2023, a review

As the year ends, I thought I’d reflect on what happened in 2023 regarding SCA UK. After seven years of running as a relatively informal group, we registered as a bona fide charity at the beginning of November 2022 (thanks to some help from the Resuscitation Council UK).

Charitable status had been on my mind for quite some time, and it was only when I took a moment to look at what we had that I realised that it was all too good to let go should I not want to continue with it. Hence gathering Gareth, Stuart, Charlotte, and Dr Thomas Keeble as fellow trustees, who have been on my SCA journey with me in varying ways and bring massive experience and understanding to our standing.

Getting through the bureaucracy took its time, and I don’t think I’ve filled in so many forms and sent so many emails, but we got there and now have what I think is called a “micro” charity in the game.

APPG

The Defibrillators All Party Parliamentary Group (APPG) started at the beginning of the year. This provides a forum for parliamentary discussion on the issues surrounding sudden cardiac arrest (SCA) and defibrillators whilst providing evidence-based solutions to improve the survival rate of SCA. We were invited along as part of a party from RCUK to give the human aspect of survivorship and myself, fellow survivor Ryan Nelson and Dr Tom Keeble all spoke at the meeting. I think we got our point home and raised their awareness levels that post-discharge care for survivors and co-survivors is just not good enough at present and that much more needs to be done.

APPG meetings have taken place throughout the year, and in July, a session at the House of Lords took place where some of the APPG members could pose questions to the government. It was good to see our cause being raised in this way, but it did underline that there is still a general misunderstanding between cardiac arrest and heart attack.

A report from the APPG is due imminently, and we look forward to hearing what it has to say!

My Right To Cardiac Arrest Recovery

Alongside the APPG work, RCUK launched the “My Right To Cardiac Arrest Recovery” petition to attract attention to our cause. Despite over 7000 people signing the petition, disappointingly, it fell short of its target to trigger a response from the government. The premise was good, but for some reason it failed to get the attention it deserved.

Research

One of the reasons why there might not be an official post-discharge care pathway yet is the paucity of evidence backing the need for it. We all know it’s needed but the policy makers need to see the evidence for it. It’s only in recent times that larger numbers have started to survive, and possibly prior to the formation of SCA UK, they didn’t have a voice, or loud one at that. I have lucky to have been involved in a number of research studies in the past few years and this has only increased in 2023, and getting the SCA UK name on official publications not only helps the researchers but also us as we gain more influence in this field. Current projects that members of the SCA UK board are involved in includes, developing a quality standard for post-discharge care, understanding the effect doing CPR has on young people, development and early testing of a new complex intervention for cardiac arrest survivors and their key supporters (family and friends) – the Cardiac Arrest Recovery Enablement and Supported Self-management feasibility study (CARESS-f), and RESCQ that looks to provide greater support for co-survivors. There are lots of exciting things happening and adding to the mounting evidence can only be a good thing for the long term improvement of post-discharge care for our cohort.

Survive and Thrive

In November, we hosted our third national conference, Survive and Thrive at Staverton Park, Daventry. Nearly 200 cardiac arrest survivors, co-survivors, medical staff, advocates and supporters attended this uplifting event. A highlight for me was accepting an international collaboration award from the American Heart Association, recognising the organisation’s meaningful global impact. The action-packed weekend featured educational seminars from medical experts, CPR training sessions, an AED showcase and auction benefiting attendees, and ample social time for candid sharing and peer support. Attendees noted how rare and valuable it was to connect face-to-face with fellow survivors. They exchanged stories, advice, and encouragement, building a community that many said they’ve lacked back home. While difficult emotions arose amidst intimate discussions, more experienced survivors emphasised that with time and support, enjoyment and purpose can be reclaimed. Laughter and inspiration from guest speakers like young survivor Benjamin Culff reinforced this message of hope. When the enriching event concluded, contact info had been traded, quick friendships formed and glimmers of light restored. As one of our biggest events so far, it highlighted the vital need for gatherings giving space to process trauma, feel understood, and envision progress ahead.

The post-event survey showed 94% of attendees were extremely or very satisfied with the inspirational gathering that facilitated profound peer support and medical guidance. Statements like “the best day since my cardiac arrest” and “I no longer feel alone” indicated the welcoming space for candid sharing, instant connections, and envisioning progress made profound impact.

Welcome Leaflet

You may be aware we have a number of publications and it was about time our very first leaflet (which was first published in 2017) was given a refresh. You can view or download it here and we have a limited number of copies for distribution. We would love to be able to get copies of it and all our other leaflets out to where they are needed, but this would require some investment and so if you would be interested in sponsoring this we’d love to hear from you!

Our leaflets are developed with our community and medical professionals and so are reliable and welcome resources to any one affected by an SCA. We’d like to expand our library of them and if you have any thoughts on them please leave a comment below.

Facebook Groups

Our primary resources for peer-support, our two Facebook groups continue to group at a steady pace and have a combined membership of well over three thousand.

Main group membership breakdown…

And for the Chain of Survival UK group…

As you will see the main group is roughly 2/3 women, but for the COSUK group it’s nearly 4/5! Men are more likely to have an SCA and with 80% taking place in a residence it’s not unsurprising that there are more women than men in the groups, but I’m very surprised by the dominance in the COSUK group. Do the male co-survivors not need help or are they unaware of us or not on Facebook?

It’s good to see that the groups continue to support it’s members and they are truly a reflection of the great benefits effective peer support can bring. Well done everyone!

And also, a big thank you to the moderators, especially Fay and Ingrid, who make sure everything runs in a smooth fashion.

We hope you enjoyed this glimpse back at Sudden Cardiac Arrest UK’s eventful and impactful 2023. As we look ahead to 2024, we wish all our community members, supporters and followers a very happy, healthy and hopeful new year. May the coming days bring progress in awareness and survivor care. And may our collective voice continue dispelling myths, transforming perspectives and proving there is abundant living left to do after cardiac arrest. If you have any ideas for how SCA UK can better serve survivors and co-survivors in the year ahead, please leave your thoughtful suggestions in the comments below. Here’s to an even more uplifting 2024!

feature Image by Gerd Altmann from Pixabay

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.