We are very privileged to have people with lived experience expertise on our research team to ensure our research focuses on what matters to patients and their families. Here, our three patient and public involvement (PPI) representatives share their perspectives on why they think integrating palliative care and heart failure is such an important research area. And what they’ve gained so far from their involvement in this research.
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I think this piece of research is incredibly timely and important. I have been through a lot with heart failure and I also cared for my father who died due to lung cancer.
“The contrast between the care provided to my dad (who had cancer) as opposed to myself (with heart failure) was quite profound.”
My dad had a Macmillan palliative care nurse appointed and she took my dad through the next steps of what to expect when treatment was no longer going to prolong his life. They were on call, whenever required so he could stay at home. In contrast, I received care in hospital, which of course was fantastic, but I had no one in place like my dad had, who I could converse with about the non-medical side of things which really mattered to me at that time. Like how I was dealing with my heart failure diagnosis, concerns about what might happen, what my wishes were and so on.
Robert Ruane (PPI research team member)
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I think this is an important area of research because as more and more of us suffer from heart failure in later life, then more research and resources need to be devoted to identify good care. Developing practice in palliative care for heart failure sufferers needs to be a national priority as it is for cancer sufferers for example, where palliative care attempts to help patients and their carers with the emotional, psychological and social aspects of difficult prognoses. My family still suffer from the ‘background anxiety’, often unspoken, of whether I should be, say, mowing the lawn, digging the garden or going for a walk because Heart Failure is such a powerful – and a negative term.
“To have relevant patient input in such research is a ‘given’”.
Shared sentiment of Bob Jones (PPI research team member) | John Burden (PPI research team member)
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I very much enjoy research, and this is a most worthy project. I have enjoyed the open approach for gathering information. It’s brilliant to be able to talk openly to research and clinical staff.
Robert Ruane (PPI research team member)
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I’ve enjoyed my involvement in the project so far because I’ve gained insight into the problems currently faced by professionals in different settings and because the project team and wider group of stakeholders have been receptive to what I, as a ‘patient’, perceive as the key issues.
“I look forward with pleasure (and some hope!) of continuing this association along with my own journey along heart failure’s intriguing pathway.”
John Burden (PPI research team member)