FinalPatientsReflections_PPI Team

Reflective Piece on Patient’s Involvement and Contribution to PalliatHeartSynthesis: Palliative Care in Heart Failure Project

Why it was important to me as a patient to be involved in this project

“Yes, I had experienced serious illness with dilated cardiomyopathy. At one stage I was given only weeks to live by the cardiac consultant unless I received a heart transplant. Fortunately, I was lucky. 

“I also cared for my father who received palliative care for lung cancer. He received really great support from the McMillan nurses and was taken into hospice care before he died. The difference between the two types of care, [heart failure and cancer] even with both being terminal, was quite profound.”

I therefore wanted to help this project accordingly.” Robert Ruane

“As a patient who has survived the initial journey along the Heart Failure pathway, I felt that the opportunity to become a part of this research should not be missed. Having been retired for twenty years and certainly not up to speed on the branch of Research Methods called Realist Synthesis, only added to that feeling. I was immediately impressed by the whole research team and their emphasis on recruiting equality and diversity within the Stakeholders.” Robert Jones 

“It was important to me to be involved in this project. I was diagnosed with heart failure ten years ago after three hearts attacks and ongoing persistent Atrial fibrillation (AF). I have been fortunate that I have not experienced serious symptoms as the condition has, so far, been successfully controlled by medication. I also try to keep myself reasonably fit through regular exercise which has helped enormously.

So, it was the Heart Failure element which first attracted me to the project which I saw as another way of ‘giving back’ to the NHS, having dodged the grim reaper several times thanks to the dedicated staff of the NHS. But I wondered whether I was a suitable person for this project as I had no direct experience of palliative care, at least as I understood the term. 

“What I did know from friends and my wife, a retired OT, was that, unlike its popular image, palliative care was usually a positive experience for all involved.”  John Burden


How I felt about my involvement and contribution

“Despite the odd personal health hiatus (usually sorted by medication changes, or in one case by an ICD Generator change) I have attended all the on-line Stakeholder events since they started in November 2021. From my point of view as a heart failure patient I have always felt welcomed and valued; my views positively received, listened to and respected. I am sure my fellow patient Stakeholder members feel the same. Each meeting was professionally organised via Zoom group

connectivity, a fitting use of this technology. Each session had a pre-circulated agenda and was conducted in a user-friendly manner. 

The inclusion of the animation in cartoon format as part of the project website is a masterstroke.” Robert Jones

“We were consulted several times for comments on documentation and the animation and while I cannot quote chapter and verse, I feel that my comments were appreciated and taken onboard where appropriate or relevant.

Our meetings were run inclusively with many opportunities to contribute to discussions by all stakeholders. I wonder if I said too much in fact! 

“But the good thing was that I felt I could say what I wanted even if it didn’t necessarily agree with the professional members of the stakeholders group.”

Though there were many technical terms bandied about, I didn’t feel excluded and could ask for clarification in layman’s terms if I felt the need. I feel the professional members of the stakeholder group were very tolerant and open to the views of the PPI members. Moreover, the project team held pre-meetings for our PPI group before the main stakeholders meeting to keep us briefed which was very good.

The atmosphere in all the Zoom meetings was always warm and friendly, largely due to the approach and values of the project team which set the tone. The meetings were very stimulating, and this led me, on my own initiative, to do some mostly linguistic research around the term ‘palliative care’ and to a lesser extent, ‘heart failure’ as they are both increasingly controversial terms amongst health professionals let alone patients and carers, the health system’s clients or customers. To my surprise this short paper was taken in by the project team, tidied up and put on the project blog where it has been read and appreciated. I have never experienced this before on any of my PPI involvements these past several years.” John Burden

Final reflections 

“I really enjoyed working with Tracey and the team. I am more than happy to help wherever I can. I realise my experience is now somewhat outdated [prior to having a heart transplant], but I believe I can still offer plenty of insight into many aspects in managing heart failure.”

Robert Ruane 14/3/23

“At the outset of this project, the end-of-project date seemed a long and distant time away. I confess to some doubts concerning my own appropriate longevity to be ‘around’ at this time. Advances in successful Ablation technology have added to the Surgical, Medical andPharmacological successes of earlier years. Realist Synthesis was a challenge initially: however reading some of University College London Kate Hind’s output made me make the connection to Operations Research which I had used formerly in my earlier professional choice of Mechanical Engineering.

I have thoroughly enjoyed this phase of the project and am more than willing to help in any way I can in the subsequent phases.” 

Robert Jones 09/3/23

“The experience has been personally rewarding, that trite and over-used expression. But it has. By rubbing shoulders with medics, albeit via Zoom, I’ve come to learn more about how the health system works (and not just in the UK or England) from the grass roots to academia and the constraints imposed on it by resource limitations and the perceptions of the various stakeholders: patients, carers and professionals. From my fellow PPI contributors, I’ve appreciated the range of cardiovascular conditions and the surprising, remarkable and sometimes unbelievable health journeys they have made and how the health service has benefitted them.

The involvement has been rewarding in another sense, that of the very generous recompense for our time. I suspect we would all have done it for nothing, and there are no travel expenses involved either, thanks to Zoom.  

“I suppose it is only fair to PPI members to acknowledge materially the contribution PPI makes ultimately to health provision. After all, PPI is a form of employment, a kind of consultancy in a way, and generous material reward can make you feel valued.”

Which sums up my whole experience really, I feel my contribution has been valued. 

Many thanks to Tracey, Joanne and colleagues and good luck with the next stage of the project.” 

John Burden 15/3/23

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