News

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.

We're delighted to announce that Henry Smith, MP for Crawley, has joined our 100,000 Conversations campaign to raise awareness of heart valve disease. As part of his conversation, Henry, sat down with the Chair of the All-Party Parliamentary Group for Heart Valve Disease, Steve McCabe MP, and Heart Valve Voice CEO, Wil Woan.

The first week of June is Volunteers' Week across the country, an annual celebration of the contribution millions of people make across the UK through volunteering. The past 18 months have placed an extraordinary strain on the sector, but I have been overwhelmed to see how the country has come together to support charities that have struggled financially while the demand for their services has increased significantly.

Today, Leyland-based Dave Swanton, 64, became the face of national heart charity, Heart Valve Voice’s, #JustGo campaign as he urged heart patients to put their heart health first or risk worse outcomes. With an estimated 100,000 fewer heart operations car- ried out in 2020, it is feared that patients are reporting to hospital sicker, having masked or hidden symptoms due to Covid.

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 the work we have done over the past four months. 

Heart Valve Voice carried out an independent and impartial patient consultation on the NICE Draft guideline on heart valve disease presenting in adults. The process was patient-led and inclusive, with both treated and non-treated patients invited to attend. We recognised that not all patients want to share their experiences openly, so we developed an online survey, alongside an interactive webinar, to allow more patients to participate.