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Trudie Lobban MBE is the Founder & Trustee of Arrhythmia Alliance. Here, we learn more about Arrhythmia Alliance, including their aims, challenges and milestones.
Can you start with what Arrhythmia Alliance is and the story behind it?
Arrhythmia Alliance is a coalition of charities, patient groups, patients, carers, healthcare professionals, policy-makers, politicians, allied professionals and all those involved in the care of or affected by cardiac arrhythmias. Arrhythmia Alliance works in collaboration to improve diagnosis, treatment and quality of life for all those suffering with arrhythmias.
23 years ago I set up STARS (Syncope Trust And Reflex anoxic Seizures), in response to the difficulties in getting my daughters faints correctly diagnosed after three years of worry as syncope caused by a heart rhythm disorder.
As the charity grew I was asked by a number of cardiac specialists if I would set up a charity specifically for people with arrhythmias, to provide them with support, information and a voice.
From this, Arrhythmia Alliance was formed in 2004.
I established Arrhythmia Alliance in 2004 following a successful campaign to include an extra chapter into the National Service Framework on Coronary Heart Disease on arrhythmias and sudden cardiac death. This brought about national change in the improvement and delivery of arrhythmia services throughout the UK.
Please can you explain what arrhythmias are?
A cardiac arrhythmia is defined as a condition where the rhythm of the heart is too fast, too slow or irregular. It covers a range of conditions from palpitations, syncope (fainting), Reflex Anoxic Seizures, Atrial Fibrillation to sudden cardiac arrest. These conditions can be treated through cardiothoracic surgery to improve quality of life.The most common cause of death in the UK is due to sudden cardiac death, often caused by a fatal arrhythmia.
The most common arrhythmia is atrial fibrillation (AF) affecting 1.5 million people in UK and 33 million worldwide. It is the leading cause of AF-related stroke. AF is the erratic rhythm of the heart which prevents the blood from flowing freely through the heart, often clots form and break off either causing heart failure or travelling to the brain to trigger an AF-related stroke.
What are the common symptoms to look out for?
It should always be remembered – there is no such thing as a simple faint – so if you or a loved one are experiencing unexplained fainting then you should be referred for a cardiac test such as a 12-lead ECG to rule out any potentially fatal arrhythmia. Too often faints of unknown origin are misdiagnosed as epilepsy.
How are you currently trying to raise awareness around arrhythmias?
Arrhythmia Alliance founded and hosts World Heart Rhythm Week, which is in the first week of June and is now in its twelfth year. We also organise Global Atrial Fibrillation Awareness Week, which is in the third week of November and is now in its sixth year. Arrhythmia Alliance also host ‘Know your Pulse’, a campaign to show how simple and easy it is to take a manual pulse rhythm check, which could detect an irregular heart rhythm.
Our Detect Protect Correct Perfect mission is to ensure Arrhythmias are detected early through a simple pulse check or hand held ECG.
- Protect against sudden cardiac arrest with the placement of automated external defibrillators
- Protect against AF-related stroke with access to appropriate anticoagulation therapy (not aspirin)
- Correct the irregular arrhythmia with speedy access to treatment
- Perfect the patient care pathway to enable the patient to better manage their condition
For World Heart Rhythm Week, our focus is ‘identifying the undiagnosed person’ and we are asking everyone to take the ‘pulse check challenge’ to:
- Make 1m people pulse rhythm aware
- Take 10,000 pulse checks
- Hold 100 Know Your Pulse events
- Identify 1,000 people with an undetected irregular heart rhythm
We also have our Defibs Save Lives campaign and last October we placed our 3000th AED (Automated External Defibrillator).
How has your role changed from when you started compared to now?
Arrhythmia Alliance was founded at my kitchen table and now we are established in over 40 countries worldwide. It began after my daughter, Francesca was diagnosed and now we are world recognised and hold international conferences, and have raised awareness of arrhythmias to 10 million people in over 40 countries.
The doctor who diagnosed Francesca asked me to establish a group, so I did, and then the local newspaper got involved, which moved onto national breakfast shows. It really was full-on straight from the beginning as nothing else similar existed at the time.
What are the core aims of Arrhythmia Alliance?
The core aims of Arrhythmia Alliance is to provide information, support and education for all those with cardiac arrhythmias. During Heart Rhythm Week in the UK, we have previously carried out 10,000 pulse checks.
How do you plan on reaching these aims?
We plan on achieving these aims through the media, local, regional, national events, local pharmacists and affiliates in different countries. We push the same message and same information across the world, including countries such as, China, Australia, Uruguay, Argentina, Peru, Sweden, Denmark and Saudi Arabia.
How has the charity grown and where would you like to see it in five years?
Our vision by 2020 is to make arrhythmia a household name, so everyone knows what arrhythmias are in the same way people know cancer, diabetes and dementia, for example.
What has been your greatest challenge?
The greatest challenge is getting the message out there for people to understand and to bring about change. We need to secure ongoing support to be able to deliver our aims and objectives. Partnering with others ensures we all work together to influence policy makers and bring about change.
What has been yours and Arrhythmia Alliance’s biggest achievement?
I was awarded an MBE in 2009 and I am a fellow of College of Physicians; although I am not a doctor, I have been recognised for my work. Our first big success was getting a whole chapter of the CVD National Service Framework 2004 devoted to arrhythmias. In its original draft format there was only one minor mention of a condition that affects millions of people in the UK.
From this chapter we were able to positively influence the provision of quality cardiac services for people with arrhythmias. We now have over 100,000 people in our database which shows how strongly we have grown over the years, and to date we have checked over 1m pulses and reached more than 10m people in over 40 countries. We have come a long way from my kitchen table!
Do you have any other thoughts or comments?
I want everybody to become pulse rhythm aware. We would achieve our goal of saving thousands of lives, reducing AF-related stroke, stopping unnecessary hospital admissions by encouraging cardiac tests. It is something that is so simple; we do not need equipment, it will not cost anything, it will save money and more importantly it will save lives.
Find out more about Arrhythmia Alliance and our private cardiologist services or make an online enquiry.