News

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.

To celebrate International Nurses Day 2021, we asked Structural Heart Specialist Nurse at James Cook Hospital, Gemma McCalmont, to write a blog about why she decided to become a nurse, how she became a specialist TAVI nurse, and what advice she would give to anyone thinking of becoming a nurse.

73-year-old Nigel Masterton, from Edinburgh was diagnosed with a 'sticky valve' while on a trial assessing the impact of drugs on patients with aortic stenosis. After opting to have minimal invasive surgery, a complication during surgery left him in ITU. Despite this, and thanks to the extroaridnary efforts of the ITU staff, Nigel was back home with his wife and back walking the streets of Edinburgh.

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.