Nationwide Heart Failure Patient Alliance launched in Galway

Pictured at the event: Liz Killeen – Community Heart Failure Nurse Specialist, Mary O’Sullivan – Heart Failure Nurse Specialist Galway University Hospital, Professor Ken McDonald – Medical Director of the Heartbeat Trust, Ciara Keane – Project Manager of the Heartbeat Trust and Neil Johnson – Croí CEO.

First-of-its-kind Nationwide Heart Failure Patient Alliance (HFPA) officially launched in Galway by the Mayor of Galway, Frank Fahy & in Dublin by former GAA footballer Pat Spillane

  • Heart Failure charities Croí and the Heartbeat Trust, supported by Novartis, have partnered to develop the Heart Failure Patient Alliance (HFPA)
  • The HFPA is the first initiative of its kind to support the day-to-day management of Heart Failure for patients
  • It aims to enable discussion of patient needs and represent patient needs in development of healthcare policy
  • Heart Failure prevalence is set to increase in Ireland in the coming years1

The Heart Failure Patient Alliance (HFPA) was officially launched on Saturday in Galway by Frank Fahy, Mayor of Galway City, at an event 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 chronic condition. 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 provide education to patients and their carers; 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 and 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 Croí, the Galway-based heart and stroke charity. 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.

Neil Johnson, CEO, Croí said, “We 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.”

Prof Ken McDonald, medical 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.”

Frank Fahy, Mayor of Galway City, said, “It is fantastic to see the collaboration between Croí and the Heart Beat Trust, working together for the benefit of the Irish people in the fight against Heart Failure. They are working to inform and educate people on how best to live with Heart Failure. To date this has been treated on an individual patient basis, but it is important to include the patient and the carer in this process and to develop a patient voice which is a key aim of the alliance.”

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 proud to support the HFPA and bring awareness and attention to this chronic illness which impacts tens of thousands nationwide.”

For more information please visit https://www.croi.ie/ or http://heartbeat-trust.ie/

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.

References

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