Wil’s Blog on the APPG Report into Valve Disease Care in the UK

Since the inception of Heart Valve Voice, it has always been our intention to be a charity that promotes awareness of the condition, give a voice to those who have experienced it and improve the structures that determine the quality of care that patients in the UK receive. We have worked with policymakers throughout the past six years. Still, forming an All-Party Parliamentary Group for Heart Valve Disease was a watershed moment for heart valve disease patients in the UK. The report they have now published is a platform for policy change. 

The APPG, chaired by heart valve disease patient Steve McCabe MP, is a cross-party group of MPs and Peers who give heart valve disease patients a voice in Parliament and the House of Lords. Since its inception in 2020, it has spoken in both chambers on various subjects relating to valve disease. It has asked tough questions of senior policymakers regarding valve disease on matters from increasing the use of stethoscope checks, backlogs caused by Covid, cardiac networks, national awareness campaigns and improved access to treatment.

This report is the sum of a year of hard work from the APPG. I am proud to have been invited to give evidence as a patient organisation representative, but even more proud to see heart valve disease patients at the heart of the report. Heart Valve Voice is all about giving patients a voice. To have been present when five heart valve disease patients detailed their powerful and, at times, moving testimony to the group was an honour.

The report itself centres on four key areas:

• i) detection, assessment and diagnosis;
• ii) treatment, and how it can be improved;
• iii) patient surveillance; and
• iv) the information and support that patients receive.

The report’s findings highlight issues faced by heart valve disease patients around these areas. Still, crucially the report is solution-focused, and I welcome the list of recommendationsin it, which you can read here. 

For Heart Valve Voice, we wanted the report to deliver engaged patient-public involvement (PPI) to ensure that this report was genuinely patient-centred. Livvy, Phill, Angie, Alison and Dan delivered that for the APPG. We’re often told that organisations value patient-public involvement, but we recognise the challenges in delivering on it. Heart Valve Voice has been able to work alongside the APPG to provide real PPI, which shines through in the quality of the results produced.

Now for Heart Valve Voice, it is about looking at these recommendations and mapping our future work to deliver on all of them. We will work with patients, policymakers, clinicians and industry to ensure that we are all working towards a common goal. Crucially, that common goal has been dictated by the experience of past patients.

As Secretariat for the APPG, Heart Valve Voice has played a key role in driving this piece of work forward, and I want to give a special thanks to Huon, Callum, Elske, Martina, Emma, Neil, Sarah, Robbie and Matt for their hard work in delivering this important report. Without their skill and determination, it would not have been possible.