Blogs

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. 

Earlier this year, a group of heart valve disease patients were asked by the All-Party Parliamentary Group for Heart Valve Disease to share their experiences of valve disease treatment with the group. During the evidence session, the patients were asked about detection and diagnosis of the condition, as well as access to treatment and the information they were provided with. Angie Martin was invited to share her experince, after being diagnosed with heart valve disease as a child and treated during the Covid outbreak

I decided to contact my MP after seeing Heart Valve Voice's #JustTreatUs campaign and thought it important to share my story and the stories of other valve disease patients. So that evening, I reached out to my local MP, Tim Loughton. I was really surprised to receive a reply in just a few hours, as I’m very aware of how busy MPs are. I was thrilled that he got back to me and wanted to help support the #JustTreatUs campaign.

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. 

As part of Mental Health Awareness Week 2021, we invited Mindfulness teacher, Katie Sheen to write about her experiences of good mental health when undergoing treatment, and she how teaches Mindfulness now to support people going through challenging treatments.

Last week I read with intrigue the Heart editorial about Professional Societies' role in developing guidelines and the importance of NICE being an independent, evidence-based organisation providing recommendations.

Phill Read, 43, was diagnosed with moderate mitral valve disease in February 2020. A Partnerships Manager for an over 60s property specialist and an avid cyclist, Phill and his wife Sacha have researched different treatment options and discussed them with his clinician to ensure they make the right decision for themselves, their children Cameron, 22, Yasmin, 18, Sadie, 8, and, of course, the family dog, Harry.

In recent weeks and months, we have spoken to patients whose heart valve disease treatment have been delayed due to COVID-19. Now, we have begun to publish stories that give the real-life experience of the impact of these delays on individuals.

A recent British Heart Foundation study has found that between March and October there were over 5000 excess deaths from heart problems in the UK. These numbers are of great concern, and it is essential that we limit the impact of the second wave of COVID-19 on the care of patients with heart valve disease. This means that: patients must know that they should go to the doctor if they are experiencing symptoms of breathlessness, dizziness or fatigue; primary care must refer patients in a timely manner; and secondary care must maximise treatment capacity.

Last month I had a discussion with Professor Simon Ray about how COVID-19 had led to digital innovation in patient pathways. Part of that discussion was around the dramatic reduction of in-person appointments in favour of virtual appointments. We spoke about what best practice in this new style of appointment looks like, and the importance of recreating the comfort and confidence patients get in-person services in this new style of appointment.