cardiac Arrest Survivors and Key Supporters were released yesterday on the Resuscitation Council UK (RCUK) website. These guidelines represent a collaborative effort, bringing together a diverse team of professionals and those with lived experience, all working tirelessly to improve the care and support available to cardiac arrest survivors and their families.

Before delving into the details, I want to express my heartfelt gratitude to Michael Bradfield and the Resuscitation Council UK team for their instrumental role in bringing this group together. Their vision and commitment have been crucial in creating these guidelines.

Some of the familiar names in the team behind these standards include:

• Stuart Menzies, SCA UK trustee and a rescuer/co-survivor
• Dr Thomas Keeble, SCA UK trustee and Consultant Cardiologist at the Essex Cardiothoracic Centre
• Dr Marco Mion, Principal Clinical Psychologist at the Essex Cardiothoracic Centre
• Bernie Cleland, SCA UK member and rescuer/co-survivor
• Azad Kayani, SCA UK member and fellow survivor
• Professor Kirstie Haywood from Warwick University Clinical Trials Unit

Each member has brought unique insights, from clinical expertise to lived experience, to the table, contributing to a comprehensive approach to cardiac arrest survivorship.

A Personal Perspective on Survivorship

Ten years ago, my life changed in an instant when I experienced a sudden cardiac arrest. While I was fortunate to survive, it didn’t take long to realise that survival was just the first step of a long and often challenging journey of survivorship.

In those early days of recovery, we faced numerous uncertainties. While I grappled with significant physical challenges, both my wife and I found the emotional and psychological impact particularly difficult to navigate. The trauma of performing CPR on me had deeply affected her, leaving her with her own set of struggles as a co-survivor. This experience was the motivation to establish Sudden Cardiac Arrest UK to provide support and guidance to others going through the life-changing experience that follows a cardiac arrest.

The Status Quo: A Postcode Lottery

Over the years, as SCA UK grew and connected with more survivors and co-survivors, a troubling pattern emerged. The care and support available varied wildly depending on where you lived and which hospital you were taken to. It was, in essence, a postcode lottery.

Some survivors received comprehensive follow-up care, with access to physical rehabilitation, psychological support, and regular check-ups. Others were discharged with little more than a pat on the back and a “good luck”. This disparity wasn’t just unfair – it was potentially dangerous for both survivors and co-survivors.

We heard stories of survivors struggling with undiagnosed cognitive issues, battling depression and anxiety in silence, or pushing themselves too hard physically because they lacked proper guidance. Co-survivors often felt overlooked, struggling to support their loved ones while dealing with their trauma and uncertainty.

A Collaborative Effort

The new Quality Standards result from years of tireless work, bringing together the expertise of medical professionals, the insights of researchers, and – crucially – the lived experiences of survivors and their co-survivors.

I can’t help but feel a sense of achievement when I think of the role SCA UK has played in this process. Like Stuart and Dr Keeble, our trustees have brought their unique perspectives. Dr Mion’s psychological insights have ensured that the often-overlooked mental health aspects of survivorship are given due attention. Bernie and Azad’s firsthand experiences as rescuer/co-survivor and survivor have been invaluable in shaping a truly patient-centred approach.

The research aspect of these guidelines has been a genuine team effort. Dr Keeble and Dr Mion have significantly contributed to our understanding of cardiac arrest survivorship, alongside Professor Haywood’s and others’ valuable work in the field.

Breaking Down the Standards

So, what exactly do these new Quality Standards entail?

The standards cover the entire journey of cardiac arrest survivorship, from pre-discharge care in the hospital to long-term follow-up. They address the physical aspects of recovery and the cognitive, emotional, and social dimensions for survivors and co-survivors.

Some key points include:

1. Comprehensive Pre-Discharge Assessment: Every survivor should receive a thorough evaluation of their physical, cognitive, and emotional needs before leaving the hospital. No more being sent home without a proper understanding of what lies ahead!
2. Tailored Rehabilitation Plans: Based on this assessment, each survivor should have an individualised recovery plan. This might include referrals to cardiac rehab, occupational therapy, psychological support, or other specialised services.
3. 3-Month Follow-Up: All survivors and their co-survivors should be offered a follow-up appointment within three months of discharge. This is a crucial checkpoint to assess progress and address emerging issues in the survivorship journey.
4. Support for Co-Survivors: Recognising that cardiac arrest affects not just the survivor but also others close to them, the standards include provisions for assessing and supporting the emotional well-being of co-survivors.
5. Long-Term Access to Support: The standards acknowledge that survivorship is not a linear process. Survivors and their co-survivors should be able to re-access services if new issues arise later.

The Road Ahead: From Guidelines to Reality

While these Quality Standards represent a significant step forward, it’s crucial to understand that they are guidelines, not guarantees. Turning these standards into reality will require sustained effort, enthusiasm, and – let’s be frank – financial investment.

Implementation will vary across different healthcare trusts and regions. It will depend on local resources, existing infrastructure, and the commitment of healthcare professionals and administrators.

This is where our collective voice becomes crucial.

As survivors, co-survivors, and advocates, we must champion these standards. We need to engage with our local healthcare providers, share our experiences, and emphasise the importance of comprehensive care in the cardiac arrest survivorship journey.

A Call to Action

Now, here’s where you come in, dear reader. These standards are a fantastic step forward but are only the beginning. We must spread the word far and wide for them to truly make a difference.

If you’re a cardiac arrest survivor or a co-survivor, familiarise yourself with these standards. They’re your roadmap to recovery, your charter of rights. Don’t be afraid to advocate for yourself or your loved one using these guidelines.

If you’re a healthcare professional, we implore you to embrace and implement these standards in your practice. They represent the culmination of years of research and lived experience—a true best practice guide for supporting cardiac arrest survivors and their co-survivors.

And if you’re neither of the above?

Well, you can still play a crucial role. Share this information with your networks. You never know who might benefit from learning about these standards. Perhaps you have a colleague whose uncle recently survived a cardiac arrest or a neighbour who works as a nurse. Every share, every conversation, brings us one step closer to a world where every cardiac arrest survivor and co-survivor receives the support they need and deserve.

The Journey Continues

As I wrap up this rather lengthy post, I’m filled with cautious optimism. These Quality Standards represent a significant leap forward in cardiac arrest care and survivorship. They have the potential to transform lives and ensure that survival is just the beginning of a supported journey towards a fulfilling life for both survivors and co-survivors.

But standards on paper are just the start.

The real work begins now – advocating for these guidelines, supporting their implementation, monitoring their effectiveness, and continually refining our approach based on new research and feedback.

This brings me to my final request: we want to hear from you!

Your feedback is invaluable, whether you’re a survivor, a co-survivor, a healthcare professional, or someone interested in this field.

• What do you think of these standards?
• How do they compare to your experiences?
• What areas do you think need more attention?

Leave a comment below, contact us at SCA UK, or share your thoughts on social media using the hashtag #CardiacArrestSurvivorship. Your voice matters, and it’s only by working together that we can continue to improve care for cardiac arrest survivors and co-survivors across the UK.

While these standards are a massive achievement, they’re not the end of the road. They’re a new beginning in our collective survivorship journey. And I, for one, can’t wait to see where this journey takes us next.

So here’s to new beginnings, to better care, and to a future where every cardiac arrest survivor and co-survivor gets the support they need not just to survive but to thrive.

The Quality Standard

You can read the Quality Standard on the RC UK website or the PDF below.

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.