Improving the quality of life for those affected by arrhythmias

Trudie Lobban founded STARS 28 years ago after her daughter was diagnosed with a heart rhythm disorder. It took her three and a half years before she got a diagnosis, and it was her doctor who asked if Trudie would start a small support group. Now, 28 years later, millions of families are part of STARS.

In 2003, she brought together a handful of organisations to campaign to have an extra chapter added to the National Service Framework (NSF) on coronary heart disease. The NSF was published in the year 2000 with seven chapters, but the word arrhythmia was only mentioned once and atrial fibrillation (AF) – the most common type of arrhythmia – was not mentioned at all. Her campaign was successful, and the government agreed to add a new chapter on arrhythmias and sudden cardiac death to the framework.
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By 2004, she had successfully launched World Heart Rhythm Week, which also saw the establishment of Arrhythmia Alliance. This is a collaboration of patients, carers, healthcare professionals, policymakers and allied professionals – all those involved in or affected by any cardiac arrhythmia or heart rhythm disorder.

By 2007, STARS and Arrhythmia Alliance had gone international. At this point, Trudie realised that while 51% of the enquiries to the charity were AF related, when she looked online, there was no organisation offering information, support, education, and awareness on the condition. So, she launched the AF Association together with Professor A John Camm. The three charities now work together in collaboration with each other and other organisations.

Where does your drive and passion for the charities come from?

“It is not just my daughter that has a heart rhythm disorder. In 2008, my husband died from sudden cardiac death. Between his death and the funeral, my mother was diagnosed with AF, and six months later, my father was diagnosed with AF too. They have both had AF-related strokes and bleeds. And sadly, my mother went on to develop vascular dementia and died not so long ago.

“So, my thinking, my passion, my commitment is driven by my daughter, my husband, and my parents. I do not want others to go through what we have gone through.

“I was the first non-medical person to be asked to sit on an expert medical panel, and I now sit on a number of medical boards. In addition, I give presentations at medical meetings across the globe (however due to the pandemic I now present virtually). I have also been involved in a lot of research as a co-author. I am not a doctor, but I am now recognised for my knowledge and representing patients, which led to me being awarded an MBE for my services to healthcare.”

What are the core aims of the three charities? What do they strive for and set out to achieve?

“The three charities all have different focuses. STARS aims to raise awareness of reflex anoxic seizures (RAS) and other syncope-related conditions. AF Association focuses on atrial fibrillation (and AF-related stroke); and Arrhythmia Alliance covers all arrhythmias. However, our aims and objectives are the same – to provide support, information, education and awareness, not just for patients, but for healthcare professionals, policy makers and the public, which will in turn improve patient outcomes.

“Our ethos is to prevent, detect, protect, and correct – therefore, perfecting the patient care pathway. Examples of this include, helping people to detect arrhythmias through a simple manual pulse check or mobile ECG, protecting against sudden cardiac death with the placement of automated external defibrillators (AEDs), and ensuring patients have access to appropriate treatments. All of these things will help to perfect the patient care pathway, restoring the patient back to a person who has a good quality of life.”

What sort of services do you offer and has the pandemic affected these services?

“We offer a helpline, online forums, face-to-face meetings (when we are allowed to), virtual meetings, and online resources. For healthcare professionals and patients, we host congresses. We had our first virtual congress last year with 5,500 healthcare professionals from 74 different countries, and more than 1,000 patients for the Patients Days (which we host for each charity) and we will be doing the same this year.

“We sit on the NICE committee of stakeholders and take part in research to make sure that patients’ voices and experiences are included. We are all pieces of the jigsaw; we need policymakers to ensure best practice, we need doctors to diagnose and treat, and we need the industry to provide drugs and the devices. However, the patient is the most important piece of the jigsaw – ensuring their individual wants and needs are met is fundamental. Of course, a patient only becomes a patient once they are diagnosed, so we are here to make sure arrhythmias are detected and diagnosed as early as possible.”

You mentioned the importance of getting more people diagnosed and treated, would you say this is one of the main reasons the charities are needed?

“Well, 39% of children and 30% of adults diagnosed with epilepsy are misdiagnosed, and many have an underlying potentially fatal arrhythmia. There are almost one and a half million people diagnosed with AF and a further 400,000 to 500,000 who are totally unaware that they have the condition. These people are at high risk of an AF-related stroke, heart failure, depression, anxiety, and dementia – all of which could be avoided if AF is detected and these risks are managed.

“What is more, 100,000 people die from sudden cardiac death every year in the UK alone; 80% of these deaths could be avoided if diagnosed or treated with the use of an AED. That is why a big part of our mission is to place AEDs, raise awareness of sudden cardiac arrest, as well as highlighting the difference between a heart attack and a sudden cardiac arrest.”

Could you tell me a bit about your Know Your Pulse (KYP) campaign?

“We have been running the Know Your Pulse campaign for several years now, teaching the public to get to know their heart rhythm. Generally, people know their weight, their blood pressure, what constitutes a healthy diet, that it is bad to smoke and drink too much alcohol, but people often pay little attention to their pulse to know the rhythm of their heart.

“It is not complicated or hard to know your pulse and you do not need any equipment. All you need to do is place three fingers on your wrist. There are also watches with ECGs and apps you can download to make it even easier for people. In fact, we are currently offering free 24-hour access to the Fibricheck app to encourage people to check the rhythm of their heart.

“All of these methods can help to detect AF. It is so important to know your pulse and your heart rhythm, as it could save your life.”

How have you promoted the campaign?

“Last year, we were going to roll out Know Your Pulse in flu clinics, then along came the pandemic. So, when the government introduced vaccine hubs and clinics for Covid-19, we decided to roll out the campaign in some of these clinics, of course, while making sure not to delay or slow down the vaccine process.

“With many of the vaccines, you have to sit for 15 minutes before you leave. We thought this would be a good opportunity for people to measure their pulse, by either putting their fingers on their wrist or by using a device that can be sanitised between uses. Since you are sanitising the desk and the chair when the person moves this does not add any extra time or cause any delays.

“We had lots of volunteers offer to help with the programme and several vaccine hubs took this up. We found the campaign to be largely successful and found quite a few people, particularly in the older age group, but also some younger people, that had possible AF.”

What are the dangers and long-term effects of heart arrhythmia?

“We all get palpitations or feel lightheaded at times. However, it is important to identify whether these are symptoms of an irregular heart rhythm. Sometimes palpitations are nothing to worry about, but they can also be a sign of a more serious condition.

“Palpitations can be a symptom of AF, which is the most common arrhythmia and a leading cause of AF-related stroke. AF-related strokes are far more severe, disabling, debilitating, and in many cases, fatal than any other type of stroke. AF causes heart failure, dementia, anxiety, depression, and yet, with anticoagulation therapy, you can reduce the risk of clots forming in the heart which in turn reduces the risk of stroke. However, you will also need treatment for the symptoms.

“If your heart is racing too fast (tachycardia) or too slow (bradycardia), you may need a pacemaker to regulate the rhythm. There are also genetic arrhythmias and potentially fatal arrhythmias, such as ventricular tachycardia and ventricular fibrillation. Fortunately, these types of arrhythmias can also be treated. However, if you are not aware, or go untreated, then that is when you are at risk of sudden cardiac death.”

Is there a particular cause for arrhythmias and are there any preventative measures you can do to lower your risk?

“Not always, because sometimes it is inherited. For example, Denmark’s midfielder Christian Eriksen (who collapsed on the pitch at the Euros) would have had all the tests, but they still did not show that he was at risk of a potentially fatal arrhythmia. However, generally leading a healthy lifestyle – i.e., eating a balanced diet, keeping your alcohol consumption at low-to-moderate levels, and avoiding smoking – will all help.

“My husband was perfectly healthy, and then one morning, he felt faint and died. It can happen to anyone. This is why it is so important to get to know the rhythm of your heart. Every day, sit down for five minutes, take a few deep breaths, and take your pulse and that way you will know if it is irregular.

“An ideal heart rate is between 60 and 100 beats a minute, yours might seem perfect at 66 BPM, but the important thing is to measure whether it is regular. Is it fast then slow? Is it erratic? If it is, there is a chance it could be arrhythmia.

“This is also why we have our Defibs Save Lives Campaign. We need to have AEDs everywhere; they should be as common as fire extinguishers and smoke alarms. In an ideal world, we would all have one in our house, but while that is not possible, we should never be more than three minutes away from one.

“Anyone can use them, they talk to you, there are pictures; an AED explains how to put the pads on someone and then it tells you when to push the button. You cannot harm anyone as it will not shock them unless they are in a potentially fatal arrhythmia, but you could save someone’s life.

How did the Covid pandemic affect patients with arrhythmias? Were they at risk from worse outcomes and did they have to shield?

“The Covid-19 pandemic affected all of us, but for many people with arrhythmias, it had an even greater impact. Although there are no figures available yet for how people with arrhythmias were affected by the pandemic, we know from word of mouth that it was a very difficult time for many.

“People with AF tend to be in the older age group, in fact AF affects one in four people over the age of 65. Older people also often have other health-related conditions, so many had to shield and take extra precautions as a result of that. For example, those with palpitations and AF struggle with their breathing, so if they got Covid, that would exacerbate the problem. While their arrhythmia would not make them more susceptible to contracting Covid (but that does depend on what other conditions they may have) if they did catch Covid, they may struggle to fight it. Fortunately, those in the older age group received their vaccines sooner so were protected early on.”

Is there anything that doctors should have on their radar now coming out of the pandemic?

“Yes. They should be routinely checking the pulse of every person, wherever they are presenting in the healthcare pathway, whether that is primary care, A&E, going in for their flu vaccine, their Covid vaccine, their annual health check – wherever they touch the healthcare system, they should have their heart rhythm checked. Podiatrists, for example, are perfectly set up to check a patient’s pulse to see if their heart is in rhythm since we have a pulse in our foot. Pharmacists could also be checking pulses either manually or using a 1-lead ECG for their older patients who come to collect their medication.”

Are you concerned about the backlog? There are millions of patients waiting for diagnosis in all areas of medicine, what will this mean for people with arrhythmias?

“Absolutely. We already know there have been more heart attacks and strokes because people are not going into hospital as much – some of those strokes will be AF-related because people with AF have gone undetected and not received anticoagulation therapy. For this reason, we have Know Your Pulse videos on our website. We urge people to get to know the rhythm of their heart to see whether it is too fast, too slow, or irregular. Just like you know your blood pressure and your weight, you should know your pulse. It is so simple, it takes 30 seconds, and it could save your life.”

To learn more about A-A, STARS, AF-Association, and the Know Your Pulse campaign, visit: www.heartrhythmalliance.org or email [email protected].