Angie Martin
Friday 19th April 2024
I was approached by Heart Valve Voice to participate in the NICE Guideline consultation after sharing my heart valve disease story. After my story was first published, I spoke with the team and was keen to get involved in helping support other patients living with valve disease and use my experience to give back, so when they contacted me to say I could help shape guidelines, I was more than happy to get involved and contribute.
Before the consultation, I worked with the team to understand what parts of my story would be valuable and how I could help support other patients during the consultation. Along with four other patient advocates, we became the NICE Ambassadors and received training on what to expect, how to get the most out of the experience, and to build my confidence to ensure I was comfortable and able to make the best impact.
Before it started, I was nervous. I can't lie about that. However, I also felt proud that I was asked to be involved in something so important and make a difference for future patients.
The team at Heart Valve Voice did a lot to settle my nerves, and once the consultation got going, I enjoyed it.
For me, I wanted to get across the impact heart valve disease treatment has on your mental health and to stress the importance of offering mental health support for all patients. I’ve lived with heart disease my entire life, and at various points, the strain on my mental health was severe, and often I felt quite alone and with no support. So for me to see a section in the guideline stressing the importance for all patients to have access to mental health support from detection to recovery was incredible.
Now, I just feel dead proud. I feel like I've helped to make a difference. I may only have played a small part, but my heart valve disease experience has made a difference. So that's something to be very proud of.
I would encourage anyone who has experience with heart valve disease to get involved with Heart Valve Voice and patient advocacy because it's incredibly rewarding. For me, it started as a simple post on a Facebook group after my surgery, and it's gone from there to contributing to a guideline that will shape future patient care. So you could get involved with all kinds of things that can make you feel proud and glad that you're helping a great charity. But you meet other patients too, and it's a great way to make some like-minded friends in the heart valve disease patient community at the same time.
Thank you to Heart Valve Voice for helping me to be a part of this, and for all the work they're doing to improve the detection, diagnosis and treatment of heart valve disease, as well as supporting patients and their families during their heart valve disease journey.