Wednesday 23rd September 2020

Heart Valve Disease Awareness Week 2020 is behind us, and what a fantastic week it was for Heart Valve Voice, Patient Organisations around the world, and anyone affected by heart valve disease. 

This year, Heart Valve Voice and our partners on Global Heart Hub's Valve Disease Council were emphasising the need for older people to ask for a stethoscope check, the first but most crucial step to timely diagnosis and treatment of heart valve disease. 

This week was about celebrating older people and emphasising their critical contributions to our families and our communities. Older people give back in so many ways, with many volunteering or providing care for loved ones, as well as contributing to the foundations of our communities and economy. This unseen army of carers need to be cherished, and awareness of the common, serious, but treatable condition will improve their lives and allow many of them to live longer with a better quality of life. 

In the UK, we started the week with an extensive media campaign centred on the experiences of our patient advocates. Through the airways, digital media and TV, we delivered our key messages to over 13 million people. Our message here was simple and clear - we need more awareness, more stethoscope checks, and we need to cherish our older community. We shouted loudly to every corner of the UK, and while the week is over, the message continues to resonate, with Sandra’s story in the Yorkshire Post today - which you can read here

The centrepiece of our week was our Patient Day #HVV2020, which brought the Heart Valve Voice community together to inform and inspire one another. To date, more than 6,000 people have viewed those sessions. It was inspiring to hear patient insight/from Olympic Athlete Roger Black, Ian Berry, Alison Banayoti and to also from the untreated Livvy Gosney. She so beautifully expressed her concerns but confidence in her treatment management now that she has learnt about the disease and become an integral part of the decision-making.

In addition to that,  I’m honoured when I think of the breath of specialists from across the treatment pathway that who shared their expertise. These are incredibly busy healthcare professionals, who made time between appointments, clinics and surgeries to support our cause - and we're incredibly grateful to them for doing so. Their contributions strengthen our message and enable us to reach and educate more and more people. 

Awareness Week also saw the release of our video ‘A Message From the Heart Valve Voice Community’, where our community came together to deliver our important message on valve disease - you can watch that video here. We also announced the winners of our National Photography Competition, held our biggest Mile Walk yet and saw an Early Day Motion tabled in the Scottish Parliament. Together with our team and our community, we achieved a huge amount, and we should be very proud of that.

Awareness Week is a pivotal time for our charity, and an awful lot of hard work goes into making it a success. COVID-19 presented a unique challenge for this year's Awareness Week. Still, together with our partners at the Global Heart Hub, we were able to deliver a programme that was impactful and educational. It is this kind of challenges that make the Global Heart Hub so important; through our collaborative efforts we can find the best path towards increased awareness of the signs and symptoms of heart valve disease, and together improve the detection, diagnosis and treatment of the condition. 

Our work doesn’t stop there though, and in the coming weeks, we will be launching an All-Party Parliamentary Group on heart valve disease - a group that will be a key mechanism in our capacity to affect policy change and ensure that the future of heart valve disease care in the UK is shaped by the experience of valve disease patients. We also have the next phase of our National Photography Competition ‘Photos From The Heart’. Here, winning photographers from phase 1 will be partnered with valve disease patients to capture and celebrate life after treatment - culminating in an exhibition of all their work in the Houses of Parliament. So watch out for more news about both of those.

Check out our playbook here to see how well we did during the week.