Heart Valve Voice News

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.

Martyn O'Connor first had valve disease surgery to replace his aortic valve 11 years ago. After his valve began to deteriorate, urgent intervention was required, and thanks to the excellent team at Morriston Hospital, Swansea, he was able to receive his life-saving treatment, and was discharged in a matter of days.

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.

As part of International Women's Day 2021, we wanted to look at the unique challenges heart valve disease treatment presents women and how treated patients have dealt with those challenges. 

During the first national lockdown in 2020, Maisie Weir noticed herself getting breathless while walking in the Yorkshire hills with her friend. After being urged to see her doctor by her friend and her husband, Iain, Maisie was diagnosed with severe aortic valve stenosis and told she required urgent intervention. In January 2021, and despite the pressures COVID placed on the health service, Maisie received her life-saving treatment.

In 2020, during the first national lockdown, Jonathan Toms, 44, began to feel out of breath while out walking with his friend. Just a few months later, Jonathan was struggling to tie his shoe laces and, after a trip to A&E, was diagnosed with aortic stenosis. Thanks to the Mr Bahrami, the team at Royal Brompton and his wife, Julie, and two sons, Charlie and Alfie, Jonathan received his life saving valve disease treatment and is now on the road to recovery.

In 2019, 57-year-old Derrick Johns found out he had a heart murmur. After further tests, he was diagnosed with aortic stenosis with a bicuspid aortic valve. A keen cyclist, Derrick had experienced no symptoms. However, his valve disease began to deteriorate, and he required urgent intervention. Despite the pressure COVID-19 has placed on the health service and delays to his surgery, Derrick received has now recieved life-saving treatment and is now looking forward to the rest of his life.

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.

Heart Valve Voice are delighted to announce the formation of the All-Party Parliamentary Group on Heart Valve Disease, which Heart Valve Voice will be acting as secretariat for.

Heart valve disease is a serious cardiovascular condition which can be fatal if left untreated. Following on from our Heart Health Survey, Global Heart Hub’s Heart Valve Disease Patient Council has partnered with The Health Policy Partnership, an independent health policy research organisation, to develop a report aiming to raise stakeholder awareness of heart valve disease across Europe.