Pay it forward

As a survivor of a cardiac arrest I consider myself extremely lucky to stll be here.  In the UK roughly 8% of those experiencing a cardiac arrests survive and only a paltry 3% survive similar circumstances to my own i.e. unwitnessed.

You may of heard of “Pay if forward”  (doing good deeds to others in the hope that they will do the same) and whilst I’m sure my wife wasn’t thinking of that as she hammered on my chest doing CPR, for me it was the ultimate good deed – she helped save my life.

On my journey of recovery I’ve found that I’ve been able to “Pay it forward” in my own way by doing some of the things I’ve done and relaying what survival is like.  It wasn’t something I did consciously, but over time I’ve found that talking and sharing about my experience has made things better, not only for me, but also for others.

It’s very easy to dwell on your own troubles and your thought processes can sometimes send you in a downwards spiral.  Changing the focus to others, changes the way you think. Not only are you able to put yourself in a different mindset, but you can reflect on how you dealt with your own situation and maybe improve any future response.

Giving is better than receiving, so the adage goes and since starting the SCA UK Facebook group I’ve found it to be very true.  There is a great feeling to be had when you can answer that question that has been troubling someone. Knowing that the turmoil that you went through can ease the pain for someone else is not only worthwhile, but also very rewarding.

Contributing to the group in any way can be one of the easiest ways that you can “Pay it foward”.  Sharing your experiences and giving advice can not only be mutually beneficial, but also spread hope.  And believe me, HOPE can make a whole lot of difference.

Here are some more suggestions to help you “Pay if forward”

Post your story in the Facebook group

Write an article for our blogsee here for more on this

Attend one of our meetups

Distribute our leaflet to your local cardiac unit

and finally checkout our page for other ways of giving back


Post by Ian

Well, following Richard’s post, I can not add my bit albeit with somewhat less aplomb. I have never tried to share my experiences before. As Richard said; only I really know… or at least that is what my damaged brain tells me.

I had a ‘cold’ in Dec 2015.

Being a typical man, I disregarded my loving wife and continued my 90 hour week as always in that month including the absurdity of a family trip to Sydney and a high pressure US trip for Raytheon. Points on the BA Gold card… so, I cooked Xmas dinner as always complete with trimmings etc and that cough just would not go away.

Dec 27 I agreed to be ‘hassled’ by Kim and go and see the on-call GP. This was, as was proved to be lucky, at St Mary’s in Paddington. I never saw the GP. Instead I had an SCA next to the lift. That was my last memory of 2015; “I think I need to sit down darling “…

Little did I know I had raging pneumococcal pneumonia which had gained sepsis to help it to basically kill me. At the time my lungs were 90% damaged. 6 rounds of CPR ensued after my wife screamed and got a Dr out of the ladies room. I got to visit the special room normally reserved for the Royal Family and was in an induced coma for several weeks.

That was the easy bit !

I woke up and everything was a bit different… I too had that pesky Action Myoclonus thing, otherwise known as Lance Adams Syndrome. So, I essentially went from retired RAF Fighter Pilot, decorated senior officer of 20 years and senior engineering Manager to a 2 year old baby. I hit myself in the head with my spoon when I could pick it up. Could not stand, forget walking.

So, there it was. Life over. I too dreamed about suicide innumerable times when in the Charing Cross Neural Rehabilitation Unit (CNRU). Every day was another failure to meet my own standards.

What next, I hear you ask ?

Piracetam and lots of it, dampened the shaking and jerking. 8g, 3 times a day at that time. The maximum. Lots of physio and eventually release 24/3/16. With wheelchair. Special toilet seat, handrails and swivel bather. Daytime tv as per Richard and eventually Physio/ OT outpatient care.

Quite a lot of despair and utter rejection of love ensued. Amazing who you can hurt, just because they care… I discovered that Alcohol makes everything go away… life, love, hope. No one needs them huh ?

Clearly, that’s not the end; just the start.

We now live in Sydney, I have loads of nephews and nieces to spoil. I catch every cold going because I have no immune system, Myoclonus never goes away. I get scared of crowds, transport and anything that changes my routine. I’m blessed because of what I have now. I might have changed; but that’s all. My wheelchair is in my Mum-in-laws garage.I’m a house husband who bakes a mean apple pie if he can avoid stabbing himself.. I have a 30 year RAF Reunion to go to next week in the UK and I shall.

Am I scared ?

Damn straight !

Shall I do it ?


You CAN.

That is the start of my new story.

Enjoy life

Guest post from Mick Schofield

This was originally posted into our Facebook group (October 2017) and received such a warm reception we thought it worth publishing to a wider audience.

Firstly, please don’t view into this post as me boasting and sorry about the length of it. I hope it may help others in the group.

My wife and I have just returned from a holiday, the first since my SCA 1 year 11 months ago. We booked a 3 week fly drive in North America, passing through numerous National Parks to celebrate us both reaching a ‘significant 0’ age.

Before going, I can’t deny that I had numerous concerns. Would I still be here, would I be legally allowed to drive, would I get travel insurance, would the holiday be ‘too much’ for my body, would the airport security checks be a problem, would the long flight be OK and finally would being at altitude during the time in the USA cause me problems?

A lot of my concerns were answered just before we went, the ICD technicians and my GP, both said for me to get out and enjoy it. My GP gave me extra medication because the prescription was due to run out during the holiday.

My insurance company was a bit more of a problem, two weeks before departure and after the ICD had undergone its 6 monthly check, they then sprung it on me by e mail, that they were happy to provide cover as long as the person responsible for my treatment said they were happy. (I chose to check with them that I did have cover for the USA with my declared condition because I simply do not trust insurance companies and I wanted something from them in writing in addition to their terms etc).

As I have not seen the consultant since my discharge from hospital, then who was responsible? To cover all angles I managed to get an OK from the consultant who treated me in hospital in time, (only because a friend of mine works alongside him). I told him exactly where we were going and what I wanted to do and the altitude.

The airport was no problem, the 10 hour flight was no issue at all. My experience of being at a mainly 6000′ above sea level in the USA for just short of 3 weeks turned out to be no more a problem for me than being at sea level. I actually went up as high as 10,500 feet. I checked trails and their severity before we left the UK and made a route before we left.

All of this took time and planning, but it turned out to be worth it. I accept that there were some places I did not consider trying to get to see, I knew the trail would be too severe. While going to those places I did go to, I just took my time and listened to my body whilst carrying 10kg of my camera equipment.

So what is the point of this post?

Don’t let the SCA stop you doing things, it’s a beautiful world we live in and you can still get out and see it if you choose to.

Enjoy life.

Dare to dream update

I am writing this post for all the right reasons in the hope it is well received and through it some people might sense the art of the possible. I am not writing it for any egotistic reasons or to solicit any endorsements for I have far too much humility for that.

I previously wrote a post called ‘ Dare to Dream ‘ in November 15 when the group was much smaller than it is today. Although I am not sure if it’s still available I suppose this is a follow on post from that ?

I had my SCA in June 2013 at 4am in the morning while fast asleep.
A sleep I never woke from but my then partner Dawn for some reason of fate stirred, woke up and realised I had suffered from some form of catastrophic cardiac event.

She did all the right things by calling 999 and commencing CPR and eventually my heartbeat was restored with a defibrillator operated by a skilled paramedic.  I know I am extraordinarily fortunate as indeed we all are who survive an SCA.

A week in a coma in ITU followed by a two month stint in hospital where my hypoxic brain injury affected most of my functionality for example my co-ordination was that of a toddler thus walking, holding a spoon to feed myself, washing or even wiping my arse was all beyond me.

Listening to someone speak and then understanding what they said was all but impossible and my memory was shocking.  In fact I could retain data for at least as long as a Goldfish before having to ask people to repeat information again and again and again. I thus did abysmally on the psychological testing that all brain damaged people go through in order to know how badly they have been affected. I just could not find my way through the maze or put the brown bear into the cage?

I was thus diagnosed with hypoxic brain injury resulting in poor executive skills, poor attention span and poor memory.

I was bed ridden so I peed through a catheter and did a No 2 into a bed pan after which some unfortunate had to wipe my bum.
Bet they loved that Job !

In fact I was a mess riddled with myoclonus (involuntary jerking) that was so bad one day I jerked so ferociously I landed on the floor next to the bed.
For those who do not know Myoclonus is similar to when you are on the verge of sleep and suddenly for no apparent reason you jump. Only I did that all the time while awake or sleeping, and the muscle pain is considerable, akin to severe cramp. Give me a spoon to eat with and moments later it would be a missile because I had jerked. The ice cream I was supposed to eat decorated all the walls around me because I could not control my arm movements to feed myself.

The realisation that I was seriously damaged and it wasn’t everyone else being idiots smashed my confidence to smithereens and at that point if I could……..I would have killed myself.  I looked at the ward windows with both fear and longing but I couldn’t get there because I couldn’t walk or crawl, so I planned my suicide and planned it again and again because 2 minutes after I had made a fantastic plan I promptly forgot it and had to plan it again, but of course then I would forget what it was I was supposed to be planning ?

It was indeed a very low time for me.

Two months later they sent me home with an ICD and a wheel chair and made arrangements for community physiotherapy and psychological re-evaluation.
Six months later I received an appointment with a physiotherapist and shortly afterward a letter from the psychological evaluation team telling me my appointment had been cancelled.
I immediately wrote back an angry letter cancelling any future assessment not realising that by doing so my hospital notes would forever state that I had hypoxic brain injury and needed an appropriate adult to accompany me on all future appointments 🙂

Sometimes I am such an idiot !

Six months after coming home I also received a shock from my ICD at about 4 in the morning. Subsequent investigations revealing that I suffer from mild sleep apnoea which may trigger cardiac irregularity.
Just another thing really ?

When I look back on this period in my life I realise that Dr’s are skilled and wonderful human beings but they are not gods, and they don’t know everything. Unfortunately they are expected to know everything so when they are asked a question that they do not know the answer to they guess ?

Dr how long am I going to live ?
Dr will my wife still love me when I get home ?
Dr what are next Saturdays lucky lotto numbers ?

They will try and answer by giving a calculated guess based on what they think they know and what it is you are hoping to hear.

Well I asked questions that I have since forgotten together with the answers but what I do remember is how as a result my personal confidence was shattered, spat on and ground into a pulp. I thought I am alive but yet my life was over because now I am the village idiot (ever had that feeling ? I hope not)
I left hospital brain washed with half baked opinions that I took as gospel because Doctors know everything and everything they say is true !
Reminds me of the theory of voodoo when I think about it !

By way of example I was told that you improve for two years and after that you have got what you have got. Simply not true you continue to improve forever long you live and the more you try to improve the more you will improve.

I was told that my mobility would not improve to the point of independence and I would need a person or carer to accompany me when I ventured out.
Wrong ! My mobility has improved and I do not need an adult or carer to accompany me when I venture out. When in ITU my relatives were told I would probably die and when I didn’t they were told I would probably be a cabbage ?

Not something grand like Asparagus or a Truffle but a bloody cabbage?

I now realise that if you sustained hypoxic brain injury as I did/have then with time other parts of the brain take over that missing functionality.
As in my case you may have to re-learn how to do things but you can re-learn and be as efficient as you once were.
You really can !

To be fair to the Doctors my balance was blooming awful and once I became ambulant I fell over frequently, but as time has passed my balance has improved, so although I still fall over I fall over much less than I did which is fantastic !

Then again I am 61 years old and thus four years older and of course balance degrades with age but my cunning plan is to take up yoga (more of that later) ?

So why am I writing this post ?

Well after I had gone home from hospital and sat wasting my life away watching day time television for long enough I got a little angry.
I realised that I had bought into the despair of having an SCA. That I was no longer capable, that I was forgetful and clumsy I got angry with the Doctors and nurses who implied how limited my life would be.

But most of all I got angry with myself for buying into these beliefs and for feeling permanently depressed, for wasting what years I had left watching Cash in the Attic and Bargain Hunt and for well………….frankly believing that my life was over and I was just …………waiting to die.

The truth is that this isn’t true and it’s a mistake to believe this rubbish !
Life isn’t over, indeed far from it !

After my anger had subsided I came up with a cunning plan and we sold or gave away pretty well everything we owned which was both a bitter sweet experience. It was hard parting with things we had owned for almost all of our adult life. Useless things that were mementos of some person, event or experience.

Note that all these things refer to the past !

But we did it, cried over the loss and then next day celebrated the freedom because everything you own sort of owns you back in a way doesn’t it ?

Now at this point I should say that I am writing this post on a table top in the saloon of a yacht that we bought in October 2015 and sailed with my wife, (yes my wife Dawn who last year I married on a beach in Australia ) from New Caledonia to Australia then Indonesia and now we are currently on route across the Singapore Straits to Malaysia and then Thailand

Having been told I had such a poor future I manage to undertake all the maintenance, service the engines, replace and tune electronics, plumbing, calculate routes and pretty well everything else that it helps to know when running a boat.

When I embarked on this journey I honestly didn’t know if I could do this or not because I still believed all the hype and my confidence was shattered. Indeed I didn’t know if I could fly half way around the world to even look at a boat I was interested in that was for sale. It was in a boat yard and I didn’t know if I would be able to climb the ladder to get onto it let alone sail it anywhere ?

But as doddery as I think I was I managed it and we bought it.
Since buying it we have sailed it to some wonderful places and seen some wonderful things that if I remained at home I would never have undertaken or seen.

If I had of failed it would have been sad but then I would have taken up golf, fell walking, camping, gone to college to learn something new or whatever.
I would have done something that gave me a belief that I had a value because it’s important to feel that we have a human value whether it’s in building a house, looking after the children or grand children or growing lovely tomatoes 🍅 in the garden.

As a side I take Bisoprolol to regulate my heart and my Medtronic ICD sits happily in my chest. I have a home monitoring kit which I plug in and charge up as and when I need to do a six monthly download, I can walk, run a short way with wobbling difficulty and remember my name and a few other things. I don’t dive but I do snorkel on the many reefs that we have anchored near and I have seen some wondrous things.

My stamina has improved because it had to, my balance has improved because it had to and my joie de vivre (love of life) is now as it should be.

I am writing this because I sincerely believe that far too many of us experience an SCA and believe the hype that we cannot or should not do anything which might endanger us. That life is somehow restricted and now dominated by hospital appointments, physical and most of all mental limitations that we impose on ourselves.

Utter crap !

What is the point of living if we let our SCA confine us to an ill state ?
We worry about falling over in public or having an ICD shock in the cinema or feeling unwell at a party when these are all our own fears no-one else’s ?
The truth is if you fall over most people are concerned and want to help.

When I told my Cardiologist I was buying a yacht and going off sailing he truly belly laughed. I often think of that when I go swimming off the back of the boat in amongst the Turtles and Clown fish or watch a perfect sunrise.

But when I asked him if I could do a tandem sky dive in no uncertain terms he vigorously and expressly forbade it, so I suppose there are limits ?

An SCA can ruin your life, it can destroy your confidence in yourself, it can take away your livelihood and test your relationships, it can leave you feeling depressed, suicidal, unloved, sexually inadequate, useless, helpless and hopeless.

We all know it can do lots of negative things ?

But you also can do lots of positive things because you are not dead you are still here and you………yes you……….have all the tools you need.
You are alive, you have skills unique to you, you can think and you can do, and it’s a fact that most things in life that we consider impossible is because we haven’t yet tried them?

Oh yes the yoga ?

During my travels I have met many wonderful people one of which is a middle aged woman who taught yoga. Well in all honesty I felt a bit of a plonker lying on a mat bending this or twisting that amongst a group of ladies but I watched this teacher almost balancing on one toe while standing on the end of a pencil and my jaw dropped in awe !
I was sold on the obvious benefits so I thought as we are hoping to sail to Thailand where yoga is huge, and hopefully spend a while there, I am hoping to go to yoga classes to learn how to control my balance better 🙂

At least that is my ambition ?

I hope I haven’t made this all sound very easy because it certainly has been anything but that ! I have fallen off the boat some 10ft onto concrete and got away with grazing and some bruising. Fallen off the boat during the night in heavy seas and got tangled in illegal fishing nets. Got smashed to bits at the top of the mast when I had to go up there to sort out an emergency and came down looking black and blue and I have reached levels of exhaustion that have really tested my metal. I have clearly forgotten things and had to re-learn after mistakes were made but fortunately nothing terminal.

The rewards have been immense, but at times it’s been a hard thing for me to do but I do feel that my balance has considerably improved, my stamina increased and my confidence enhanced.

If you are like I was when I watched daytime television lost in the abyss of depression thinking your life is over then please think again because it isn’t. But you have to take that first step and as a clever Chinese guy once said ‘ Every journey of a thousand miles begins with the first step ‘

Whether it’s growing potatoes or spending a dawn watching the sunrise from the gardens of the Taj Mahal it’s up to you to take the first step ?

Awareness during a sudden cardiac arrest

Last week I attended a strategy day at Essex Air Ambulance which was the first of several they were holding to ensure their service was the best it could possibly be.  The first of these focused on out of hospital cardiac arrests, of which makes up 40% of their missions.  I was honoured to be asked to tell my story as the opener of the session especially as one of the paramedics who saved my life was attending.   It was great to give him a hug again and catch up, especially as the last time I met him I was a bit of an emotional wreck!

Anyway, during the course of the afternoon a question was put to me that I didn’t really feel able to answer as I have no memory of my cardiac arrest or the time around it.  So, I put the question to the group to see what the response would be.

The question was as follows:

“As a survivor, were you aware of what was happening to you during your SCA?”

134 members responded to the poll, which had the options of Yes, No and Maybe.  The results are displayed below and as you’ll see most survivors were totally oblivious to it all, which is probably a good thing.

Fantastic donation

We’re excited to announce that today we have received a fantastic donation of £1125 thanks to one of our members Hayley Thompson, her survivor son Dan and his football team Adwick Park Rangers (Doncaster).
Hayley and Dan’s world was turned upside down last year and Chris Crowe, Chairman of the football club told us about what happened…
“Dan had a cardiac arrest on 21st August 2016 while playing football, with CPR given straight away and the quick attendance of the emergency services he has made a full recovery.  As a football club we at Adwick Park Rangers raised money from a just giving page that was set up to install a defibrillator on our local park for the whole community. A fun day was arranged on the bank holiday where we raised more than enough money to get a few defibrillators, one for the park and some portable ones. With the extra money raised we have split it between Leeds General Hospital Ward 51, Air Ambulance and Sudden Cardiac Arrest UK which provided support and was a lifeline to Dan’s Mum Hayley Thomson who is a member of the group”
You can read more about Dan’s story in the following Doncaster  Free Press article:

If you would like to know more about supporting SCA UK please check out our page on Donating to us.

From pallbearer to pail bearer

Post from Ingrid

My working life has been quite varied with no direction of a career choice (hotel trade, estate agent, prison service) until about 4 years ago when I started working in an office in a shop part time.

The premises also housed a funeral directors and part of my job as an admin assistant was to complete estimates, invoices, in memoriam donations and process payments for the funeral department.

Over time I became more involved in the funeral side of things to the point of preparing the deceased, liaising with families, clergy and printers etc and also pall bearing at funerals.

About 5 months before my SCA I had started to train to become a funeral director alongside my admin duties for the shop and funeral department. It was a job where I felt I had found my vocation in life and I really enjoyed being part of a process that means so much to people and prided myself on doing my job well.

All that changed after I suffered SCA on 6 October 2016.

I wasn’t fit enough to return to work for several weeks, but in-between Christmas and New Year I decided I was well enough to go back on a phased return. I was kept away from the funeral department and some of my funeral duties but was just about managing my other duties.

The fatigue was still pretty bad at that time and my memory wasn’t great but still I carried on. Then, one day I was in the staff room (which looks over the funeral yard) and I saw one of the operatives wheeling an empty coffin from the workshop into the chapel of rest and had a vision of myself laying in that coffin and consequently I went to pieces.

It was then that I realised that it was too soon to be back at work (I had managed almost four weeks) and I went home an emotional wreck. Over the next few months I cried a lot of tears thinking that my career was over, and I suppose I grieved for my ‘old’ life. Around this time, I had some trauma counselling which helped a little.

Jump forward six months and I had come to terms with the fact that I may not be able to return to my old job as I can’t cope with it emotionally. I was medically dismissed in April this year (2017) once my sick pay had ceased.

It was then that my experience with the benefits system took a turn. I was able to claim some additional benefits (I’m a single parent so get some on top of my wages) and I was told I could claim employment and support allowance (ESA) to cover the wages I had lost, which I did. I also had to attend health assessment 20 miles away from home (which was a problem itself due to some anxiety) where they would decide what I did or didn’t qualify for to claim from the DWP.

As a result of that assessment I sit and write this blog, a little frustrated about the situation I have been backed into.

The DWP told me I didn’t qualify for ESA and that I should claim either income support or universal credit to top up my existing benefits from HMRC. After speaking to another department at the DWP I was informed that I didn’t qualify for either of those and should make a claim for Jobseeker’s Allowance and would be expected to be actively seeking work and attend weekly or fortnightly signing-on appointments. I was told I should also attend workshops for writing CVs and perfecting interview techniques, etc. on top of the signing -on sessions. All such appointments in town 15 miles away, sometimes attending twice weekly. I was told that if I didn’t attend I wouldn’t get any money!

I was already struggling to pay my rent in full (thankfully having kept my rental agent informed they were very helpful) and put food on the table. It’s quite scary not knowing when your next money will be coming in or how much it would be and worrying that I would be evicted if I couldn’t pay my rent going forward. I could feel myself becoming anxious and stressed.

While I was dealing with all the phone calls, appointments etc. I saw an advert on social media for a job as a cleaner within a brand new local domestic cleaning business, so I decided to message the owner and was invited to go in for a chat. Living in a small town where everyone knows everyone, the lady I saw was already aware of my SCA story and as I explained what I needed she said she could accommodate my requirements! Wow, I couldn’t believe it. I had bagged myself a job with the hours I wanted without even having an interview as such and I started a couple of weeks ago (4 days before my 1st SCA anniversary).

The first few days have been tough going and I was really nervous about whether I could cope physically with the strain due to the lingering fatigue and muscle wastage of the ICD implant in such a busy and physically demanding job. I needn’t have worried as I coped reasonably well. I made sure I had early nights and kept my fluid levels up and ate when I needed to (I feel very strange when I get hungry, not like I did before the SCA).

Ultimately, I’m looking forward to getting back out into the world.

One year (almost to the day) post SCA and I feel like I’m getting my life back.

Despite thinking I wasn’t ready physically or emotionally to go back to work, I think I actually am, and I’ve surprised myself with that. I have been told repeatedly by various people in the medical professions that it can take at least a year to recover from a trauma such as an SCA and, by golly, I’ve realised they are right.

As I enter the second year of my recovery I look forward to the challenges that my new life will throw at me. I’m feeling happy and positive for the first time in what feels like forever! I know it’s not always going to be straightforward but with each little milestone I am gaining confidence and strength and will get fitter as time goes on. I am now also working with a team of similar aged people that I have things in common with. Making new friends and acquaintances adds to the positive direction my life is taking at the moment.

Go me!!

I can only encourage other survivors to step out of their comfort zone and take the plunge into new or unknown areas as it definitely boosts recovery.

SADS UK – Life After Cardiac Arrest Conference 2017

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 ”  Bob

“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

AED on the wall

Fab group post from one of our members the other day…

“Hi, I am a community first responder for the Welsh ambulance service. I have an AED in a heated cabinet on my house for the public to use if needed. My local community helped me raise the money to buy them both.”

What a great idea and an excellent way of supporting the community.



Impressive AED statistic from Holland

Doctor Hans van Schuppen who describes himself as an Anesthesiologist and Resuscitationist tweeted today an impressive statistic coming out of the Dutch resuscitation community…

“In Holland, an is placed before ambulance arrival in 65% of all out-of-hospital cardiac arrest cases. One-month survival is around 25% (total, all initial rhytms). The AED is getting so familiar in society, it even got its own traffic sign.”

He went on to say…

“It has been increasing steadily over the past years. Police and fire dept. are equipped with AEDs and send as first responders. But also: trained civilians can be activated through an app or sms by the dispatch center, 50% to get an AED and 50% to start BLS.”

With survival rates just over 8% in the UK, Nick Osborne tweeted back with a valid point…

“Whereas we have Members of Parliament that do things like this to prevent cpr being taught in schools. We should be ashamed that we have people like this ‘representing’ us. We’ve got some catching up to do.”

It goes to show you what can be achieved if the powers that be all pull together in the right direction!