The Arrhythmia Alliance

Trudie Lobban, Founder and Trustee, Arrhythmia Alliance, Stratford Upon Avon, Warwickshire, UK

Trudie Lobban, Founder and Trustee, Arrhythmia Alliance, Stratford Upon Avon, Warwickshire, UK

Describe the purpose and goals of the Arrhythmia Alliance. When was it formed, and why? The purpose and goals of the Arrhythmia Alliance (A-A) are to provide information, support (24-hour helpline), and signposting (referrals) to all those affected by cardiac arrhythmias. Our overall aim is to raise awareness of cardiac arrhythmias, improve the diagnosis and treatment of cardiac arrhythmias, and enhance the quality of life for people living with cardiac arrhythmias. We also assisted with the implementation of the National Service Framework (NSF) Chapter on Arrhythmias and Sudden Cardiac Death. Our objectives are as follows: To bring together member charities, healthcare professionals, commissioners and their allies; To advance the concerns and needs of all our members to assist the development of the knowledge and skills base of medical professionals and professions allied to medicine; To cultivate multi-centre and multi-disciplinary research to work with others towards the prevention of sudden cardiac death in vulnerable groups; To promote, when appropriate, the value and need for cardiac pacing, implantable defibrillators, catheter ablation, and other treatments for arrhythmias; To prevent misdiagnosis in patients suffering from arrhythmia and transient loss of consciousness; To assess and quantify unmet needs amongst those affected by arrhythmia; and To secure better care, leading to a better quality of life, for individuals with arrhythmia. A-A's ultimate goal is to promote better understanding, diagnosis, treatment and quality of life for individuals with cardiac arrhythmias. Who can join the Arrhythmia Alliance? Approximately how many members are there currently? Anyone who suffers from an arrhythmia, as well as their carers and families, may join A-A. We also accept memberships of other voluntary and charitable organizations whose members have an interest in arrhythmias. All kinds of healthcare professionals involved in the treatment of patients with arrhythmia are welcome to join. In addition, applications are considered from industry organizations that have an interest in the diagnosis and treatment of arrhythmias. What are some of the services provided to Arrhythmia Alliance members? Services provided to members of A-A include a 24-hour telephone support helpline and a wide range of Department of Health (DoH) accredited patient information booklets on different conditions and treatments. We also provide specially prepared care pathways for clinicians and job descriptions for the new role of the arrhythmia care coordinator and arrhythmia nurse. Our comprehensive Web site is constantly updated with relevant information gleaned from around the world, and a monthly e-bulletin is sent to all members. Regular regional meetings are also held for both professionals and patients. In particular, we host an annual congress, which was attended this year by over 800 professionals, patients and industry partners. This provided a platform for all those involved in the early diagnosis and treatment of arrhythmias to network and exchange information. How many people in the UK are affected by heart arrhythmias? Cardiac arrhythmia is the number one killer in the UK, more so than lung cancer, breast cancer and AIDS combined. Cardiac arrhythmias affect more than one million people in the UK, and are consistently a top 10 reason for hospital admissions, using up significant A+E (Accident and Emergency) time and bed days. Describe the Arrhythmia Awareness Week. Does this still take place each year? Arrhythmia Alliance's Awareness Week is an annual event that is designed to raise awareness of arrhythmias and raise funds to support the A-A's aims and objectives. Our supporters held over 165 events around the UK involving cardiologists, doctors, nurses, primary care trusts (PCTs), as well as patients and individuals. Events took place in hospitals, GP surgeries, schools, libraries, shops and other venues within the community. All events were well attended, and feedback demonstrates the need for greater awareness. What medical meetings does the Arrhythmia Alliance take part in? About how many conferences does the Arrhythmia Alliance participate in or host each year? The A-A takes part in numerous medical meetings, including those from the Heart Rhythm Society, the UK Heart Rhythm Congress, the British Cardiac Society, and many other national and international meetings throughout the world. What are some of the ways in which the Arrhythmia Alliance helps benefit patients? What educational information can patients find about their arrhythmia on your website? The benefits of membership to the A-A are many. The A-A, through its support helpline and online inquiry service, provides information and advice on all kinds of arrhythmias. Our DoH leaflets on different conditions and treatments are available by post and are also downloadable from our Web site. We offer sympathy and support, and are sometimes able to signpost sufferers to their nearest specialist consultant where available. Information is also provided on the National Service Framework for Arrhythmia and Sudden Cardiac Death, which was introduced in 2005. This outlines the standard of treatment that patients should expect from their PCT. The arrhythmia conditions covered in our literature include atrial fibrillation, bradycardia, tachycardia, sudden cardiac arrest, reflex anoxic seizures, syncope, vasovagal syncope and supraventricular tachycardia. Treatments and procedures covered in our booklets include catheter ablation, tilt testing, ICD/CRT devices, pacemakers, and electrophysiological studies. In the Arrhythmia Alliance's heart rhythm booklet, it is noted that the UK has only 65 heart rhythm specialists (about 1 per million of the UK population), and only 30 heart rhythm nurses. Is this still an accurate number? How has this affected patient care? What is being done to increase medical staffing? Currently there are only 64 electrophysiologists, hence we lag behind western Europe and the US in providing adequate services to the one million arrhythmia sufferers and their carers. However, we are working closely with the Department of Health to help grow the arrhythmia work force. What are the Arrhythmia Alliance's goals for the future? A-A's goals for the future include increasing awareness, improving services, and reducing the number of sudden cardiac deaths and misdiagnoses of epilepsy (30% and 39% of children are misdiagnosed with epilepsy when they in fact have an underlying and potentially fatal cardiac arrhythmia). In addition, there are 100,000 sudden cardiac deaths per year in the UK 80% of which could be avoided if diagnosed and treated accordingly. In five years we wish everyone to understand the word arrhythmia, and be able to identify and receive appropriate treatment, which in turn will restore the patient back to a person who leads an active life and gives back to society rather than being a drain on healthcare. Why is it important for medical professionals who work in the treatment of heart rhythm disorders to get involved with the Arrhythmia Alliance? By working together we can speak with a louder voice and achieve greater things. We have already changed government policy and held the first UK Heart Rhythm Congress, where only 150 delegates were expected but over 800 attended (internationally). For more information, please visit: www.aaaw.org.uk www.ukheartrhythm.org.uk www.arrhythmiaalliance.org.uk