“How would you feel if nobody knew what the impact of your diagnosis would be and how it would change your life?”
“Life gets rather lonely when you feel people don’t understand”
Since I foundered the Pumping Marvellous Foundation in 2010 we’ve tried to move the conversation on from where patients are not supported with the life challenges heart failure brings. This is different than the clinical challenges but is symbiotic. When your time comes to deal with a “major incident” in your life remember this; it’s not just about the diagnosis it’s how you go on and deal with it as your condition lives with you at home, not how your condition defines you. Having a positive mind set can amplify your opportunities to getting to a “new you”.
Getting a diagnosis is just the start. In fact, it can be a relief in a perverse way. This is the time that people need support. Receiving a diagnosis of heart failure is bad enough but what does this mean? Where do I go next? What is there to help me? How do I get to new normal? This is why I started the Pumping Marvellous Foundation, to untangle the spaghetti for the patient.
I was at a meeting in Brussels about 4 years ago where the name of the charity was a talking point with the usual quips about “Pumping” and that the attendees had never seen a patient group in heart failure with any scale. I got the distinct feeling that they felt we were not going to be around for long. Ladies and gentlemen we are still here.
The Pumping Marvellous Foundation delivers two themes. Firstly, we believe we can have an impact on people living with heart failure to help them live their life better. Secondly, we are their advocates ensuring their opinions and needs are represented at the decision-making stage. We are highly engaged within our patient community. Their views, opinions and needs create our strategy and ultimately our activities. Why are our patients interested in research, sorry researchers it’s not what you’ve done it’s why and how it can help them? We are interested in delivering change at the coalface.
We have become, not by desire but by need a global reference point for patient insights. We regularly communicate with many organisations across the stakeholder map delivering insights into systems to drive change. Organisations include patient groups across the globe, Heart Failure Association of the European Society of Cardiology, NHS England, NICE, Scottish Government, Academia, Trialists, Medical Technology Companies, Pharmaceuticals and TECH companies in fact anybody who can help us to ensure patients get a better deal. Our role is a moving feast as we are those “uberising pioneers”, disruptors of the system but great at building colourful looking jigsaws. We also supply over 200 heart failure teams across the UK with patient authored guides for living with heart failure better. Truly patient driven.
Medical technology has a big part to play in heart failure. Medical technology companies need to play out with the innovators in the current consumer space. Consumer driven industries are rabid about patient insights, it’s what gives them their “MOJO”. Medical technology in heart failure is a conduit to ensure that we harvest the medical interpretation and map it to the quality of life interpretation. Whenever have you seen a pill feedback to you? Ok I know we do tests and investigations but imagine being able to see 12 months of a person’s specific medical history and map that to their quality of life. Fascinating… you don’t get that in a bottle. “Engineering is about Imagineering”
Coming back to the statement “This is Heart Failures Decade”
From a key stakeholder perspective, we see and hear from all the corners, sides and centre sections. We believe that investment in heart failure is well underway. The stakeholders are starting to collaborate and believe the real value in being collegiate, aligning aims and objectives, patients working with highly qualified specialists, companies, governments and investors shaping how the system looks. It becomes irresistible for those making decisions, irrefutable and powerful as the stakeholder activities, especially “real patient” insights are the basis of good decision making. Those that don’t believe in this are seen to have singular value.