Wednesday 4th August 2021
Earlier this year, a group of heart valve disease patients were asked by the All-Party Parliamentary Group for Heart Valve Disease to share their experiences of valve disease treatment with the group. During the evidence session, the patients were asked about detection and diagnosis of the condition, as well as access to treatment and the information they were provided with. Angie Martin was invited to share her experince, after being diagnosed with heart valve disease as a child and treated during the Covid outbreak
"I was approached by Heart Valve Voice to participate in the evidence sessions for the APPG report after telling my heart valve disease story to their community. 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 Wil contacted me, I was more than happy to get involved contribute.
Before the sessions, I was given a list of questions I would be asked by the APPG to prepare what I wanted to say. I spoke with the team at Heart Valve Voice about the questions, and we went through my answers together so that I felt comfortable with them and made sure I highlighted the right things to get the best impact.
Before the event, 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 other patients.
The team at Heart Valve Voice did a lot to settle my nerves, and once the session got going, I actually quite enjoyed it. I think I said most of what I wanted to say. The Chair, Steve McCabe, was so warm and engaging that he really helped settle all the patients' nerves and make sure we all had an opportunity to talk about our experiences.
Talking in parliament to MP's at something of this magnitude was incredible. The opportunity for me to put across my feelings and experiences in the knowledge that the final outcome will benefit patients of the future is something I'm immensely proud of. Seeing the report now, with my name on it, makes all those nervous moments worthwhile.
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 off as a simple post on a Facebook group after my surgery, and it's gone from there to contributing to a parliamentary report into heart valve disease diagnosis and 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 also 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 thank you to APPG for Heart Valve Disease for taking the time to listen to my experiences, for this report, and for all the work they're doing to improve the detection, diagnosis and treatment of heart valve disease."