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Making a difference in arrhythmia

Arrhythmia Alliance are global advocates, working in partnership to reduce the number of deaths, and the negative impact on individuals lives, caused by cardiac arrhythmias and their associated morbidities, such as heart failure, and strokes attributed to atrial fibrillation (AF). By raising awareness and campaigning for the improved detection and care of heart rhythm disorders, Arrhythmia Alliance aims to extend and improve the lives of the millions around the world who these conditions affect. For example, over 32 million people worldwide have AF, the leading heart rhythm disorder.1
Our work reaches patients in over 30 countries worldwide, often in partnership with healthcare professionals, from primary care to specialist care, involving allied professionals, industry and governments.2
Even though there have been tremendous breakthroughs in heart disease, leading to reductions in overall mortality and morbidity, arrhythmias still have levels of mortality and morbidity that can be managed more effectively. Arrhythmia Alliance has campaigned successfully through its history to change policy, drive guidance and improve the management and care for patients with arrhythmias, but more still needs to be done.
Our focus in 2017 is ‘Identifying the undiagnosed person, and improve the patient journey’. During World Heart Rhythm Week 2017 (5–11 June), we intend to make over one million people pulse aware (that is, raise their understanding of the importance of their pulse and its connection to heart rhythm), provide over 10,000 pulse checks and identify 1000 people with an arrhythmia. Events are taking place across the world and we welcome any organisation that wants to get involved and asking them to go to for more details.
Identifying the undiagnosed person with an arrhythmia
During 2017, Arrhythmia Alliance will focus on identifying the undiagnosed person across several arrhythmias to:
  • Help identify those people with undiagnosed AF, and ensure they receive appropriate therapy and treatment to reduce their risk of an AF-related stroke. There is an annual 5% increased risk of an AF-related stroke for patients not diagnosed or appropriately anti-coagulated. It is estimated that one in three people with AF are undiagnosed.3 Recent studies have shown that in 9% of all ischaemic strokes, AF is only detected after the stroke has occurred. AF is often asymptomatic, and therefore unknown in a large proportion of people who have it. If we could detect AF before stroke occurs by screening, and give anti-clotting medication, many strokes could be prevented.4
  • AF is the most common heart rhythm abnormality, and is associated with a third of all ischaemic strokes, which are typically more severe and debilitating for the patient. Data from stroke registries show that both unknown and untreated or under treated AF is responsible for most of these strokes.5 Most could be prevented if efforts were directed towards detection of AF before stroke occurs, through screening or case finding, and the provision of oral anticoagulant medications to prevent an AF-related stroke.
  • Call on the UK National Screening Committee to recommend a national AF screening programme for people 65 years and over. Opportunistic screening is a positive first step but has its limitations as demonstrated by the very low provision of manual pulse rhythm checks in the NHS Health Check programme – even though these checks are recommended before every blood pressure measurement taken.6
  • A recent White Paper published in Circulation, by AF-Screen International (a multi-disciplinary, multi-country collaboration) provides further rationale and evidence for national AF screening programmes. The co-authors, including Trudie Lobban, Professors John Camm and Richard Schilling, are calling on national governments to implement screening programmes in their countries to reduce the unnecessary number of AF-related strokes and deaths.7
  • Raise greater awareness of syncope (a spontaneous loss of consciousness caused by an insufficient blood supply to the brain) among hospital clinicians. Syncope is poorly diagnosed, with a significant number of patients misdiagnosed with epilepsy. It is estimated that 30% of patients treated for epilepsy are suffering from syncope. Six per cent of A&E admissions, and 3% of all hospital admissions are due to a faint of unknown origin.8 This means it is important that all patients admitted with a faint or blackout of unknown origin are given a 12-lead electrocardiogram recording to determine if caused by a heart rhythm disorder.
  • Make people pulse aware. Arrhythmia Alliance set up its ‘Know Your Pulse’ campaign in 2004, to raise public understanding of the importance of your pulse, provide manual pulse rhythm checks and identify people with irregular heart rhythms – since then over one million people have had their pulses checked in 25 countries.
Driving best practice in arrhythmia management
Every year during October, over 3000 heart rhythm experts and healthcare professionals from around the world converge on the ICC, Birmingham, for the annual Heart Rhythm Congress (HRC), the UK’s largest educational congress devoted solely to heart rhythm disorders, with many patients in the UK struggling to get the appropriate management and treatment they deserve. 
The goal of HRC is to enable healthcare professionals, patients, carers, industry, allied professionals and advocates to share learning and best practice, working together to improve the overall detection, management and treatment of all arrhythmias and help reduce the thousands of unnecessary deaths that occur each year in the UK from arrhythmia related conditions such as sudden cardiac arrest and AF-related stroke. For more information, please visit
Equity of access to latest, proven technology
Pacemaker and defibrillator implant variation across the UK
The latest National Cardiac Rhythm Management (CRM) Audit data9 showed significant variation across the UK in the rates of pacemaker and defibrillator implants, and that the UK lags far behind many of its Western European counterparts. CRM devices are life-saving treatments for heart rhythm disorders including blackouts, syncope and sudden cardiac arrest. It is essential that patients get the right diagnosis and the most appropriate treatment, promptly.
Arrhythmia Alliance is calling on more to be done to ensure every arrhythmia patient receives equitable treatment, wherever they may live in the UK, and these concerns have been raised to the newly formed All-Party Parliamentary Group on Arrhythmias, so that this issue can be brought to the attention of the Health Minister. An All-Party Parliamentary Group is a way to raise awareness of an issue to parliamentarians, to educate them and to potentially raise an issue with Ministers. It is not a formal instrument of parliament but it is a way to engage with MPs who have a special interest in an issue or topic. For example, the APPG on Arrhythmias has members who have arrhythmias or have family members who have had an arrhythmia.
Sudden cardiac death is the number one killer in the UK, yet despite this we still see low implant of life-saving devices such as ICDs and pacemakers. This data must be used to improve and increase access to care to save more lives and to improve the quality of life for all arrhythmia patients.
Key findings of the audit9 included:
  • Pacemaker and defibrillator implant rates in the UK gradually increasing, but remain consistently low compared with other Western European countries
  • Great variation within the UK in the rates of all types of implants
  • The UK is one of the leading countries in Europe performing cardiac resynchronisation10
  • A significant number of UK hospitals continue to perform small numbers of pacemaker and defibrillator implants. For pacemakers, the number of such hospitals has halved in the last year, but for more complex devices, almost 50% of hospitals do not meet the recommended minimal standards.9
There is a need for commissioners and hospitals to tackle this issue on a planned, network basis, to establish standards and pathways of care, and ensure that patients receive the correct diagnosis and treatment wherever they may live.
The audit commissioned and managed by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patients Outcomes Programme (NCAPOP) covers 1 April 2015 to 31 March 2016. The audit is held by the National Institute for Cardiac Outcomes Research and led clinically by the British Heart Rhythm Society.
Commissioning through evaluation causes concern to cardiac specialists
Arrhythmia Alliance and many of the UK’s leading cardiac specialists are calling on NHS England to reconsider its ‘Commissioning through Evaluation’ process, which will leave hundreds of AF patients at serious risk of suffering a debilitating AF-related stroke. 
Left atrial appendage occlusion (LAAO) is the only treatment available to prevent an AF-related stroke in hundreds of patients in whom oral anticoagulant drugs are contraindicated. Many of these high-risk patients who are suitable for LAAO have suffered from previous stroke or transient ischaemic attack, and many have also suffered from intracranial haemorrhage or major bleeds at other sites.
Despite having a large body of evidence to support its use, including FDA approval and full reimbursement in a number of EU countries, and having been used successfully by a number of centres across the UK, NHS England decided in 2014 to put LAAO into the Commissioning through Evaluation (CtE) programme to carry out further assessment on its effectiveness, limiting funding to a total of 450 patients across ten specialist cardiac centres.
CtE is an evaluation process set up in 2014 to look at a number of technologies that were new to the NHS. The aim is to build an evidence base on a technology’s effectiveness through managed use in selected specialist centres. Once evaluated, the technology can then be accepted for use in the NHS and appropriate budget identified for its use, or if deemed to not be effective the technology would not be approved for NHS use.
The CtE programme is now in its ‘assessment phase’, which means no more funding is available for any patient until the evaluation has been reported and, if approved, the level of funding agreed. This very likely means no access to LAAO on the NHS for these very high-risk patients until the financial year commencing in April 2018.
Although CtE is a good concept, in principle, it is unacceptable for such high-risk patients with AF being unable to receive this often life-saving treatment. The Arrhythmia Alliance together with many UK Cardiac Specialists is urging NHS England to allow those centres already in the CtE process to continue to provide LAAO while the wider funding decisions are taken.
If each of the current ten centres is able to continue providing LAAO implants over the coming 12 months – as they were during the CtE process – this would reduce the number of inevitable AF-related strokes that many patients are likely to suffer during this time period.
The cost of an LAAO as used by NHS England for CtE was £7470 – however, the first-year cost per patient that suffers an AF-related stroke is calculated at well over £13,000.11 It makes sense both clinically and economically for NHS England to allow this specific sub-population of patients to receive this potentially life-saving, and life-improving technology, whilst the data evaluation is completed.
Campaign in action
The Global AF Awareness Week is run on an annual basis by the AF Association during which a ‘Know Your Pulse campaign’ is held in multiple settings where the public can receive a free manual pulse rhythm check. Settings have included GP surgeries, hospital reception areas, community Pharmacies and public places with a high footfall of the public, such as railway stations and shopping malls.
In 2016, this initiative was extended to involve the active collaboration of community pharmacists. The International Pharmacists for Anticoagulation Care Taskforce (iPACT) led the initiative in the pharmacy world. The collaboration was held during Global AF Aware Week in November 2016. This type of identification and diagnosis should lead to less false-positive patients being referred for confirmatory diagnosis using a 12-lead ECG and/or halter monitor, which would create savings for secondary care, and have benefits to patients.
The aims of the project were to raise awareness of AF and the importance of pulse rhythm checks to the public, engage community pharmacists in delivering manual pulse rhythm checks, and to assess the feasibility of pharmacists implementing checks in community pharmacy.
By the end of the project, over 1700 pulse checks were undertaken in 56 pharmacies across five countries, with over 70 irregular heart rhythms detected and referred to their clinical practitioner.
Call to action
Arrhythmia Alliance is a growing international advocacy organisation working with healthcare professionals with a focus or interest in arrhythmia. If you would like to know more or become involved in our work, please go to
1 The Lancet. Atrial fibrillation and stroke: unrecognised and undertreated. Lancet 2016;388(10046):731
3 Kearney M, Fay M, Fitzmaurice DA. Stroke prevention in atrial fibrillation: can we do better? Br J Gen Pract 2016;66(643):62–3.
4 Freedman B et al. Stroke prevention in atrial fibrillation. Lancet 2016;388:806–17.
5 Lip GY et al. Contemporary management of atrial fibrillation: what can clinical registries tell us about stroke prevention and current therapeutic approaches? J Am Heart Assoc 2014;3:e001179.
6 NHS Health Check – Best Practice Guidance. March 2016; PHE publications gateway number: 2015710. (accessed May 2017).
7 Freeman B et al. Screening for atrial fibrillation. A report of the AF-SCREEN International Collaboration. Circulation 2017;135:1851–67.… (accessed May 2017)
8 STARS patient information. (accessed May 2017).
9 National Audit of Cardiac Rhythm Management Devices April 2015 – March 2016.… (accessed May 2017).
10 National Institute for Health and Care Excellence. Guidance on implantable cardioverter defibrillators and cardiac resynchronisation therapy for arrhythmias and heart failure (TA314, update of TA95) (accessed May 2017).
11 NHS England. Commissioning through evaluation. (accessed May 2017).