For the second year runnning the SADS UK annual conference was focused towards members of our group and entitled “Life After Cardiac Arrest”.
The day promised to be an interesting day of talks and an excellent chance to socialise with others who have been affected by a sudden cardiac arrest. Amongst the target contingent there were also others interested in this are in particular paramedics and others from a number of ambulance services. This is great to see as I would imagine it’s a real motivator to actually meet and chat with survivors – something they probably don’t get to do very often unless a survivor reaches out to them (If you are a survivor and want to get in contact with your saviours check out this page).
I (Paul Swindell) was first up to talk and I decided to do a presentation within a presentation. This was because at the beginning of the year I presented to the British Cardiovascular Intervention Society as part of Dr Tom Keeble’s CARE study. I’ve had the opportunity to repeat this again at a couple of more conferences and so even though I blogged about it I thought it would be good to relay it directly to other members of the group. I essentially repeated the BCIS talk and if you’re interested in what I said or would like to view the slides you can do so, here (original talk) and here (summer talk, with slides). I’m also going to be doing a condensed version of this next week at another BCIS event.
The rest of my talk centred around telling people what SCA UK was about. I complied some stats using Facebook tools and also our own polls. Hopefully the audience found them interesting as I did!
Private Facebook group has been going since May 2015 and has over 730 members, over 3000 posts have been made, with over 85% contributing is some way. We must be doing something right as we have 19 five star reviews!
Our public page started in July 2016 and has had over 490 posts and just over 1000 Likes, over 1000 people have commented or reacted to posts in some way.
Our twitter account has over 430 followers and we’ve tweeted over 700 times. The demographics of followers is different to those on Facebook so it’s a good way of interacting with a another group of people i.e. Docs, medics, sports people and even an MP!
I think the above pics generally speak for themselves, although it’s worth point out the group is more than 3/4 survivors and with 1/3 of us being idiopathic (unknown cause).
Trudy posted the US SCA Awareness Month into the group in 2016 and I reposted to our page and got an impressive reach (post appears on a persons profile feed). I had a UK specific one made for this year and thanks to the help of many in the group it went ballistic with a reach of over 209,000!
The website content is slowly coming together and important to note that it is patient focused. The first 5000 copies of our leaflet have been distributed and we’ve got 5000 more. If you want to help with distribution see this page.
We’ve had 3 meet-ups (excluding SADS events) and more in the pipeline. Thanks to SADS UK members can take advantage of up to 6 free counselling sessions, and 9 members have done so. A number of people have raised money including those who’ve bought a t-shirt from the shop, those who did an abseil and notably Lacey (the daughter of survivor Kerry Wright) who cut her hair off for charity! A number of other members have publicised their story and the SCA cause by doing talks and getting in the press. Help is always wanted for all of these items so if you have some spare resources do let us know! Find out more about donating to SCA UK on this page.
Three things I thought we as a group should be doing were, 1) try and help the professionals get a care pathway in place for future survivors, 2) improve what we do so that we can help each other better, 3) be an advocate for CPR/AED’s in our communities.
Getting a care pathway in the NHS for people like ourselves is not going to be easy or happen overnight, but there are signs that things are moving in the right direction. The Resuscitation Council produced an interesting framework document earlier in the year which mentions providing extra care such as neurological and psychological support. The Essex CTC Hospital in Basildon, where Dr Keeble carried out his study is now putting into action what works from their study and patients now get extra interventions post discharge. The Scottish OHCA strategy of 2015 is starting to bear fruit and a recent website has been created to support (Scottish) survivors although much of it’;s content applies to others in the UK. I was pleased to see that they have links to our resources! Something currently bubbling under is a proposal to do a study into Life after Sudden Cardiac Arrest as it’s been noted that there is currently little material in this area. Dr Keeble and myself and a number of other patients have been asked to be a part of the project to be based at Warwick Medical School – this could be very interesting and hopefully influential!
This slide was about getting people to join our group so that we could help more people, but also have a louder voice in the outside world. I also used a quote from Gareth which sums up things very well. (You can see more of the quote and others at our testimonials page). I also mentioned that we should contribute as much as possible in the group to keep it vibrant and active and that getting peoples stories for the blog is essential. So if you would like to write for us check out this page and if you have any special skills e.g. copywriter, graphic artist, charity, social media expert etc that could help the group in any way please get in touch!
I also asked people to talk about their experiences to the wider world and help people learn and appreciate what CPR and AED’s can do for their communities. And finally I would encourage any survivor to try and meet their saviours as it’s a win-win situation!
I think I just about got through my allocated time slot although I had time for some lovely feedback from Bob (Thanks!) and a few questions from the audience. One which I didn’t answer for Gareth, so here’s a link for him!
I was followed by the inspirational lady who is Anne Jolly MBE, founder of SADS UK. She talked about SADS UK and the fabulous work they have done over the years.
Anne was ably supported by Ben Mundigian from Physio Control who gave us a run down on the latest AED equipment from them, which includes WIFI and Geo-location features. Best laugh of the day was towards the end of Ben’s session when Gareth quipped a witty remark (see David’s feedback below)
Next up was Dr Tom Keeble, who some of you may know from the couple of webinars he’s done in the group (you can see both in the group or the last one on youtube). He talked about the state of affairs with patients and families like us and the study he had been conducting at the Essex CTC in Basildon. He had been getting good outcomes and these were now in place as standard protocol and so all cardiac arrest patients were getting extra care post discharge if they required it. This is excellent news for all those that have a cardiac arrest in Essex and hopefully one day all patients in the UK can get something similar.
You can see some of what Dr Keeble does in his video
Dr Marco Mion, a neuropsychologist and colleague of Dr Keeble’s talked next. He has recently joined Dr Keeble’s team and as a neuropsychologist he studies the structure and function of the brain as they relate to specific psychological processes and behaviours. He talked about what he will be doing in his project and gave examples of some of the tests he will use. There is a high likelihood that an SCA survivor will have a brain injury and using the tests allows a trained expert to understand how the brain has been affected.
We then had lovely life saver story told by Security Supervisor Tony Haines. It was a well told story that had some laughs, twists and turns and a valuable lesson for all employers to get an AED even if they don’t think they’ll get their monies worth!
A very nice lunch was provided and it gave a great chance for everybody to chat. Despite there being many new faces there everyone seemed to get on very well.
Chris Solomons followed lunch starting with the first few minutes of his cardiac arrest which had been caught on film for the BBCs Helicopter heroes programme. He then went on to tell us about what it had meant for him and life since.
Dr Leonie Wong, Consultant Cardiologist, from the Royal Brompton Hospital then gave an interesting and thought provoking talk about Sudden Infant Death syndrome.
Next up was Nurse Catherine Renwick, a paediatric electrophysiology clinical nurse specialist. She talked about her work with families affected by channelopathies – which are characterised by lethal arrhythmias such as LQTS, Brugada syndrome and CPVT.
Warm up for our final speaker was Life Coach and life saver David Edmonds. He did a short session on living life to the full and provided a useful technique for doing so. Kudos should go to Paul Alexander, a fairly recent member of the group who was brave enough to join David at the front as his test subject.
Finishing off the conference was a well known face from TV, Good Morning Britains Dr Hilary Jones who gave insight into a GP’s life and perspective on cardiac arrest. One interesting stat he gave our was that in a 22,000 patient clinic he’s only had one cardiac arrest survivor, which may be why the patchy response from GP’s when dealing with cases like ours.
In the evening SADS UK have a special dinner to present awards to those people who have saved others lives through the use of CPR and AED’s. Some of us from SCA UK were invited along and it was an excellent event with some very moving moments.
Overall it was an excellent day and I was really heartened by some of the feedback we received and how much some of the new faces had said they had got from the event. It really can’t be stressed enough that we are very much a rarity and that the likelihood of meeting another survivor outside of these sort of events is pretty low. Real benefit can be had from sharing experiences and when the opportunities arise I would recommend you make the most of them. Once again a massive thanks from me on behalf of SCA UK to Anne and John Jolly for hosting an event like this in such a great venue.
Feedback On the Day
“After a brill day at the SADS UK event yesterday where I met other survivors and their loved ones, I am still reeling today at what an amazing experience it was and I am still feeling a little emotional at the enormity of what happened to us all. I came away from the event feeling inspired to try and get the word out there about us all!” Ingrid
“Saturday’s conference was brilliant. Special thanks to Paul and Anne and John. Gareth needs a special mention for his comment to the defibrillator guy. For those that missed it someone asked him if he had a defib with him, he replied it was in the other room but not to worry as he felt fine. To which Gareth said ‘so did we’!!!
” David
“Some very inspirational speakers who covered a range of serious issues with a bit of light hearted banter thrown in for good measure (with a little help from Gareth who deservedly got the best laugh of the day), a video of Chris dying just to lighten the mood (fortunately he was looking quite well on the day) all washed down with a room completely full of very special people. Awesome day
“Being the twin sister of a survivor, I felt honoured to be part of the SAD conference today, what an amazing way to spend a Saturday, meeting lots of lovely, brave people. Thank you!” Jayne
“On the train home after a great day at the SADs event, listening to amazing stories about their work. Best part for me was to meet other survivors and families.” Paul
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.