To ADVOCATE
To be the voice of lived experience and ADVOCATE for the needs of heart and stroke patients/survivors and their carers by identifying and highlighting pressing issues and advocating for innovative, equitable and optimal solutions.
National Cardiovascular Health Strategy
Ireland does not have a cardiovascular health strategy. Gaps in cardiovascular care are leading to 9,000 deaths in Ireland every year. Croí recently endorsed an important report calling for the government to urgently develop a national cardiovascular health strategy for Ireland.
Stroke
Neurological Alliance of Ireland
Heart & Stroke Voice Ireland/ Croí are part of a group of over 30 non-profit organisations that campaigns and advocates for the rights of people in Ireland, living with a neurological condition. Over 800,000 Irish people are estimated to live with a neurological condition. According to the World Health Organisation, neurological conditions are now the leading cause of disability worldwide and include many common conditions such as stroke, epilepsy, multiple sclerosis, migraine, acquired brain injury and Parkinson’s disease as well as rare and genetic conditions.
Heart & Stroke Voice Ireland/ Croí are joining forces with the Neurological Alliance of Ireland, NAI Patients Deserve Better Campaign to highlight the fact that only 15% of patients have access to a community neuro-rehabilitation team. The National Strategy for Neuro-Rehabilitation states that 9 teams are required, but only 2 have been delivered. Everyone deserves access to a community neuro-rehabilitation team. Community neuro-rehabilitation teams are multi-disciplinary teams that provide vital care to support recovery and prevent disability for people with neurological conditions. Community specialist neuro-rehabilitation services are distinct from disability and other community residential/vocational, day services which do not have a rehabilitative focus.
Heart Valve Disease
An echocardiogram is an easy and quick test that can diagnose heart valve disease. However, unacceptably long waiting times in accessing this basic heart test exposes major inequalities in the Irish health system. Patients are waiting over a year for a test that takes just six weeks in the UK. Read more here
In October Croí welcomed measures in Budget 2023 to improve diagnostic services for heart valve patients. Read more here
ASCVD
A new worldwide movement, Invisible Nation, aimed at highlighting and reducing the large number of preventable deaths from the silent, invisible Atherosclerotic Cardiovascular Disease (ASCVD) kicked off in Ireland in October 2022. Read more here
The Global Heart Hub has unveiled a Global Cholesterol Action Plan to prioritize unhealthy cholesterol as a main public health issue. It calls for governments to take action immediately to target unhealthy cholesterol management and prevention to help reduce the burden of atherosclerotic cardiovascular disease on individuals, society and the healthcare system. Read more
Familial Hypercholesterolemia
Familial Hypercholesterolaemia (FH) is an inherited condition that leads to levels of cholesterol that are higher than that of the general population, sometimes double or even three or four times higher. FH is severely under-recognized, under-diagnosed and under-treated in Europe, leading to a significantly higher risk of premature cardiovascular diseases in those affected. FH stands for genetically inherited, very high cholesterol and affects between 1 in 250 -300 people regardless of their age, race, sex, or lifestyle, making it the most common inherited metabolic disorder and a non-modifiable cardiovascular disease risk factor in the world.
With a 50% chance of inheriting the condition, every individual with an FH-causing genetic variant also has at least one parent, and often siblings, with the same variant, presenting a cardiovascular health burden for affected families. In Europe, there are over 500,000 children and 2,000,000 adults affected by FH.
Women who have FH are affected by cardiovascular disease approximately 5–10 years later than men with the same condition and similar risk factors. But with early diagnosis and appropriate treatment the risk of early cardiovascular disease can be reduced considerably in both men and women.
Heart & Stroke Voice Ireland is an initiative of the heart & stroke charity Croí. Croí is a member of FH Europe and recently became a signatory of their Prague Declaration.
The Prague Declaration is a call to action for national and European/international policymakers and decision-makers, built on a considerable body of quality evidence to introduce paediatric screening across Europe. It is a political document, which is the result of the Czech EU Presidency meeting on FH Paediatric Screening (early detection of inherited high cholesterol) at the Czech Senate in Prague on September 6th 2022. The Prague event addressed the outstanding barriers to the systematic implementation of FH paediatric screening across Europe and the concrete actions needed to move forward. It also builds on the Technical Meeting of the Slovenian EU Presidency in October 2021. Read more here
In Ireland, Croí has contributed to a recent submission to the National Screening Advisory Committee seeking to have a national screening programme for FH in Ireland.
Heart Failure
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