The document discusses life after surviving a cardiac arrest from the perspective of cardiac arrest survivors and caregivers. It covers both the physical and psychological issues faced during recovery such as fatigue, memory problems, anxiety, and depression. Peer support is highlighted as an important resource for helping survivors adjust and feel less alone through the emotional rollercoaster of recovery. While hospital care immediately after arrest may meet survivors' needs, many require more long-term psychological support and cardiac rehabilitation to fully adjust to their new normal lives post-arrest.
14. RESOURCES
WEBSITE
>200 Pages
>150 Blog posts
>25 Authors
LEAFLETS
5000 distributed
+5000 printed
FREE COUNSELLING
GUIDES
LIFE WITH AN ICD
PRACTICAL HELP
SEQUELAE
SPORT+ACTIVITIES
IDIOPATHIC
2 BOOKS
24 articles
16 authors
Foreword by
Dr Keeble
PODCAST
Conversations with
those affected by a
cardiac arrest
15. ADJUSTMENT TO CHANGE
ADJUSTMENT DISORDER
FIND “NORMAL”
BRAIN INJURY
“GOOD” OUTCOME
NEUROLOGICAL, PHYSICAL, PSYCHOLOGICAL AND PSYCHO-SOCIAL ISSUES
18. LESSONS LEARNED
PEER SUPPORT
COMMUNITY
1 PHYSICAL +
PSYCHOLOGICAL
2
“GET IT”
3 CRACKS
& DOTS
4
CARE PATHWAY
INC. COUNSELLING
5 PROACTIVE>
REACTIVE
6
IMPROVED
SURVIVAL RATE
7 LIFE/LIVE
8
“Dying as it turns out is easy, survival is a whole lot harder”
week B4 my world was turned upside down
the day after my 48th birthday
Life was good and I was seemingly fit and healthy
in my home office & @ 12:04 I sent an email.
in the next 25 mins I had an unwitnessed CA
A series of fortunate events meant that luckily my wife found me in time The chain of survival then kicked in
Thanks to some wonderful work, 20 minutes later & I was back
An induced coma and 2 weeks in hospital then ensued
Despite numerous tests I was diagnosed as idiopathic
I had an ICD implanted, but no meds or rehab It was Good Friday when I was discharged, but I felt anything but good
I was told to live my life as best I could
And if I had any issues go and see my GP
Post discharge I felt dazed, confused and quite alone
And that could also be said for my wife
I had a number of issues, some physical, some not, but mainly non cardiac
I went to my GP & was possibly the first survivor he’d seen
As such he didn’t really seem to understand, or “GET” what I was going through
And he even said “What do you expect you were dead”
So I sought help elsewhere, & found other survivors online
This helped a lot
Tended to be US focused, but some British people
<CLICK>
So I created a group for others in this country
Sudden Cardiac Arrest UK
Connections between survivors and partners
Didn’t feel quite alone
Things started to feel more positive
In 3 1/2 years it has grown to over 1100 members
Of which roughly ¾ are survivors and a 1/5 partners
Members of all ages are catered for & we have >150 <35’s
And it is fulfilling a real support need
Just about a year after it was started
Video called “Life After Cardiac Arrest” posted
Featured post discharge care and having good results
<CLICK>
Hospital -> Essex CTC – where I had been
Received excellent in hospital care,
But not post discharge care
Recognised faces in video
I wondered why I had not got the same care
<CLICK>
Contacted them and spoke to Dr Tom
Agreed to work together
Nominated 4 award + present @ BCIS conferences
Asked to help to give patient perspective
I thought I was fairly typical of what I heard in the group
So good opportunity to tell how it is for many
Next section is my presentation to the BCIS
So I created a gathering
<CLICK>
Meetup in pub with 13 attending
Connections between survivors and partners
Didn’t feel quite alone and life was a little more positive
<CLICK>
So I created a group for us in the UK
and then things started to get interesting
Snapshot of the group demographics
Predominantly female
Majority are 35-54
Over ¾ are survivors
Partners being the next biggest group
Over half were down for more than 15 mins
<CLICK>
DIAGNOSIS
1/3 idiopathic
1/5 electrical i.e. LQTS, brugada
15% heart attack –unusually small?
From this group I learnt that what I was experiencing was not unique
In fact, my situation was quite typical
For example physical problems likez
Headaches, concentration issues, fatigue and a patchy memory
And psychological issues like
Feeling alone, emotional swings, anxiety, depression and panic attacks
All cropped up frequently
In fact it was evident the fall out of the event can be far reaching
Shortly before my talk
Tracy showed me this
It resonated strongly with me
And to a degree I also saw others going through it too
It’s important to note that it’s not just the survivor affected
Partners & bystanders often have issues including PTSD
Many aspects of life can be affected
Including personal, family, social & business
It is truly life changing & not just in a cardiac sense
The sad thing is, many are left to deal with these challenges alone
Many describe life after as a roller coaster
Recovery and Emotions
<click>
Issues such as
Fatigue, memory
Anxiety, Depression
Relationships, work
Survivors are quite rare and so it’s easy to feel alone
Face to face meetups are great therapy
People sharing their story helps them and others
Resources I mentioned earlier come from experience
Allows people to feel empowered in their own recovery
Some amazing people and stories of what you can achieve post arrest
Practical advice, not just from others but some health professionals
And perhaps most importantly there’s always a listening and empathic ear
Patient focussed website
Popular on the website: dvla, dental concerns, icd sounds & personal stories
These are key
Leaflet
Distributed by members to medical facilities around the country
New Facebook feature, Learning Units
Thanks to SADS - Free counselling
One of the biggest benefits is helping people to adjust
<CLICK>
Most in group would be classed as “GOOD” outcome
But many find they have been impacted in some way
Effects can be widespread – as I’ve seen in my group
Finding that new You can be hard and stressful
On both survivor and family
To validate my thoughts
I decided to dig deeper and do a few surveys
The first was whether people had their “Needs Met”
The chart clearly shows nearly all were happy with in-hospital care
<click>
But this is in stark contrast to the post discharge care
Where only just over a third were happy
<click>
A more recent poll shows
The second survey was regarding rehab
Where the cause of the cardiac arrest was a heart attack
Nearly all got rehab
<CLICK>
And conversely, for those that didn’t have a heart attack – most did not get rehab
<CLICK>
And overall, only a quarter got any psychological help
Peer support of some sort is invaluable
We are Cardiac PLUS patients
Not a lot of people “GET IT”
Services available – we just don’t get them
Care pathway non existent
Proactive care including counselling
Focus on CPR/AED, target of 11% survival
You help us survive but many struggle to obtain a quality of life
Lucky one of the 8%
Road to recovery
Uphill struggle
With many unexpected twists and turns
I’d like to help make it smoother
