The 1st May 2020 marks the 5th anniversary of the creation of Sudden Cardiac Arrest UK and in episode #041 Paul takes us through the first 5 years if the group.
Paul talks about the formation and characteristics of the group and thanks some of the key players along the way.
#041 Happy Birthday SCA UK
Paul Swindell: [00:00:00] Hello and welcome to another episode of the life after cardiac arrest podcast with me, your host Paul Swindell.
If all goes well, this episode should be published on the 1st of May, 2020 which is the fifth birthday of Sudden Cardiac Arrest UK.
Although my memory can be a little dodgy at times. I can remember the creation of it quite well. I say quite well, but I actually had clear in my mind that it was a Sunday evening when I clicked the button to create the Facebook group.
But I just did a look up and it was actually a Friday!
I remember that we've had a meeting a couple of months beforehand in the pub in London, the Mulberry Bush on the South Bank, and basically it was a gathering of lost souls really, and it was such a great meeting that we continued emailing and communicating via the Inspire forum.
But personally, I found the process a little slow and, perhaps needed something more immediate.
So, although I wasn't a big Facebook user at the time, I knew of its benefits over traditional forum such that, you know, many people knew of it and used it and already had it installed and it was available on all sorts of platforms. Didn't matter if you had an iPhone or an Android or a tablet.
And it worked on it, on your PCs and Macs as well.
And it was it was importantly for me anyway; it was quick and easy to set up and manage. And also, for the people who are actually, contributing, it was quicker to get response to their posts. Because when you're on a sort of a traditional forum, it can quite often be maybe a day or two before you get any sort of response.
I'm not sure if that's just the nature of the technology or the number of users that are on Facebook, because I know it's got a colossal following. But anyway, it tended to have groups that have more of a community feel and more of a buzz.
So, you know, as I say, on that evening, I decided to click the button to create a group and at that time I didn't know what I was doing or what I was going to be creating and I, and I called it, UK, Sudden Cardiac Arrest Survivors and Friends.
And the friend�s part of the name was, was very important because we knew it wasn't just the survivors that were going through these trials and tribulations of survivorship.
The first year or so, there was a, you know, it was a fairly slow growth of the of the group. You know, most of the original group had been in that pub joined. Gareth, Sue, Joanna, Michelle, David, Richard, Dawn, Trudy, Ian and Gwyn.
But it slowly grew from that few dozen or so, and there's now well over 1500, which is pretty impressive, I think.
It's probably worth noting we have to decline probably just as many requests as we allow to join, and this is to keep the group focused to its target audience. I.E. Those in the UK and those who have had a cardiac arrest, or I've been affected directly by one.
Be that the survivor or the partner or a lay rescuer.
And it's also to keep out trolls and spammers, which are prevalent on Facebook, unfortunately.
And I think we do that quite well. As the group, has had very few, what I might call flashpoints in that time. The community is, is pretty much on message most of the time.
So, I'd just like to actually say thanks to all the moderators throughout the five years, because they've kept the group flowing and it's not always easy continually adding people and monitoring out and checking that we're getting the right people into the group.
So big thanks to you guys.
Also, just like to say a big thanks to someone who's been a, big supporter of the group as well.
And that's Dr Keeble.
And I think one of the pivotal moments in the group, sort of a life is probably just after a year or so, the group had been going, but a couple of hundred members at that time and someone posted in to the group. A video entitled life after cardiac arrest.
So, you wondered where I got the name for this podcast?
I, well, it was a trigger for me to actually get to meet Dr Keeble. And as I mentioned, it has been a great asset to the group. I mean, if you've listened to my episode at the beginning of the series, you'll know all about how I got to meet him and why I got to meet him. So, I won't go into that now.
But he, over the years, he's really given freely of his time and his expertise and help to say in so many ways he's been on the podcast. He's, he's done webinars. He's helped us organize it. Then, he�s raised funds so that we can put these events on and he's answered so many questions that people have had.
So, I'm really grateful to you, Dr Keeble, and hopefully we repaid it a little bit with helping him gain and an NHS hospital hero award so about 18 months ago, maybe a little bit longer. So, hopefully that's resting nicely on these mantal piece.
My journey has sort of been intertwined with his or him joining the group because I've been lucky enough to attend quite a few conferences with him and being able to present alongside him.
And I must admit it was quite daunting and scary at first, but the feedback that we and I received showed me that it was something that had to be done.
And so, my nerves had to be put aside.
And I would say talking about yourself especially when it's like a traumatic event, like an SCA it's not actually that easy and it can be a, I used to say it's a little bit like a word minefield in that there'll be various trigger words which make you get quite upset and emotional standing in front of many people, which can be quite uncomfortable at times.
But I would say to anyone, who, who has that opportunity to do something like this, talk to maybe a community group or some CFRs or, or anyone really on this subject and their story.
I would say, go and overcome your fears and go and do it, because you can send a very powerful message. It may feel uncomfortable at the time, but the ripple effect of your message could go on to save many other people's lives. And also, selfishly, it can help you overcome your own trauma and help you build in your own right.
So, as I mentioned at the beginning, creating this group was in some ways a little bit of a punt. I knew after that first meeting that the community or meeting other people was, was key. As you know, as I and my wife we both felt lonely and abandoned, and as our event entitled "#Not Alone" last year showed that it's a common theme for many, many survivors.
And you know, you people go looking for information because we're not that prevalent in society. You know, we all know the survival rate is very low. it's still less than 10% and so to speak to people and get people to come together helps to normalize and understand that situation.
And I think we've managed to do that both online and offline now with the, the meetings and the resources that we've got online.
And it's for the survivors and partners and lifesavers in general.
And you've got to remember that, you know, all that our group is. There's over 1500 people now. 80% of those are survivors, but we also have a proportion, which is, partners and lifesavers.
As I say, we all know that Facebook can be both good and bad and in the past few years, we've seen some of the ways that it can be used in a bad way, and lots of people are scared about it. But I think on the whole it has been very good for those who've been affected by a sudden cardiac arrest, even if you're not actually in the group. I think some of that, the ripple effects of what's come out of the group is beginning to show benefits.
And it's also probably worth mentioning that, in the last. Past year or two, we've set up a, an offshoot group called Chain of Survival UK. If you've listened to one of my previous episodes with Dr Katey Dainty, it's a group for partners and lay rescuers, those who've been involved in the chain of survival because we find that. That experience is, is very traumatic, and sometimes it's better for the those people who have gone through that to be able to talk about their experience outside of the ear shot of survivors.
I guess in an unconscious way, the Facebook group has carried on the sauce of the first meetup and that it's friendly, welcoming, and supportive, and. Not just friends and people, you know, but to essentially total strangers. And I know it's only a small thing, but the, the welcome message that everyone receives kind of sums that up.
I mean, it's like a virtual arm around someone. A welcome in. We know what you're going through, you know, get comfy and feel safe in sharing your troubles.
We get it, and I'm always impressed by the number of people who take the time to like or add a comment welcoming in these total strangers.
It's a sign of a camaraderie and the empathy you'll find with many of our members. We encourage new members to share their story in a new post, to not only get away from the, a failing of Facebook, but because it might be the first time that they've had the chance to do so, and we know that it can be beneficial to actually tell your story.
And I know it's a, I've mentioned this before in the podcast about the benefits of writing about a trauma, and there is a, an actual practice called expressive writing, which has got a page on our website about that. If you want to know more about that to help you get over a trauma.
As well as all the sort of the Facebook group with the posts and the stories and what have you, that we have through that, we obviously have the face to face meet ups, which is I guess where it all started and it can be, I think some people underestimate the power of actually getting to meet another survivor or lifesaver, someone who's given the CPR, it's a very powerful experience and it can be a real eye opener too. Yeah, just have the opportunity to talk with someone or listen to someone who, who gets it, who's been there, who's he's gone through those same emotions, perhaps a little further down the road of recovery. It's a real, it's a real shot in the arm as it were.
I mean, I know that the original meetup in 2015 was a game changer for me and my wife has, you know, as I mentioned earlier. I don't think I've met any other survivors. Oh no, I'd just met Richard, but that was prior to the actual meetup cause it was part of it. I didn't really know anyone else who had gone through this and, you know, just going and talking with other people was such a weight off the shoulders basically.
You know it, and also it doesn't have to be big events like some of the ones that we've done, like the Guinness World Record or Not Alone event, just the small cozy meetups in the in a cafe or something like that is perfectly acceptable and it's a great experience.
Talking of the Guinness world record Ben's initiative far for a jokey conversation, got the ball rolling on to something that turned out to be quite amazing. So, thanks Ben.
I think it is a bit of a shame though, that the, day wasn't featured a little bit more in the, in the media and press and, and didn't make it into the official Guinness World Record book because.
When you think about it, the survival of those 127 people is a real testament to the chain of survival and to the power of the medical world and NHS.
So, an opportunity missed there from Guinness World Records. Maybe we can do it again with more people and get them involved in a bigger way.
Although that didn't get published, one thing that did get published is our leaflet, and this was thanks to backing from SADS UK, that's Ann and John Jolly and help from one of our members Dawn, and it was a leaflet that was to be put in hospitals and other facilities where sudden cardiac arrest patients and patient families might be found and just gave a basic overview of what an SC, S C A is the impact it has and what we as a group can, can do for patients and their families.
Essentially, it was just a signpost and we've had over 10,000 of these distributed and if you want some please contact sites or go to our website page, which is SCAUK.org/leaflet and you know, we just try and get those out to the places where people will see 'em and can come and join the group and get the benefits of being, being in a group of people who know what they're going through, can answer many of their questions, can point them in direction of resources such as our website, and that's a podcast and other things.
It's also worth mentioning that SADS UK also offer free counseling with a member of the British association for counseling and psychotherapy because.
We're just a Facebook group, we can help people go through some of their recovery process, but we�re not medical people and maybe there will be times when people need professional help. Obviously, you should go through your doctor first but sometimes the waiting list to get mental health assistance can be a little bit long at times. And I suspect post cave at COVID 19, they're going to be even longer.
So, that free counseling could be invaluable.
So, thanks to SADS for the support in that, the leaflet and also other support throughout the years.
I touched on it before that we've, we've got a website, and as, as time has gone on, there have been more and more amazing stories of survival posted in the group and more and more of have gained lessons and pointed to resources.
So, and all of these things help ease the pain of what people are going through and because our Facebook group is closed and private, only those people in the group can actually see the contents of those posts.
So, I started a website basically to share out to a wider audience and to maybe let anyone interested know what sort of things that survivors and their families were going through.
So, I created this website to collate the information that was specific to us and to provide also an outlet for members to share their stories.
It's worth noting at this time that there was probably very little information for sudden cardiac arrest survivors out there and it tended to come from a very medical perspective, or maybe was sponsored by a manufacturer of medical equipment.
So, it tended to have occasionally it would have a patient story, but it would be the story about the event.
Not really anything afterwards, not showing you it would all be very rosy and not necessarily showing you the walks and the trials and tribulations that people go through and have to overcome.
So, our website aims to give it the patient perspective, and I think that. I think it does that quite well, but we do need contributions continually coming in, albeit stories for the blog or just things that can genuinely help people.
So, if you want to, contribute, absolutely. Please do. I'd love to receive your articles and anything else that's potentially helpful so you can submit that via email at info at SuddenCardiacArrestUK.org or if you go to the SuddenCardiacArrestUK.org/blog.
I mentioned that we had published, a leaflet, and after a couple of years of running of the website, I saw that we began to collate quite a good collection of stories and articles that I thought maybe they're worth publishing in their own right.
And it was something I thought about and toyed around for quite a while.
So, I'd heard that publishing a book can be quite an arduous process. But after the investigation on notice that Amazon has made it relatively straightforward, although as I found that at a little time consuming. So, if you want to give it a go. Go ahead but be prepared for the black hole that all your time disappears into.
But at the end of 2017, I'd managed to put everything together and I managed to put a whole number of our popular articles into one volume, and I got Dr Keeble to do a forward for it. And I published, any book in early 2018 and it turned out to be, quite popular. And I was in some ways quite surprised cause all those articles were already out there.
But the other thing that surprised me was the call for a paperback, so I put my skills back on my publishing and editing skills back home.
And this took a long time actually didn't realize just how long it would take, but we managed to get another version, a paperback version out later in the year.
And whilst it's not a number one bestseller, you won't see it in your Time's top list, it has sold steadily and is actually just outside the top half million sellers on Amazon. And although that doesn't sound impressive, if you consider that there are over 32 million books on Amazon, I don't think it's actually too bad.
And, and in one of the categories that it's in is actually in the top 800 and has received over twenty 5-star reviews, which is pretty decent, I think. So, if you've read the book or are on Amazon and like to help. The book and help us, please go and leave a review on there, or just give it five stars. would love that.
And it's sold far and wide in mostly English-speaking countries but maybe we need some translated versions?
Got any volunteers?
Or you can speak English and maybe another language is their first language. I would love to be able to publish it in, I dunno, Spanish, French, German, any of the European languages or even further afield, maybe a Mandarin or something like that exotic.
But certainly, I'd appreciate it if anyone wants to help out.
And it's also worth pointing out, we just released, just over a month ago, another volume, and that has, many new authors and there's been, a real buzz about that as well.
So that's great.
And it's also great for anyone who just submits an article for the website and if it's deemed popular by our audience and getting it published can be a real buzz for you in a sort of a, a nice little thing.
Because I imagine, you know, everyone says, or there's a saying that. Everyone's got a booking them, but actually getting a book out is quite a difficult thing.
Maybe this will be the first step.
Maybe it'd be the, the little bit of encouragement that you need to get that pen on paper and write your whole story.
And also, just to say thanks to a Professor, Barbara Wilson and Professor Douglas Chamberlain, who of two eminent figures that I've had on the podcast and have helped us previous enterprises we've done that. They've provided some very nice quotes for the latest version of the book.
I just also like to talk about the podcast for a moment. It was a cane. It was something that I thought about for quite a while. That fear lack of know-how and lack of confidence, I guess, stopped me doing it.
And eventually, again, I took some advice about it, how to get some help and how, how to get going with it. And I think it's surprising actually, the number of helpful people that there are on things like Facebook. There are communities and groups everywhere for every single thing that you can possibly think of.
And I put out the call for help as I said, and I received Quite a few offers of help and to help produce it and edit it. And I'd just like to say thanks to Matt Nielsen, who's edited many of these episodes, so thanks to him. I'm quite proud of what I've managed to do, from nothing.
I was quite nervous in the early days. Hopefully it sounds a little bit more professional than it did in the first couple of episodes, I quite enjoyed doing them and talking to people. And I'm quite proud of what I've done so far. So, and I've received quite a bit of positive feedback. And again, if you'd like to, to help the podcast, get out to more people and get our stories and cause a little bit well more known. Please leave some feedback on, I think it's Apple tends to be the number one spot where people can leave feedback, give it a review or just the five stars. But if you don't have an Apple, I think you can still do it on their website and, but there are some other places that you can leave podcast review, so I'll really appreciate it if you could do that.
I'd just like to also say I'm really grateful to those who give up their time to speak with me on this podcast. Both the experts and you give them. Over their time freely, answer a lot of questions and give people a little more in-depth knowledge and background as to what they're going through and how to get over it.
But also, to the people who tell a very personal and often traumatic story. I know it, it can't be easy sitting here letting other people hear all of that. But I really do appreciate your time and your honesty.
And I just also like to reiterate, my particular thanks to Dr Keeble who's been very supportive of this and appeared quite a few times.
So, thanks again, Tom.
So, I'd just like to sort of round up really with some of the things that I've learnt running a Facebook group.
Our cohort, we're quite a heterogeneous lot, I, there's not a common disease with common symptoms that links us all together.
We've all had different starting points.
Different recoveries and different outcomes.
Some people can bounce back almost immediately, but others can take many months or years, but we all generally mishmashed together quite well and that applies to partners and lay rescuers as well as the survivors.
We've all got our, our stories to tell as it were, and we can all learn from each other.
There was one thing I sort of came up with the end of last year at the Not Alone event when I was talking there, I wanted to impart a couple of the things that I've learned in, in a sort of an acronym cause they're quite often easy to remember.
My acronym was AAAH.
First A was Acknowledge the trauma that you, your body and your loved ones have gone through because it is a lot, it's a lot to take in at the time. It's a lot to deal with and you know, just be kind with yourself, just acknowledge what has happened.
You know, I do see some people who are almost in a state of denial and maybe it comes back and hit some in the face a couple of years later.
Second Ais Accept where you are and what has happened. As I say, don't deny it, understand it, learn about it.
Accept what has happened and work out a plan for moving forward.
And the third A is adapt to your new situation you know, it takes time for the body and the mind to heal, and they're two separate processes. I think some people bounce back and they're back running within a couple of weeks, or they're back at work, but the psychological aspect shouldn't be underestimated.
It can take a long time for people to take in, understand, process everything that's been gone through, and these things don't change overnight.
You know, you got to keep going and that, and as Winston Churchill once said, �If you're going through hell, keep going."
So, you know, keep that in mind.
If you, if you're a member of the group, you're, you'll see, and I've seen over the five years that there are so many people come in who aren't in a desperate situation when they start, that then go on, you know.
And make a good recovery and they're, they're happy person again, takes a while to find what that new normal, that new happy person, is going to be, quite often it's different.
And finally, the H of the AAAH is get Help.
It's hard to do this on your own.
Recover on your own.
Use the resources we provide.
Use it as a sounding board, bounce your fears and tribulations in the group, and when you're able to contribute, please do so. Whether that through a blog or just by liking or commenting on other people's posts, it's a real win-win situation.
And finally, I'd say, we, what I've learned is, you know, we've been given a second chance, so let's use it. Try and do things. Get yourself out of your comfort zone. I know I've done that many a time now but be open and let things happen.
And finally, I'd just like to talk a little bit about the future.
The group probably wouldn't have existed had I continued to receive the excellent level of care that I had gotten in hospital. Post-discharge was left a little wanting and unfortunate. I think this is quite a common theme amongst many who go through a cardiac arrest.
I think, and I hope it is improving and I think some of the things we've been doing have been started to get noticed by some of the organizations that can make a real difference to those affected by a sudden car that there.
And by that, I mean the Resus Council, the British Heart Foundation and the Public Health England part of NHS. It'd be good to see the interest and noises made by them materialize into real benefits for us and perhaps even a specific care pathway because I've really feel that is lacking at the moment.
I just also like to say thanks to those who supported my recent call for funds. It was much appreciated. We're not a charity. Maybe we should be, but at the moment, we don't have any regular income, but we do have costs associated with the resources and events we put on.
And these can run into many thousands of pounds.
So, if we are to continue, we do need to ensure the coffers are kept loaded.
And if you can help by making a donation to something that have a small or large, or even just by buying something from our shop, it will be very much appreciated.
And you can do that at
And finally, just to say thanks to everyone who's made this group what it is. I for one, would not be where I am without it.
So, thank you.
This concludes this episode of the life After Cardiac Arrest podcast, and I'd love to know what you think. And you can do that via Facebook, Twitter, Instagram, or the website, SuddenCardiacArrestUK.org and you can find this by Googling Sudden Cardiac Arrest UK or the Life after cardiac arrest podcast.
If you have found value in this or other episodes, please help spread the word by leaving a review on your podcast provider such as Apple or wherever is convenient. And don't forget, if you want to know more about life after cardiac arrest, check out our books, life after cardiac arrest on Amazon. Make sure you click subscribe.
And I'll speak to you next time.
If you enjoyed this podcast please do leave a positive review on Apple or other podcast providers as it helps us to spread the word.
Presented and edited by Paul Swindell.
Recorded May 2020.