SADS Awareness Week
28 September - 4 October 2020
The sudden death of a young individual is a tragedy that has a devastating impact on friends, family and the wider medical and lay community. Deaths due to cardiovascular disease (sudden cardiac death) are the leading cause of non-accidental deaths in this cohort, with the majority of these being genetic diseases that can affect other family members. Each week, approximately 12 to 16 young individuals aged 14-35 years die in the UK from sudden cardiac death. The loss of potentially productive life is hard to comprehend, especially when we generally consider these individuals to be the healthiest members of society.
Prevention of these tragedies has become an important focus of the medical and scientific community. There have been considerable advances in the national drive for increasing availability of AEDs in public spaces as well as in areas where exercise is taking place and schools. The survival rate from a cardiac arrest in the UK is less than 10% as an average, but it could be 90% if bystanders immediately start CPR and there is access to a public defibrillator within 8 minutes. In addition, the development of dedicated inherited cardiac conditions clinics has improved the care for patients with these conditions and their family members with an overarching aim to reduce the frequency of sudden cardiac death and improve quality of life.
The Joe Humphries Memorial Trust's (JHMT) is a key supporter in the fight against sudden cardiac death in the young in Leicestershire and the East midlands through raising awareness of SADS and partnerships with key stake holders to make Leicester heart-safe through their AED program.
The JHMT annual SADS Awareness Week marks the anniversary of the loss to Sudden Arrhythmic Death Syndrome (SADS) victim 14 year old Joe Humphries from Rothley who suddenly collapsed and died whilst out jogging on 4th October 2012.
To mark this key milestone in the JHMT calendar, on the anniversary of Joe's untimely death, we hold the annual SADS Awareness Week where we remind and educate healthcare professionals, sports-related professionals and parents and carers of young people about the dangers of undiagnosed heart conditions like SADS. Year on year, we build on the awareness we raise of these heart conditions. Each year, the SADS Week programme has developed in a full week of public facing activities across the community including a SADS in sport talk and CPR /AED training + Joe's Mini Heartstart For Sports Clubs training supported by key messaging via Trust comm including web and social media channels
This year the JHMT SADS awareness week (28th September to 4th October 2020) will be in digital format in light of the ongoing coronavirus pandemic. Despite this, the message has not changed – we must be aware of sudden cardiac death and SADS and continue to fight to reduce the frequency of these tragedies in the young.
During the week, pertinent issues in relation to sudden cardiac death and SADS prevention in the young will be displayed across various digital platforms. This will range from recognition of cardiac arrest and basics of cardiopulmonary resuscitation and AED use and how sports clubs and schools can be heart smart. In addition, we will take this opportunity to introduce the new specialist inherited cardiac conditions clinic in Leicester where patients with conditions that can cause sudden cardiac death and SADS are managed and where family members can be evaluated.
We are also delighted to have patient participation in the SADS awareness week, with brave Saskia kindly sharing her story of survival from sudden cardiac arrest and the impact on her life and exercise at school and the implications for her family members after specialist evaluation. During the week, she will tell her story! We are very grateful for her support.
I would like to thank members of the JHMT medical team (Marijke, Mike, Fraser, Lorna, Kuldip, Steve M & Ffion) and everyone behind the scenes for their fabulous efforts in contributing to this year's SADS awareness week programme.
This week is full to the brim of information for you. To read, but also to share. There is no age limits to knowing about CPR and AEDs. And you are the future. You can make a difference.
The difference that may have saved Joe's life 8 years ago.
The difference that will save many young lives in the future
As the patron of Joe's Trust (JHMT) I would like to thank everyone who has contributed so much time and effort to this year's annual SADS Awareness Week 2020 programme. Once again, a timely reminder for us all about the importance of people having the basic CPR lifesaving skills and knowing how to use a defibrillator. What a bystander does or does not do in those vital few seconds and minutes following a collapse can be the difference between surviving or not, which tragically is the case for so many people every year in the UK (27,000 potentially survivable deaths including young people).
Simple Skills really do save lives and CPR can buy vital time. If more and people understand this one message during this year's SADS Week and take a few minutes to learn CPR so to be better prepared to save a life then we really can make further inroads into giving someone a better chance of survival.
Once again, 'Thank you' also to the loyal band of willing volunteers who give up so much of their time and share their many talents to help JHMT raise awareness of SADS and goal to reduce the incidence of sudden cardiac deaths in young people (12 – 35 years old) like Joe.
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Day 1. Monday 28 September:
Importance of CPR and AED
If you find that somebody is not breathing, they have had a cardiac arrest. If a defibrillator is used and effective CPR is performed within 3-5 minutes of cardiac arrest, the chance of survival increases from 6% to 74%!!! Only 22% of people in the UK would be confident in performing CPR on a stranger. This statistic has to change in society as a whole for lives to be saved. Anybody can give them a chance to live. Find out how JHMT is raising awareness of recognition of cardiac arrest and how to perform basic CPR and AED use. You could be a life saver!
There is a defibrillator closer to you than you may think. It's a good idea to find out the closest one to your home, school, place of work, or any place that you go regularly. You will usually find a one at public places, like schools, your local Co-op, leisure centres and sports stadiums. There are apps like GoodSAM Responder and Staying Alive which you can use to help you.
Most importantly, anyone can do CPR and use a defibrillator. There is no requirement to be medically trained. Any member of the public could use a defibrillator to deliver a potentially life-saving shock to a patient. The defibrillator itself will guide you.
There is also not an age limit. Basic life support skills including resuscitation and defibrillation are going to become part of the UK's National Curriculum. If you are strong enough to push on a chest and are able to follow instructions from the defibrillator, you are able to perform these skills.
Below is an introductory video with a simple demonstration of CPR and the use of a defibrillator. Later this week we will be posting content across our social media channels about sudden arrhythmic death syndrome (SADS). We will talk in more detail about cardiac arrest in children and young adults, but the message throughout is consistent: anybody can give somebody in cardiac arrest the chance to live.
Day 2. Tuesday 29th September:
Young Cardiac Arrest HAPPENS
We often consider young people to be the healthiest segment of society. However, 12-16 young people aged 14-35 years die each week in the UK of a cardiac condition where cardiac arrest can be the first presentation of the disease! These deaths have a devastating impact on friends, family members and the community at large. We need to recognise that cardiac arrest can happen in the young, be a position to position to save those who have suffered cardiac arrest through early CPR and AED use, and provide support for survivors of cardiac arrest and their family members.
See below Saskia's story of surviving sudden cardiac arrest. This was only made possible by quick and effective bystander CPR and defibrillation, with AED on site. It was only by timely intervention at the point of collapse that Marijke and the EMS team were able to increase Saskia's chances of making a full recovery and a second chance of living a full life.
This is Saskia’s Story
'Hi, my name is Saskia Holland. On the 9th of September 2019, aged 15 years, I had a cardiac arrest while playing in a netball match.
Leading up to my collapse I complained of pain in my arms, I suffered with migraine symptoms after some matches but didn't realise at the time that my heart was the cause of all that.
I'm so lucky there was a defibrillator on site that day, with people trained on how to use them.
Medical professionals have told me how very lucky I am to still be here today. It's thanks to the fast actions of the people around me and the AED.
PLEASE if something doesn't feel right, please go for help. A simple ECG would have picked up my abnormal heart rhythm.
I have been diagnosed with Arrhythmogenic right ventricular cardiomyopathy (ARVC) and have an implanted defibrillator now. I am here today thanks to the AED on site and everyone that helped me that day.'
My name is Marijke van Eerd, I am a sister in the Children's emergency department at Nottingham University Hospitals NHS Trust. I have worked as an emergency nurse since 1994, but during my career also spent some time as a resuscitation officer and resuscitation matron. And this year I will be starting a Masters course in Paediatric Advanced Clinical Practice.
Since learning how to do CPR myself I have been involved in teaching it. First to my colleagues in the emergency department but as soon as I could, to anyone who wanted to learn. New mums, members from the cricket club, the gentlemen from the bowling green and every year to the year 6 class of the school my children used to go to and their teachers.
Meeting Steve and Angie and getting involved in the Joe Humphries Trust has inspired me to keep pushing for CPR and AED training wherever I can. Through work I unfortunately know the devastation when a child has a sudden cardiac arrest, but more and more we witness children who arrive in hospital alive thanks to being resuscitated on the scene with a local AED.
One of those children is Saskia. On the 9th of September I was at work in the emergency department when the red phone rang.
A 15 year old 'cardiac arrest'. We got prepared for the worst, as we never know what needs to happen on the arrival of a child in cardiac arrest. Drugs were prepared, the defibrillator was switched on, the team were briefed and everyone knew their task.
Saskia arrived alive. A sigh of relief and calm amongst the team while we listened to the story from the paramedics and her parents. She was playing netball, had just jumped and collapsed suddenly. Some parents in the audience immediately started CPR, they were doctors and did not hestitate, and when they asked for an AED it arrived promptly. One shock and Saskia's heart started to beat normally again.
The AED was kept in the sportshall all the time. Hanging up by the entrance. Always visible, rarely used. But is was there.
It saved Saskia's life. One shock was all she needed. The difference between life and death.
Cardiac arrest in young people happens. Every day. And an AED and good CPR will make the difference.
Learn it, read about it, practice it, talk about it. Use it. You could save a life.
Prevention Is Better than Cure.
A child/young adult should seen by a doctor if she/he has experienced below:
- Family history of unexpected, unexplained sudden death (under the age of 40).
- Do you get unusually short of breath during or shortly after exercise?(not explained by just being unfit!)
- Do you get palpitations (eg, heart racing fast, missing beats, fluttering sensation, irregular pulse rate, thumping sensation in chest)?
- Fainting as a result of emotional excitement/distress/startle?
Day 3. Wednesday 30 September:
Message to sports coaches and teachers
Exercise is unquestionably the best means available for cardiovascular disease prevention. It is free, readily available, and is not associated with side effects. However, exercise can precipitate cardiac arrest in those harbouring certain cardiovascular conditions. It is everyone's responsibility to ensure that everywhere that exercise takes place are heart-safe to protect individuals from sudden cardiac death. Awareness of bystander cardiopulmonary resuscitation (CPR) and early deployment of automated external defibrillators (AEDs) is very important. Two large studies in recreational athletes have shown that prompt bystander CPR and early defibrillation was associated with a three-fold increase in survival from exercise-related sudden cardiac arrest! Sport England, in collaboration with JHMT and BHF, are championing the push for clubs at all levels to reduce the potential disaster should anyone playing sport collapse as a result of cardiovascular disease.
Find out more on how your sports club can become heart-safe as part of a medical action plan throughout SADS week and through the JHMT website.
Play Sport, PLAY HEART-SAFE
So How Can The JHMT Help?
The JHMT have pioneered the Joe's Mini Heartstart for Sports programme which provides free training for club members, supporters, coaches and officials which is endorsed by BHF and Leicester City Council. They also provide help and support to Leicester and Leicestershire community sports clubs who are wanting to purchase a defibrillator. Information on cost, choosing the right defibrillator and how to purchase including useful contacts can be found at: https://www.jhmt.org.uk/community-aeds
Stay Ahead Of The Game - Don't let it take a cardiac emergency before taking steps to be PREPARED for #SCA
JHMT advocate the need for sports clubs, groups and organisations at all levels to be prepared and ready to deal with a cardiac emergency. Players and club officials, in addition to club coaches and volunteers, have a vital role to play by knowing how to apply CPR and how to use a defibrillator.
JHMT is also very committed to maximising the availability of Defibrillators to the wider community. In essence, rather than having the Defibrillator locked away in a pavilion and therefore inaccessible for much of the time, JHMT seeks to actively encourage the placing of Defibs in an external Cabinet so that it is available to the wider community 24/7. This encouragement includes, where circumstances are suitable, donating an external Cabinet to the Club, with the only cost to the Club being that of fitting (including an associated electrical feed for the defibrillator).
SCA happen to Anyone, Anywhere, Anytime and any AGE– including seemingly fit and healthy young people, 12 – 35 years old due to undiagnosed heart conditions like SADS. Recognising any warning signs and acting promptly (with more people trained in basic CPR skills and being familiar with and having quick access to a defibrillator, including players, coaches, officials and having quick access to an AED ) can mean the difference between life and death.'
To find out more on how Joe's Trust ( JHMT) can help your club/ organisation to create a heart safe sporting and community environment go to https://www.jhmt.org.uk/impact
"Wherever sport is played, a defibrillator should be on site and readily accessible. When every second counts, it could be the difference between life and death. Immediate CPR is crucial whilst the defibrillator is brought to the patient and it's also vital that as many people as possible have CPR skills, including players, officials and spectators as they may be the closest to where someone has collapsed." – Charles Poole – JHMT
Why does my club need an AED?
There is a lot of research which has shown that prompt CPR and early defibrillation gives better survival. In the UK survival after out-of-hospital cardiac arrest is under 10%. Having an AED at your pitches, clubhouse or with the coaches enables much quicker defibrillation should disaster strike. In many sports areas if you don't have a AED on site then, on average, it will take between 8 and 16 min to run to a AED and back. If it takes 8 minutes the chance of survival is 20%. With a defibrillator onsite this delay may be more like 2-3 minutes giving a survival rate 70-80%.
Don’t Be Caught Out!
Day 4. Thursday 1 October:
Message to schools – Anyone can be a lifesaver
A heart attack is different from a cardiac arrest – in a cardiac arrest the heart stops pumping and that person will die within 10 minutes without help. A cardiac arrest can happen to a seemingly fit young person. In the UK there are approximately two deaths per day in young people aged 12 – 35: one of them could be your friend! There are two easily understood actions that may save that person's life: the first is prompt CPR and the second is the early application of a defibrillator (AED). Training only takes 30 – 45 minutes. Schools now provide this training and all pupils should ask if they can undertake these lifesaving skills. This means that when you see someone collapse you will not panic, but try and save their life.
GET HANDS ON for this year’s Restart A Heart Day - 16 October 2020
Restart a Heart (RSAH) is an annual initiative led by Resuscitation Council UK in partnership with The British Heart Foundation, British Red Cross, St John Ambulance, and Yorkshire Ambulance Service which aims to increase the number of people surviving out-of-hospital cardiac arrests. In 2017, the initiative went global with the formation of World Restart a Heart (WRSAH).
On and around 16 October each year, an alliance of partners all over the world (including UK Ambulance Services, Medical Schools, and Fire and Rescue Services) come together to increase public awareness of cardiac arrests and increase the number of people trained in life saving CPR. They do this by organising and facilitating training events and also providing opportunities for people to learn CPR digitally in the safety and comfort of their own home. This year sees the seventh Restart a Heart and the third World Restart a Heart campaign.
Whether it's learning CPR or teaching it, there's plenty of ways to get involved with #RestartAHeart 2020! Learn more about how to get hands on with life-saving skills. http://bit.ly/RestartAHeart2020
Day 5. Friday 2 October:
UHL’s new ICC Clinic
We are delighted to introduce the new inherited cardiac conditions (ICC) clinic at Glenfield hospital, led by Dr.Harshil Dhutia. This service aims to improve outcome and quality of life for patients with ICC implicated in young sudden cardiac death and SADS. In addition to performing investigations to identify ICC, the clinic also offers risk assessment for those identified with disease and provides guidance for the treatment options from lifestyle changes to medications to more invasive treatments for those at higher risk. The clinic also facilities the evaluation of family members and has links with clinical genetics to offer a comprehensive cardio-genetic work-up.
For more information including a Q and A session with Dr.Harshil Dhutia, please see the link below
More information on inherited cardiovascular conditions can be found at:
JHMT Annual Bike Ride
Sunday 4 October 2020
Location: Rothley to Belvoir and around.
The JHMT annual Bike Ride as part of SADS week will start out from outside the bell tower at Rothley Parish Church with 8.30 am start time- and then proceed on a rural route to Bottesford and very northern most tip of Leicestershire. It is is 52.6 miles and we expect it to finish early afternoon. It is a great way to finish Summer and the Bike Season.
On returning to Rothley there is an option of a team drink at the Bluebell pub.
The ride is strictly for 16s and over and under 18s must be accompanied by an adult.
This is an informal event and the Trust takes no responsibility for health and safety. Those joining us are assumed to be aware of the Highway Code, experienced cyclists and will bring suitable tools to deal with any mechanical issues! The route is suitable for road bikes.
The bike ride will be in line with the government's Covid's guidance.
Here is a web site with all the route details -
For further details please contact Simon Taylor on Telephone: 07733 124867.
Come along for the ride, all in aid of a great cause – it is a great favourite with those that have taken part before
JHMT Inspire Awards small grants - helping young people (13 – 21 yrs old) from the city and county fulfil their potential, develop their talents & make a difference across the community.
JHMT Inspire Awards of up to £500 are handed out to young people aged 13-21 from Leicester and Leicestershire to help them fulfill their ambitions in the fields of music, arts, sports and community endeavour. Since the awards' inception in 2014, more than £30,000 has been awarded to help 160 young people to do some amazing things.
For further info' go to: Inspire Awards
Join Joe's army of Volunteers
If you want to go the extra mile to help Joe's Trust raise awareness and reduce the incidence of sudden, cardiac death in young people, 12 - 35 years old, please come and join us. It doesn't matter whether you can sponsor an event, taking part in fundraising activities, hand out leaflets for an hour, or make a cup of tea.
Join Joe's growing army of volunteers who go the extra mile to make a difference to help JHMT save young hearts.