Ireland’s first patient alliance in cardiovascular disease calls for patient experience to be at heart of national strategy

Newly formed alliance launched by former Health Minister Mary Harney  13 June 2023: Heart & Stroke Voice Ireland (HSVI), the newly launched patient and carer led alliance, addresses the unmet needs of patient centred care by championing patient engagement and involvement. The alliance, which operates under the auspices of Croí, heart and stroke charity, is calling for a ‘Patient First’ national cardiovascular disease (CVD) strategy, that is shaped by the lived experience of those living with CVD in Ireland.    The alliance, the first of its kind in Ireland, has outlined three initial key areas of focus to support those experiencing CVD, which claims the lives of 9,000 individuals each year in Ireland and significantly impacts countless others. This is despite an estimated 80% of premature CVD being preventable. The focus areas are:  
  • Early detection 
  • Timely diagnosis 
  • Equitable access to care 
  HSVI has voiced its willingness to engage with Government officials to collaboratively shape a framework of care that recognises the equal importance of prevention, early detection, timely treatment, and rehabilitation for those directly impacted by CVD. HSVI aims to ensure the patient voice is considered across research, education, and all aspects of CVD healthcare.    HSVI will provide a platform to develop the capacity and capability of the patient voice and to promote greater awareness and understanding of the need for equitable and timely access to quality treatment and care across the patient journey.    David Kelly, Chair of the Alliance said:We are delighted to be here today to celebrate the establishment of Heart and Stroke Voice Ireland, which marks a milestone in patient-centred care for cardiovascular disease in Ireland.     The alliance is committed to ensuring that the first-hand experiences of both patients and carers are central to the development of a comprehensive framework of care that can drive meaningful change in the lives of those caring for and living with cardiovascular disease in Ireland. We believe that by repositioning the patient and carer experience to the centre of a national framework we can make a significant contribution to achieving equity in CVD care.  Speaking at the launch, former Minister for Health and Children, Mary Harney said:Today is significant for patients living with cardiovascular disease in Ireland. We hope that policy makers will engage and consult with alliances such as Heart and Stroke Voice Ireland when developing any framework of care that accurately addresses the needs of both patients and caregivers, to ensure that the lived experience is at the centre of any policy changes.”    “Patient alliances for numerous diseases are common across Europe and play a vital role in providing a platform for the patient experience which informs policy making. The launch of Heart & Stroke Voice Ireland marks the first such patient alliance in the area of heart disease and stroke in Ireland and this is a very positive and welcome development.”   Ireland’s most recent national CVD strategy expired in 2019 and has yet to be replaced, meaning there is currently no overall national approach, despite having the lowest rate of detection of high blood pressure in Western Europe.  Issues at the heart of HSVI:   A report by the National Institute for Prevention and Cardiovascular Health (NIPC) and the National CVD Prevention Council outlined that waiting times for diagnostic services, such as echo and angiography, can exceed a year in some public hospitals.   The lack of a national strategy and waiting times reflect poorly when compared internationally. In the United Kingdom, the NHS Constitution outlines that patients have a ‘legal right to treatment within 18 weeks of referral and as part of this, pledges that patients should not be required to wait six weeks or more for a diagnostic test’. In Ireland, only private hospitals meet this benchmark for diagnosis.   A report published in February 2023 by the National Institute for Prevention and Cardiovascular Health and the National CVD Prevention Council, recommended a screening program for familial hypercholesterolaemia (FH), a genetic condition which causes dangerously high cholesterol levels from birth. FH affects around 1 in 200-250 people in Ireland however the majority of this goes undetected. Childhood FH screening programmes are commonplace throughout Europe.   Research published by Croí in 2022 found that 80% of public hospitals do not offer GPs direct access to echocardiograms – an essential diagnostic test for heart patients, significantly increasing wait times for those seeking echocardiograms through the public system.   For more information on Heart and Stroke Voice Ireland, please visit  


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