The support that’s missing for many heart failure patients

Chris Macey

Director of Advocacy and Patient Support, Irish Heart Foundation

Heart failure is one of Ireland’s deadliest chronic conditions, with a five-year mortality rate higher than for most cancers.

An Irish Heart Foundation research participant shared: “It’s like your entire being is being sucked out of you. It’s like your soul is leaving you.” These words starkly illustrate the daily struggle of living with heart failure – a condition that can be highly disabling and yet almost invisible to other people.

Heart failure symptoms

For those living with it, heart failure can cause severe physical symptoms, including breathlessness, chronic fatigue and lack of mobility, along with anxiety, depression and post-traumatic stress disorder. However, with the right services and supports, heart failure patients can continue to live full and active lives.

Clinical services for patients with heart failure

Clinical services have improved dramatically in recent years. Yet, the sheer scale of heart failure – which affects over 100,000 people countrywide – means the practical, social, emotional and informational support needs of patients often go unmet.

To bridge this gap, the Irish Heart Foundation has developed a phone-based Heart Connect Service to support patients in their homes. Regular support calls help them cope with the psychological impact and reinforce education around symptom management. There is also access to counselling, our nurse-run support line, online peer support group and programmes ranging from online physical activity sessions to mindfulness.

Cardiac rehabilitation can reduce
heart patient deaths by at least 20%.

Ways to better support heart failure patients

More is needed, however, and the Irish Heart Foundation is lobbying for improvements in the following key areas:

• Almost half of heart failure patients experience depression, but just a handful of Irish hospitals provide access to psychological support, which should be available to all.

• The vast majority incur higher medical, household, travel and other costs while almost half of those we surveyed suffered a significant drop in income. They need help to avoid financial hardship, and working-age patients need support to return to work where possible.

• Cardiac rehabilitation can reduce heart patient deaths by at least 20%, but these services are severely under-resourced, with waiting lists of up to two years. Every patient should have access to high-quality and timely rehabilitation.

• Over a quarter of heart failure patients we surveyed feel abandoned after hospital discharge, while one third feel isolated. Every patient should have the right of access to support programmes, such as those provided by the Irish Heart Foundation.