Heart Valve Voice: speaking up for those with heart valve disease

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Heart Valve Voice is a charity that aims to transform the diagnosis, treatment and management of heart valve disease by raising awareness of its severity, to make sure that patients are diagnosed early and treated, to have the best chance of returning to normal life. The charity was established in 2013 and is made up of a collection of people with real experiences of heart valve disease, including patients and a multi-disciplinary group of experts in the field (cardiologists, cardiac surgeons, GPs).

Heart valve disease is a condition caused by either wear, disease or damage to one or more of the heart’s valves, affecting the flow of blood through the heart, which can cause symptoms such as breathlessness, chest pain, dizziness and fainting. The chances of developing heart valve disease increase with age, and approximately one million people over the age of 65 across the UK are affected by the disease, with this figure expected to rise to 19 million by 2050.

Part of Heart Valve Voice’s mission is to improve outcomes for patients with this life-threatening disease. The charity engages in a wide range of activities, including parliamentary events, check-up partnerships with sports clubs and general public surveys to highlight the need for increased awareness and understanding of heart valve disease (and its most common form, aortic stenosis). In May this year, Heart Valve Voice partnered with Everton in the Community (EitC), to offer free heart valve disease check-ups for the over 60s at Everton FC, Goodison Park. Trained healthcare professionals used a hand-held, digital stethoscope to listen to the heart to detect heart murmurs, often the first indication of a problem with the heart valves. These murmurs or heart sounds were recorded, and will be used alongside music to play at fixtures and corporate events – forming the heartbeat of Everton FC.

Additionally, earlier this month the charity held a heart check-up event at the House of Commons, attended by 42 MPs from constituencies across the UK. Many of the MPs subsequently pledged their support in raising awareness of the disease, and seeking to improve diagnosis and treatment in their local communities. Heart Valve Voice is engaged in other policy activities, calling for an update to GP guidelines to extend consultation times for the over 65s with the aim of improving diagnosis. A 2020 Vision Report highlighting key recommendations is being developed and will also be launched in Parliament later this year to parliamentarians, policy leaders and NHS decision-makers, striving for equity of access to valve replacement.

Chris Young, Consultant Cardiothoracic Surgeon, Guys and St Thomas’ Hospital, London and Chairman of Heart Valve Voice says: “The charity does such important work to represent heart valve disease patients across the whole spectrum, campaigning for improved awareness, diagnosis and treatment, and providing credible, independent and practical advice and information about the disease to patients and their families.”

For more information about the work that Heart Valve Voice does, please watch our video

For more information about heart valve disease, and to read patient stories, please visit www.heartvalvevoice.org.

Follow us on Twitter @heartvalvevoice and like our Facebook page.

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10th Aug 2016
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Good morning 3 years ago I had a quadruple heart by-pass,last year at my annual checkup it was found that my iota valve has closed a little more from when I had the op.The cardiologist consultant told me it was nothing to worry about yet as I am not getting chest pains or out of breath anyway I need new knee replacements what a fight I've had to get on the list the anesthetist didn't want me to have the op she told us i might not survive the op she frightened us so I went back to the cardiologist he said I was OK I asked him to write to her which he did anyway to cut a long a story short I'm back on the list nearly 9 month of arguments trying to get across that I am fit enough so hopefully i will get my op.

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