A Conference on heart failure organised by Croi Galway, in association with the international Heart Hub was opened by Marian Harkin MEP at the Croi Headquarters in Galway, where she spoke about the role of family carers in supporting those with heart failure and how advocacy groups for patient organisations can influence European legislation and access EU funding.
Addressing the Conference, Marian Harkin spoke about the hugely important work of Croi in supporting and advocating for those with cardiovascular disease in the west of Ireland. ‘Indeed, Croi is unique in Ireland and probably in Europe, in that they are a voluntary organisation which receives no Government funding. All of their very valuable services to patients with cardio vascular disease and their families, are supported by fundraising across the west of Ireland. In fact, we are lucky to have such a patient advocacy and support group as Croi in the west of Ireland’, Marian Harkin commented.
The conference, which attracted participants from 15 different countries, including the US, Argentina, Canada Brazil, Australia, Egypt, Lebanon, as well as a number of European Countries, focussed on the issue of heart failure. “Timely diagnosis and adequate ongoing nurse specialist support is crucial for people who live with the chronic condition of heart failure. Many people think that heart failure is simply about getting older, but in fact it’s not, it’s a medically recognised condition and needs to be managed as such in order to ensure better outcomes for patients. Most of the carers of those with heart failure are family carers and they need support in helping their loved ones live with this condition”, Marian Harkin said.
As Chair of the Carers Interest Group and a member of the MEP Heart Group in the European Parliament, Marian Harkin outlined how these groups facilitate patient organisations to influence EU policy, EU standards and EU legislation. “A really good example of this, is how the Carers Interest Group in the Parliament, which I Chair, has been a major player in helping to deliver a Directive on carers leave”, she said.
Marian Harkin concluded “I propose to work with Croi, and other organisations at EU level to try to raise awareness of, and gain support for, those who suffer from cardio vascular disease. The draft legislation, which is in the European Parliament right now, proposes five days leave per annum for carers who may need to care for their loved ones. While five days is certainly not enough, it is a start and it will put carers leave on the same basis as maternity leave, paternity leave and family leave”.