After the inaugural meetup, we continued our chats on Inspire, and much positivity came from them. However, I felt the primarily US-focused forum was not really the place to be discussing what came to be UK based issues.
So, at the beginning of May 2015, I decided to set up a facebook group and then invite all those that had been to the meetup. Facebook has many other cardiac-related groups including an SCA group (again is primarily US-focused) and I used these to promote the new group.
Posting in these groups and other relevant places has seen the membership of the group grow steadily to over 230 as I write. As we are a unique bunch this isn’t too bad, but considering there are potentially 20 new members a day we could be doing better, hence this website has been created.
However, the main focal point is the facebook group and I would encourage you to join if it is applicable to you. This is a closed i.e. private group where only members of the group can see what has been posted.
We are UK focused and so you should be based here or an ex-pat living abroad, have had a sudden cardiac arrest or be connected in some way to an SCA survivor i.e. partner, parent, close family, rescuer
We share all sorts of stuff and many people who are members have said how beneficial it has been for them – not just from medical issues, but from practical, finance and possibly the most important – psychological.
We do hope you can join us in our group
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.
I wish I’d heard of you before now, had my SCA Dec 27th 2012, defibrillator fitted and sent home, told how lucky I am, within 3 months was diagnosed with a cancer and after large op plus treatment sent home to get on with it! Family are great, it was my adult children who performed CPR on me but I feel isolated even after all this time, I have had one shock since then, march 2015, no longer allowed to drive no longer working!
Hi Sandra, sounds like you’ve have a torrid time, but at least you are still with us. There are others with a similar story to you in our group, do come and join us https://www.facebook.com/groups/SuddenCardiacArrestUK/