Thursday 20th May 2021
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.
Having waited for so long for this opportunity to put patients at the heart of guidelines for heart valve disease, we started the process by engaging Patient Engagement Expert Neil Betteridge and four Patient Ambassadors, Livvy, Angie, Alison and Phill. Together with the Heart Valve Voice team, we put together a plan to get the most out of our community. That included an interactive webinar, where patients could share their experiences, talk to one another, and respond to a selection of questions in an interactive way. We also interviewed patients to understand what they wanted and get more details on the challenges they faced in their pathway. Finally, to ensure no patient who wanted to contribute was left behind, we did a short online survey, which allowed patients to contribute anonymously. This methodology was shaped by patients, driven by patients, and put the lived experience of patients at the heart of our response.
This methodology was crucial because we wanted to ensure a high level of patient engagement in our response. We saw from the Abdominal Aortic Aneurysm NICE Guideline that a strong patient voice in response could affect real change. When we first read the draft guideline, we saw it as a good starting point. But that there was space to do more, be more ambitious and use the guideline as a mechanism to put pressure on policymakers to address issues in the diagnosis and treatment of valve disease. And what stood out in the consultation was that patients wanted to be a part of the process and were passionate about using their experience to affect change. There was such appetite from them to improve the future of valve disease care and create a legacy from their heart valve disease journey.
The results of the consultation were illuminating and gave us a strong patient voice in our response. During our consultation, four things stood out. Patients want:
- Earlier detection with more opportunities to detect in Primary Care
- Better information and more patient choice
- More access to a range of clinically appropriate treatment
- Decisions on treatment to be a shared decision between the patient and their Heart Team
What was clear from the consultation was the considerable variation in peoples experiences. Hence, we wanted the guidelines to be more robust, clearer and go further to ensure they can be a mechanism to reduce regional variation. With strong guidelines for heart valve disease, we can deliver earlier detection, better pathways and more treatment.
This level of patient engagement will be invaluable to both the NICE committee and Heart Valve Voice. As a charity, I believe we have a strong patient voice, evidenced by the impact our campaigns have and the changes we can generate. However, discussing the entire pathway, good and bad, with 159 patients is invaluable. At a time when the NHS has been met with a huge challenge and has had to learn and adapt to meet that challenge, that insight is more important than ever. For NICE seeing the strength of the patient voice in our response will give them a real insight into the pathway from a patent perspective, and I think they need to listen to that. Meaningful patient engagement is a powerful thing, and Heart Valve Voice, NICE and policymakers can learn a lot from patients. The more we listen to patients, and the more we learn from patients, the better we understand their needs - and the better we are at delivering change that improves the care for future patients.
Click here to read a summary of our response and the results of our survey