Wil’s Blog – Reflecting on 2023 and Looking Forward to 2024
2023 was a fantastic year at Heart Valve Voice, with the charity going from strength to strength with our awareness work and supporting valve patients and their families. It is a testament to the hard work of the team and our patient advocates that despite the challenges we’ve faced throughout the year we’ve still been able to deliver award-winning campaigns and improve pathways for future patients. Our big push in 2023 from an awareness perspective was our SLOW campaign and the Your Heart Matters events. Our SLOW video, which you can see here, has been viewed over 600,000 on YouTube [...]
Wil’s Blog – Shared Decision Making
Last week, I was delighted to attend PCR London Valve 2023 with the Heart Valve Voice team and some of our incredible Patient Advocates. This year’s event was particularly special, as it saw the launch of Global Heart Hub’s Shared Decision Making Roadmap, a new resource which aims to improve patient experience for cardiovascular patients worldwide. PCR London Valve has always been a special conference for Heart Valve Voice. In 2019, we celebrated our 5th birthday there, and every time I attend, I’m reminded of all the advocates who came along that year to celebrate our achievements to that day, [...]
Wil’s Blog – Unite Summit
Last week, I had the pleasure of attending the Global Heart Hub Unite Summit in Barcelona. The Summit brought together patient organisations, patient advocates, clinicians, industry representatives and key opinion leaders from across the cardiovascular space - uniting to share ideas and strategies to deliver early detection and timely diagnosis of cardiovascular disease. Global Heart Hub is a coalition of cardiovascular patient organisations whose mission is to create and unite a global cardiovascular patient community to advocate for the best possible outcomes for people with heart disease. I had the privilege of chairing the Valve Council, where together with other [...]
Wil’s Blog – Evidence Roundtable
Last week, Heart Valve Voice held an Evidence Roundtable on HMS Belfast featuring patients, clinicians, industry representatives and key opinion leaders from the health and patient advocacy space. We were asked to do this by the All-Party Parliamentary Group for Heart Valve Disease, who wanted to understand the current challenges in the patient pathway, as well as the ideas and innovations that can unlock those barriers. The discussion was centred around three topics: Delivering Early Detection Improving Access to Treatment, and Increasing Treatment Capacity With clinical representatives from across the pathway, the first section saw Dr Yassir Javaid outline the [...]
Dr Clare Appleby: Gender Inequalities in Heart Valve Disease Treatment
Earlier this year, Clinical Lead for Intervention at Liverpool Heart and Chest Hospital, Dr Clare Appleby, gave a presentation to leading figures in the heart valve disease world about gender inequalities in heart valve disease treatment. Here, Dr Appleby discusses that presentation and looks at how to address inequalities in heart valve disease care. “Broadly speaking, there is clear evidence that TAVI provision in the UK is not at the level that it needs to be. UK population modelling data identified a shortfall in treatment for aortic stenosis (AS). The research estimated there were potentially around 70,000 patients with an [...]
Phill Read’s Westminster Health Forum Blog
Earlier this week, I was asked to represent Heart Valve Voice and its patient community at a Westminster Health Forum event on Next Steps for Diagnostics and Medical Devices in England. The event featured stakeholders from across the health space, with policymakers, industry professionals and clinical leaders coming together to share their thoughts and ideas. I was there as a patient to share my experience and talk more broadly about what I have learned from other patients as an advocate for Heart Valve Voice. I started my presentation by setting out the challenge of optimising treatment for valve disease. Research [...]
Making the most of cardiac rehab with Louise Bache
We recently met with Louise Bache, CEO of Heartbeat, a cardiac rehabilitation centre in the North-West. We asked Louise to write a piece for our community about the importance of good cardiac rehab and the lasting impact it can have on cardiac patients. Here is what she said: "Heartbeat is a well-established and experienced charity bringing support to many people throughout the North-West for over 40 years. Heartbeat understands the impact of cardiac, vascular, and pulmonary disease and the effect this has on individuals and their families. We want to see class members become the best they can be no [...]
Wil’s Blog – Early detection and timely diagnosis
We held the fifth stage of our Your Heart Matters tour last week. For this project, we have travelled across the United Kingdom promoting awareness of heart valve disease and offering stethoscope checks to those over the 50. So far, we have listened to well over a thousand hearts and found over one hundred previously undetected cardiac conditions. We know that early detection is key to better outcomes, and by the end of this year-long project, not only will we have raised awareness of heart valve disease, but we will have got hundreds of people onto a pathway that could [...]
IWD2022 – Livvy’s Heart Valve Disease Treatment Experience
This year, as part of International Women's Day 2022, we asked our patient advocate, Livvy Gosney, for her thoughts on the unique challenges women face while undergoing heart valve disease treatment. Here is what she said: "I take great pride in being a mum, and I’m good mum, but when my symptoms got bad I didn’t feel like I could be a good mum. That was really hard for me psychologically and also practically, because my husband and I had to find ways to make it work around the house while he was at work. That was not an easy [...]
Angie’s Blog on Patient Advocacy in the NICE Guideline Consultation
After being born with a hole in her heart, Angie Martin first had open heart surgery when she was a small girl. Fast forward 40 years and Angie's leaky valve began to deteriorate and needed urgent intervention. After being told she needed an operation, a pandemic stopped the world in its tracks. However, despite the pressures on the health service, and thanks to the team's brilliant work at Harefield, Angie received her life-saving treatment. Since recieiving her treatment, Angie has been a passionate adovcate for Heart Valve Voice and valve disease patients across the country. When we reached out to [...]