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Heart Failure Patient Council

The first patient council to be established by the Global Heart Hub was the Heart Failure Patient Council. This council is an alliance of patient organisations from across the globe, working with heart failure patients and their carers. A priority of the council is to raise awareness of heart failure, promote public and healthcare education and advocate for policy action in an insufficiently recognised and increasingly burdensome disease area.

Heart failure is a serious chronic condition where the heart cannot pump enough blood to support the needs of other organs in the body. The most common causes of heart failure include coronary heart disease, myocardial infarction (heart attack), congenital heart defects, or damaged heart valves. Red flag symptoms include breathlessness, fatigue and swollen limbs. It is estimated that 1 in 5 people are at risk of heart failure and it is the most frequent cause of hospitalisation in people over the age of 65.

The Patient Council is united in the view that heart failure is poorly recognised and not well understood by both the general public and healthcare professionals. There is global consensus that:

  • The early signs and symptoms of heart failure are often dismissed as normal ageing and thus overlooked as early presentation of the disease.

  • There are significant gaps in access to diagnostics in primary care, which result in inequities and delays in diagnosis. Heart failure diagnoses are frequently made late and often the patient has developed acute disease.

  • There is considerable variation and inequity of access to international best practice and specialist care, including access to heart failure nurse specialists (both in hospital and in the community).

  • Failure to recognise and treat heart failure appropriately is contributing to high hospital admission and re-admission rates, with  consequential economic burden on healthcare systems and huge impact on patients and carers.

Achievements to date:

  • Global mapping of heart failure patient organisations.

  • Hosting of annual patient organisation capacity building academies. The first academy was held in Galway, Ireland in 2015.

  • Collaboration with the Health Failure Policy Network, which is an independent multidisciplinary platform established by The Health Policy Partnership, resulting in the development and launch of:

    • The European Heart Failure Policy Network Toolkit (September 2015).
    • Early Diagnosis patient education booklet (December 2015).
    • European written declaration on heart failure campaign (December 2015).
    • Heart Failure Country Barometers – Europe (April 2018).
    • Handbook of Multidisciplinary and Integrated Heart Failure Care (September 2018).

  • Activation and execution of the Acting on Heart Failure European cities awareness campaign (May 2018).

  • Activation and execution of the Acting on Heart Failure global Red Flag awareness campaign and European election advocacy campaigns (May 2019).

  • Responded to the COVID-19 pandemic by developing information resources for use by patient organisations.

  • Participated in a Global ‘Patient to Patient’ #JustGo campaign, encouraging those with cardiac symptoms to seek help despite fears of COVID-19.

  • Activated and delivered a Global Heart Failure awareness campaign (October 2020).

Currently, affiliates of the Heart Failure Patient Council include:

ABRAF
American University of Beirut Medical Centre (AUBMC)
Sirdies Lithuania
SzivSN Hungary

Aistė Štaraitė

Chair, Heart Failure Patient Council

aiste@globalhearthub.org