Manifesto to beat heart valve disease

Heart valve disease, a condition where the heart valves no longer work properly, affects more than 1.5 million people over the age of 65 in the UK and is expected to more than double by 2056.

Despite these alarming statistics, barely 3 per cent of the population are aware of aortic stenosis, according to a survey for Heart Valve Voice, the UK patient charity for heart valve disease. The survey, carried out this year, also shows that few people would recognise the symptoms, which include chest pains, fatigue and shortness of breath as anything other than signs of ageing.

Heart valve disease affects the flow of blood through the organ. Left untreated, it can lead to heart failure and ultimately death. The condition is often associated with ageing and estimates suggest that by the age of 75, the prevalence of heart valve disease is more than 13 per cent. It is not known to be linked to gender or lifestyle factors.

Many patients remain undiagnosed and outcomes are poor for patients whose condition is not treated. Studies show that people with serious aortic stenosis, one of the most common forms of heart valve disease, have only a 50 per cent chance of survival after two years.

Heart valve disease is a treatable condition if diagnosed early. The doctor needs to use a stethoscope to listen for the characteristic heart murmur or click-murmur, which is usually the first indication of a heart valve disorder. It is a simple step, yet 78 per cent of over-60s in the UK say their doctor rarely or never uses a stethoscope during regular health visits.

Wil Woan, chief executive of Heart Valve Voice, says: “A lack of public awareness of the signs and symptoms of heart valve disease, and the severity of the condition, contributes to under-diagnosis and under-treatment.

“Treating heart valve disease can return people to a good quality of life and normal life expectancy, so it is extremely important to educate and inform people about the condition and also highlight the urgent need for doctors to keep using their stethoscope, which is the key to diagnosis.”

Patients go from stethoscope check for detections to an echocardiography for diagnosis and then forward for treatment.

Heart Valve Voice is joining patient organisations across Europe in launching the European Heart Valve Disease Partnership Manifesto to spread the word about the need for the timely diagnosis and treatment for heart valve disease. The manifesto brings together new evidence and data on heart valve services across Europe, demonstrating the need for change. It also sets out recommendations that are crucial to the improvement of the diagnosis, treatment and care for patients with heart valve disease.

Representatives from each of the organisations, along with MEP Mairead McGuinness, met in Brussels to present the manifesto to MEPs, clinicians, industry representatives and patients. They discussed the issues surrounding heart valve disease and heard from patient Pat Khan about her experiences.

Ms Khan was 55, in 2006, when she had a problem with palpitations, which acted as a red flag and prompted her to see a GP for a stethoscope check. “My heart had been compensating for a defective mitral valve and was getting tired of the extra work,” she says. “This particular valve was ‘leaky’. I didn’t know this and the GP explained that it can be very difficult to detect.”

Ms Khan’s faulty valve was surgically repaired and she was discharged from hospital four days after the operation. Recovery was slow, but with perseverance she extended the length of her daily walks. “I was eager to run before I could walk during the prescribed post-surgery exercise regime and I saw this as an opportunity to be not only myself, but a better, fitter, version,” she says.

For more information please visit

Twitter @HeartValveVoice