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Heart Valve Voice Joins Forces with European Partners

29 September is World Heart Day, a day that brings attention to the heart and encourages everyone to focus on being heart healthy.

As the UK’s foremost charity for Heart Valve Disease, Heart Valve Voice acknowledges the importance of world heart day every year by pledging to continue in the challenge of raising awareness of valve disease, its symptoms and its treatment options. One of the ways in which we plan to do this over the next year is to broaden our scope and not only reach out to patients throughout the UK but also throughout Europe.

There is strength in numbers and Heart Valve Voice and their fellow valve disease patient charities across Europe want to ensure their patent’s voices are the strongest. Recently at the EuroPCR London Valves conference, one of the largest conferences featuring some of the world’s top cardiovascular physicians, representatives from Italy, the Netherlands and the UK announced their partnership and their plan to hold a European Heart Valve Disease Awareness Day in September 2018.

“The European Heart Valve Disease Awareness Day will bring together valve disease patient action groups from the UK, Spain, Italy, France, Holland and the Netherlands all with the aim of raising awareness across both the UK and Europe and to introduce an action plan that will help to make this happen called the Five A Action Plan.” said Wil Woan, Heart Valve Voice CEO. The action plan outlines the key areas that once achieved will help all of the parties involved to work toward improving diagnosis, treatment and management of valve disease.

The Five As are as follows:

Awareness: Each organisation feels strongly that awareness of heart valve disease, it’s symptoms, how it can be treated and the consequences of not receiving treatment in time is low in both the UK and Europe and raising it needs to be a priority. In a recent study across Europe (the European Heart Survey) only 7% of over 60s know what aortic stenosis, the most common form of heart valve disease, is and less than 3% of over 60s say that heart valve disease is the condition that gives them significant concern compared to other illnesses. The other concern is because the main symptoms of valve disease, such as breathlessness and dizziness, can be misconstrued as simply symptoms of getting older and over 60s rarely report them to their GP. This is a common thread across the UK and Europe with patients unaware of valve disease, ignoring their symptoms and not understanding that it exists and therefore not receiving the treatment they need to improve their quality of life.

Ask: The best way to detect heart valve disease is to listen to the heart. A stethoscope check can help to determine whether a patient who is experiencing valve disease symptoms has the characteristic murmur that can be a sign of aortic or mitral stenosis. Unfortunately, in the UK and other European countries like the Netherlands, stethoscope checks are no longer part of the regular check-up process for anyone, let alone over 60s. According to the European Heart Survey, 54% of over 60s across Europe claim they are rarely or never checked with a stethoscope and in the Netherlands, the figure is more sobering with only 11% claiming to have had a stethoscope check. As part of the European Heart Valve Disease Awareness Day the united patient groups will work to support research and patient-led projects that are crucial for educating patients and primary care professionals so they recognise the symptoms at an early stage.

Adapt: The unfortunate fact is that diagnosis and early valve disease detection is stubbornly low across parts of Europe. The other important factor in valve disease treatment is that significant barriers still remain to the ways in which patients are diagnosed and referred for treatment. The Adapt plan is to create an understanding across Europe and the UK for the need for early diagnosis and to call for regular stethoscope and Echocardiogram checks for older patients in order to adapt a time-saving and consistent care plan for all patients.

Access: There is quite a disparity in the number of patients that have access to treatment across the UK and Europe. The main reason for the lack of consistency of treatment access is due to a lack of funding especially when compared to the standards of funding for other serious diseases. The European partnership will allow a stronger voice in order to help educate policy-makers and healthcare professionals to create access to appropriate treatment options for patients all across Europe and the UK.

Action: As patient centred charities, all the European Heart Valve Disease Awareness Day partners strongly agree that the patient voice is the strongest voice and the goal is to also make it the loudest. By raising awareness and informing patients across the UK and Europe of the symptoms of valve disease and the life-changing treatment options available the hope is to enable patients to take action so they can actively work towards improving their quality of life through timely valve disease treatment.

“By bringing together our voices on European Heart Valve Disease Awareness Day, we hope that our message of increased awareness and more access to timely life-saving treatment for patients will ring loud and clear across Europe and the UK because ‘The more we listen the more lives we save!’” said Wil.

To learn more about the European Heart Valve Disease Awareness Day please visit the website↵

To learn more about Heart Valve Voice in the UK visit the website↵

 

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