Precis - Cardiac arrhythmia NSF

The Department of Health has launched a consultation on a new chapter of the National Service Framework (NSF) on Coronary Heart Disease. The new area will cover heart arrhythmias, which will form an important part of the heart agenda.

A cardiac arrhythmia covers a range of conditions from a transient loss of consciousness (T-LOC) and Reflex Anoxic Seizures, to Cardiomyopathy and Sudden Adult Death Syndrome (SADS).

ArrhythmiA Awareness Week (AAAW)

AAAW is a joint venture of three voluntary charities: STARS (Syncope Trust and Reflex Anoxic Seizures), SADS UK (Sudden Adult Death Syndrome), and CMA (Cardiomyopathy Association). Sir Roger Moore, STARS patron and pacemaker recipient, will launch the event.

Dr Boyle said:

"The strength of the existing NSF has been that it is based on the views of clinicians, patients and their families. Its aims and approaches have credibility with those who deliver it and those who benefit from it. The aim of this consultation paper is to invite initial comments from everyone with an interest in these issues to ensure that we can build a similar consensus for this new NSF chapter.

"The views received will be considered by a new expert group which is being established by the Department of Health to take forward the task of writing the new NSF chapter. Detailed membership of the group will be published shortly, but will include patients, relatives of patients, patient organisations, professional bodies, experts in the field, health service managers, and other Government departments with an interest. I look forward to working with everyone involved to drive real improvements for patients and their families."

Around 700,000 people in the UK suffer from arrhythmia -- a disturbance in the heart's rhythm -- where severity can range from a minor health inconvenience to a fatal rhythm disturbance. That's about 1 person in 85 with a heart that occasionally or consistently beats abnormally fast, abnormally slowly or irregularly.

Tragically, every week in the UK , up to eight apparently healthy children and young adults die due to undiagnosed heart problems. But the true extent of death due to arrhythmias may not be fully appreciated, as such deaths are difficult to confirm post-mortem.

Public Health Minister, Melanie Johnson, said:

"The Government has already shown its determination to tackle coronary heart disease through the publication of the National Service Framework (NSF). The prospect of a new NSF chapter setting out the standards and models of care for these conditions marks a major step forwards for cardiac patients in England ."

AAAW coordinator, Trudie Lobban, said:

"We welcome the inclusion of arrhythmias into the National Service Framework. Following the response we have had with this campaign we are joining forces with medical groups, charities and our industry allies to form the Arrhythmia Alliance .

"This means that once the NSF has been implemented, doctors and clinicians will receive training and education promptly to diagnose and treat those suffering with all forms of arrhythmias. This will help to improve the quality of life not just of the sufferer but their family as well and to prevent the many unnecessary deaths."

ArrhythmiA Awareness Week HQ can be contacted on +44 (0)1789 450 787. Email info@aaaw.org.uk. The Web site is www.aaaw.org.uk.

AAAW continues until Tuesday 18th May with events and other shows of support at about 60 hospitals throughout the UK . Members of the charities will meet, together with government officials and leading cardiologists, to discuss the aims of campaign.

'Heart Czar' Agrees To Address Cardiac Arrhythmias In National Service Framework For Coronary Heart Disease

The UK 's 'heart czar' is expected to announce today the Department of Health's plans for amending the National Service Framework for Coronary Heart Disease with targets for the diagnosis and treatment of cardiac arrhythmias

STARS (Syncope Trust and Reflex Anoxic Seizures), Sudden Arrhythmic Death

Syndrome (SADS) UK and The Cardiomyopathy Association (CMA) last year formed a partnership to promote better care for heart rhythm disorders through a national campaign. The British Cardiac Patients Association (BCPA) lent their support. Today, founders and members of the four charities will join Sir Roger Moore and other arrhythmia sufferers, dozens of leading cardiologists and scores of MPs to launch AAAW.

Cardiac arrhythmias contribute significantly to the 300,000 deaths each year in the UK that result from cardiovascular disease, the leading cause of death in most European countries. Up to 90,000 people in the UK die each year from sudden cardiac arrest, which often stems from heart rhythm disorders. Experts contend that the majority of these fatalities could have been avoided with improved screening and accurate diagnoses at an earlier stage.

Cardiac arrhythmias usually stem from abnormalities in, or disruptions to, the heart's electrical conduction system. Some cardiac arrhythmias result from congenital heart defects that run in families. Others arise from a variety of diseases that develop in individuals over a period of years. Others still result from sudden events such as heart attack. Cardiac arrhythmias vary widely in type and severity, as do methods for their diagnosis and treatment. Once diagnosed, however, they can usually be treated effectively with drugs, medical devices or surgery -- or a combination of these.

In the UK , many people suffer heart palpitations without seeing their GP or, when they do, find there is little help or information on offer. This in turn can lead to greater anxiety for the individual concerned, unsure if they are suffering something benign, or if there is indeed something to worry about.

The campaign encompasses all heart rhythm disorders and the conditions associated with them -- from atrial fibrillation and ventricular tachycardia to heart failure and cardiomyopathy, from syncope and bradycardia to long-QT syndrome and sudden cardiac arrest.

Each charity's area of focus is outlined below.

STARS. At least 30 per cent of people being treated for epilepsy in the UK actually suffer from a cardiac condition that leads to syncope, a transient loss of consciousness (T-LOC) that frequently resembles a seizure.

The misdiagnosis of epilepsy unnecessarily exposes approximately 120,000 children and adults in the UK to medications that cause serious side-effects - for example, damage to an unborn child. Three per cent of hospital A&E admissions are due to syncopal episodes; mainly due to injury sustained from the subsequent falls. Some people live with syncope for years, sometimes decades, without an accurate diagnosis. Although syncope is not life-threatening; it can greatly reduce quality of life. Young children with syncope can be excluded from everyday activities. In adults, syncope can limit employment opportunities and career choice. Early diagnosis and appropriate treatment can improve quality of life. Unfortunately, syncopal episodes usually occur at unpredictable and irregular intervals. Accurate diagnoses of syncope is possible, but depends on closer collaboration between cardiologists and neurologists -- including those in the paediatric and geriatric branches of these medical specialties.

SADS UK. Every week in the UK , up to 8 apparently healthy children and adults die prematurely due to undiagnosed heart problems that lead to a lethally fast heart rhythm. In England alone, among healthy people with no history of heart disease between the ages of 16 and 64, 11 out of every 100,000 die unexpectedly following sudden cardiac arrest. That equates to nearly 6,500 avoidable premature deaths in the UK every year. But the true extent of sudden arrhythmic death syndrome (SADS) may not be fully appreciated because the reason for these tragic losses of life is difficult to confirm post-mortem. In many of these cases, the presence of a condition called long-QT syndrome causes the deadly arrhythmia, but goes unnoticed by the patient and the family -- and therefore undiagnosed by a physician.

Long-QT syndrome affects about 1 in every 7,000 people and runs in families:

The siblings of children with long-QT syndrome have a 50 per cent chance of having the same condition. The most common symptom of long-QT syndrome is fainting during exercise or emotional excitement] Regardless of what underlying condition causes SADS, many of these deaths could be prevented through accurate diagnosis and appropriate treatment.

CMA. Cardiomyopathy means diseased heart muscle and takes several forms. Once diagnosed, all of them can be managed effectively. At least 1 of every 500 people in the UK has hypertrophic cardiomyopathy, which causes the heart muscle to grow abnormally thick. About 2 per cent of people with this type of the condition are prone to dangerous, sometimes lethal arrhythmias, such as ventricular fibrillation. In fact, hypertrophic cardiomyopathy is the leading cause of death from sudden cardiac arrest in people under age 30.

Another type of the condition -- arrhythmogenic right-ventricular cardiomyopathy, or ARVC -- is much less common (affecting about 1 in 10,000 British people), but also much less frequently diagnosed and much more likely to cause a lethally fast heart rhythm. Dilated cardiomyopathy, a third form of the condition, affects about 1 in 2500 people in the UK and causes the heart to become enlarged and pump less efficiently. It can lead to fluid build-up in the lungs, which therefore become congested, and result in a feeling of breathlessness: This is sometimes called left or congestive heart failure. Dilated cardiomyopathy commonly leads to an arrhythmia called atrial fibrillation, which in itself is not life-threatening but left untreated can result in life-threatening complications including blood clots and stroke.

Approximately 700,000 people in the UK have experienced a cardiac arrhythmia, but the National Service Framework for Coronary Heart Disease makes scant reference to heart rhythm disorders, focusing instead on revascularisation for clogged arteries. As a result, plumbing problems in British hearts get more attention than electrical problems. That imbalance in cardiology could change soon, however.

The 'heart czar' is expected to announce today an imminent change to the Government's guidance on caring for cardiac conditions. This afternoon during an event at the House of Commons, Dr Roger Boyle, National Director for Heart Disease, will share the Government's plans for improving care for cardiac arrhythmias, the medical term for heart rhythm disorders. Part of the official launch for ArrhythmiA Awareness Week (AAAW), Dr Boyle's speech will be delivered between 1:30 and 2:30 pm today to an audience of public officials, policy makers, consultant cardiologists and charity representatives (including Sir Roger Moore) numbering about 200 people.

The eminent cardiologist Prof John Camm of St George's -- an expert on cardiac arrhythmias of international renown -- is scheduled to address the clinical and medical aspects of heart rhythm disorders during the event as well.

(13/5/04)