In March, Healthwatchdog NICE (The National Institute for Health and Care Excellence) released their long-awaited draft guidelines for 'Heart valve disease presenting in adults: investigation and management.' The below are the methodology, results and evidence we used to support our response to the draft guidelines.
What we did
To ensure our response was patient-led, we worked with patient engagement expert, Neil Betteridge, and a group of Patient Ambassadors to agree on a strategy and plan for our response that was open and inclusive, and ensured we maximised engagement. You can read our methodology here.
What you said
Our response was patient-led and involved interactive webinars, interviews and an open survey. With varying levels of participation allowing patients to be involved to the level they were comfortable with, we were able to engage 159 patients in our consultation.
Together with 159 patients, we submitted a response that was driven by those with lived experience.
You can find a summary of our final submission here.
This narrative was approved by Heart Valve Voice Chariman, Chris Young, and our Patient Ambassadors, Phillip Read, Angie Martin, Livvy Gosney and Alison Banayoti
Gold Standard of Care
As part of our response, we referred to our Gold Standard of Care report, which maps out the optimal treatment pathway for heart valve disease patients.
Guidance on Primary Care
With recommendations on improvements to Primary Care at the heart of our response, we referenced our own Primary Care Guidance, which was led by clinicians and patients and maps what best practice in Primary Care should look like.
Just Treat Us
With Covid placing an extraordinary strain on the NHS and leading to the disruption of thousands of heart valve disease treatments, we spoke to patients who had a clear and simple message #JustTreatUs.
Health Innovation Report
Innovation will be central to the future of heart valve disease treatments. At both Primary and Secondary Care, improving access to innovation will lead to earlier detection, reduction in workforce pressure, more patient choice and better outcomes for patients.
Heart Health Survey
In 2020, we released the Heart Health Survey, which looked at awareness of heart valve disease in the UK and Europe.
I would like to thank everyone who contributed their time to our response to the draft guidelines. To the 159 patients who took time out of their day to tell us about their experiences of heart valve disease treatment, the experts who advised us on how to maximise impact in our response, the clinicians who gave us their clinical insights and expertise and our excellent staff who worked hard to create a truly patient-led response.
Heart Valve Voice CEO Wil Woan