Wednesday 17th November 2021

Heart Valve Voice is delighted to see today’s publication of NICE’s guideline on heart valve disease presenting in adults. The publication of these guidelines marks is a key moment for Heart Valve Voice, our patient community and future valve disease patients.

When the long-awaited draft guidelines were published in January, we committed to a consultation with our patient community to find out what they wanted to see in the final guidelines and how we could use their experiences to improve the final guidelines. We spoke with over 100 patients and used all of that experience to write a response with a strong patient voice that was truly patient-led.

From that consultation, patients told us that they had three key objectives for the final guidelines:

1. Earlier detection, diagnosis and treatment

2. Better information, access to treatment and end to end care

3. More treatment

We believe these guidelines can deliver on all three of those objectives.

Through our consultation, we were able to secure changes to the draft guidelines, which will now result in:

  1. Shorter waits for echo for symptomatic patients when a murmur is heard
  2. Length of surveillance period for mild and moderate patients a shared decision between patient and clinician
  3. Better access to treatment options
  4. Lifestyle factors included in discussions on the decision of when and how to treat
  5. Mental health care is offered to all patients from diagnosis to recovery
  6. More robust information provided to all patients

We believe these final guidelines, coupled with the NHS’s Long Term Plan, provide a roadmap to a better future for valve disease care in the UK, and it was our patient community who empowered us to deliver those changes.

In their comments to our response, the NICE Committee recognised the value of our “patient-led” response. So on behalf of everyone associated with Heart Valve Voice, we would like to thank you all for your hard work in helping us secure those changes. In particular, we would like to thank our NICE Patient Ambassador Group of Angie Martin, Alison Banayoti, Livvy Gosney, Daniel Colgan and Phill Read for their commitment to representing our patient community. We would also like to thank patient engagement expert Neil Betteridge for helping us to design and deliver a robust and independent consultation process. 

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. We will now use the guidelines to continue to improve the patient pathway and affect the changes to help the 1.5 million people living with heart valve disease in the UK.

Heart Valve Voice is pleased to say that our voice was heard, and we were able to effect changes to the guidelines that will improve the detection, diagnosis and treatment of the condition.

Heart Valve Voice CEO Wil Woan, said “I want to start by saying thank you to every single patient who has contributed to Heart Valve Voice since its inception. These guidelines are the culmination of years of hard work. When the draft guidelines were released, we were optimistic, and I believe these final guidelines are a platform to improve the future for valve disease care in the UK.”