The Heartbeat Trust and West of Ireland Heart and Stroke Charity, Croí, supported by Novartis, have partnered to develop the HFPA
The HFPA was officially launched in Dublin by former GAA footballer Pat Spillane
It 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
The Heart Failure Patient Alliance (HFPA) was officially launched last week in Dublin by former GAA footballer, Pat Spillane, at an event attended by more than 160 heart failure patients, their carers and clinicians. The HFPA is the first initiative of its kind and aims to build a patient forum to address the lack of heart failure resources for patients. It is spearheaded by charities the Heartbeat Trust in collaboration with Croí, and is supported by multinational pharmaceutical company, Novartis. A comprehensive educational pack for patients and carers was also launched at the meeting.
Heart failure is one of the most prevalent chronic illnesses in the western world, being the predominant condition of all chronic diseases. As a consequence of an ageing population heart failure is set to dramatically increase over the next number of years, 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.
The HFPA’s main goals are to facilitate discussion of patient needs in order to help manage their day-to-day existence with heart failure; to represent patient needs in developments of healthcare policy and initiatives in heart failure in 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 Professor Ken McDonald, Consultant Cardiologist, Medical Director, The Heartbeat Trust and the National Clinical Lead for Heart Failure; Karen Craddock, Physiotherapist, who delivered talks entitled ‘What is Heart Failure?’ and ‘Keeping active with Heart Failure’ respectively. Bronagh Travers, Heart Failure Specialist Nurse, The Heartbeat Trust, spoke on ‘Heart Failure signs, symptoms and self-care’.
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.
Prof Ken McDonald, Medical Director of the Heartbeat Trust, said, “Heart Failure is a chronic illness affecting more than 90,000 people in Ireland. 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.”
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 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.”
Dr Ambrose McLoughlin, Chairman, The Heartbeat Trust said, “It is extremely important that we mobilise the patient voice to improve the healthcare needs of people living with heart failure. Our hope and intention is to develop the HFPA into a nationwide organisation, potentially involving other cardiovascular organisations, in order to best ensure early diagnosis and to lessen the burden of Heart Failure on the patient and on the healthcare system.”
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 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 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.
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.
Heart Failure Educational Aids