So, I’m starting. At last. I am going back to the beginning of the journey, two years ago. I’m going to tell my story at roughly the same speed that the events actually took place so that readers get a sense of the huge space and time that the story fills.
Actually, it is the second half of an even longer story. The first half is not yet ready to be told, even though it is the cause of the second half. Suffice to say that the first half was almost as terrible as the second and seemed to last forever. But eventually, we managed to lock it away and only occasionally hear its growl these days. One day, I will release it and exorcise that demon too.
In the meantime, you probably want to know what the second half of the story is all about.
It is a story of strength and frailty, love and anger, kindness and indifference. All aspects of our humanity can be found in this story. It is the tale of an illness, and the failures of the people and the systems that should have made the tale unworthy of telling. And it is a true story. I have tried very hard not to tell it. For a year and a half, I have pursued all the proper channels to give those who should have listened the opportunity to respond appropriately. They chose not to. And so the story has to be told.
It should have read: Patient falls ill. Patient is made better. The End.
But it doesn’t.
The principal character in my story is my wife and soul-mate – the person in the world that I have loved and admired more than any other since the moment I first set eyes on her as an immature youth almost forty years ago. Specifically, the story is about her becoming ill with an irregular heartbeat, cardiac arrhythmia, and the subsequent long, painful and continuing journey to try and make her well again.
Her condition, whilst very dangerous, could and should have been successfully managed relatively quickly – perhaps in a few weeks or months. Instead, she suffered and continues to suffer dreadfully – not as a result of her illness, but as a direct result of the treatment which she received. I am not suggesting that the medical staff deliberately injured my wife of course, but there were errors, there were omissions and there was a lot of plain bad care. Not enough has been done to put that right which means that it can happen again. As a result, people will probably suffer. People could die.
The story therefore is going to contain much criticism of a number of the medical staff who treated my wife and the institutions within which they worked. I will not name the doctors or other medical staff in my story – at least not for the time being. This is not because I fear a libel suit – I am telling the truth as accurately as I can so have nothing to fear in that regard – but because they are the product of a broken system. I still hold them substantially responsible for what took place, but they are not entirely to blame. I will ensure that they have the opportunity to read the story and they will of course recognise themselves within it. I hope it changes them for the better.
I am also going to protect my own identity for now but only so that I can also protect my wife. The reason is that she is a dental surgeon in private practice, and despite what happened to her, has recently and very bravely managed to return to work, albeit in a more limited fashion than before the story begins. Her professional life has been disrupted quite enough by these events already and she can do without too many reminders of these awful events anyway.
I will not hide behind the anonymity though. I am contactable through the blog, Facebook page via Twitter or via LinkedIn and I will engage with anyone who wants to contact me to express a view, no matter whether in support of or vehemently opposed to what I am doing.
I will name the institutions however. They will not have the screen of anonymity to hide behind. They have been given ample opportunity to admit their failings and take meaningful steps to ensure that those failings are never repeated and lives are protected but they have done as little as possible at every turn. Indeed, it appears that they have withheld information and they have demonstrably failed to tell the truth. Others have acted dishonestly to conceal their own mistakes. They deserve to be shamed by my tale.
Of necessity, the story contains a lot of medical detail. I am not medically qualified in any way. I work in the construction business and until the story begins, had spent mercifully little time in hospitals. A couple of childbirths as an awe-struck spectator and a burst appendix as a self-pitying participant were just about the limit of my exposure. That said, a dental surgeon’s husband is rarely far from medical talk and what I didn’t already know, I made sure I learned along the way. I read everything I could find to help me understand what was happening to my wife. Nevertheless, my story will almost certainly contain mistakes and misunderstandings of medical detail so I trust you will forgive the errors and inaccuracies. They will be unintentional. Perhaps medically qualified readers will set me straight.
Indeed, I hope that the story will be widely read amongst the medical profession, especially those who work in cardiology, cardiac electrophysiology and emergency room medicine. I would be both surprised and disappointed if the doctors did not learn something valuable from our experiences.
In the meantime, I have created a glossary within the site and if the reader hovers over medical terms in bold (or taps on them on a smartphone) an explanation of that term will appear which should be broadly correct. Some explanations are also in the longer version of the narrative as some understanding of the jargon is essential to an appreciation of the events described.
The story will include many ‘minor’ complaints and some readers will say, perhaps with some justification, that I am being picky, pedantic or even downright unpleasant by including them. In mitigation, I defend their inclusion by saying that I am trying to paint a picture of the whole experience here and the hundreds of minor lapses in care, communication, compassion and administration compounded to make the major issues even more unbearable and less forgivable. These lesser issues therefore deserve to be included I think.
To those who are presently undergoing treatment for cardiac arrhythmia and related conditions, I apologise for setting out a horror story for you. I trust your experience will be very different and altogether more positive. I hope you understand that my main motive here is to help bring about positive change, not just to castigate the medical profession. I would be very pleased to hear your own experiences, both positive and negative, especially the positive ones. It would be good to know that our experience is not typical of the treatment happening daily around the country and the world.
As for the institutions that we came into contact with – the NHS Trust, the hospitals, the Parliamentary and Health Service Ombudsman – to them I offer no apology. Like the individual medical practitioners, I believe they have much to learn from these events. More than that, they need to change, and stop pretending that they are doing so. At the end of the day, that is what this is all about. Change – perhaps to save lives and certainly to ensure a path to justice for those whose treatment falls way below what they are entitled to expect.
Finally, I must also state at the outset that we encountered many utterly wonderful, dedicated and caring people on this journey. All the ambulance paramedics, the vast majority of the nurses and some of the doctors showed such skill and compassion that we will forever be in their debt. I am genuinely sorry if the telling of this tale casts a shadow across their shining light. Our friends too were quite remarkable and we could never have made it this far without their love and support, both practical and emotional. Finally, our work colleagues did our work on top of their own, kept our seats warm for so long and showed remarkable patience and understanding. Thank you all so very much.
Proceed to Introduction