Global Heart Hub COVID-19 Impact Survey

Wednesday 29th April 2020

As Chair of the Valve Council at Global Heart Hub, I thought it important for me to say a few words in response to their recent survey of patients and patient organisations.

Global Heart Hub is an alliance of heart patient organisations from across the world, formed to unite patient organisations under an umbrella with the mission to raise awareness of heart disease and the challenges it presents in everyday life.

Their survey, available here, looks at the impact of COVID-19 on patients and patient organisations in two main areas.

• 1. The impact on organisations and their capacity to cope with an increase in demand for their services
• 2. The impact and reaction of heart disease patients to the COVID-19 outbreak

It is without question that COVID-19 has had a severe effect on patient organisations and the voluntary sector more broadly. In the UK, the National Council for Voluntary Organisations estimate that a minimum of 4.3 billion has lost in income because of COVID-19, this reduction in income has coincided with an increase in demand, but I want to assure patients despite these pressures Heart Valve Voice continues to work to support them personally as well as engaging with policy makers to ensure that their voices are represented in any policy discussions.

The survey largely looks at how patients have responded to the COVID-19, highlighting the concerning trend in reduction of cardiac admissions to hospitals. I looked at Public Health England’s statistics in my most recent blog, and similarly, the Global Heart Hub Survey confirms the biggest patient concerns to be:

• 1. Being infected with the virus
• 2. Fear of going to the hospital
• 3. Risk of virus infection post-procedure (especially valves)

This mirrors what we see across our patient community and from discussions with our clinicians. In a recent discussion I had with Professor of Interventional Cardiology and Consultant Cardiologist of Kings College Hospital, Philip MacCarthy he said “from across the clinical pathway I am hearing clinicians concerned by these reductions. Many I speak to suggest it is a combination of fear of contracting the virus and concern of overburdening the NHS. It is essential that we get the message to patients that the NHS is still working for them, all the necessary precautions are in place to contain the spread and that now more than ever they should be closely monitoring their symptoms.”

At Heart Valve Voice we have responded to this in two ways.

Firstly, we are telling every patient awaiting treatment for heart valve disease to use our Symptom Tracker to monitor their symptoms daily. Doing this empowers you with a record of our how your symptoms are developing, enables you to respond appropriately and gives your clinician a vital resource for assessing your health. If your symptoms deteriorate, you should contact your clinician immediately.

Secondly, we are using clinicians across our digital platform to provide support and transparency for valve disease patients. We have clinicians from across the pathway answering frequently asked questions, but also, crucially, providing insight into their working practices at the moment. These insights are to give comfort that all necessary precautions are in place and the confidence that the health system continues to work for all of us every day. This transparency is essential in ensuring patients respond appropriately to any changes in their health.

This survey is important as it points towards an emerging culture of response to the crisis. It is critical that all patient organisations ensure patients have confidence in their health system and comfort that their treatment is still important, by doing this we can limit the risks of secondary deaths and ensure our patients are treated timely, effectively and safely.