Is this Heart Failure’s Decade?
Heart Failure has been the classic “Cinderella Syndrome”, under invested, under resourced. The vast majority of the public don’t know what it is. Until the Pumping Marvellous Foundation, formed in 2013 as a registered charity, there has never been a successful orchestrated attempt to advocate for the patient. Naturally you would stand back and say, “Aren’t we doing this for the patient?” Is this Heart Failure’s Decade?
The phrase used by so many in the health system is “the patient voice”. I hear it so many times it keeps me up at night. To be honest I don’t really know what it means.
Is this Heart Failure’s Decade? The patient voice
For too long the “patient voice” has been a tick box for many stakeholders to demonstrate they are in “working in alignment” with the patient needs. Heart Failure has the potential to be the straw that broke the camel’s back.
Is this Heart Failure’s Decade? Scale of the challenge
Around 900,000 people in the UK will be living with heart failure. The condition is debilitating and has a significant physical, psychological, social impact on people lives, and that of their families. However, the impact is further widespread than the micro health economy. It impacts macro economies. Outcomes are poor. The survival rate is worse than prostate or breast cancer. It is suggested that 30-40% of people being diagnosed with it die in the first year; the statistics go on and on. How much evidence do you need: “we must do better.” Heart failure is one of the NHS’s big red flags.
There has been some good news. Only recently the National Heart Failure Audit, which looks at hospital admissions in the NHS, saw a drop in the mortality rate, not enough, but it’s in the right direction. It also seems that the new treatment pipeline is swollen with opportunity. The challenge is to get it through the regulatory bodies into the hands of the NHS quicker.
Amid all the roller coaster statistics I believe we have turned a corner. Stakeholders are collaborating, producing forward momentum. Personally, I don’t think we have reached our peak yet. Ensuring that the patient is not only at the centre of all we do, but is out there in a leadership role, collaborating and shaping what the future holds. So is this heart failure’s decade?
Instead of getting individual patient insights, healthcare professionals get this every day, I believe we should be talking to vast populations of patients, delivering insights back into researchers, academics, healthcare professionals, NICE, the Department of Health and companies. Why? Because your customers can help you make better decisions that affect them.
Talented energetic people
Coming from such a poor position things can only get better for those living with Heart Failure. There are bright, committed and talented people out there in heart failure land who are making a difference, I know many of them and the patients need to support them, as they need to support the patients, which they do daily. Heart failure has an opportunity to be shaped naturally by the many hundreds of thousands of patients insights informing people in the know what patients need. I also believe there is a movement, a ground swell of optimism from patients that needs “bottling” and distributing to those who make decisions. Those in the know need not think it’s a “genie” in the bottle, they need to believe in the value of those insights. The challenge of heart failure is bigger than those in the know. We not only need to deliver this bottle but we need to validate their understanding. This is the role of the patient group, this is what we do.
The Pumping Marvellous Foundation
The Pumping Marvellous Foundation not only works to support the many heart failure patients in the UK with patient information delivered to over 160 NHS heart failure teams in the UK, but also provides the socio-psychological support people need; it works with thousands of patients and family members to build marvellous insights through its social media channels, which are being driven to those in the know. Every time I get invited to speak at a conference where do I go to get my presentation content? The patient community of course, therefore my presentations reflect the needs of the many, not just one person’s opinion.
Founder and CEO of the Pumping Marvellous Foundation
Some useful links for you
Our “Marvellous Guides” – download them for useful information on how to live better with heart failure
Learn about about medicines for heart failure
See our YouTube channel PMTVLive
Join our patient community on Facebook