Poll: How are recent SCA survivors doing?

One of the useful things that having Facebook provides for group is the ability to do polls.  Whilst these can only be fairly simple in nature they are a good way of gaining an understanding the needs and wants of a group of people who have been through a similar experience.  Doing these polls has a number of benefits in that they stimulate conversation, gives a overview of members, lets members see how they are faring compared to others and allows everyone to contribute in an easy way.

Over the 16 months that the group has been running I have done a number of polls and they have always given interesting results and plenty of food for thought.

Last week I did a poll for those members who had survived their SCA in the past year with the intention of finding out how they were coping.  I know the first year after my SCA was quite tough and I wanted to see how they compared.

The 30 valid responses were as follows:

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The results can be roughly split into 3:

42% are doing well – which is very encouraging and one person even went on to comment how they felt better than before…
“I think that even in one year you move through the scale you’ve described Paul I know that in the first 2 weeks I was really not in a very happy place, and even 6 months ago I would not have put down much above “Pretty good considering”. 1 year on (almost to the day) I’m getting on with it, and I’m probably better now than I was before my SCA!”

35% have ups and downs – it’s quite understandable to have widely mixed emotions and feelings after an event like an SCA.  One minute you can be amazed and grateful that you are still alive, the world can seem a wonderful place and the smallest of things can bring great pleasure.  Then on the other hand you have days when everything is not firing right and you feel drained and the legacy of the event hits home.  Time is a great healer they say and I feel this is definitely true with regards to recovery in this respect.  If I polled the same people in 3 months time I would hope the number of down days would become less frequent for these.

23% struggling – it’s unfortunate that nearly a quarter are still struggling.  I suspect that these are both from mental and physical aspects.  It’s a sad fact that there does not seem to be a clear care pathway in place for many SCA survivors and that common issues such as anxiety, PTSD are just not addressed adequately or at all.  Having a close support network around you is a massive help, but unfortunately some people do not have this and it is a real shame that they lack the support they need.

 

Dawn & Richard get married!

As we have witnessed within our group, having an SCA can bring many dark days to you and your family.

However, life can get better and great things can happen again, so it brings me great please to announce that two of our members, Dawn & Richard, got married yesterday!!

Their journey since Richards SCA 3 years ago has certainly been a bumpy one, but it goes to show that with love, care, courage and hope, things can and will get better!!

Congratulations to them both!

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Facebook time

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