OK, so you’ve found this page, and one might assume you’ve been affected by a Sudden Cardiac Arrest, that you’re in the UK (or a UK expat) and you’re new to us.
Unfortunately it’s a common mis-conception that a cardiac arrest is the same as a heart attack, but it isn’t, so you may want to just check out our page to help you understand the difference, although be aware a heart attack can trigger an SCA.
If you’re still reading, congratulations!, hopefully you’ll find what we have to offer of much use to you.
Sudden Cardiac Arrest UK (SCA UK) started of as a meeting in a pub in London in 2015 with people attending from far and wide. Soon after an online presense was created so that survivors, their rescuers, friends, family and medical professionals interested in this subject could interact with each other.
The Facebook group was created in May 2015 and this is where the group really began to grow and flourish. The group is very active and is good for sharing stories, chatting, getting support and help on SCA related issues. We’ve had a couple of webinars given by a cardiologist, have surveys and polls to gauge member views and help people understand where they are in their recovery.
The group is private, which means only members of it can see any posts within it (unless they are already externally visible). We’d recommend you join us as this is where most interaction happens. We try to ensure that new members are in the right place by asking a couple of simple questions. If you request to join, please do make sure you answer them so that we know you are genuine (unfortunately we get quite a few bogus requests and from people not understanding fully what the group is about).
We try to attend to join requests within 24 hours, but please bear with us as we’re only volunteers! If you are accepted (most are!), you’ll probably get welcomed with a post. We suggest that new people introduce themselves and give a brief overview of their SCA story, this is not compulsory so don’t feel pressured to do it if you don’t feel able, but it helps other members to understand what perspective you are coming from. If you do an introductory post we’d recommend doing it as a new one rather than commenting on someone elses. Facebook is not perfect and unfortunately comments often get hidden and so it would be a shame if you told us your story and we didn’t get to see it.
It’s also worth noting that most people in our group tend to use Facebook on mobile devices or tablets and with their smaller screen sizes shorter posts are generally easier to view.
Do take time to scroll through some of the past posts to get a feel of the group and potentially answer some of your immediate questions.
The affects of an SCA can potentially be far reaching and so we are happy for questions and posts on all sorts of subjects, whether it’s to do with a survivors, partner, or anyone else affected. If you see a news story elsewhere that’s related please also consider sharing with the group.
We would encourage you to give feedback on posts by use of commenting or the Like button. It is sometimes hard to tell if anyone has seen a post and a simple Like or comment can let the person who posted it know that it was worth the effort!
We are a friendly bunch and most generally understand what others are going through, but please try to be courteous and non-inflamatory. We don’t have any group rules as such, but if you think a post or comment is amiss please feel free to contact one of the groups moderators. Also please don’t direct/private message (messenger) someone you don’t know without notifying them first in a post or comment within the group.
We also have a public Facebook page which is used to advertise our group and publish relevant information and stories to the wider world. No private posts from the group are posted here unless permission from the author is granted first.
We have a twitter account and our id is @WeAreSCAUK and generally we post similar content to the Facebook page. If you use twitter do please follow us.
We have this website which provides resources, information and a blog from our perspective. It’s a labour of love and is growing steadily, but provides lots of useful insight and practical help e.g. driving, insurance, dental treatment, brain injuries, counselling etc
We have a members map to show you where others in the group are, this could be useful if you want to arrange a meet-up with other members. If you want to be on the map join the group and check out the member profile survey under events.
Talking of meet up’s, we have an annual get together in London (South Bank) which has been in the first half of the year and later in the year (usually November) SADS UK have a conference which is targetted towards those affected by a sudden cardiac arrest.
It’s worth mentioning that SADS UK are a charity and are currently supporting us as we have a similar, but different goals and audience. They were set up to support those bereaved from a sudden arryhthmic death syndrome (SADS, a type of SCA generally occuring in people under 35), whereas we’re targetted at those that survive a sudden cardiac arrest. If you found our group because of a SADS bereavement you may find the SADS UK Facebook group a better fit.
The member profile survey (link only available to members) also allows us to give some statistics on the members of the group, helping understand the composition of the group.
It’s worth checking out (whether you’re a survivor or not) the survivor section as it has some interesting articles such as what it’s like in the early months, responses from a survivor survey and survivor stories.
The website also has a blog which gives space for longer pieces of writing or articles that may benefit the wider community. We’ve had some excellent entries including survivor stories. If you need inspiration have a look here for some ideas – we’re always looking for new authors so if you’d like to give it a go please do let us know.
If in time you find our group and website useful we’d love some feedback and would appreciate a positive review on our Facebook page, or a blog post, or just generally helping out in the group by answering other members questions.
October is Sudden Cardiac Awareness month and we’d love it if you could help spread the word by interacting (Like/Share/Comment) on any relevant posts we do (especially on our Facebook Page). We also have some special images that you can post or use on your Facebook profile and you can get them from our awareness campaign page.
Currently eventhing is run by volunteers and mostly funded privately, but we are starting to raise some fund in anticipation of becoming bigger, if you would like to help you can find out more on our donatation page.
If you have any special skills i.e. web designer, graphic artist, copy writer that would be helpful in developing the website we’d love to hear from you too!
You can find other ways of giving back here.