Let’s Meet!

If you’re a member of our Facebook group (Ed: If you’re not, you should be! You’re missing out on a lot of great stuff that can help in your recovery) you may have seen a lot of talk recently surrounding the topic of meetups.

Meetups of survivors, families, lifesavers have been happening for a while now, usually arranged ad hoc through the SCA UK site. I have yet to hear anything but positive feedback from those who have attended,

Indeed, meetups were becoming so common, that we decided to set up a group to assist in coordinating, sharing good practice and learning from each other. This small group work under the banner of “SCA UK Regions”.

In case you were not aware, we now have representatives for most of the regions in the UK, so if you fancy arranging a meetup, or indeed have any queries surrounding what is happening in your region, consider dropping your local representative a private message. If they don’t know the answer I’m sure they will be able to identify someone who does.

The list of regional representatives can be found here.

Anyway, that’s not my sole reason for this article, I also want to tell you about the recent meetup that took place in Dalkeith, Mid Lothian on Saturday 18th January 2020.

How did this come about? I was contacted by Fay, a member of the group who we know from a previous meetup Fay had arranged to meet with another survivor, Scott… guess what, who we knew from a previous meet up. Fay suggested to me that we could maybe open this up to any other members of the group who fancies coming along.

Fay and Scott had agreed to meet at a Wetherspoons in Dalkeith , a place they had met before . A perfect venue, Town centre and easily accessible by bus and car. So with a location agreed and a date we just needed a time. 12:30 seemed to be a practical time of day and that’s what we set it at.

I created an event in the Events section of the SCA UK Facebook group and that was that. We very quickly got some response with several people interested or marked as going.

From my previous experience, if there are a few people going, I prefer to create a private group on Messenger. This allows people to be a bit more relaxed and have the opportunity to ask any questions they may have in a more private arena rather than on Facebook. It also encourages those intent on attending to chat about it online, it’s a really good ice breaker.

We are nearly 4 years since Susans SCA and it’s important for us to remember what a huge step it can be for survivors, as well as their families, to even think about meeting others. Through meetups arranged through Facebook, Susan and I have ridden that hurdle and have had the pleasure of meeting so many survivors and their families.

Taking that first jump can be the hardest, as with anything that is foreign to us. But it is so worthwhile. I have yet to hear any negative feedback on meeting like-minded people.

So off we went on the Saturday. We were expecting around 11 survivors and also family members in addition to this. As with everything, people may not manage to make it, for whatever reason. That’s okay though, these are informal meetups, nothing fancy and no pressure. We eventually found the pub and were met by a group of familiar, and some not so familiar, happy smiling faces.

The main, initial thing I find about meetups is how easy it is to get on with everyone. Why is that? I think I know the answer, we all have one thing in common, some could call it the Elephant in the room. Something that your friends and family know about, but are not sure whether they should talk about it. It’s different when you go to meetups. We all have driven a similar path, and have one thing in common. and that is apparent anytime I speak to a survivor or partner of a survivor. No icebreaker required. I am sure the Messenger chat before the day also assists with this.

We stayed and chatted for 3 hours or so everyone having similar, but slightly different stories. There was nine of us in total, a fine number, of varying ages and all with various stories to tell. As we connected I listened around and could hear familar things being said…

  • That’s how I feel
  • That’s what happened to me
  • I’ve never met anyone else before…
  • Have you been on holiday?
  • Do you exercise?
  • I’m scared too…

I could go on.

We all have one thing in common, and sharing experiences appears so valuable in assisting with recovery.

  • Have you got an ICD?
  • Do you have a monitor?
  • Has it gone off?
  • Was it sore?

I’m sure survivors are reading this with a wry grin on their face. All this will sound familiar. But what about family members/lifesavers…

  • Are you okay?
  • I worry about
  • Leaving them alone
  • I wake up and check they are okay
  • I get nervous when I’ve not heard from them.

If you are reading this and thinking all these questions and points are familiar, that’s because when you meet up, you are with people who “Get it”, who have experienced similar to you and who are also now living the new normal.

We said our farewells and I asked those attending to drop me a few lines on how they felt the meet up went.

Here is what they had to say:

I would like to thank all you guys whom I met for the first time last week. As an SCA survivor, it’s difficult sometimes dealing with the emotions with what we have been through. It was terrific to meet fellow survivors and spouses. This was the first time I had been to a meet and also the first time I had met anyone who had also survived. Is so glad that I did, it was terrific meeting all you guys and hearing your own individual stories and how you are recovering, also terrific to meet the partners and hear things from their perspective. All in all, it was a great meet and for anyone out there who is maybe apprehensive, then please put that behind you and get to a meet, it will inspire you and give you a great insight into others in the same boat

Chris, SCA Survivor

I jumped at the chance to attend my first meet up with fellow survivors that understand my wife is also a stroke survivor and to be able to talk to others in the same boat is a very uplifting experience, we appreciate the fact that we’re all different about how we approach what has happened to us but I would urge anyone thinking about attending a meet up to please go along x

Scott, SCA Survivor

It took me 18 months post SCA to find this group. We plucked up the courage to go to the GWR event a month later. It was a revelation for both me (the survivor) and him (my hero). We have been to every meetup that we can since -­ Edinburgh; Rutland; Newcastle upon Tyne; Dalkeith. we have made life-­long friends with folk who totally get us. Put simply GO, you will never regret it!

Fay, SCA Survivor

It was my first meet up and first time meeting other survivors. I was looking forward to it beforehand, especially as it was local. Overall a great experience and safe place to share stories as everyone can relate

Ryan, SCA Survivor

Hopefully, this will give you an insight into one of the meetups arranged by Sudden Cardiac Arrest UK members.

The group is 5 years old this year and what better way to celebrate than arranging a mass meetups, all over the country.

Put Saturday 2nd May 2020 in your diary and look out for meetups being arranged in your area of the country during the afternoon on that date. You can always click on the events tab on the top of the Facebook page and it will highlight what meetups are currently arranged, where and when.

We look forward to meeting again, on 2nd May 2020 to celebrate being amazing people, survivors, lifesavers, families and friends.

You are Not Alone!

…and some pics from other recent meetups…

Stowmarket, January 2020
Bath, Feb 2020
London, January 2020

Survivor Jasmine Wylie on LQTS and being a community leader

Paul talks with cardiac arrest survivor Jasmine Wylie who is a patient advocate and online community leader.

Image result for jasmine wylie

Jasmine talks about her cardiac arrest which was at the young age of 24 and was caused by Long QT Syndrome (LQTS).

She goes over her recovery and some of the things she has learned in the 10 years since her event. She talks about her subsequent work as a patient advocate where she helps others on the road to recovery via online communities and beyond.

Available to listen on the link below or Spotify, Apple , Google and your favourite podcast player.

Presented by Paul Swindell and edited by Matt Nielson. Recorded October 2019

ICD patient education and advocacy with Doug Rachac

In episode #018 of the Life After Cardiac Arrest podcast Paul talks with Doug Rachac who is a medical device patient educator and advocate.

Prior to his own cardiac issues Doug was a Medtronic employer for many years working in a number of roles including training and education. Doug experienced a number of cardiac related blackouts and subsequently ended up with an ICD being implanted to protect him from further episodes and the possibility of a cardiac arrest.

Since then Doug has left Medtronic to focus on family life and educating patients and industry about what it is like to have an implanted device such as an ICD. He is active on various peer support groups and has his own YouTube channel. Here he covers lots of the common questions ICD owners have, explaining topics in a clear and easy to understand manner.

Available to listen on the link below or Spotify, Apple , Google and your favourite podcast player.

Presented by Paul Swindell and edited by Matt Nielson. Recorded September 2019