Beyond Revival: Addressing the Unmet Needs of Sudden Cardiac Arrest Survivorship

After the storm of a sudden cardiac arrest comes the aftershock – the long and arduous journey towards recovery that survivors and their loved ones must navigate. What began as an extensive inquiry by the All-Party Parliamentary Group (APPG) for Defibrillators into increasing access to these life-saving devices, the story quickly evolved. As the APPG listened to the powerful testimonies of cardiac arrest survivors and medical experts, it became evident that improving survivorship care was an equally pressing priority.

The report, released today, is a sobering wake-up call, underscoring the urgent need for a standardised, holistic treatment pathway to guide survivors through the maze of physical, neurological, cognitive, and emotional hurdles that await them post-discharge.

At its core, the APPG’s findings reflect a systemic failure to prioritise the unique needs of those who have stared death in the face and lived to tell the tale. As Paul Swindell, founder of Sudden Cardiac Arrest UK, poignantly shared with the inquiry: “After my cardiac arrest, my wife and I felt utterly abandoned, left to fend for ourselves as our quality of life suffered tremendously without the right support network in place.”

The Deafening Silence

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The statistics are staggering – out of the 100,000 cases of out-of-hospital cardiac arrests (OHCA) in the UK each year, only around 34,000 receive resuscitation attempts by emergency services. And of those, less than 1 in 12 ultimately survive to be discharged from the hospital.

Yet, even for this minority of survivors, the journey is far from over. Unlike structured rehabilitation programs for stroke or heart attack victims, there is currently no nationally coordinated aftercare pathway for OHCA survivors in England.

The lack of a formal treatment plan for these individuals is a glaring oversight, and without proper neurological rehabilitation, psychological assessments, and tailored support systems, the NHS failing to address the full spectrum of challenges they face.

A Patchwork of Provision

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Geographic disparities in healthcare outcomes are well-documented across England, and OHCA survivorship is no exception. As the APPG report highlights, “people in some parts of the country are twice or three times more likely to survive than in other areas.”

This postcode lottery extends to the quality of aftercare as well. While exemplary clinics like the Essex Cardiothoracic Centre at Basildon Hospital offer comprehensive support for up to a year post-discharge, such dedicated facilities are few and far between.

Most survivors find themselves navigating a patchwork of provision, with little consistency in the follow-up care, assessments, or rehabilitation services they receive. This unsystematic approach not only impedes physical and cognitive recovery but also exacerbates the emotional toll on survivors and their families.

The Forgotten Scars

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Perhaps the most overlooked aspect of OHCA survivorship is the psychological trauma that often accompanies it. As Ryan Nelson, who experienced a 26-minute cardiac arrest, recounted to the APPG,

“The impact on my mental health and that of my family has been profound. We’ve had to grapple with this life-altering event largely on our own, without adequate support structures in place.”

Ryan, SCA Survivor

The inquiry shed light on the dearth of mental health services available to survivors and bystanders alike. With 80% of OHCAs occurring in the home, it is often a family member who must perform CPR or use a defibrillator – a harrowing experience that can leave deep emotional scars.

Imagine the trauma of having to resuscitate a loved one, only to be left adrift once the immediate crisis has passed. Without proper counselling and resources, many families suffer from post-traumatic stress, compounding the challenges of adjusting to their new reality.

A Coordinated Response

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In light of these sobering findings, the APPG has issued a clarion call for a comprehensive overhaul of the care pathways for OHCA survivors and their support networks. At the heart of their recommendations lies a singular, resounding message: a standardised, nationwide approach is imperative to ensure equitable access to holistic rehabilitation and aftercare services.

As the report states,

“Health and care systems across the United Kingdom must work in partnership to identify and reduce the gaps in accessing cardiac arrest rehabilitation services.”

The proposed solution is a formalised care programme that GPs and medical practitioners can refer survivors to following their cardiac events. This pathway would encompass not just physical rehabilitation but also specialised cardiac rehabilitation programs, mental health support, and access to a multidisciplinary team of healthcare professionals versed in the unique challenges faced by OHCA survivors and their families.

“A programme targeted to the individual’s needs can improve quality of life, be cost-effective, and reduce hospital readmissions,”

the report asserts, echoing the sentiments of many experts.

Crucially, the APPG recognises that survivorship extends beyond the patient, casting a long shadow over loved ones as well. Their recommendation calls for comprehensive mental health pathways to support not just survivors but also the bystanders and families who played a pivotal role in their resuscitation.

The Recommendation:

Review of sudden cardiac treatment pathways so that there is an established care programme for sudden cardiac arrest survivors following their cardiac arrest which GPs & other relevant medical practitioners, can refer to when advising a patient in their practice. This pathway should encompass specialised cardiac rehabilitation programs, mental health support, and access to appropriate healthcare professionals who understand the unique challenges faced by survivors and their families. A programme targeted to the individual’s needs, can improve quality of life, be cost-effective, and reduce hospital readmissions. Health and care systems across the United Kingdom must work in partnership to identify and reduce the gaps in accessing cardiac arrest rehabilitation services.

A Rallying Cry

For Sudden Cardiac Arrest UK, which has long championed the cause of OHCA survivorship, the APPG’s report serves as a powerful rallying cry. This inquiry has given a voice to the often-overlooked struggles of survivors like myself. We can no longer afford to treat cardiac arrest aftercare as an afterthought – it must become a national priority.

The road ahead is long, but the path forward is clear. By heeding the APPG’s recommendations and fostering a collaborative, coordinated approach to OHCA survivorship, the UK can set a global standard for holistic, patient-centric care that honours the resilience of those who have cheated death.

For survivors and their families, this is more than just a matter of policy – it’s a lifeline, a beacon of hope that the aftershocks of their ordeal need not be weathered alone. As the nation rallies around this cause, each step taken towards a formalised care pathway will be a testament to the indomitable spirit of those who have faced the abyss and emerged, forever changed but never forgotten.

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