Putting patients at the heart of heart failure services

Heart failure patients will tell you that that they want to manage their condition better at home. They will also tell you that clinical interventions are only one aspect of living with heart failure. The clue is in the living. Managing Heart Failure @home is the first step in investing in and championing innovative ways to better manage heart failure at home. The approach aims to deliver heart failure care that provides high quality, personalised care and helps people to keep well at home and improve their quality of life.

In my role as Chief Executive of the Pumping Marvellous Foundation and as someone with lived experience of heart failure, in my mind, the key to the success of Managing Heart Failure @home is ensuring that the patient is front and centre of the implementation of services. I have worked in partnership with the Managing Heart Failure @home team to ensure that patient insights are heard.

Our Patient Charter, published in June 2022, carefully describes standards of care patients should expect and builds on our report ‘Living well with Heart Failure’. Managing Heart Failure @home lays the foundations for a sustainable approach to support people to live well with heart failure by encouraging supported self-management, improving quality of life, reducing hospital admissions and readmissions, and ensuring patients’ treatments are optimised and personalised.

We need to examine how we take heart failure care forward by embracing new ways of working. Managing Heart Failure @home hopes to deliver care by focusing on three core elements, each is essential for patients to live well with heart failure:

Centred on people:

Heart failure lives in the homes of the people with the condition not in healthcare settings. People must be supported to live well independently. To facilitate this, investment in building strong relationships between patients and heart failure teams is key. Fostering a culture of coaching will enable patients to better manage their health. If during all healthcare interactions patient understanding is checked and if patients are really listened to, we can champion supported self-management and patient choice.

Embracing technology:

Adopting new technologies and digital interactions promises to enhance community care. A recent Pumping Marvellous report, ‘Living Well with Heart Failure’, found that 60% of patients had been able to successfully monitor their condition during the pandemic with the support of specialist heart failure teams. Our Patient Charter lays out that people must have equal, timely and appropriate access to optimal treatments and care. Providing patients with different ways of interacting with their healthcare team, whether that’s face to face, digitally or over the phone, puts the person first, not the condition. It supports people to live as well as they can with minimal intrusion and time commitment, if this is what they would prefer. It is of course key that the patient understands the red flags for reaching out for help and working in hybrid ways allows heart failure teams to efficiently communicate with patients in need. This access to specialist heart failure care is one of the non-negotiable pillars of support we believe should be available to those with heart failure.

Working together:

Integrated care means clinicians across hospital, community and general practice settings must work well together for their heart failure community. At Pumping Marvellous, we recognise that an effective multidisciplinary team (MDT) is another non-negotiable pillar of support. Innovative explorations of what this could look like are already developing, perhaps best exemplified by Liverpool’s Integrated Virtual Multispecialty Multi-Disciplinary Team where the patient’s multi-morbidities are considered by multiple teams, providing a holistic overview of patient care. Integrated care also means providing a seamless journey through the system, with individuals receiving specialist care promptly after a new diagnosis and ensuring effective communication to the patient and between teams becomes the norm.

Many NHS heart failure teams are already being supported by us and are using Pumping Marvellous literature to promote self-management. As the UK’s patient-led heart failure charity, helping people live well with heart failure is our priority.  The Pumping Marvellous Foundation sees Managing Heart Failure @home as a positive step forward and as a catalyst for development of future initiatives.

We must invest in the patient and their ability to manage their own condition. We cannot expect patients and their families to know what to do, especially with a chronic and sometimes unstable condition. We have a long way to go to fully realise the potential of investing in education and self-management skills in patients and their families, but Managing Heart Failure @home is the beginning of the system evolving to support this change.

Nick Hartshorne-Evans

Nick Hartshorne-Evans was diagnosed with Heart Failure in January 2010 at 39. His experience as a patient stimulated him into developing the only dedicated patient-led Heart Failure charity in the UK, the Pumping Marvellous Foundation.

After significant learning about not only the condition but also the health system, Nick narrowed his focus to developing and evolving a charity that delivered patient-led solutions developed by the patients themselves. The charities knowledge and value comes from the beneficiaries and is a valuable resource to health economies and has attracted international exposure. Recruiting driven and innovative beneficiaries is a key driver for the foundation. Developing solutions from the needs of patients rather than thinking what the patient needs is a powerful stakeholder position. The Pumping Marvellous Foundation manages the world’s largest online community of heart failure patients through their innovative and rich data communities. This is where the charity gains insights, using it to influence policy decisions.

Nick regularly engages and involves himself in both Global, European, National and Regional patient advocacy along with delivering patient-led collaborative solutions at a local level.

Nick is regularly consulted on the “patient opinion” both by key stakeholders and at conferences. His peers and partners across health channels see him as a “key opinion leader”.