Wil's Blog

Wil's Blog

Friday 12th April 2024

As we mark 25 years of the National Institute for Health and Care Excellence (NICE), I wanted to take a moment to reflect on the impact of its Guideline for ‘Heart valve disease presenting in adults: investigation and management’ published in 2021. 

Heart Valve Voice’s journey to the final guideline 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. 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 was the beginning of our work to ensure patients were at the heart of the final guideline. 

Once NICE published their draft, we were invited to respond, which led to our consultation with 159 of our extraordinary advocates. 

From the results of the consultation, four things stood out. It was clear patients wanted:

  • Earlier detection
  • Better information and more patient choice
  • More access to a range of clinically appropriate treatment
  • Decisions on treatment to be a shared decision between patient and their Heart Team

Through our collective efforts, we secured changes to the draft guideline, resulting in significant improvements to the final guideline. These included a greater stress on stethoscope checks, shorter waits for echocardiograms for symptomatic patients, flexibility in surveillance periods for mild and moderate patients, enhanced access to all clinically appropriate treatment options, the inclusion of lifestyle factors in treatment discussions, provision of mental health care from diagnosis to recovery, and the delivery of more robust information to all patients.

Securing these guidelines was a commitment in our Five Year Plan from 2016, and we worked hard to ensure patients’ voices were heard in the consultation period. Now, we have a guideline with patients at the heart of it, and I’m proud we were able to be a part of the delivery of them. 

For patients, this guideline equips them with valuable knowledge about their condition, potential treatment options, and what to expect throughout their heart valve disease journey. This knowledge enables patients to actively engage in discussions with their heart team, ask informed questions, and participate in shared decision-making processes. I’ve heard the tangible benefits of the guideline from patients who have used them during their pathway to ensure they were listened to. It’s proven that patients who have good shared decision-making during their pathway have better outcomes, and I truly believe that this guideline, with patients at the heart of its design, will lead to better outcomes.