Angie’s Blog on Patient Advocacy in the NICE Guideline Consultation

Published On: 26 November 2021Categories: Blog, News

After being born with a hole in her heart, Angie Martin first had open heart surgery when she was a small girl. Fast forward 40 years and Angie’s leaky valve began to deteriorate and needed urgent intervention. After being told she needed an operation, a pandemic stopped the world in its tracks. However, despite the pressures on the health service, and thanks to the team’s brilliant work at Harefield, Angie received her life-saving treatment.

Since recieiving her treatment, Angie has been a passionate adovcate for Heart Valve Voice and valve disease patients across the country. When we reached out to ask our patient community for support with our NICE guidelines response she jumped at the chance. As well as supporting Heart Valve Voice in our response, Angie was invited to discuss her experiences with the All-Party Parliamentary Group for Heart Valve Disease.

Here’s what she said about that experience.

“Before the sessions, I was nervous!  Very nervous!  I always get anxious when talking with people I don’t know, and especially with it being a Parliamentary session and on a topic as important as this is – not just to me, but to many other people.  Afterwards, I was a bit concerned that I’d not covered everything I wanted to and perhaps left a few bits out, but I knew there was one part of it that meant a lot to me (Mental Health Support) and I definitely covered that bit. So a few days later I felt very proud that I’d done it and got the message across that I wanted to.

To know that I have played a part in helping Heart Valve Voice and the APPG improve the final guideline has made me very proud.  Proud that I could be a small part of something big that will change the way future patients go through their diagnoses, treatment and aftercare. I’m just really pleased to have been asked to do this, and that despite my nerves I did it and it’s made a real difference.

Most of all, to know that me talking about my experience of the mental health challenges associated with heart valve disease treatment has helped change the lives of future patients is incredible. For me, having access to a service where where patients are offered the psychological support for the challenges that you face after diagnosis, in the lead up to surgery, straight after and whilst recovering is extremely important.

I found social media groups which I joined a few weeks after my surgery, which were (and still are) extremely helpful, but having some proper professional mental health support in this particular field I feel is vitally important.  Even more so if you don’t have that much support in your personal life too. Some people have to deal with this pretty much alone and I know from experience that’s not easy at all, so to know that future patients will get better access to these services is brilliant news.”

Heart Valve Voice Executive Director, Wil Woan, said, “For me, the NICE consultation process was about putting patients at the heart of the final guideline, and Angie’s commitment to helping others has ensured that we achieved that. NICE commended our strong, “patient-led” response, and it was the passion of advocates like Angie that allowed us to do that. I was priveldged to witness the APPG sessions where Angie and the other advocates spoke, and hearing their deeply personal testimonies was very powerful. They spoke, and NICE have listened. For Angie, mental health support was crucial in the final guideline, and she should be very proud that her courage to open up about this has led to better mental health support for future patients.

Click here to read Angie’s Story

APPG Statement on NICE Guideline Publication
State of a Nation: Heart Valve Disease in Scotland Report

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