Heart Failure Patient Alliance

The Heart Failure Patient Alliance, an initiative intended to improve the healthcare needs of people living with heart failure in Ireland as well as their carers, was offically launched in Galway on the 16th April by Frank Fahy, Mayor of Galway City. The event was attended by more than 100 heart failure patients, their carers and clinicians. The HFPA is the first of its kind and aims to build a patient forum to address the dearth of heart failure resources nationwide. The initiative is spearheaded by Croí, the Heartbeat Trust and is supported by Novartis Ireland Ltd.

Heart failure is one of the most prevalent chronic illnesses in the western world, being the most common condition of all chronic diseases. As a consequence of an ageing population, heart failure is set to increase dramatically, leading to an increase in hospitalisations from heart failure of more than 50% over the next 25 years.1

The HFPA’s main goals are:

  • to facilitate discussion of patient needs in order to help manage their day-to-day living with heart failure 
  • to represent patient needs in the development of healthcare policy and heart failure initiatives throughout Ireland
  • to interact with international heart failure patient forums on areas of mutual interest and importance
  • to encourage development of local self-care groups to help patients and carers to manage more day-to-day issues in their illness

Speakers on the day included Dr Pat Nash, Consultant Cardiologist; Professor Ken McDonald, Consultant Cardiologist, National Clinical Lead for Heart Failure; and Neil Johnson, CEO of Croíty. A comprehensive education pack for patients and their carers was launched at the meeting.

Symptoms include severe breathlessness, fatigue from everyday activities including climbing stairs and walking to the shops; sudden weight gain, for example two to three kilograms in a couple of days; swollen ankles and fluid build-up in the lungs and around the body. Alarmingly approximately one in three people mistake heart failure symptoms as normal signs of ageing. 

Frank Fahy, Mayor of Galway City, said There is a lack of awareness surrounding the causes, signs and symptoms of heart failure among the general public. I’m delighted to support the Heart Failure Patient Alliance which will be a vital resource in raising awareness and understanding of this condition and in supporting those affected by it.”

Loretto Callaghan, Managing Director, Novartis Ireland said, “For many patients and their families in Ireland, being diagnosed with Heart Failure is frightening and upsetting. We know that patients who receive good heart failure education and support are empowered and informed enough to manage the condition effectively.

“Novartis is glad to support the HFPA and bring awareness and attention to this chronic illness which impacts tens of thousands nationwide.”


About the Heart Failure Patient Alliance
The HFPA is a patient forum to support the management of chronic illness which requires active patient involvement, both at the level of the individual patient as well as at group level, the latter to ensure that the views and needs of the patients and their families are heard and acted on. As one of the most prevalent chronic illnesses in the western world, management of heart failure has only addressed patient involvement on an individual case level, and has not to date developed a patient forum to enable discussion of the patients’ perspective. The Heart Failure Patient Alliance is designed to address this deficiency.

About Croí
Croí is a not-for-profit foundation established in 1985 as a limited company dedicated to fighting heart disease and stroke in the region. We are an independent organisation, totally funded through our own fundraising activities, voluntary contributions and philanthropic support.

Neil Johnson, CEO, Croí commenteWe are delighted to partner with the Heartbeat Trust to give a voice to those living with heart failure in Galway and throughout the West of Ireland. We know that the burden of heart failure could be significantly reduced through earlier diagnosis and better access to diagnostics.”

“Now that we are officially launched, the Heart Failure Patient Alliance will advocate for greater awareness of the signs and symptoms of heart failure as well as better care pathways so that people living with heart failure and their carers can enjoy a better quality of life.”

About the Heartbeat Trust
The Heartbeat Trust is a charity established in 2004 by Prof Ken McDonald and Dr Mark Ledwidge to support specialist clinical and research services in heart failure and heart failure prevention in Ireland. The Heartbeat Trust’s services are based in St Vincent’s Hospital, St Michael’s Hospital, Dun Laoghaire and The Conway Institute, UCD.

Prof Ken McDonald, Consultant Cardiologist and Clinical Director of The Heartbeat Trust, said; “Heart Failure is a chronic illness affecting more than 90,000 people in Ireland. Research shows that prevalence will increase which is why it is important now more than ever, that we plan for the future to improve care for heart failure patients and their carers. It is fundamentally important to include people living with heart failure and their carers in this process. As one of the most prevalent chronic illnesses in the western world, it is astounding that management of the disease is so lacking when it comes to provision of a platform to enable discussion from the patient’s perspective. 

“The HFPA will respond to the patient’s needs, and will both drive and support patient involvement at an individual level and at a group level. The Heartbeat Trust and Croí intend that the HFPA resolves the often poor management of this condition and improves resources for heart failure patients in communities throughout the country.”

References

  1. The Cost of Heart Failure in Ireland, Social, Economic and Health Implications. http://heartbeat-trust.ie/cost-of-heart-failure-report-launched/

This booklet will help you, your family and your caregivers to understand heart failure. It explains the causes of heart failure, how it is diagnosed, and the signs and symptoms.

Booklet one describes many of the common symptoms of heart failure. These include sudden weight gain, shortness of breath, cough, swollen ankles, loss of appetite and tiredness. This booklet will help you to manage your symptoms and understand your heart medication.


There are lots of things you can do to manage your symptoms. This booklet explains how healthy lifestyle choices can help you feel better and lead a fuller life.



There are lots of things you can do to manage your symptoms. This booklet explains how healthy lifestyle choices can help you feel better and lead a fuller life.

Croí

Croí is a registered Irish heart & stroke charity dedicated to the fight against heart disease and stroke, with a special focus on the West of Ireland. 

Our Mission is to 'Prevent Disease, Save Lives, Promote Recovery and Wellbeing'

The charity is totally funded through the proceeds of fundraising events, voluntary contributions and philanthropy.
Charity Number: CHY7500

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