Background information on #MyHeartStory campaign

The following information contains background information on some of the topics around our #MyHeartStory campaign.

About sudden cardiac death

Sudden cardiac death is defined as “an unexpected natural death from a cardiac cause within a short time period, generally under 1 hour from the onset of symptoms, in a person without any prior condition that would appear fatal”. There are many different causes of sudden cardiac death, including cardiomyopathy.

Sudden cardiac death can occur when someone has a cardiac arrest and this is not treated. In a cardiac arrest, the heart stops pumping suddenly and so does not pump blood around the body. This happens due to dangerous arrhythmias (abnormal heartbeats), such as ventricular fibrillation.

A cardiac arrest causes the person to collapse and stop eventually breathing. The person will either need CPR (cardiopulmonary resuscitation) until paramedics arrive, or for a shock to be given by an external defibrillators to establish a normal heart rhythm. 

People at risk of a cardiac arrest, for example some people with cardiomyopathy who have dangerous arrhythmias (abnormal heartbeats)  such as ventricular fibrillation, may have an ICDs fitted. ICDs – or implantable cardioverter defibrillator – is a form of treatment used to monitor the heart rhythm and give an electric shock to the heart if it detects a life-threatening arrhythmia. An ICD is implanted under the skin on the left upper chest wall, and connected to the heart via wires fed into the ventricles. The need for an ICD is always considered on a case-by-case basis, and depends on the individual’s situation and condition.

A cardiac arrest is different from a heart attack. A heart attack happens when the heart’s own supply of blood from a coronary artery is stopped due to a blockage (such as due to a narrowing of the artery or a blood clot, caused by coronary heart disease). The heart becomes starved of blood and oxygen, affecting the functioning of the heart muscle, and causing that area of muscle to die. Although heart attacks can be fatal, most are treatable by breaking down the blood clot with drugs and by widening the narrowed or blocked artery.

It may help to think of a cardiac arrest as a problem with the hearts ‘electrics’ (the electrical signalling that controls the heart beat) and a heart attack as a problem with the heart’s ‘plumbing’ (the vessels that supply the heart with blood).

Around 180,000 to 250,000 people die of sudden cardiac death a year worldwide, with around 15% of these deaths are due to cardiomyopathy. Screening of the general public for the for risk of sudden cardiac death is not recommended. 

Our position on cardiac screening

We believe that the best way to reduce the number of deaths and limit the distress caused by
cardiomyopathy is through educating clinicians and the general public, working with researchers,
providing support and fighting for better access to quality treatment.

We take a reasoned and scientific approach when deciding how to best use our resources and what
actions we should persuade the government and health care providers to take. This way we can be
confident that we make the best use of the donations we receive and that we can present an
evidenced and compelling case for the best use of the NHS’s resources.

We know the pain and anger that the death of a loved one causes. We understand why cardiac
deaths, particularly in young people, heighten the desire for the introduction of a national untargeted
cardiovascular screening programme for all young people. However the evidence shows that such
an untargeted approach would not work. This is why we, along with the independent UK National
Screening Committee, do not support the introduction of such an initiative.

We do believe that the issue should continue to be reviewed, but we are determined that this debate
should not detract from the greater and immediate obligation of national and regional governments
to improve access to specialised medical expertise that will save lives through focused treatment and
targeted genetic testing.

If you would like to speak to somebody about screening for cardiomyopathy please contact us
on 01494 791224.

Download a copy of our position statement


© Cardiomyopathy UK. October 2017