I decided to contact my MP after seeing Heart Valve Voice's #JustTreatUs campaign and thought it important to share my story and the stories of other valve disease patients. So that evening, I reached out to my local MP, Tim Loughton. I was really surprised to receive a reply in just a few hours, as I’m very aware of how busy MPs are. I was thrilled that he got back to me and wanted to help support the #JustTreatUs campaign. Next, I contacted Heart Valve Voice to let them know so that together we could decide on what to do [...]

The journey of our submission to NICE for the draft guidelines started in 2016 in the Churchill Rooms in Westminster. We were there to launch our Heart Healthy Future report. The then National Clinical Director for Heart Disease, Professor Huon Gray, attended the event. We had been lobbying for increased awareness of heart valve disease. That day, Professor Gray told me that he had instructed NICE to look at the guidelines for heart valve disease. For a charity that was only a couple of years old, it was an extraordinary moment and let off the starting pistol that led to [...]

As part of Mental Health Awareness Week 2021, we invited Mindfulness teacher, Katie Sheen to write about her experiences of good mental health when undergoing treatment, and she how teaches Mindfulness now to support people going through challenging treatments. Here is what she had to say: “I’ve been using mindfulness to support myself through the ups and downs of life since 2001, but it wasn’t until I had cancer in 2015 that I fully realised the impact that good mental health can have on patients going through challenging treatments. Suddenly I felt first hand how good mental health can provide [...]

Covid has placed a huge strain on our NHS and led to delays of thousands of heart valve disease treatments. With an estimated 44,000 cardiac procedures lost already, and an increasing backlog, a group of untreated heart valve disease patients have come together with a simple message - Just Treat Us. Delaying treatment leads to worse outcomes, but with timely treatment patients can get back to a good, even better, quality of life. This is Livvy's #JustTreatUs story: "I am a 47-year-old woman on the treatment path for a bicuspid aortic valve and an aortic aneurism. In the summer of last [...]

Last week I read with intrigue the Heart editorial about Professional Societies' role in developing guidelines and the importance of NICE being an independent, evidence-based organisation providing recommendations. From my Heart Valve Voice experience, I have seen the vital role Professional Societies play in improving outcomes and experiences. They have a proven track record of engaging a broad range of opinions and expertise to develop their recommendations. However, I recognise the importance of fixed evidence collection and welcome the debate on an industry-standard approach to developing guidelines - something which I've no doubt will only improve patient outcomes. Amongst the [...]

Phill Read, 43, was diagnosed with moderate mitral valve disease in February 2020. A Partnerships Manager for an over 60s property specialist and an avid cyclist, Phill and his wife Sacha have researched different treatment options and discussed them with his clinician to ensure they make the right decision for themselves, their children Cameron, 22, Yasmin, 18, Sadie, 8, and, of course, the family dog, Harry. "Back in October 2018, I collapsed at home, and an ambulance was called. After a few ECG's, it was put down to a one-off incident, and no further action was taken. Just over a [...]

After experiencing a heart emergency late night one, Joyce called an ambulance and was rushed to hospital where she was diagnosed with heart failure and severe mitral valve regurgitation. Joyce was rushed to Harefield Hospital, where Dr Rob Smith used an innovative treatment which clips the mitral valve, saving her life and getting her back to her beloved husband Jim. This is Joyce's story. “I first realised something was up when I was out walking with my husband, Jim. Suddenly, I’d say to Jim I’ve got to start making a move back because I can’t go any further. It was [...]

In recent weeks and months, we have spoken to patients whose heart valve disease treatment have been delayed due to COVID-19. Now, we have begun to publish stories that give the real-life experience of the impact of these delays on individuals. It is important to note that despite the pressure COVID-19 has placed on the NHS, emergency heart valve disease surgery has never stopped. Patients should feel confident in the NHS and know that if they require care, they will be cared for safely. No one should wait at home if they think they are experiencing a heart emergency. Our message remains [...]

Last month, I had a discussion with Professor Simon Ray about how COVID-19 had led to digital innovation in patient pathways. Part of that discussion was around the dramatic reduction of in-person appointments in favour of virtual appointments. We spoke about what best practice in this new style of appointment looks like, and the importance of recreating the comfort and confidence patients get in-person services in this new style of appointment. As a result of this discussion, Heart Valve Voice decided to make a Virtual Appointment Guide that prepares patients and ensures they’re getting the most out of this new style of [...]

Livvy Gosney is currently waiting for surgery for bicuspid valve disease. This is her story about life before treatment. I was diagnosed with heart valve disease in 2015. At the time, I thought I was diabetic, as I had gestational diabetes in 2012 and found myself feeling the same some three and a half years later. My Dr listened to my heart, heard a murmur and asked me to come back in 2 weeks. When I went back, the murmur was still there, so I was referred for an echocardiogram at Salisbury Hospital. The result came back as Bicuspid Valve [...]