Friday 18th September 2020

As we approach the end of Heart Valve Disease Awareness Week 2020 I’m overwhelmed by the response we have had from our valve disease community and the public at large. 

After the success of our patient stories in TV, Radio and Newspaper media at the beginning of the week, our project moved towards a celebration of our valve disease community. Our educational video, which you can see here, consists of over 60 members of the Heart Valve Voice community, and I see no better way than putting public education of heart valve disease into the hands of that community. The video is powerful, informative and inspiring - and will be a brilliant resource for the charity for years to come. 

Thursday was the centrepiece of our Heart Valve Disease Awareness Week, with our first-ever virtual Patient Day #HVV2020. The day was an opportunity for those affected by heart valve disease to come together to learn, listen and talk. We wanted to use lived experience and clinical expertise to bring people together to inform and inspire one another. 

The whole day was for patients, and we wanted to deliver a programme that covered the entire treatment pathway and was educational and engaging - which we certainly did. We tried to involve the whole valve disease community, pre and post-treatment, and so needed to ensure that each session we put on was curated to inform, but also to inspire future advocacy. 

We also wanted patients to be involved, and nothing is more inspirational for patients waiting for treatment than the lived experience of others. So a huge thank you to Roger, Livvy, Ian, Michelle and Alison for participating in those vibrant discussions - Livvy’s description of her treatment transforming her from a “bright shiny new penny” was a particular highlight of mine. 

The day wouldn’t have been possible without the support of the clinical community, who do so much to enhance and promote our message. Seeing the leading clinicians in Europe come together and fit time into their busy schedules was inspiring - many were in their scrubs, waiting for clinics or in car parks in Southampton. It also illustrated where Heart Valve Voice is as a charity, and the respect we have earned in the clinical world. That respect and support can only be good for the charity, but most importantly, for anyone affected by heart valve disease. With their help, we can continue to improve the detection, diagnosis and treatment of valve disease in the UK. 

Awareness Week 2020 isn’t over though, and tomorrow we will be announcing the winners of the first phase of our National Photography Competition ‘Photos From The Heart”, and the week will culminate on Sunday with our biggest and best Mile Walk yet. Look out on social media for the winners of the photo competition, and get your walking boots on and tag us in a picture of where you’re doing your Mile Walk on Sunday. 

Thank you to everyone who has supported during Awareness Week, and a special thanks to the Heart Valve Voice team for their hard work and dedication to delivering this ambitious campaign.