Foreword

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

Introduction

This is not an introduction to the story, but an introduction to its central character. We shall call her Ann. As I have already explained, this is not her real name, but it is short and easy to type a thousand times during this story-telling, so it will do nicely. It is important that you get to know her a little so you understand why this was all so unfair and why she reacts as she does to the events that unfold.

As the story begins, Ann is fifty-seven years old but looks much younger than this. Some say ten years younger. She is naturally blonde, slender and unusually attractive with the most amazing eyes. I have a biased view of course but this is a statement of fact, not just my opinion. Everyone who met Ann would say the same.

Ann is also a very intelligent lady. Not just intellectually, but emotionally too. Above all, she is humble and kind. In fact, she is without doubt the kindest person I have ever met. It is her conspicuous kindness rather than her outward beauty which most attracted me to her all those years ago. I had never encountered anyone who was so obviously a genuinely ‘good person’.

I am a very lucky husband.

Ann was born in Newcastle, to a father who worked in the shipyards and a mother who worked at the telephone exchange. Her father was descended from Irish Catholic immigrants, all shipbuilders, who moved from the Derry shipyards around 1850 during the Irish famine and every generation since had worked in the Tyne shipyards. On her mother’s side, there were many generations of coal miners, from Durham and before that, Lancashire.

Ann spent her early years in a humble ‘Tyneside flat’ with an outside toilet. She was a bright child and her parents pushed her hard educationally. She rewarded their ambition when she became the first member of her family to attend university.

Her parents had wanted Ann to become a doctor, and she could have followed that path but instead, she opted for dentistry. She would actually have preferred to teach dance and drama. She had danced, mainly ballet, from a very early age and she was talented.  Sadly, she was too tall to go to the Royal Ballet as she would have liked and teaching dance to children would have been the perfect alternative. But typically, she decided to make her parents happy rather than follow her passion. She would be a dental surgeon and make them proud.

The apple didn’t fall very far from the tree and she chose to study at Newcastle University, where she met and married me whilst we were still studying. When she qualified in 1982, we relocated to my home county of Yorkshire where she took up a position at a delightful practice in the East Riding, and there we have been ever since. Ann is now treating the babies of the babies she treated when we first arrived in the area.

Two years ago, as the first page of our story is turned, Ann had become a much respected figure in the local community. She was apparently in excellent health and as fit as the proverbial butcher’s dog. She attended the gym around three times a week, saw a personal trainer every week and loved to hike with me in the National Parks on a regular basis. She had never smoked a cigarette in her life, drank only moderately and ate an infuriatingly healthy diet.

Nobody deserved what happened less than Ann did.

Together we have two children who I affectionately refer to as Pugsley and Veruka. Pugsley is an investment analyst in the City of London and Veruka is carving out a very successful career in recruitment in Leeds. They were 31 and 25 years old respectively as the story begins, both long since having fled the nest, and both were in loving, stable relationships. Indeed, Pugsley had married just a few weeks before the start of our tale.

The truly awful happenings in the untold part one of our story had finally been put behind us after five years of terrible stress which had included the loss of both of Ann’s parents. Our son had just got married and I had started a new business in 2010 which was becoming very successful. Ann and I were still every bit as much in love as we had been back at Newcastle University.

It is fair to say that for the first time in quite a while, we were extraordinarily happy. Finally, everything in our lives seemed to be in equilibrium and we were truly content.

Then one day in April 2015, Ann said, “I don’t feel very well”.

And everything went to hell.

 

Now, if you want to go straight to the Synopsis, the short version of the story that will only take a few minutes to read, click here.  To begin Chapter One of the much longer version, click here.

Synopsis – the Whole Story in Brief

I appreciate that most people will have neither the time nor the interest to read the detailed version of the story.  The synopsis below is provided to afford them the opportunity to see what all the fuss is about. Hopefully, reading this will tempt a few to follow the more detailed account. In the interests of brevity, there is far less explanation of the medical detail in this version and much less of the emotional and personal background. With that in mind, here is the short version:

Our local Emergency Department (ED) where many cardiac patients inevitably start their journey, is located at Hull Royal Infirmary. Hull Royal Infirmary has NO cardiology department. Indeed, they regularly have NO cardiologists physically present on the site, especially out of hours. The cardiology department is located at Castle Hill Hospital, some 5.5 miles and 16 minutes away by the shortest possible route. It is not possible to have a direct admission to Castle Hill, even in a cardiac emergency. You must go to Hull Royal.

Ann, a 57 year old, previously healthy and super-fit dental surgeon, first arrived at the Emergency Department of Hull Royal Infirmary in May 2015 suffering from cardiac arrhythmia which within hours became life-threatening. She was transferred by blue light ambulance to Castle Hill where she underwent various tests (ECG, cardiac MRI and echocardiogram but not a promised angiogram) and the condition was treated with beta blockers.

She was discharged seven days later and told that she could return to her normal routine and that she wouldn’t be back.

However, because the angiogram was not performed (despite a family history of  heart disease – both parents had suffered heart attacks), a stenosed coronary artery was completely missed. Eight days after discharge, Ann was re-admitted with severe ischaemic heart pain. This time, the angiogram was carried out and, later, an angioplasty (a single stent inserted in the Left Anterior Descending Coronary Artery).

An un-retouched photograph of Ann’s right arm some time after discharge

Despite the fact that Ann is a dental surgeon, both procedures were performed via the right radial artery.

She was again discharged and again told that she could return to work and that this time, she really wouldn’t be back.

However, Ann had sustained extensive vascular and nerve damage to her right arm as a direct result of the procedures and was not able to return to work. Despite intensive physiotherapy, she was still unable to fully use the arm when she was re-admitted yet again two months later. The damage to her arm was temporary however and would prove to be the least of her worries.

For several weeks, the arrhythmia seemed to improve but in August 2015, Ann was rushed by ambulance to the ED at Hull Royal Infirmary once again.  It took four hours for her to even see a doctor.  Any doctor. She was not at any time attached to a heart monitor.  The cardiologists at Castle Hill refused to come and see her. The ED staff established that she hadn’t had a heart attack and immediately lost interest. We were treated like time-wasters. She was discharged the next day – by a gastroenterologist because there were still no cardiologists present on site – despite her continued protestations (and mine) that her heart was unstable. We had no choice but to go home.

Just a few hours later, she had a cardiac arrest.

She just said, “My heart’s going crazy!” then collapsed. Her pupils were fixed and dilated, her tongue lolled out, her lips went blue. No breathing. No heartbeat. Nothing.  She had gone.

But she didn’t die – or at least she didn’t stay dead. Terrified, crying my eyes out, screaming for her not to leave me, I remembered enough about what she had taught me of CPR to bring her back.

She was rushed straight back to the ED and into resus and later, from there once again to the Cardiac Monitoring Unit at Castle Hill. At Castle Hill, they undertook EP studies with a view to ablation but could not find the aberrant signals that were causing the arrhythmia. so, the decision was taken to implant a two-lead ICD (Implantable Cardioverter Defibrillator) as the prescribed drugs were clearly not yet controlling the arrhythmia.

Left, the implantable cardioverter defibrillator (ICD) implanted in Ann’s chest. Right, an x-ray showing the typical two-lead set up. The leads to the atria and ventricles of the heart can clearly be seen.

The procedure was carried out on August 27th and the device was implanted sub-pectorally (behind the pectoral muscle, rather than in the more usual subcutaneous position). Despite the fact that the cardiologists had prescribed multiple blood-thinning drugs – Clopidogrel, daily abdominal Fragmin injections and soluble Aspirin – to protect the stent (and as a result there was a very high risk of post-operative bleeding) these were not withdrawn prior to the procedure in accordance with normal good practice and no pressure dressing was used following surgery, even though this had been discussed beforehand.  Furthermore, the staff completely failed to inspect the wound site despite Ann’s repeated concerns that all was not as it should be. As a result, Ann developed a massive haematoma extending from her left elbow and across her chest towards her right shoulder.  She was left in agony.

It took 48 hours for the medical and nursing staff to even examine the wound or notice the haematoma even though Ann had told them about the extreme pain it caused and only then, because Ann point blank refused to be discharged until she had been examined by a consultant. When that consultant examination finally took place, they belatedly realised that Ann was correct, the “massive haematoma” (their description, not mine) was finally seen and she was immediately put on emergency IV antibiotics and IV pain killers.

If it had not been for Ann’s refusal to leave, the consequences could have been catastrophic. She had to spend an additional three days on the unit until the danger of infection had receded.  The pain did not recede however and lasted for weeks.

The hospitality’s discharge letter to our GP stated that Ann had been admitted with dizziness, which was nonsense of course. It failed to mention the cardiac arrest altogether.

Four days after this discharge (5th September) the implanted defibrillator shocked Ann after she went into ventricular tachycardia.  Being shocked by a defibrillator when you are conscious and fully aware of what is happening is a terrifying experience. It is not possible to call an ambulance to be taken to Castle Hill (the only route in is via the ED in Hull where there are no cardiologists and they had come close to causing her death just 3 weeks before) so I drove Ann to the cardiology department – and a very scary drive it was too. She was immediately re-admitted.  The ICD shocked her again the next morning and it took a several days to get her stable.  She was discharged 9 days later on the 14th September after a long-overdue change of anti-arrhythmia drugs.

Five days after that, she was back in an ambulance to resus at Hull Royal suffering from severe arrhythmia once again.  She was transferred to Ward 28 at Castle Hill the following day and there it was discovered – completely unconnected to the arrhythmia she was experiencing – that the ICD Implant surgery had failed.  All Ann’s pain and suffering was for nothing.  Her ventricular lead was detached from the heart wall and the surgery would have to be repeated.

The repeat surgery was carried out on September 24th by a different electrophysiologist.  It was supposed to be a 45 minute procedure.  It took over two hours and Ann spent a further 1 hour and 40 minutes in recovery. She believes that she was fighting for her life as her blood pressure fell through the floor.  The electrophysiologist had been unable to find the device despite having x-rays to locate it and so had, by his own admission, he had to “dissect and dissect and dissect” the pectoral muscles. We have since established that considerable damage was caused.

Ann was discharged two days later in unrelenting agony.

She was still in agony 18 months later.

Ann had by now spent 57 nights in hospital and had become less well with every admission.

Nothing was done during this last stay in Castle Hill to address the underlying arrhythmia that was the original cause of the admission.  The doctors had been so focused on fixing their failed surgery that they had apparently entirely overlooked the underlying condition which had put her in the ambulance in the first place.

It was no surprise then that within 48 hours, Ann was again experiencing severe arrhythmia. Because most telephone lines at Castle Hill Cardiology are simply never answered, the only way to obtain treatment (apart from calling an ambulance to take Ann to the wrong hospital) was to turn up at the Castle Hill cardiac out-patient clinic without an appointment.  By doing so at intervals through October, we were able to bring about adjustments to Ann’s drug therapy and, by degrees, there were some small improvements in the arrhythmia.

The post-operative pain continued however, in fact it got worse. When I took Ann shopping, I had to push her around the supermarket in a wheelchair. She was unable to walk more than a few yards.

On October 29th, Ann had a sustained bleed from a routine blood test puncture.  After the local GP surgery was unable to stop the bleeding after several attempts, he sent Ann to Castle Hill with a referral letter – because the bleed was caused by the blood-thinning medications prescribed by the cardiologists and any treatment might have affect on the stent.  Castle Hill Cardiology (in fact the consultant electrophysiologist responsible for the first implant procedure) refused to treat her and sent her away, telling her that she should never return without an appointment. No further appointments were ever issued. It seemed that the department was apparently trying to wash its hands of a difficult patient. They didn’t arrange an ambulance transfer. They just told her, still bleeding, to leave.

Whilst at Castle Hill that day, Ann was also told by the same consultant that that the pain (which started the moment Ann came round from the anaesthetic and has been continuous for most of the time since) was “nothing to do with the ICD implant”.  Ann didn’t believe that and we’re certain that the doctor didn’t believe it either.

The bleed was eventually stopped in Majors at the Hull Royal Infirmary Emergency Department, some 11½ hours after it had begun.

By November 2015, Ann should have been back at work but the pain in her chest remained so severe that she could barely manage to walk unaided from the living room to the kitchen. She could not climb the stairs alone. She spent most of her time in bed and the rest prone on the sofa. She couldn’t stand for more than a couple of minutes. Her life was effectively in ruins. I had to stay off work much of the time to remain with her as her carer. Her professional life was, for the time being at least, destroyed and mine was rapidly heading in the same direction. She was taking both paracetamol and codeine at maximum dosage with morphine on top when the pain was at its worst, which was much of the time.

To see just how awful Ann’s plight had become, brace yourself and watch the short video clip below. Filmed in November 2015, over two months after the second procedure, it provides a glimpse of what Ann had to endure, twenty-four hours a day, seven days a week for months and months on end.

 

As her condition was intolerable and she had effectively been abandoned by the Castle Hill team, I decided to submit a formal complaint on Ann’s behalf to the Hull and East Yorkshire Hospitals NHS Trust. The very detailed complaint, and a Freedom of Information Request for her full hospital medical records were submitted at the end of November 2015.

Meanwhile, our GP remained extremely supportive and helpful. In December, she referred Ann to a specialist pain management consultant back at Castle Hill. He confirmed that Ann was suffering from chronic post-surgical neuropathic pain and prescribed anti-neuropathic pain medication. It didn’t work very well then and he is still adjusting the medication in an attempt to eliminate the pain. There are very few options left.

At Ann’s request, our GP also referred Ann to the cardiology department at the Freeman Hospital in her home city, Newcastle, for a second opinion.  The Freeman is a renowned centre of excellence in cardiology. Ann also had family in Newcastle so there would be some support available locally. Consultations at the Freeman in January and February 2016 decided that further surgery would be the best course of action – to relocate the ICD away from the damaged muscles and nerves and re-implant subcutaneously.  So, Ann would now endure a third implant procedure. The corrective surgery was scheduled for March 2016.

January also saw the first response from the Trust, six weeks after the complaint was submitted, when we were invited to attend a ‘resolution meeting’. The meeting took place in early February. Ann was not physically or emotionally strong enough to attend so I represented her.

Of five clinicians that were due to attend (three from cardiology and two from the ED) only one bothered to turn up. I read an emotional statement prepared by Ann and showed videos of her literally screaming in agony months after her surgery.  To be honest, I was nervous and ill-prepared and with most of the key people missing, we didn’t achieve very much. The minutes of the meeting the Trust later provided were a travesty, wildly mis-recording almost every point discussed.

Also in February, we were given sight of a letter from the Castle Hill electrophysiologist who carried out the second implant procedure to the Freeman cardiology team, written following the resolution meeting to provide some background on Ann’s case. It stated that Ann was on a beta blocker that she wasn’t actually taking and it described events in her medical history in the wrong order and with completely the wrong dates.

Such was the appalling standard of administration at Castle Hill Cardiology that the Freeman never received the letter anyway.

In early March, a second resolution meeting was held with the ED team. They initially tried to assert that Ann’s cardiac arrest had been nothing more than a faint but they admitted to mistakes made in the ED in August 2015 (notably the complete absence of any cardiac monitoring) and even that she had been treated based on someone else’s blood results at one point. Nonetheless, there was no acceptance that the discharge before the cardiac arrest was inappropriate.

The resolution meetings had dealt, very badly, with perhaps 10% of the substance within our complaint. A promised ‘point-by-point’ response to the rest of the complaint was never received.  Given the Trust’s lamentable response, I made the decision to refer the matter to the Parliamentary and Health Service Ombudsman.  However, this cannot take place until six months after the initial complaint unless a ‘final decision letter’ had been received from the Trust. So I requested one. By the time I received the letter, the six months was up anyway.

Later in March, we traveled to Newcastle for the corrective surgery but shortly after admission, Ann began to show the signs of a nasty flu virus and so the operation was cancelled. The procedure finally took place in early May. Within three days, Ann was up and about and had already relinquished the post-operative morphine. A matter of weeks later, Ann was able to return to work after a 15 month absence. The contrast with the outcomes at Castle Hill could not possibly have been greater.

The photographs above tell a story. Top left, Ann is still substantially bed-bound three months after the second procedure at Castle Hill, long after she should have resumed a normal life. Top right, just two months after the corrective surgery at the Freeman, Ann is transformed and is able to hold our new-born grandchild whereas after the Castle Hill surgery, she couldn’t even use a knife and fork. Bottom left, is the ICD implant site following the second procedure at Castle Hill, taken in April 2016. This is a sub-pectoral implant, so behind the muscles. The ICD should not be visible. The photograph bottom right was taken just over a month later and is the implant site after the corrective surgery in Newcastle. This is a shallow sub-cutaneous implant. So, the generator should be more visible in this second shot. Draw your own conclusions.

 

When Ann returned to work, it seemed that the nightmare was at an end.  Sadly, that did not prove to be the case. Eventually, the chronic pain would return.

In August 2016, we received confirmation that the Parliamentary and Health Service Ombudsman would investigate our complaint, which had been referred to them in May, exactly six months after the original complaint was submitted to the Trust. It was not until November that the investigation actually began.

The PHSO wanted to reduce the many issues down to three of the most important and so we agreed that the following would be selected:

  • The treatment (or lack of appropriate treatment) in the ED in August 2015 that led to Ann’s cardiac arrest.
  • The failure at Castle Hill to prevent, discover and treat the massive haematoma that followed the first implant procedure.
  • The conduct of the second procedure that left Ann in debilitating, chronic pain (which by now was returning with a vengeance).

The case file was passed to the medical experts for review in December 2016 and in January 2017 we received the draft report. The contents of this are confidential (whereas the final version we are free to publish) but as the two documents are in fact identical, I am able to say that in the draft report, the Ombudsman found in our favour on the first two issues, recommending that the Trust issued an apology, paid a token amount of compensation to us both and instigated an action plan to ensure that the errors were not repeated.

On the third, they concluded that, as the procedure had only taken 40 minutes, the Ombudsman supported the Trust’s assertions that the procedure had been routine and  that it had been carried out appropriately.

I knew for certain that this duration was wrong.  I had been there at the time and I knew that Ann had been in the ‘Lab’ (the electrophysiology operating theatre) for 3 hours and 40 minutes so this 40 minutes figure was quite ridiculous. I had also read the roughly 300 pages of medical notes and had found nothing to confirm the exact duration of the second procedure. So I challenged the finding on the third issue and asked the Ombudsman to provide me with a copy of the evidence on which they had relied.

In January 2017, the Ombudsman supplied me with a copy of the evidence in question, along with the ‘final’ report. So, I could now see what they had relied upon but because they simultaneously issued the final report, I was denied the opportunity to comment on the evidence and have the report adjusted.

That didn’t stop me trying.

The evidence in question turned out to be the contemporaneous notes made in the Lab during the second procedure.  These were completely new to us and had been missing from the set of notes provided under the freedom of information request.  Out of hundreds of pages of notes, the only pages apparently missing were the ones that were the most fundamental to our complaint. We can only conclude that these pages were deliberately withheld.  The odds of such a vital omission being accidental are just too long to be credible.

On studying the notes, it was possible to see that the Ombudsman’s medical expert had made a terrible mistake. At first glance, they appeared to support his conclusion. Ann’s arrival in the Lab that day the previous September is recorded at 10.20.  Her departure time is strangely not noted. Further down the page, further notes begin “11.00”.  The medical expert saw this and drew the sloppy conclusion that the entire procedure took from 10.20 to 11.00 – so just 40 minutes.

Had he read further, he would have drawn a very different conclusion. First of all, the passage that began “11.00” actually reads “11.00 – patient anaesthetised”.  The 40 minutes had been the preparation for the procedure, not the procedure itself. Had he turned the page, he would have seen that the drugs administered when the patient comes round from the anaesthetic were administered at 13.05. So, the procedure actually took 2 hours and 5 minutes.

Throughout the complaints procedure, the Trust had maintained that the procedure took less than an hour and was routine.  Here, we finally had proof positive that they were not telling the truth.

I contacted the Ombudsman and explained their error and asked that the report was re-issued with a suitable correction and quite possibly a very different conclusion.  I was told that it was too late.  The final report was indeed final. The only path now open was to lodge a formal appeal.

Needless to say, a detailed appeal, with the error fully explained and the relevant notes attached was immediately lodged. In March 2017, I received an email to say that the appeal ‘did not meet the review criteria’.  The Ombudsman would not admit its mistake and was instead brushing the matter firmly under the carpet.

I was disgusted and extremely shocked.  These people were supposed to be there to prevent this sort of thing, not join in with it.

In April 2017, in a final attempt to elicit an appropriate response, I contacted the Chief Executive of the Hull and East Yorkshire Hospitals NHS Trust, Mr Chris Long and made a request for a one-to-one meeting so I could explain to him in a polite conversation what is really happening in the organisation he leads and what I believe to be the very real risks to the lives of the Trust’s cardiac arrhythmia patients arising from their approach to treatment both at Castle Hill and the Hull Royal ED..

Mr Long replied on 22nd May and declined my request.

I had reached the end of the road.

A year and a half of effort to get some justice for Ann and some improvement in the Trust’s practices in order to protect and possibly save the lives of future patients had all come to nothing.

So, as they had declined to hear the full story privately, I decided to take the matter into the public domain which is why you can now read this story. It shouldn’t have been necessary to write it at all but I simply ran out of alternatives.

I encourage you to read the longer version of the story. This synopsis is by its very nature superficial. If nothing else, please take a look at Chapter Fifteen which tells how Ann has fared since the corrective surgery in Newcastle in May 2016.

Thank you for reading. Please share the story on social media if you can. More cases like Ann’s will only be prevented if the Trust is forced to learn from its errors.

 

 

 

 

Chapter One – Palpitations!

The wedding day had been on March 20th.  It was one of the happiest days of our lives. The weather had been unseasonably glorious and Ann had looked utterly stunning in her excruciatingly expensive Mother-of-the-Groom outfit. Every second had gone to plan and the whole day was flawless. Ann had whirled around the dance floor until the early hours (as she always did) and looked the picture of a healthy, happy, elegant and still very beautiful woman having the time of her life.

For my part, I just couldn’t stop smiling. It was as if the grin would be permanently fixed on my face, it had been there so long. Ann had recently completed a fiendishly complicated porcelain veneer job across eight of my front teeth and was convinced that this was the reason for my fixed grin. The truth is that I was just bursting with pride and overjoyed to see my family so happy. We both were.

It was only around a week later that Ann noticed the first ‘palpitations’. They were nothing significant initially. In fact, she didn’t even bother to tell me until it had happened a number of times. I had been working in the United States part of that month and so had been blissfully unaware of what was happening.

Over the next six weeks, she suffered the episodes with increasing frequency and severity and on two occasions, she briefly lost consciousness (which she kept from me until later). The rest of the time, she felt absolutely fine and she suspected that she was suffering the effects of an unusual viral infection and so continued her normal routine and fitness regime as usual.

On Wednesday 13th May, she attended an appointment at our local GP surgery. I don’t recall this being arranged in advance, I believe she made an urgent request to be seen after a particularly powerful episode of palpitations.

I came home from work that night to find Ann crying on the sofa. She told me about her visit to the GP: She had been instructed to stop work with immediate effect and that she would be receiving an urgent appointment at the cardiology department at Castle Hill Hospital.

It is worth taking a short break from the narrative here to explain the unusual (and in my view highly unsatisfactory) set up for cardiology services in our part of East Yorkshire. The services are provided by the Hull and East Yorkshire Hospitals NHS Trust. Cardiology services are provided at the Castle Hill Hospital in Cottingham in a modern, relatively new unit, purpose-built in 2009 at a cost of around £48m. These include Interventional Cardiology (catheter-based treatment of structural heart disease such as fitting stents to open up the coronary arteries to prevent or after a heart attack); Cardiothoracic Surgery (including bypass surgery, valve replacement and so on) and Cardiac Electrophysiology (the diagnosis, treatment and management of electrical abnormalities of the heart – much more of which later).

The Emergency Department (ED) or Casualty Department, where many cardiac patients inevitably start their journey, is located at Hull Royal Infirmary – some 5.5 miles and 16 minutes away by the shortest possible route from Castle Hill. Hull Royal Infirmary has NO cardiology department. Indeed, they regularly have NO cardiologists physically present on the site.

So, if you arrive as a cardiac emergency by ambulance at Hull Royal, the chances are that you will not have expert cardiology doctors there to help save your life. There are many highly trained emergency care doctors of course, but if cardiologists weren’t better at cardiology, there wouldn’t be any, would there? Of course, we didn’t learn this until much later. At the time, we assumed that such expertise was available on site 24 hours a day.

Enough for now.  Back to the story.

We were both stunned. An urgent referral to Cardiology?! How could someone who had looked after themselves so well and who was so conspicuously healthy need a cardiology referral? Ann was devastated. I was scared. It just felt utterly surreal. How long would the appointment take to come through? What might they find? Would it affect Ann’s work long term? Was her life actually in danger? Would she need surgery? The questions poured out of the ether like a waterfall for both of us.

The next day, Thursday, things went from bad to worse. Ann had eight further episodes of what felt like a very rapid heartbeat accompanied by mild chest pain. These increased in severity over the course of the day and by evening, were becoming scary. By bedtime, we decided that we couldn’t wait for an appointment so I drove Ann to the Emergency Department at Hull Royal Infirmary. It didn’t even occur to us to call an ambulance.  At this stage, we still didn’t understand the seriousness of her condition.

We arrived there at 11.30pm. The car parks, usually full to bursting, were all but empty at that time of night and so we were able to park right in front of the building. By the time we got there, the episode seemed to have passed and Ann asked to be taken back home. “I feel fine now”, she said. “I don’t want to make a fuss, let’s just go home”.  “To hell with that” I replied. “We’ve come this far. You’re getting checked out!” Eventually, she followed me from the car.

I don’t want to be too disparaging about Hull or this hospital but the truth is that Hull Royal Infirmary is about as depressing as any hospitals gets.  It is a 13-storey tower hospital built in the 1960s when my fellow architects were deluded enough to believe that concrete brutalism was cool.  Hull Royal is one of their more spectacular crimes against humanity. It should have been razed to the ground years ago. At 11.30 on a Thursday night, its limited charm is not improved by the collapsed drunks or the seriously ill patients who have struggled outside for another elicit cigarette. It feels more like war-torn Syria than East Yorkshire.

Nevertheless, in we went and having pressed the appropriate buttons on the robotic check-in machine, we were seen very quickly. Evidently, the chest pain button had resulted in an immediate escalation. So far so good.

After Ann’s details had been taken, she was immediately dispatched for a 10-second, 12-lead ECG and I was allowed to stay with her. The nurse who attached Ann to the machine made no attempt to hide her boredom.  I suspect she took one look at Ann who outwardly seemed like a picture of health and concluded that this was a complete waste of her time. Having completed her wiring, she stood with her back to us during the test and worked hard on her chewing gum. Then the machine ejected its printout and the nurse tore it off and took a glance.

Her eyebrows shot up. “Bloodyhell!” she exclaimed, and she ran from the room.

We came to appreciate much later that Ann had been extremely lucky in that 10 seconds. Her condition is very hard to detect most of the time. It is by its nature very episodic – there one minute, gone the next. Mostly gone. Had her heart rhythm been as normal during that ten seconds as it was most of the time, the chances are that we would have been sent home (and she could have died as a result).

But we weren’t sent home.  Clearly, the ECG was far from normal and Ann was moved immediately to the brand new ‘Majors’ unit. Opened only a few weeks earlier and a stark contrast to the other areas of the hospital, the state of the art 42-bay major trauma and resus unit is as modern and well-equipped as any in the country. There, we were met by an extremely pleasant doctor (a senior registrar I would guess – I’m afraid I don’t remember his name and so don’t need to change it but we will call him Dr A anyway) who wasted no time in placing Ann in a cardiac monitoring bay and attaching her to a 12-lead heart monitor and pulse oximeter.

It is hard to describe our feelings. In the months that followed, we would grow used to the never-ending little wavy lines drawing themselves across the monitor screens. The constant beeps and alarms would become part of our daily sound landscape, as normal to us as birdsong and distant car horns, even though those alarms might be announcing that a life might be about to end. They would become part of life’s background and could be more easily ignored.

That night though, they were the centre of our world. It was as if we had awoken in an unfamiliar foreign country, and we could not speak a word of the language. The beeps and alarms seemed as loud as a thunderstorm and it was impossible not to watch the monitors, even though we did not fully understand what they were telling us.

Dr A explained that the ECG had shown marked cardiac arrhythmia – an irregular heartbeat – and even with our limited understanding, it was obvious from the monitor screens that this was still the case.  Even to my untrained eye, it was clear that the distance between Ann’s heartbeats was not consistent and her heart rate fluctuated wildly, even though she wasn’t moving at all.

Once Ann’s history and blood samples had been taken and Dr A had heard about Ann’s positive lifestyle, he said that he had a ‘gut feeling’ that there was something more significant going on. He said he expected the continuous monitoring would reveal more in due course.  He positioned his seat at the island staff station directly opposite our cubicle such that he could see Ann’s monitor at all times. And there he sat whenever he wasn’t directly involved in dealing with other patients, one eye on the wavy lines and heart rate number. And I sat beside the bed, holding Ann’s hand and also stared at the screens.

At 4.00am, when Ann was snoozing intermittently and seemed a little more stable, he came over. He put a kind hand on my shoulder and gently urged me to go home. He said that my being there wasn’t going to change anything and I should go and grab some rest whilst I could. He promised that he would stay at his station all night and keep a very close eye on her. When Ann agreed that I should go, I reluctantly headed back to the car.

At that time of the morning, the city is at its quietest. Even the clubbers had made their way home by now and the dawn chorus was yet to begin. The car park was utterly silent. I had never felt so alone and so scared for her. I couldn’t bear to leave her but I drove myself home and went to bed where I very quickly fell into an exhausted sleep.

Two hours later, as I slept, and Dr A continued his vigil, his earlier prediction came to pass.

Between 6.00 and 6.30am, Ann went into sustained ventricular tachycardia. For no apparent reason, her heartbeat shot up to 240 beats per minute – and stayed there. Her heart was beating so fast that it didn’t have time to refill with blood before the next beat. Not enough blood was therefore being pumped around her body and not enough oxygen was reaching her vital organs. If her heart continued to beat that fast for too long, she could die.

Unfortunately, just when the tale is becoming a little more dramatic, it is necessary to interrupt it again to provide a basic understanding of cardiac arrhythmias and to do that, we must first do a little refresher on cardiac anatomy. It is very hard to know quite where to pitch these medical interludes – they are likely to be annoying or even patronising to some readers with medical knowledge but I hope that they are helpful to at least some of the others, many of whom may not have seen a diagram of a heart since they were studying for GCSE’s (or O Levels if you’re as old as I am). At this early point in the story, I knew almost none of this medical detail. I learned it over the months that followed the events we’re now looking at.

So, starting with the basics, the heart is divided into 4 chambers – two at the top (called the atria – the plural for atrium) and two at the bottom (called the ventricles, which are a bit bigger). A single heartbeat begins with the contraction of the atria, quickly followed by the contraction of the ventricles. This gives the heartbeat its characteristic ‘ba-bam’ sound and makes the heart a very efficient pump.  The ‘ba’ is the atria contracting, the ‘bam’ is the ventricles following suit.

Arrhythmias (basically bad heart rhythms) are caused by electrical anomalies and tend to affect either the atria, or the ventricles. Basically, electrical signals are arriving in the heart that shouldn’t be there. I won’t get into all the different types and sub-types but the following arrhythmias turn up in our story so we should have a basic understanding of the differences between them.  Eventually, we’ll need to look at what causes them and how they are fixed but for now, we’ll stick to the basic differences. The names and abbreviations vary slightly around the world so I am using the common UK terms and acronyms:

Atrial Fibrillation (AF): Fibrillation means twitching, of a muscle in this case. So, atrial fibrillation is twitching of the muscles of the atria resulting in a rapid and irregular beating of the heart. AF is the most common arrhythmia. It is often associated with high blood pressure or heart valve disease and most cases of AF are secondary to some other medical problems.

Supraventricular Tachycardia (SVT): Tachycardia means an unusually fast heart rate, usually well over 100 beats a minute.  Supra means above.  So, supraventricular means above the ventricles. This is a very fast heartbeat originating above the ventricles. Technically therefore, AF (above) is one of four main types of SVT. Unlike VT below, SVT is not usually life-threatening.

Ventricular Tachycardia (VT): This is what was happening to Ann. VT is an unusually fast heart rate (VT is usually above 120 beats per minute and can be as high as 300 beats a minute) originating in the ventricles (towards the bottom of the heart) and it can be very dangerous. Non-sustained VT lasts up to 30 seconds. If it lasts longer than that, it is described as sustained VT. It can often lead directly to cardiac arrest, or to ventricular fibrillation (below) and from there to cardiac arrest.  VT and SVT can be difficult to distinguish.

Ventricular Fibrillation (VF): As with AF, VF is twitching or quivering of the heart muscles but this time in the ventricles. It is caused by chaotic electrical impulses in the lower chambers. Here, it is many times more dangerous than AF and, without intervention, can be quickly followed by cardiac arrest and death.  Regular watchers of TV hospital dramas such as ‘Casualty’ will have heard many times the line “Quick, he’s in VF!”. The line is always followed by the rapid deployment of a defibrillator – so called of course because it is designed to stop fibrillation.

OK, nearly done with the medical stuff for now.  There are a few more terms which we should probably get familiar with first however. The first is sinus rhythm. In simple terms, this is the heart’s normal rhythm, which basically means that everything is happening in the right order. We might get to what those things are and in what order later but that is sufficient for now. The ‘Casualty’ watchers will have heard “It’s OK, he’s back in sinus” many times.

Next, cardioversion. Cardioversion is a medical procedure by which an arrhythmia is returned to normal sinus rhythm. It can be chemical cardioversion, the use of a drug, or electrical cardioversion, the use of a defibrillator. Sometimes, patients will cardiovert themselves back to sinus without intervention.

Finally, defibrillation is electrical cardioversion using a defibrillator to deliver an electric shock to the heart. Many think this is to restart the heart. I believe it is often more accurate to say that a defibrillator usually stops the heart, which is beating too fast or is quivering, and so allows it to restart in normal sinus rhythm. The correct description is that a defibrillator ‘depolarises’ the heart.

OK, cardiology lesson one over.  It’s time to get back to Ann. It is 6.30am, I am fast asleep back at home and Ann is alone, terrified and is in sustained VT and in danger of going into VF.

We were told later that Ann was in sustained VT at around 240 beats per minute for about 35 minutes. As far as we know, the nearest cardiologist was at Castle Hill, 6 miles away on the other end of a telephone line. What we know is that Dr A and the Hull Royal team was getting extremely concerned about whether Ann would be able to survive this episode and they had put in a cannula in readiness for a chemical cardioversion. After 35 minutes, just before they were about to intervene, she cardioverted back to sinus rhythm by herself.

The moment this happened, the ER staff arranged an ambulance transfer to Castle Hill Cardiology unit, where she could receive the expert care she so desperately needed. Ann had her first ‘blues and twos’ ambulance journey.  It would not be her last.

It is of course impossible to say whether her treatment would have been any different if cardiologists had been on hand to advise on her treatment during her emergency. Suffice to say that when these episodes were repeated in Cardiology at Castle Hill, they intervened much more quickly. Nevertheless, Dr A did an amazing job for Ann that night and morning.  I hope he reads this and in case he does I want to say an enormous thank you to you Sir. You are one of the heroes in this story.  Your hunch was on the money. Your vigilance was justified. You did everything right. We are in your debt.

 

Continue to Chapter Two

Chapter Two – First Admission

I awoke later that same Friday morning to the sound of the telephone. As I came round and remembered the night before, my own heart started racing. It was all but certain to be the hospital and God only knew what news they were going to give me.

On the line was a senior nurse calling from the Cardiac Monitoring Unit at Castle Hill. Ann, she told me, had had some further problems after I left Hull Royal and had been transferred to the CMU at Castle Hill in the last hour or so. Visiting hours in the CMU were pretty informal I was told so I was welcome to come in and see her and that she was asking for me and would need some basics like pyjamas, toiletries and so on. In the meantime, she was comfortable, stable and in safe hands.

When I turned my mobile on, I was encouraged to see that I already had a text message from Ann telling me not to forget her glasses. I then grabbed a quick shower and called the children to let them know their Mum had been admitted and promised to keep them posted. I packed a bag with what I thought Ann would need and then jumped in the car and set off for the drive to Cottingham.

Little did I realise that this was to be the first of over one hundred such journeys.

The route from our home to Castle Hill is very picturesque and passes through some very pretty countryside. In May, with the season passing from Spring to Summer, it is particularly lovely. But I barely noticed it. Ann was on the Cardiac Monitoring Unit. My wife was in a cardiology hospital and not just on a ward, but on the monitoring unit!  That was a bit like intensive care. I just couldn’t get my head around it.

I remembered visiting my business partner in one such place years before. He was fifty-three. He was super-fit too. County standard squash player, captain of the golf club. I remember his embarrassment when I arrived.  “This is ridiculous isn’t it?” he said as I walked in. “Sure is”, I replied.

A few weeks later, we were at his funeral.

Would I be at Ann’s funeral in a few weeks? We were supposed to grow old together. Was that not going to happen? You don’t see the pretty landscape when these thoughts are hurtling around your head.

The wards in the Castle Hill Cardiology department are upstairs.  Wards 26 and 27 are for cardiothoracic surgery and they have the Cardiac Intensive Care Unit (CICU) where high dependency patients go before or after major open heart or bypass surgery. Ward 28 is for interventional cardiology (heart attacks, stent placement etc) and cardiac electrophysiology (arrhythmia patients and implants). At the end of Ward 28 is the Cardiac Monitoring Unit (CMU) containing the most poorly people needing intensive interventional or electrophysiology care.  Downstairs are the out-patient consulting rooms, operating theatres, the electrophysiology lab (the Lab – more of that later, much more) and, by the entrance, a small and pleasant café.

I had never been in the building before and I recall being surprised how nice it was. Ward 28 and CMU were both divided into four-bed bays with a shared bathroom and single en-suite rooms, the latter usually for the more poorly or longer stay patients. The CMU was just the same as Ward 28, with its own central nurse’s station full of screens replicating the monitors attached to all the patients. The only difference I could see with CMU, was that there were more staff per patient such that they were checked more regularly and monitored more closely.

The sound of the monitor alarms was all but continuous. After a while, you learn what they mean and can distinguish between the less important ones and the ones that tell you that a life is in the balance. When you leave CMU, the world outside seems unnaturally quiet and peaceful. For the first-time visitor, all the unfamiliar noises are very scary.

Ann was in a four-bed bay in CMU.  She had that same look on her face that said “What the hell am I doing here?” That aside, she looked much better than I had imagined and I felt enormous relief.

However, when she told me what had happened after I had left the ED, I was scared all over again. She could so easily have died right there whilst I was sleeping peacefully back at home. I really struggled to reconcile what she was telling me with the super-healthy woman I knew.

Apparently, the staff had cheered and applauded when Ann had arrived at Castle Hill. Ann had no idea why. They explained that she had self-cardioverted from the longest sustained episode of rapid ventricular tachycardia they had ever seen. In their experience, no-one before had ever managed to revert to sinus rhythm without intervention after such a long time in VT. Usually, without defibrillation, the patient would have gone into VF and died after no more than ten minutes.  I have done a little reading on this and have found a few examples of sustained VT episodes at similar heart rates of up to an hour but in all cases, the patients had to be electrically cardioverted. Some patients have had much longer runs but only at a much slower heart rate. I couldn’t find any examples of self-cardioversion after such a sustained run at almost 250 beats per minute. What happened to Ann was extremely unusual.

I have no idea why the ED doctors didn’t intervene sooner. I can only assume that her oxygen saturation levels remained high enough despite the fact that very little blood was being pumped around her body and so she remained conscious throughout. Had Ann not been so incredibly fit and healthy, she would have needed the defib or chemical cardioversion to save her life.

I simply couldn’t believe what I was hearing.

Later that day, she was given an echocardiogram and had a further ECG. We were told that a cardiac MRI and an angiogram would follow, probably after the weekend. The reason for the delay was that the staff who carry out these important diagnostic tests usually don’t work at weekends. When people say “Don’t get sick on a Friday!” they have good reason.

Time for another quick interlude to demystify all these tests.  Everyone has heard of the ECG, the electrocardiogram. This shows the electrical activity of the heart just like the monitors to which Ann was attached but in much greater detail. Lots of sticky electrodes are attached to the skin and the machine can read the electrical activity and prints it out as a load of wiggly lines on paper. An echocardiogram (or echo) is an ultrasound scan of the heart, similar to the routine scans of a foetus in the womb which shows the chambers of the heart and gives an indication of blood flow.  A stress echocardiogram (or stress echo) is the same thing but carried out during or immediately after strenuous exercise (on a treadmill or bike) and so is carried out to see if the heart is badly affected by physical activity. A cardiac MRI (cardiac magnetic resonance imaging) uses a powerful magnetic field and radio waves to produce detailed sectional pictures of the structures within the heart.  An angiogram is a special x-ray of the heart and surrounding blood vessels taken whilst a special dye (a radio-opaque contrast agent) is injected into the veins. Any narrowing of the blood vessels, notably the coronary arteries, shows up clearly. End of interlude.

The rest of that day, Ann’s heart rate was irregular and fluctuated between 50 and 110 beats per minute (bpm) at rest but didn’t go completely crazy again. Her heart rate was still going twice as fast for no apparent reason, but it wasn’t a cause for major concern.

The next day, Saturday 16th May, it was.

During the morning, Ann had three further major arrhythmia episodes. One of them was so severe that she had to be chemically cardioverted for the first time to slow a heart rate of 270 bpm. It was a terrifying experience and it meant that her condition remained very dangerous.

Overnight, a gentlemen on the unit had died in similar circumstances.  Of necessity, the bed was soon occupied again and its new resident had two artificial heart valves, chest and upper respiratory tract infections and could only walk 25 yards when he was well.  He was told he would be moving off CMU as this area was reserved for people who were very poorly.

It brought home to Ann and me that she really was extremely unwell.

Because of the dangerous nature of Ann’s arrhythmia, she was started on beta blockers – specifically Bisoprolol 2.5mg b.d. (b.d. means twice a day). The Bisoprolol initially seemed to do its job as Ann remained relatively stable for the next few days and on Tuesday 19th May, she was moved from CMU to Ward 28. The cardiac MRI was finally carried out during the morning and the results were promised in 24 hrs.  She was informed that the next investigation would be an EP study.  The planned angiogram had evidently been abandoned or forgotten.

On the Thursday, Ann was told by one of the junior doctors that the cardiac MRI had revealed scar tissue in her heart.  Ann had enough medical knowledge to be very scared by this news. There were lots of potential causes, and none of them were good news. Scar tissue detectable in scans can be an accurate indicator of a risk of sudden cardiac death.

However, it turned out to be utter nonsense.  No scar tissue had been found, nor did any exist.  The origin of this completely unnecessary and distressing news was never admitted or explained. Nobody apologised for the error. Nobody seemed in the least bit concerned. We can only assume that the young doctor gave the news to the wrong patient! Perhaps the person whose life was at risk was told that their scan was clear. Who knows?

Ann was also informed that she would soon be going for the EP study with a view to ablation of any aberrant nerve signals.  Basically, they were going to try and find the bad signals that were causing the arrhythmia and burn them away. In the meantime, her resting heart rate was down to a typical 40bpm (bradycardia) and she was experiencing blurred vision and dizziness.  All were common side effects of the Bisoprolol and so the registrar suggested a switch to Amiodarone.

For the uninitiated, Amiodarone is a very effective anti-arrhythmic agent with a number of horrendous side effects over time – several of which can be life-changing or even fatal.  It causes fibrosis of the lungs, damage to the liver and thyroid glands, damage to eyesight, discoloration and photo-sensitivity of the skin and, according to one recent study, an increased risk of cancer. It tends to be used for elderly patients in whom the side effects are deemed to have a lesser impact (or, to put it bluntly, they’re going to die soon anyway so the reduction in life expectancy is less significant).  Why a cardiac registrar would suggest its use in an otherwise healthy woman of 57 years when less dangerous beta blockers hadn’t even been fully evaluated is beyond comprehension (especially when the patient is a medically qualified, highly intelligent woman who knew exactly what the registrar was talking about).

That’s a bit harsh I can hear you say. Yes it is. At the time, I had no idea how stupid the suggestion was at the time, that knowledge came later, so my criticism has the benefit of hindsight. The cardiology consultants did agree that it was stupid though. It isn’t just my ill-informed opinion.

That same afternoon, Ann was taken down to ‘the Lab’ (otherwise known as the Cath Lab – Cath short for Catheter – the Electrophysiology Lab, or the EP Lab – effectively the electrophysiologists’ operating theatre) for her electrophysiology study with one of the electrophysiology consultants who we shall call Dr B.  We will be hearing an awful lot about Dr B over the coming months.  During the procedure, Ann discussed the possible change to Amiodarone and fortunately, Dr B immediately dismissed it as completely inappropriate.

Entry to Ann’s heart for the EP study was made via the femoral vein in her thigh.  Attempts were made to reproduce the arrhythmias without success and no aberrant signals of any kind were found in the atria – which, we understood, suggested that the problem was ventricular (consistent with what had been said in the ED).  In that nothing could be ablated (burned away), it seemed that the arrhythmia would have to be managed by drugs alone but in terms of future options for treatment, we were told nothing at the time.

The next day, Friday, Ann’s Bisopralol dose was reduced to 1.25mg because of the slow heartbeat and other side effects.  Her heartbeat recovered to around 50bpm.

Later that day, we both finally had the opportunity to talk a consultant and put questions to him – but only after repeated requests.  The difficulty here is that the electrophysiology consultants do not do ward rounds. Yes, seriously, the EP consultants rarely put in an appearance on the wards and so the arrhythmia patients have very little contact with their physicians. If you are at risk of a heart attack (i.e. you have coronary artery disease) you will probably see your consultant every day.  If you are at risk of cardiac arrest (you suffer from arrhythmia) you may not see your consultant for days at a time. The ward rounds are done by the interventionists (the stent guys) and, with respect, they don’t actually know very much about the dark art of electrophysiology (and that is their expression, not mine). So, Ann had finally managed to get an interventionist consultant to her bedside.

Dr C was pleasant, polite and helpful. He told us that the failure to stimulate arrhythmia during the EP study was a very good sign.  He also stated that the beta blockers had the arrhythmia under control – which we would learn wasn’t true then and still wouldn’t be true five months later.

He explained, finally, that the cardiac MRI had shown that Ann’s heart was structurally sound.  He said that the only issue was some “dodgy wiring” that may have been the result of unknown causes such as prolonged stress (the untold first half of the story). The “only issue” part of that advice also turned out to be completely untrue. The electrical issue was not the only problem.  There was something else that the medical team had missed altogether – because they had neglected to perform the angiogram, even though Ann’s family medical history suggested that it was essential.

Anyway, at the time, the news seemed to be very good indeed.  Ann was told to take a month off work and then gradually return to her normal life – including her regular gym regime etc.  She was told to expect to make a full recovery and not be seen again in the Cardiology Department. We were thrilled.

Sadly, Dr C couldn’t possibly have been more wrong. Everything he told us turned out to be the precise opposite of the truth.

So, to recap, we were told:

  • a) That there was scar tissue in Ann’s heart. There wasn’t.
  • b) That Amiodarone would be an appropriate drug to treat her arrhythmia. It wasn’t.
  • c) That the Bisoprolol had the arrhythmia under control. It didn’t.
  • d) That Ann’s only issue was ‘dodgy wiring’. It wasn’t.

The following day, Ann was discharged.  The only problem apparent at the time was a very stiff and painful right arm resulting from the fact that her cannula had been left in the same site for her entire 9 day stay in hospital (whereas it should be relocated at least every 3 days) and it hadn’t been flushed often enough.

All in all, the experience did not inspire confidence. However, all I cared about just then was that Ann was coming home and would soon be well again. Life would soon be back to normal.

On the way home, I even noticed the pretty countryside.

Ann rested for much of the following week.  I stayed off work for the most part and continued with the daily chores that I had taken on whilst Ann was in hospital. I managed not to destroy any clothes in the washing machine and even became passably competent at ironing.

Exactly a week after her discharge, Ann experienced two major episodes of what appeared to be ischaemic pain (acute central chest pain radiating towards the left shoulder) and racing heartbeat whilst at rest – about 90 mins apart. On both occasions, she was close to losing consciousness and the level of pain was significantly worse than anything she had experienced previously.

We were very concerned of course but you need to bear in mind that our actions at this time were governed by the fact that we had just been assured that Ann had a healthy heart and that her arrhythmia was under control. This early in the story, we still believed most of what we were told. Rather than dial 999 therefore, we telephoned Ward 28 for advice.  We were told they were much too busy and asked us to call back later.  We made several further calls to the ward as requested but none of them were answered.

It is worth saying that over many months, less than 5% of our calls to any part of the cardiology department were ever answered. Some of those were desperately urgent and were made to an emergency number we would later be provided with.  That emergency number was never answered though we had reason to call it many times.

This time, we simply gave up and planned to consult our GP after the weekend.

The next day, Sunday 31st May 2015, Ann seemed much better and so we planned to visit the Waitrose store in Willerby to do a bit of shopping.  As we approached the store, we realised that we were only half a mile from Castle Hill and decided on the spur of the moment to drop into Ward 28 to ask for the advice that we had failed to access the previous evening via the telephone. It would only take ten minutes.

Whilst it was clearly out of the ordinary for a patient simply to turn up like this, we were seen initially by a registrar in the day room.  Ann gave a brief history and as the pain she had experienced seemed to be ischaemic in origin, she was asked about her family history – just as she had been when first admitted on May 15th.  This, just as before, included the fact that her parents had both suffered MIs (myocardial infarctions or heart attacks) in their 50s and 60s.

We were told not to leave under any circumstances and the registrar went to fetch the consultant, Dr D. Dr D, it turned out, was dealing with an emergency case and we ended up waiting five hours to see her – which was fine, we only wanted a bit of advice after all and others needed Dr D far more than we did.

Eventually, Ann repeated her story about the pain and almost passing out and the history and Dr D said that she was immediately re-admitting Ann based on a strong suspicion of a coronary artery issue that had been completely missed on the first admission because the doctors had failed to carry out an angiogram.  The parental history alone, she said, should have been reason enough for an angiogram to be carried out as a matter of course.

The shopping would have to wait. I went home to dig the pyjamas out of the ironing basket and repack Ann’s bag.

Life would not return to normal after all.

Straight to Chapter Three

Chapter Three – Missed Problem

So, Ann was re-admitted on Sunday 31st May. She wasn’t even allowed to go home to collect her own things. She had been out of hospital for only seven days. Now, on top of her arrhythmia, she also had a potentially serious coronary heart issue.

So, as this is another new area of cardiology, it is probably time for another quick medical detour.

There are two main coronary arteries both of which branch from our largest artery, the aorta. These are the Left Main Coronary Artery (or left main trunk) and the Right Coronary Artery. They have nothing to do with the blood entering and leaving heart, they are the arteries that supply oxygen to the heart muscle and are on the outside surface of the heart. Both of these split into two lesser coronary arteries which, between them, supply blood to the heart muscle. So there are four lesser coronary arteries that can become blocked/obstructed or, to use the medical term, ‘stenosed’. This of course can deprive the heart muscle of oxygen and lead to a heart attack or myocardial infarction.

The purpose of an angiogram is to insert a catheter into the top of the cardiac circulation and inject a radio-opaque dye visible on x-ray into these arteries to see if any of them is stenosed.

Ann’s angiogram was carried out the next day by one of the registrars.

As I have already explained, Ann is a dental surgeon. As such, her right arm is rather important to her ability to practice and make a living. Ann also has narrow peripheral blood vessels and suffers from a condition known as Raynaud’s Syndrome – a condition which causes extreme constriction of the peripheral blood vessels in response to cold or emotional stress.  All these facts were made known to the medical team.

Nonetheless, the decision was taken to enter Ann’s heart via the radial artery of her right arm (rather than the femoral artery in the thigh which is larger but more prone to a risk of bleeding).  There were perfectly sound reasons to use the radial route but in Ann’s case, it was the wrong choice. Castle Hill does not possess catheters of different gauge – it is one size fits all.  There are, I believe, narrower paediatric catheters for use in children but Ann was told that Castle Hill didn’t have any.

The result for Ann was that the entire procedure was excruciatingly painful, resulting in spasms of the blood vessels which the local anaesthetic did nothing to reduce.

The findings of the angiogram were that there was some ‘fuzziness’ of one of the two branches on the left side of Ann’s heart – in her case the left anterior descending coronary artery (the LAD) but an on-the-spot decision was made not to proceed immediately with fitting a stent in the affected vessel because the defect was not very clear. Ann’s other coronary arteries were completely clean – in fact unusually so for a woman of her age – which suggested that her healthy lifestyle had been beneficial and that the stenosis is the one blood vessel was more likely to be caused by a minor congenital defect.

In the meantime, Ann was in agony from the pain in her right arm.

She was now under the care of a new consultant, Dr E, one of Castle Hill’s team of interventionists and an expert in angioplasty. Dr E is one of the good guys in our story. He made what we believe is a wrong call (more of that shortly) but I want to record here that there is no doubt that he did so in what he believed to be Ann’s best interests and for very good reasons. He is one of the very few doctors that made himself available to Ann, even when off duty. He was courteous and friendly at all times and was one of the very few doctors who treated Ann as the intelligent, medically-qualified woman she is whereas many of his colleagues treated us both like idiots. He also showed genuine compassion and an absolute determination to make her as well as possible. One would expect this to be the attitude of all the doctors but sadly, it is simply not the case. Dr E, you know who you are. Thank you for your skill and kindness.

Fortunately for Ann, when Dr E reviewed the angiogram, he was not satisfied with the inconclusive results and so ordered a stress echocardiogram to provide additional information.

From the moment Ann arrived for the test, the stress echo staff were unpleasant and dismissive of the need for the test.  They had, I believe, seen the inconclusive angiogram results and, like the ECG nurse at Hull Royal on that first day, they made no secret of the fact that they considered the test to be a complete waste of time. Like the ECG nurse, they were wrong.

To their surprise, and to Ann’s, the test showed a significant lack of perfusion to part of the heart wall.  Some of Ann’s heart muscle wasn’t getting nearly enough oxygen.  The need for the test was vindicated and, to be fair to them, the echo staff did apologise for their earlier attitude.

When the results were discussed with Dr E, he decided to investigate further with an IVUS scope (an intravascular ultrasound probe which produces a three dimensional image of the affected artery) with a view to stent placement.

Ann explained the degree of pain in her right arm during the angiogram and so they discussed going in via the femoral artery route but Dr E dissuaded her due to the increased risk of a bleed. As I have already made clear, I don’t doubt that his decision was intended to be in Ann’s best interests. Nonetheless, it proved to be very much the wrong call.

The following day, Wednesday 3rd June, Dr E carried out the IVUS scope angioplasty – again via the right radial artery – but under sedation to avoid a repeat of the pain of the earlier procedure.

The LAD was found to be stenosed (a cross sectional area of roughly 13sqmm occluded to less than 4sqmm – from memory). As a result, Dr E immediately and successfully carried out a stent placement to restore normal circulation.

After the procedure, a haematoma rapidly developed in the right forearm and it was necessary to place a second pressure cuff to contain it (one cuff is fitted by default to prevent bleeding from the catheter entry wound). When back on the ward, Ann’s right hand was black and blue and very cold so the cuffs were released and one was replaced. Ann subsequently developed extensive bruising from fingers to elbow (more of which later).

Later that day, Dr E informed Ann that the procedure had been a complete success. “You now have the cardiac circulation of a new-born baby”, he told her.

He also informed her that stent was made from Cobalt Chromium.  As a dental surgeon, Ann knew a little about Cobalt Chromium (she makes dentures out of the alloy).  It contains nickel – to which Ann has a hypersensitivity.  That was to cause much confusion and concern in the weeks to follow.

Prior to discharge the following day, Ann was prescribed Ramipril – ACE inhibitor tablets usually prescribed for high blood pressure – but her most recent BP was just 116/68.  She therefore asked to discuss this with Dr D who was back on duty. She explained that in this case, Ramipril was given to support heart muscle but as Ann had not had a heart attack, they were probably unnecessary. They had simply been prescribed out of habit it seems. Ann never took them and had them removed from subsequent prescriptions.

She was also prescribed Ticagrelor (a rather unpleasant anti-platelet medication to prevent re-stenosing of the stent which Ann would have to take for 12 months), Lanzoprazole (to combat the gastric reflux caused by the Ticagrelor – a bit like swallowing a spider to catch the fly), Atorvastatin (an anti-cholesterol drug which had to be taken at an extremely high dose for 7 days then reduced) and soluble Aspirin (to prevent clots).  Of course, she continued to take the Bisoprolol for the arrhythmia. Sorry to go into so much detail here but the drugs are relevant to events that followed.

Her discharge medication now filled a large carrier bag.  For Ann, who hated taking any tablets and usually avoided doing so at all costs, it was all very intimidating.

Ann also had the opportunity of a last discussion with Dr E.  He told to her to expect 24 to 48 hours of mild chest discomfort but reassured her that she would be back in the gym “in a matter of weeks”.  He also told her that she would be discharged with a 7 day Holter monitor and a blood pressure monitor.

As with the previous discharge, all the assurances Ann was given turned out to be false. Neither of the monitors arrived. Six months later, Ann wouldn’t be able to walk unaided for more than a few minutes – never mind return to the gym. But to be fair to Dr E, he couldn’t have known what was to follow.

Only three weeks had passed since I had driven Ann to the ED at Hull Royal that first time. She had already spent 12 nights in hospital and so I had quickly established what became a punishing routine. Ann had by far the worst of it of course, and always seemed to have a smile ready for everyone despite her suffering, but it wasn’t easy for me either.

Mornings were usually taken up with washing and ironing and shopping for items Ann had requested – face wipes, books to help her pass the time or gluten-free snacks. Ann had been on a gluten free diet for many years and gluten free meals provided by the hospital were also dairy-free, nut-free, taste-free and, basically, nutrition-free. If Ann was to get better, she needed far more nutrition that the hospital was providing. I would make up nutritious salads and buy blueberries and raspberries to supplement the limited supply in hospital.

Then there was the organising of hospital visits by friends and family. Sods law would dictate that everyone would want to visit her on the same day and so I became chief choreographer, shuffling people around such that Ann had visitors most of the time but not too many at once.  It was almost a full time job by itself requiring dozens of texts and telephone calls. Then there were the get well cards to open (she would get over 100) and finding vases for the continuous flower deliveries. Eventually, the house looked like a florists (flowers are not allowed in cardiology so I couldn’t take them in). They were everywhere. I confess that I came to hate flowers with a passion and now avoid buying them whenever I can.  It felt like the doorbell would ring every 15 minutes with yet another bouquet turning up.  It was a sign of the considerable love people felt for Ann of course but for me, it became a curse and a source of considerable stress.

I also had to deal with Ann’s colleagues at work who were covering her dental patients.  They had to be kept informed and I would meet with them to plan the next week as her return to work got further away rather than closer. They were fantastic throughout but at this stage, were blissfully unaware that the return to work would be more than a year away.

Afternoons comprised the first of two visits to see Ann, complicated by the constant battle to maintain a pocket full of pound coins to feed that car park machine (I would spend nearly £500 in it eventually!) followed by a daily dash to the supermarket to buy something simple for my dinner, plus milk, catfood and any other essentials – and beer. Lots of beer.  I rarely managed breakfast or lunch at all.  There simply wasn’t time.

By the time I had returned home and unloaded my shopping into the fridge and dealt with any new cards and flowers left with numerous neighbours, I was usually late for the evening visit so I would simply turn straight around and go back to feed the car park machine. When I finally got home, I would have masses of text and phone messages asking after Ann and it would take an hour just to deal with these.  Eventually, I took to writing one long text message to explain everything that had happened that day and sending it to dozens of people at once.  It is these messages and the ones Ann and I sent to each other that have allowed me to recall such a detailed account of what took place.

I soon got into the habit of choosing evening meals that could simply be placed in an oven for half an hour and eaten out of the foil container. Consequently, I got through a lot of lasagne and shepherd’s pie. Cooking a proper meal (which I normally love to do) was out of the question. So, I would arrive home, throw my foil dish in the oven, crack open a cold beer, and then begin my lengthy text bulletins – the ‘Annograms’ (or equivalent with her real name) as they became known. By the time I had eaten, and had another beer, it would be time to go to bed. I was exhausted by then anyway and so, despite all the worries about Ann back at the hospital, I would usually fall asleep instantly, occasionally with one leg still on the floor. Other nights, I would stay awake most of the night, worrying about Ann and unable to suppress my anger at the injustice of it all.

Meanwhile, I was barely getting to work at all. I was supposed to be busy with a very major building project that was in the critical ‘construction drawing’ stage. That is to say that the design was more or less complete but the team was flat out preparing the drawings that the contractors would use to build the project.  It was a time when I needed to be there as much as possible and my absence was causing real problems with progress.  It was just another layer of stress to add to all the others. It wasn’t long before I started to feel unwell myself and I came to understand what an incredibly tough job so many carers do, some for years on end.

But I was always reminded that Ann was suffering infinitely more than I was and if I could have changed places with her and become the patient to end her suffering, I would have done so in a heartbeat (possibly a very fast one).

Anyway, enough of that. Back to the story. Ann had been discharged again and so my tough routine was at an end – or so we thought. Ann’s suffering wasn’t.

Two days later, Saturday 6th June, Ann was unable to attend a planned social event with the family as the chest and arm pain had become too severe. The bruising by now had extended from wrist to elbow and she had loss of sensation near her wrist.  She was completely unable to straighten her arm and was becoming very concerned.  By now, according to the advice given by Dr E, the chest pain should have stopped altogether but was in fact getting much worse.

The next day, Ann went to see our GP because of the persistent burning chest pain which had continued without respite since the procedure had been carried out – and so had the acute arm pain.  She also raised the issue of general muscle pain (a known side effect of the Atorvastatin).

It soon became clear that the information provided to the GP in the discharge letter was at odds with the information given to Ann.  Ann had been told to titrate DOWN (reduce) the Atorvastatin after seven days as she would struggle to tolerate the drug.  The discharge letter said the exact opposite and instead told the GP to titrate the dose UP!  One of the two was clearly wrong. Quite how the hospital had managed to be so utterly incompetent I can’t begin to guess.

As a result of Ann’s alarming state of health and the dangerous contradictions in the information provided by Castle Hill, the GP faxed an ‘urgent’ list of questions to Dr E.

No reply was received (just an acknowledgement of receipt).

The GP favoured Ann’s version of what should be done and ignored the discharge letter. The Atorvastatin dose was (correctly as it happens) reduced from 40mg to 10mg to alleviate the muscle pain. And it worked. That left the chest pain and the arm pain which were still very much there.

On Friday 12th June, Ann tried to call Dr E’s secretary to chase a response to the GP’s fax.  The line was on answerphone every time, with no message facility. That weekend, we were due in London to see our son.  Ann was unable to travel because the chest and arm pain was still much too severe.

On Monday, I returned to work. The GP had still received no reply to the ‘urgent fax’ to Castle Hill.

Ann tried again to call Dr E’s secretary but this time, there was an automated recording saying that they were unable to answer due to a technical difficulty, and “please try again tomorrow” – which is exactly what Ann did. On Tuesday, she made 6 further telephone calls to Castle Hill.  She eventually got through to Ward 28 and when she tried to explain about the chest and arm pain, she was simply told that she just needed to relax! Without seeing Ann, and having just been told that Ann was suffering from acute chest pain, the nurse simply concluded that Ann was suffering from anxiety.  It beggars belief! I can guess which nurse took the call. We will meet her in later chapters.

When, later that day after several more attempts, Ann finally managed to get to speak to a secretary about the urgent fax, she was informed that Dr E would not be doing any admin work for the next month!  An urgent fax from a patient’s GP was going to sit in the in-tray for a month. To the best of my knowledge, no reply was ever received.

On the Wednesday, the chest and arm pain was still no better. By now, the arm was looking dreadful – strange purple lines covered the forearm with a blue-green background colour from wrist to elbow (see photograph left). Ann couldn’t even feed herself properly, I had to cut up her food for her.

As she was experiencing such difficulty trying to talk to anyone via the NHS systems, in desperation, she resorted to trying to arrange a private appointment with Dr E. She eventually established that Dr E didn’t do private work and so she tried Dr C whom she had met prior to the first discharge. He had no free appointments before July 9th so eventually, she managed to secure an appointment with another of the interventionist consultants, Dr F.

For that, a GP referral letter would be required. So, on Thursday, Ann discussed the need for a referral letter with our GP.  The GP agreed to provide the letter and also agreed that a private appointment was a good idea in the light of our inability (and the GP’s inability) to establish any meaningful communication with the cardiology department.

The following day, Friday 21st June, Ann was still unable to speak to anyone for advice despite multiple further attempts to call the ward and Dr E’s secretary.

That day, a friend dropped in to see Ann whilst I was at work.  The friend was so horrified by Ann’s condition that she insisted on driving Ann straight to the ED at Hull Royal.

There, the staff did an ECG and ran an enzyme test for troponin. The use of ECG and troponin tests will be discussed in much greater detail later. Both are very effective in establishing whether a patient has had a heart attack but are, more often than not, profoundly useless for a patient with known arrhythmia. The problem is that clear ECG and troponin tests provide false reassurance and suggest that the patient isn’t in danger. For arrhythmia patients, they tell you nothing at all.

Nonetheless, the staff were very helpful – in particular, an ED nurse, Nurse A, who deserves our sincere thanks for his excellent care. He will appear again later in the story.

Nurse A tried to raise Dr E on the telephone.  Dr E returned the call shortly afterwards and spoke to the registrar and then to Ann directly. He was even kind enough to give Ann his mobile number – which was very probably against protocol but was in fact a rare and much appreciated act of kindness after Ann’s inability to speak to anyone for so long. Dr E also called Ann over weekend with the troponin test results – which were, as expected, completely normal.

Now that a line of communication had finally been established, Ann decided to cancel the private appointment with Dr F.

After the weekend, an appointment arrived for the fitting of the Holter monitor on the 2nd July (the same monitor that should have been fitted before Ann was discharged).  It stated that the monitor would be worn for just 24 hours instead of the required 7 days! It seemed to us that the administration at Castle Hill was utterly incapable of getting anything right at all.

Between the 24th June and 30th June, we managed to take a short holiday in Herefordshire which had been arranged and booked before this tale begins.  Because of Ann’s state of health, we couldn’t do very much but, in a sense, that was exactly what we both needed.  She did manage to take short walks with me but experienced continued persistent arm and chest pain.  The arm pain and immobility was so serious that I still had to cut up cut up Ann’s food for her at every meal time.  Given that we were staying in hotels, this was an uncomfortable experience for Ann.  Other guests must have wondered why an attractive and apparently healthy woman was being fed by her husband at meal times.

After the holiday, Wednesday 1st July was the day that Ann had been due to return to work. As she was still unable to use a knife and fork, root fillings were out of the question.

Instead, Ann attended an outpatient clinic at Castle Hill and was seen by Dr B, the electrophysiologist who had carried out the earlier EP Study.  It was in fact the routine recall following Ann’s first discharge. Dr B dismissed the chest pain as insignificant and said that the arm pain “Wasn’t my fault because I went in through the femoral artery”!  He said that there was vascular and possibly neurological damage – probably in the shoulder area – but as it wasn’t his problem, he expected it to be discussed with Dr E. As it happens, we were due to see him within 24 hours.

2 out of 10 for empathy on this occasion then. Dr B’s compassion skills are not highly developed..

The next morning, Thursday 2nd July, Ann was fitted with a Holter monitor which we managed to get changed from 24hr back to the original 7 days.

Later in the day, I went with Ann to an outpatient appointment with Dr E.  There, we discussed the possibility of a hypersensitivity reaction to the nickel content in the stent as a potential explanation of the continued chest pain (which, according to Dr E’s earlier assertion, should have ceased four weeks before).  He dismissed this as highly unlikely because there was no rash or breathing difficulties (even though Ann’s standard contact dermatitis reaction to nickel is burning pain and blistering, not rash or wheezing).  As it happens, Dr E was subsequently proved right. The chest pain had nothing to do with the stent.

Dr E also confirmed that the troponin levels found in the test carried out at the ED were normal so he concluded that there were no concerns with the stent placement. No alternative explanation of the chest pain was offered.

With regard to the chronic arm pain, he said that there was good perfusion so there couldn’t be any damage to the radial artery and he undertook to arrange an appointment with orthopaedics because there was probably an underlying soft tissue problem.

Scepticism was setting in by now. I’m afraid that neither of us believed a word of that.  The promised orthopaedics appointment didn’t materialise either, which only served to reinforce our incredulity.

Dr E also said however that he would try to arrange an urgent physiotherapy appointment.

A few days later, Dr E telephoned Ann (and getting phone calls from a consultant was a real breath of fresh air I can tell you) to say that the physiotherapy appointment would be at least two weeks away but he gave Ann the contact number so she could chase it up herself.  It was all but impossible to get through (as ever) and she eventually left a message.  By the time they returned Ann’s call several days later, she had already given up and had arranged a private appointment.

That day, we also returned the Holter monitor.  We were told to expect the results in 6 to 8 weeks! So, Ann was suffering from unexplained chest pain and she might have to wait the best part of two months to receive any useful information which might help to identify the cause. It would take one minute to download the data but 8 weeks to tell Ann what it said.

On Thursday 9th July, Ann got through to the pacing clinic at Castle Hill at the 23rd attempt that day (really, she was counting) and was able to explain to them the spectacular depth of their latest administrative ineptitude.  She had received no less than 3 additional and spurious appointments for fitting a 24 hour Holter monitor, each containing the threat that if she didn’t turn up to have the monitors fitted, she would receive no further treatment!

So, Ann would be denied treatment if she didn’t show up – not once but three times – to needlessly repeat something that had already happened.  By now, even this crass stupidity no longer surprised us. The administrative staff at Castle Hill it seems, would be incapable of finding their own backsides in a dark room.

They weren’t the only ones.

On Monday 13th July, Ann had an appointment to attend the private physiotherapy appointment and the mobility in her arm had improved just enough for her to drive herself to the appointment. The physiotherapist was at what appeared to be a semi-derelict industrial estate in East Hull. The appointment had been arranged through our insurers, Vitality Health.  Now Vitality are one of the most incompetent health providers in the market and I had had many run-ins with them in the past (so much so that I already had the email addresses of several of their managers) but here, they had really excelled even their usual low standards. Apparently, Vitality don’t actually visit the physiotherapists and other service providers to whom their customers are sent. The photographs tell part of the story.

What they don’t tell is that the physiotherapist in question did not even have a waiting room. Patients have to sit on a solitary chair in the stark corridor outside. The lights are on motion sensors so that when the patient does sit down, they are plunged into darkness!

It would be hysterically funny if it wasn’t so pathetic. In the end, because she was worried that her car would be dismantled whilst she sat in the pitch black corridor, Ann left without even being seen by the physiotherapist. So much for private health insurance.

After a few very heated calls with the idiots at Vitality and a threat to send the photographs to the national newspapers, Vitality finally agreed that Ann could see a competent physiotherapist the following day near to our home.

He confirmed that there was indeed extensive vascular damage throughout length of Ann’s arm plus some neurological damage to her forearm.  He also thought that it would take at least three weeks of two sessions a week of intensive treatment before Ann would be able to resume work.

Ann was at this point still unable to straighten her arm fully (she normally has a hyper-extended elbow joint).  She could manage to drive short distances but was still unable to work.  Quite apart from the pain and suffering, the delay was costing thousands of pounds in lost income and locum tenens costs (payments to other dentists who were seeing Ann’s patients).

In the end, it was to be a further two months before the severely damaged arm was almost back to normal though even today, two years later, Ann still cannot get the top off a bottle of mineral water.

Ann did manage to return to work very briefly in early August, but she was only able to carry out dental examinations.  She was still unable to undertake treatments because of the damage to her arm. I say ‘very briefly’ because there was more to come.  Much more. If you think her experience so far in this story has been pretty awful, it was a piece of cake compared to what came next. The story so far was just the prologue and had it ended here, I wouldn’t be telling it at all.

Because in August, things got really bad. So bad that the next chapter is going to be very hard to write because of the awful memories it will rekindle. The Trust’s treatment of Ann – or in this case, their failure to provide treatment – very very nearly cost Ann her life.

Proceed straight to Chapter Four

Chapter Four – Cardiac Arrest

This is where the tale starts to get really serious.

During July, Ann had been in touch with Dr E again about the continued chest pain and he had arranged a stress echocardiogram for Tuesday 18th August to check the cardiac circulation.  The intention was to follow that with a repeat angiogram if necessary to demonstrate that the cause of the chest pain lay elsewhere.  Dr E advised Ann to stop taking her beta blockers a few days before the echo. The first dose she didn’t take was Saturday evening, 15th August.

That same evening, we joined some friends for a curry at a restaurant in Market Weighton.  Our table wasn’t ready when we arrived and so we all took a seat in the waiting area. A few minutes after we arrived, Ann experienced a very severe arrhythmia episode.  This was only an hour or two after the beta blocker dose had been due so that is very unlikely to be the primary cause.

There was a partial loss of consciousness (her head fell to her chest and she started to slide out of her chair). She was experiencing violent palpitations, clammy skin and central chest pain.  It was patently obvious that there was a very serious problem with Ann’s heart.  It was terrifying.

An ambulance was immediately called.  An emergency responder was there in a couple of minutes, followed by a paramedic and then the ambulance itself.  The speed of their arrival was extremely impressive and all the paramedics were calm, professional and caring. I couldn’t fault them.

Ann was treated for 25 minutes at the scene and then rushed to the ED at Hull Royal Infirmary. I rode with her in the ambulance.

There, she was taken straight through to a cubicle in Majors where blood was taken for the inevitable Troponin test and she had the first of a number of ECGs.  At the time of the ECG, her heartbeat was pretty much back to normal and, of course, the Troponin test was clear.

I was allowed to join her in the cubicle after waiting 90 minutes in the lobby.  Ann was NOT attached to a heart monitor – then or at any time during her stay in the hospital – even though there was one right beside her bed. It would have taken just two minutes to attach her to the potentially life-saving machine but they simply didn’t bother – even though she had experienced a potentially life-threatening tachycardia episode the last time she had been there in identical circumstances.

It is worth labouring the point here that Ann had been rushed in with a KNOWN diagnosis of arrhythmia.  As such, she was at far more risk of a cardiac arrest than a heart attack. The two are completely different. Arrhythmia is by its very nature, irregular and episodic.  If you take an ECG, it is most likely that you won’t see it at all.  Troponin levels are generally unaffected (Ann has never had an abnormal Troponin result). These test are appropriate for heart attack, not for a patient at risk from cardiac arrest – other than for elimination purposes. It was right that these tests were done because Ann did have chest pain, but to leave it at that?! Ridiculous.

The following passage comes from the British Heart Foundation website:

“What’s the difference between a heart attack and cardiac arrest?

Although a heart attack can lead to a cardiac arrest, they are not the same thing.

A heart attack is a sudden interruption to the blood supply to part of the heart muscle. It is likely to cause chest pain and permanent damage to the heart.  The heart is still sending blood around the body and the person remains conscious and is still breathing.

A cardiac arrest occurs when the heart suddenly stops pumping blood around the body.  Someone who is having a cardiac arrest will suddenly lose consciousness and will stop breathing or stop breathing normally.  Unless immediately treated by CPR this always leads to death within minutes”.

The most common cause of cardiac arrest is not a heart attack, but arrhythmia.  At least 75,000 people die in the UK each year as a result. Ann had experienced a dangerous episode of arrhythmia – very probably ventricular tachycardia – and she was at risk of cardiac arrest. Only one in ten people survive an out of hospital cardiac arrest. It was essential that Ann’s condition received medical attention. It could be a matter of life and death.

What Ann needed (as demonstrated by the insightful Dr A at Ann’s first ED visit) was constant monitoring and vigilance because arrhythmia can suddenly change from completely absent to life-threatening in the blink of an eye.

Constant monitoring and vigilance is exactly what Ann didn’t get.

In fact, she didn’t even get seen by a doctor.

On Ann’s first admission, they had done everything right even though there was no previous history.  This time, they were doing everything wrong even though they knew of her arrhythmia.

After we had been there a couple of hours, I tried to raise the complete absence of medical attention with a member of the ED staff behind the desk.  I approached someone, a nurse presumably, sitting there at his keyboard and stood in front of him waiting for him to raise his head and acknowledge my existence.  He decided to ignore me.  His eyes remained stubbornly fixed on whatever it was he was doing on his computer screen.  By staying there, I tried to make it clear that I would wait it out.  He on the other hand was going to continue to ignore me even though it was blatantly obvious I was waiting for the traditional “Can I help you?”

Suffice to say, even after I said “Excuse me please” a number of times, he continued to act as if I simply didn’t exist.  In the end, I had no chance but to walk away – which was exactly what he wanted me to do of course.

Rudeness like that takes enormous effort. Going out of your way not to help someone in genuine need goes beyond negligent to plain nasty.

Meanwhile, across the hall, a prisoner who was hand-cuffed to his trolley was able to continue to make obscene gestures towards Ann – including simulated masturbation – with impunity for hours on end in full view of the staff.  No-one closed the curtain on either cubicle. No consideration was shown by any member of the nursing or medical teams.  No one gave a damn about the obvious distress it was causing.

I can’t begin to describe my frustration and anger. I knew perfectly well that Ann was seriously ill and I simply couldn’t believe that she was being completely ignored. The entire scene was beyond comprehension.

Midnight came and went. I made a number of further attempts to get help but without success.  It was only when I had had enough of being ignored and explained very loudly that my sick wife hadn’t even been seen by a doctor after four hours in the unit that someone finally looked up and, grudgingly went off to find us a medic.

Dr G arrived a few minutes later (and four hours after Ann entered the Majors Unit) radiating indifference.  Clearly irritated that she had been summoned, she explained that the Troponin levels were normal so Ann hadn’t had a heart attack – which of course we knew already.

We explained again about Ann’s history of arrhythmia and the serious episode in the restaurant when she had partially lost consciousness but despite this, Dr G still didn’t see fit to attach Ann to the monitor which sat unused just a few feet away.  She did eventually contact cardiology and asked for a cardiologist to see Ann – or so she told me.  She also told me that the cardiologist had refused to see Ann and, presumably, gave his recommendations based on their telephone conversation.  Those recommendations apparently didn’t include a heart monitor for a dangerously ill arrhythmia patient.  Or perhaps Dr G just ignored the recommendations.  Or perhaps she never sought any.

Those who have read the earlier chapters will know that The Cardiology Department in this Trust is about 6 miles away at Castle Hill Hospital in Cottingham. More often than not, there are no cardiologists on hand at Hull Royal. I assume that this was also the case on this occasion. Hard to believe I know, but that is how it is. Perhaps the cardiologist didn’t fancy the drive over. We will never know.

Either way, the monitor stayed dormant right beside us.

Throughout our brief exchanges, Dr G was curt bordering on the aggressive and displayed all the compassion of Attila the Hun.  She really was very unpleasant and seemed to me to be trying to make us feel like we were wasting her valuable time.

It was becoming a familiar pattern. Ann’s outward healthy appearance was becoming a real problem. That, and arrogance. Arrogance that makes medical staff assume that you are exaggerating, mistaken or making it up. Arrogance that labels patients as time wasters.

I know of course that an ED on a Saturday night/Sunday morning is Hell on Earth.  I think it must be extremely tough to work in that environment and I have every sympathy with the staff.  I was later assured that Dr G is a very capable, experienced and conscientious doctor and that her behaviour that night was very out of character. I don’t doubt it. BUT, there was absolutely no excuse for what was happening to us. None whatsoever.

As the medical team had chosen not to look for any arrhythmia, they couldn’t possibly find any and so Ann was transferred during the night from Majors to AMU (the Acute Monitoring Unit – one step down in the urgency chain) and eventually to ACU (the Ambulatory Care Unit – two steps down and for the walking wounded as the name suggests) at 9.00am.

At midday on the Sunday, Ann saw the senior registrar who asked Ann to wait and see the cardiologist.  However, as the previous night, the on-duty cardiologist (presumably still back at Castle Hill) once more failed to turn up to see her.

I went to ACU to collect Ann just after lunch.  There, we asked to see a doctor to express our concern at the lack of monitoring and complete absence of treatment following last night’s emergency admission.  Instead, we sat down in a private area with one of the senior nurses. The nurse told us that the cardiologist had concluded that Ann’s problems were not heart-related.  Quite a conclusion when the cardiologist hadn’t even bothered to examine the patient!

“Not heart related? What about that tachycardia? What about the Arrhythmia history? That’s bullshit!” I said angrily – and the nurse actually threatened to have me thrown out for swearing!

God give me strength!

Eventually, the nurse fetched one of the registrars to hear our concerns. Ann asked what she should do about the Bisoprolol given that she was being discharged with continued chest pain and arrhythmia.  He told her that if she could tolerate the symptoms, then she could continue to go without the beta blockers so that her scheduled echo with Dr E could go ahead as planned.  In the meantime, he prescribed GTN tablets (glyceryl trinitrate – a vasodilator used to treat angina, which Ann didn’t have) and with that, Ann was discharged – by a gastroenterologist (Yes, really, a doctor specialising in the digestion) – and we were sent to the hospital pharmacy to collect the prescription.

It was closed, naturally.  We got the tablets at ASDA.

 

Five hours later, Ann had a cardiac arrest.

She had decided to take a bath before dinner to unwind from her dreadful experience. I was in the study (which is also upstairs) and when she was ready to get out, she called me saying that she was feeling a bit light-headed and was worried she might slip. So I went to help her get out safely.

As she climbed out with my arms under hers, she suddenly said she was going to pass out so I started to lower her onto the WC.  There, the colour simply drained from her and she put her hand to her chest saying “Oh my God! My heart’s going crazy. My heart’s going crazy!”

Then she died.

Literally.

She went limp and started to slide off the toilet.  I held her there, half on and half off the loo, a floppy, dead weight. I could see that she was already changing colour. Her face and especially her lips were already going grey-blue and her whole body was getting paler. Her eyes were wide open, staring into nothing, her pupils were fixed and fully dilated.  Big black holes. For some strange reason, it was her tongue that distressed me the most. Her jaw was slack, her mouth wide open and her tongue was fully lolling out of her mouth and hanging down the side of her jaw. It was like the worst possible nightmare – and believe me, it has been the subject of many nightmares since. I shall take that image with me to the grave.

I had seen a few people die and I knew exactly what I was seeing. I felt utter, undiluted terror!

I picked her up and gently lowered her to the floor. She just lay there, naked, dripping wet – completely inanimate.

“She can’t be dead, she can’t be dead” my mind was screaming at me. “Check if she’s breathing! Make sure she has a clear airway!”

I put a towel under her neck to maintain an airway. Her chest wasn’t moving at all.  I put my face up to hers. No air movement. Not a sound. No breathing at all. Nothing!

“Check for a pulse!” my sub-conscious shouted. There was no pulse at her wrist.  I tried the carotid pulse at the neck (not that I knew the right place to check). Nothing.  I listened to her chest. Nothing. No heartbeat. No breaths. Sometimes when she was in tachycardia, the pulse is so fast you can barely feel it.  I concentrated and tried again to find a ‘thready’ pulse.  Nothing. Not a glimmer.

She had gone.

Oh my God! Oh my God!!

“Please don’t leave me. Please don’t leave me, I’m not ready!” Not the voice in my head this time, but me screaming at the top of my voice as the tears poured down my face. “Don’t leave me. I’m not ready. Don’t leave me!” I couldn’t stop saying it.

Ann did a CPR course every year as part of her job and she had insisted on teaching me the basics but it had been ages.  Would I remember? I knew it was the only option I had left.  What should I do, call 999 or give CPR? You’re supposed to have two people, one to make the call and one to do the CPR.

Oh shit shit shit! Decision! Decision!

Either way, I was going to need a phone which meant leaving her. How could I leave her like that – cold, wet, naked, dead. On the floor. Alone. No choice! I sprinted to the study and grabbed a phone. Back to the bathroom, threw the phone on the floor.  How long had it been? One minute, two minutes? Probably just one. She was a horrible colour. The tongue was still hanging down the side of her face. The eyes were still staring – huge black pupils.

Pure terror. “Don’t leave me. Please don’t leave me!”

Decision made. CPR first before it’s too late, then call 999. They’ll be able to tell me if I’m doing anything wrong.

So I did what she had taught me.

And bless her, she came back to me. She blinked at me and took a huge breath.  The colour flooded back into her lifeless body. More tears, this time tears of unmitigated joy.

“I have to call 999!”

She looked at me. Blinked again.

“I have to call 999”

“Why am I on the floor?” Oh God, she can talk! Utter joy and stratospheric relief!

“Oh fuck, I actually did it!”

“What?”

“I have to call 999!”

“NO!”

“You’ve just arrested for crying out loud, I have to call 999”

“Arrested? ….No! I’m not going back there!”

“For God’s sake, you just had a bloody cardiac arrest!”

“I… AM…. NOT… GOING… BACK… TO… THAT… PLACE!”

We actually argued. Me on my knees with tears still streaming down my face and her on her back on the floor having just cheated death. We had a row. She had been treated so badly at the ED that she was refusing to go back even when her life probably depended on it. It was the most surreal scene I could ever have imagined.  I wanted to laugh out loud at the ridiculousness of it all.  And the relief. I desperately wanted to laugh my head off in relief.

To this day, I have no idea whatsoever why I took any notice of Ann’s plea not to call the ambulance but I didn’t make the call. Can you believe that?! Ann insisted that I called our dear friends instead (the ones who had been at the restaurant 48 hours earlier) and I actually did as I was told.  Looking back, it seems insane but my mind was in turmoil. I wasn’t capable of a rational decision. I needed calmer heads in the room.

Fortunately, our friends were there in minutes. As soon as they let themselves in I quickly explained what had happened and my friend called 999 immediately.

The first responder was there perhaps three minutes later, then a paramedic and finally the ambulance all arrived extremely quickly. Together, they treated Ann where she lay for the best part of half an hour.  Finally, they got her stable, got her into some clothes and took her back to the ED with me at her side.

I have to say that the all the paramedics that have attended Ann on all three call-outs (there’s still one to come) have been utterly outstanding.  The combination of expertise, calmness and even humour is such a welcome boost when you are at your most scared and vulnerable.  I cannot praise them enough.

They should give lessons to doctors.

On arrival at the ED this time, Ann was a ‘return-within-24-hours’ so she was spoiling the hospital statistics.  As a result, there was a complete transformation in attitude upon our arrival at the ED.

Ann was admitted straight into Resus and the contrast in care compared to 24 hours earlier could not have been more dramatic.  Obviously, the first thing they did was attach Ann to a cardiac monitor.

The consultant, Dr H in Resus that night was nothing short of heroic.  Professional, calm and yet still managing to be funny, he was looking after Ann as well as a poor girl in the cubicle opposite who had survived an attempted suicide jump from the Humber Bridge with appalling multiple injuries. Her back was broken in two places, she had a ruptured spleen that needed urgent surgery and a dislocated shoulder plus God knows what else they hadn’t found yet.

Ann was stable thanks to the ambulance crew so Dr H’s priority was the seriously ill young woman across the corridor but he still found time to keep us updated and visited Ann regularly. If you’re reading this Dr H and remember that night, thank you so very much for everything that you did. The Trust needs many more like you.

This time there was no question, the transfer to Castle Hill that should have happened the day before and could have prevented the cardiac arrest would happen this time. I was sent home just before 4.00am when they were satisfied that Ann was out of immediate danger and she was transferred back to Castle Hill Cardiology CMU soon after.

When I got home, I was exhausted. Numb.

It was already daylight. I noticed for the first time the muddy footprints from the front door to the bathroom left by the paramedics.  The place was a mess.  Upstairs, wet towels and Ann’s clothes were scattered where they had been thrown out of the bathroom whilst they treated her. The little clear plastic peel-off patches from the ECG electrodes and defibrillator pads seemed to be everywhere. I don’t know why, but I couldn’t bring myself to clear up.  The mess stayed there for the best part of two weeks. I just couldn’t touch it.

The debris of the emergency. It brought home to me how very close I had come to losing my soul mate, lover and best friend. How must Ann be feeling? Alone in the hospital again. Scared? She must have been terrified. Angry that they had brought her to this? Definitely.

I decided to have a shower to see if that would miraculously wash the awful emotions away. After a minute, I just collapsed into the shower tray.  There I lay, curled up into a ball,  sobbing uncontrollably until the hot water tank was exhausted and the cold water forced me to move again and make my way to bed for a couple of hours sleep.

Would this mean that the ordeal was nearly at an end? Surely now, they would have to make her well?

But it wasn’t at an end.

No.

Ann’s ordeal had barely started.

Go straight to Chapter Five

Chapter Fifteen – How is Ann Now?

Many people who have been kind enough to read the story have asked through the Facebook page and Twitter how Ann is today, after all that she went through. So, this chapter is for you. Here, I provide an update on Ann’s progress since the third implant procedure in Newcastle.

We have already heard about the remarkable improvement that followed the re-positioning of the ICD in Newcastle and how Ann was able to take her first hike in the country when we visited Cornwall in June 2016 and could hold our newborn grandson following his birth later the same month. Before we resume that narrative however, I would like to indulge in a brief detour on a different subject – me.

AS we enter the summer of 2016, with Ann was more stable and beginning to resume a more normal life, I made the overdue admission to myself that I too had been severely damaged by the events of the previous fourteen months. Caring for Ann through the worst of the effects of her treatment and fighting on her behalf for an appropriate response from the Trust had taken its toll. The resuscitation from the cardiac arrest was never far from my mind. Waking up every hour through the night and immediately checking that she was still breathing lasted for months on end before I was able finally to relax a little and sleep reasonably well.

For over a year, I had tried – and mostly failed – to balance my work with the demands of being there for Ann. At work, income from my clients had effectively dried up altogether and I struggled to keep live projects moving forward. I had not been there when my team needed my direction and the consequences were now showing themselves. The business had lost perhaps £300,000 in new project income as a result of my prolonged absences and the remaining work was not running smoothly. My colleagues were wonderful and completely understanding but knowing that my absences had damaged the business was a further source of enormous worry and stress for me.

Worst still was a feeling that in many respects, I had ceased to exist. That is to say, I spent my every waking hour being either Ann’s carer, or an ineffectual boss, or a part-time parent and son but there had been no time left at all just to be myself. The demands on my time were so unrelenting that I never did anything that wasn’t for someone else. I felt as if the private me, the me that existed inside my head, had simply been extinguished.

I came to resent it. And resenting it felt self-indulgent and so I felt guilt on top of the resentment. And anger. I still couldn’t shake the livid anger I felt towards the Trust and the medical staff who had harmed Ann and then simply walked away from her.

Resentment, guilt and anger was a toxic combination. I was falling apart.

So in July 2016, I decided to seek professional help – something I had never done before for a non-physical condition. I began weekly counselling sessions which I arranged privately rather than through our GP.

I learned that I was displaying all the signs of Post Traumatic Stress Disorder (PTSD), the same condition that is so often suffered by soldiers after combat tours. I certainly felt like I had been through a war. Bringing Ann back from the cardiac arrest was identified as the most traumatic single event but it was the complete absence of any activity for myself which was identified as the main cause of my ongoing difficulties. I had been so focused on Ann and her health for so long that I had neglected myself entirely.

Talking about what had happened with someone who had not been involved made an enormous difference. I was able to vent my frustration with full full force and without fear of judgement. There had even been times when I wanted to be critical of Ann but I couldn’t countenance doing so when she was so unwell but now I could express those feelings for the first time and nobody was going to get upset. In only a couple of sessions, I tipped an entire truckload of mental detritus onto the counselling room floor.

And God, it felt good.

I was advised to fight for personal space at all costs, even if that was at Ann’s expense occasionally. I had to refuse as many requests for help as possible and create time which was mine and mine alone. So, I took myself (and my old two-seater sports car which hadn’t been driven even once since Ann had been taken ill) off to the Yorkshire Dales for a few days of hill climbing and solitude. It was the first time I had left Ann behind apart from when work had required me to do so. I pushed myself hard and walked further and higher than I had planned. Being utterly alone up on the moors with only the silence for company was beyond wonderful. It gave me the chance to think at last, to look for the positives amongst all the negatives and look at what had happened to us from a new perspective.

I resolved to do everything I could to ensure that others didn’t have to follow Ann’s journey. I would not allow the Trust to walk away and not learn from its mistakes. But I would not do so at the expense of my own peace of mind. I would allow myself to be selfish occasionally and ensure that I created a bit of ‘me time’ every so often.

I returned refreshed and restored. The trip, and the other counselling sessions that followed, brought me back to myself. I became more effective at work, less prone to outbursts of anger and generally more at ease. It also taught me a profound respect for other carers. My time caring for Ann was relatively short. Others end up caring full time for relatives, some of whom have lost their mental faculties, for years on end and most do not have the opportunity for country breaks or counselling. Oh, how I understand their burden now. It must often be unbearable.

Thank you for allowing me that little excursion. Now, back to Ann:

July 2016 was also the time for Ann’s first recall to the Freeman Hospital following the corrective surgery in May where she saw one of Dr S’s senior registrars. She was able to tell him that whilst there was still residual pain, the intensity had reduced significantly. As a result, Ann had been able to reduce the dose of Pregablin gradually since the operation and was now at roughly half the original dose. That meant that the cognitive side effects had diminished too and her memory and ability to concentrate had improved.

She underwent the usual tests and nothing of major concern was found. For cardiologists reading this, Ann’s ECG confirmed that Ann was receiving atrial pacing at 65BPM from the ICD but had first degree AV block and longstanding right bundle branch block (RBBB – which we had known about for some time). Neither was a worry. ICD interrogation revealed no significant arrhythmias. She was very stable.

However, she had developed a persistent cough and she believed that this was caused by acid reflux (dyspepsia) and she discussed this with the doctor. Ann was prescribed Lansoprazole and was advised that if the symptoms didn’t improve, she would need see her GP to arrange an endoscopy referral.

The following week, at the end of July 2016, Ann finally returned to work after a fourteen month absence. Her fellow dentists had covered her patients for the entire period. They had been kind, understanding and supportive throughout and we owe them a huge debt. Ann started working just two days a week but soon increased to her usual three days. That meant working two days consecutively (her surgery days were Tuesday, Thursday and Friday, one of the other dentists used the same surgery on Mondays and Wednesdays) and it soon became clear that she couldn’t cope. She needed at least a day to recover from a day with patients or the chronic pain at the implant site quickly returned. It was soon agreed that from now on, Ann would only work two days. So, as well as the loss of income caused by her prolonged absence, she would also have the ongoing loss of income caused by the reduced working week. Nonetheless, that wasn’t really important. She was back at work at last.

She had survived and returned. I can’t begin to tell you what a relief that was for both of us.

In September 2016, we took a week’s holiday in Cyprus, where we did almost nothing at all!  We enjoyed evening walks along the waterfront and charcoal-grilled fresh seafood at restaurants overlooking the sea but otherwise, we just lay in the sun with our nose in a book and recharged our batteries.

The cough and the acid reflux were still there though and the Lansoprazole had done little to relieve it. The pain caused by the reflux is also similar to cardiac chest pain so it was important to establish a cause and, if possible, eliminate it. So in October, Ann had the endoscopy.

It was discovered that Ann’s Lower Oesophageal Sphincter (the circular muscle that closes the top of the stomach and prevents acid from rising up the oesophagus) was completely lax. That is to say that is wasn’t closing at all. She was told that this had most likely been caused by her medication – with the Sotolol as the most likely candidate. As that is the drug that controls Ann’s arrhythmia so successfully, there was no possibility of changing it (and the damage had already been done in any event so it would be unlikely to recover even if the drug was withdrawn, we were told).

Ann was told to keep taking the Lansoprazole and see how things developed.

In the meantime, by degrees, the chronic pain at the implant site began to return. As Autumn turned to Winter, Ann started to take more paracetamol to control breakthrough pain and at other times, she would increase the dose of Pregablin. The pain made working much more tiring and she would collapse on the sofa when she got home, exhausted once more. It seemed like her recovery had stopped and we were going backwards again. It wasn’t long before Ann could be found quietly crying to herself in the evenings, her usual smile failing her.

Ann saw the pain specialist Dr Q again and together, they decided that it would be worth giving acupuncture a try. I had had acupuncture for severe pain from a trapped radial nerve and the results had been astonishingly good so we knew it could be effective, even if we didn’t understand how or why. She had her first session in mid-November with the pain team at the Beverley Community Hospital and emerged from it with extreme discomfort. It has to get worse to get better, we assumed. In all, she had four acupuncture sessions but it became increasingly clear that far from calming the nerve paths and reducing the pain, it was exciting them and making the pain much worse.

After the fourth session in mid-December, Ann collapsed at home whilst standing at the kitchen sink. Fortunately, our daughter was stood right behind her and caught her before her head hit the stone floor. A sudden massive spike of pain had knocked her out cold. The acupuncture had made things much much worse. The clock had been wound back an entire year.

The Beverley pain team then passed Ann to a physiotherapy team at Hull Royal Infirmary. They, Ann was told, had experience of complex chronic pain cases and may be able to help. It would be March 2017 though before Ann was seen.

We spent Christmas in Staffordshire with a large group of extended family. Ann wasn’t even able to carry a plate from the kitchen to the dining room such was the level of chronic pain. She could no longer pick up our Grandson and maintaining the Christmas cheer was a real struggle.

In the New Year, Ann arranged to see Dr S at the Freeman again to seek his advice. She travelled up to see him on January 13th 2017. I was away at a conference in Panama City and Ann was far too uncomfortable to drive to Newcastle so our daughter did the driving through the snow. (It was whilst I was away on this trip that the Ombudsman’s final report had landed as discussed in Chapter Fourteen).

Dr S said that he thought the solution most likely to eliminate the pain was the removal of the ICD altogether. Even then, the pain from the damaged pectoral muscles might continue to some extent, but at least it could be subjected to intense physiotherapy which could not take place whilst the ICD was in the way. For ICD removal to be possible, the underlying arrhythmia had to be eliminated – altogether – and that meant ablation of the aberrant signals.

To understand what is involved, we should probably take a slightly more detailed look at the specifics of Ann’s arrhythmia. As we know, she suffered from ventricular tachycardia. She had aberrant signals that originated in the ventricles somewhere which caused additional or fast heartbeats.  In lay terms, those signals appeared to be coming from the wall of the left ventricle very close to the bottom of Ann’s heart.  (For the cardiologists, Ann was suffering from ventricular tachycardia with right bundle block morphology and right axis deviation with a likely left anterior fascicular origin).

At Castle Hill, Ann had been told that the chances of successful ablation were as low as 10% and as high as 60% (by the same electrophysiologist). They had also told us that this origin for the aberrant signal was extremely difficult to access and that there was a substantial risk of damage to the AV node. If the AV node was damaged, no signals at all would reach the ventricles from the atria and so Ann would need a pacemaker to make her heart beat for the rest of her life. With no AV node, if the battery fails, so do you. At least with the ICD, and an intact AV node, you don’t die when the battery does.

So, Ann’s decision about whether to attempt the ablation was not an easy one.

The Freeman team was much more optimistic than the Castle Hill team however (probably because they were much more experienced and capable). Dr S was confident that he could burn out the bad signal successfully and he thought that it was certainly worth a try. Given the level of pain that Ann was experiencing once again, she decided to go for the ablation attempt in the hope that she could be free from pain entirely. It was worth the risk, she decided, if a normal life could be restored to her.

She was told that the waiting list was around six months.

So be it.

Days later, Ann took an emergency ‘sit and wait’ appointment at the local GP as her pain in the damaged muscles of her chest had become unbearable. The Pregablin was increased back to its original high level and Ann began to spend more time on the sofa and less ‘out and about’. She had three weeks off work in the hope that the inactivity would allow the pain to receded – and to some extent, it did.

You will recall the photographs below – one taken after the second procedure and one after the third. In the right hand shot, the ICD is lying flush with the skin despite being in front of the pectoral muscles. Since then, it has sunken into Ann’s chest a little further. It appears that the muscles so mutilated in the second procedure had atrophied and that process is continuing. If the ICD was removed, there would probably be a large depression in Ann’s chest where the healthy musculature used to be. It seemed to us that as the ICD settled further into Ann’s chest, it began to irritate the nerves in the area once again, causing the renewed pain. We have been given no alternative explanation.

February 2017 saw Ann back with the gastro-enterologists because the reflux was still a major issue. She had a very unpleasant catheter inserted into her stomach with the other end emerging from her nose and attached to a recording device. This she had to endure for 24 hours. There were actually two processes involved called Oesophageal Manometry and Gastro-oesophageal Reflux Monitoring. The manometry is carried out immediately after the tube is inserted and measures the effectiveness of the swallowing mechanism and the muscular action in the oesophagus. The tube is then left in place and the reflux monitoring process takes 24 hours during which the catheter measures acidity through the length of the oesophagus to see how much acid is escaping from the stomach.

The results were not encouraging. The medics recommended surgery to tighten the oesophageal sphincter (Fundoplication I believe it is called) which would be carried out laparoscopically (i.e. through several small incisions using a laparoscope). The procedure is irreversible and Ann was told that one of the side effects would be that she would never again be able to belch/burp – which presumably meant that any trapped air would have to leave by the only other available route!

Be that as it may, Ann was not about to let them put her under the knife again unless it was absolutely unavoidable. Both her surgical procedures at the Trust had gone wrong and she didn’t believe in third time lucky. She elected to try to continue to manage the reflux with medication. In due course, she took the Lansoprazole less and less and relied instead on regular sachets of Gaviscon and so far, that has been effective. Eventually, she may have to opt for surgery. For now, she is managing without.

Ann began her visits to the physiotherapy department in Hull in March. The first few visits were substantially a waste of time. The therapists had no idea what to do because of the presence of the ICD in the area they were supposed to treat, and so they barely touched her.

In June 2017, Ann received a letter from the Freeman Hospital in Newcastle informing her that the ablation procedure would be carried out on July 31st.

Also in June, Ann saw a new physiotherapist for the first time. This lady was a specialist in chronic pain cases, albeit mostly rheumatoid arthritis patients, but she took an immediate keen interest in Ann’s problems and expressed a determination to make her more comfortable. Unlike her colleagues, she was not put off by the ICD.

After examining Ann very thoroughly, she told her that there was substantial damage to the pectoral musculature as a result of the surgery but very probably also as a result of the haematoma which would have caused the tissues to become ‘sticky’ and fuse together where they should not. She explained that the muscles were now badly puckered and atrophied (wasted) and as a result, they were no longer able to support the weight of Ann’s left arm and breast. Furthermore, because Ann was unconsciously protecting the damaged area, she was only breathing at about 25% efficiency – which went some way to explain why she was always so tired and completely unable to exercise. It was the first time a medically qualified person had told Ann in simple terms the true extent of the damage caused by the Castle Hill electrophysiologists.

The physiotherapist believed that she would be able to treat the affected area but not until it had been rested for some time. So, she recommended that Ann wear an ‘orthotic’ garment – effectively a special corset that would disable the damaged muscles and do their job for them. It would not be a very glamorous garment, but if it enabled the physiotherapist to bring about some improvement, Ann was happy to give it a try.

At around the same time, Ann and our GP decided to abandon the the Pregablin which, like the Gabapentin before it, had ultimately failed to control the pain and instead caused the debilitating cognitive side effects, damaging Ann’s memory and her ability to concentrate. So, during June and early July, Ann very slowly reduced the dose of the highly addictive Pregablin and equally slowly introduced the new drug – Duloxetine, the third candidate on Dr Q’s experimental list of chronic pain drugs.

The results were remarkable. By mid-July, Ann’s pain had mostly disappeared. The cognitive side effects disappeared with it. She was sharp, full of vigour and the smile was back. It seemed that finally, a solution had been found and a relatively normal life was within Ann’s grasp. Within a few days, Ann took the decision to postpone the ablation attempt in Newcastle to give her the chance to assess whether a pain-free life with the ICD was possible. She wrote to Dr S and asked him to release the theatre slot to a more urgent case and requested a review appointment for November.

In the meantime, Ann had the fitting of her sexy new corset (which she had to wear for a fixed number of hours each week) and the first series of injections into her spine. These were to treat a degeneration of the discs in Ann’s upper spine – a condition completely unrelated to her cardiac issues and a widespread consequence of bending over a dental chair for more than thirty years (and a leading cause of suicide amongst dentists we were told). The treatment involves inserting an 8″ needle through the side of the neck and diagonally through the neck into the front of the cervical vertebrae and then injecting steroids. They told Ann that she was the calmest patient they had ever seen. She told them that after all she had been through, an 8″ needle through the neck was a walk in the park.

Then a couple of weeks later, just as everything seemed to be going really well, everything went to hell again.

On Wednesday 19th July, Ann went into ‘Hypertensive Crisis’ – her blood pressure suddenly shot up so high that blood pressure monitors couldn’t even measure it (in this case, a systolic pressure of over 220 and diastolic over 110). She was dizzy, sweating and vomiting. In hypertensive crisis, there is a very real risk of organ damage, stroke, cerebral haemorrhage and even rupture of the aorta or heart failure. This was extremely scary and even more worrying because the medications Ann was taking should have driven her blood pressure lower, not higher.

The only explanation that the doctors could offer was that this was a rare side effect of the Duloxetine! We had finally found a drug that made her well and it was trying to kill her.

Ann was told to reduce the dose immediately to half the prescribed level and the pain returned just as quickly, albeit less severely. Because she was still taking some Duloxetine, Ann was also prescribed blood pressure medication – one of the potential side effects of which is…

Arrhythmia!

You really couldn’t make this stuff up.

And it knocked her sideways.  Ann slept no less than 20 hours in every 24 after the blood pressure meds.  She didn’t eat at all. She managed four days like this. So the doctors told her to reduce the blood pressure meds by half too but in the end, Ann just threw them in the bin. She simply couldn’t tolerate them on top of all the other medication and she refused alternatives.

In due course, she was allowed to take the full dose of Duloxetine occasionally when the pain was at its worst and Ann was careful to monitor her blood pressure when she took the higher dose. Strangely, her blood pressure was actually lower at these times, suggesting to us that the Duloxetine wasn’t the cause of the hypertension at all. However, no-one could come up with an alternative explanation.

In September, in an attempt to figure out what was going on, Ann was fitted with a mobile blood pressure monitor for 12 hours. The average BP measured was 147/83 which wasn’t as bad as it might have been and so the doctors relented and, because Ann was sensible and medically trained, they allowed her to continue without the BP meds in the knowledge that she would ask for some if required.

It took a while to get the balance right, but in due course, Ann learned to cope with some remaining pain and kept a careful eye on her blood pressure.

In October, Ann celebrated her sixtieth birthday. I took her to Portugal for a few days and we stayed in an amazing hotel on the coast north of Lisbon for four days, walking in the sand dunes, enjoying massages in the spa and generally relaxing. She looked amazing. Relaxed, well, radiant. You couldn’t possibly imagine that she was sixty and had been to hell and back with her health.

Then on the flight home, she went into hypertensive crisis again. Out of the blue. As before, it began with a severe headache, then feelings of nausea, then, just after we landed, the vomiting. The drive home from the airport was a scary one. We couldn’t decide whether to pull over and call an ambulance or just get home as fast as possible and check that BP. In the end, we continued home where the catastrophically high blood pressure was confirmed.

There was no discernible cause. No change in medication. No stress. No arrhythmia. Nothing. It just happened. We, and the doctors, have no idea why. Gradually, over the next few days, her BP fell to more normal levels once again.

There was another crisis in November, this time after another series of spinal injections so it is possible that the steroids were a factor in this case. She also developed flu in November after her compulsory annual flu vaccine and exposure to a very snotty grandson and so the review in Newcastle with Dr S was postponed until the New Year. Ann will see Dr S again in February 2018.

Recently, Ann came up with the idea that it might be wise for her to take magnesium supplements. Magnesium is essential in the maintenance of correct potassium levels which in turn is essential to prevent arrhythmia. Low magnesium is a known factor in migraine headaches and can cause muscle cramps. It can also cause high blood pressure! Magnesium is also said to have ‘analgesic-sparing’ effects. In other words, it makes painkillers more effective. It is also said to reduce the levels of a pain-carrying neurotransmitter chemical in the brain (NMDA) so it could potentially even reduce pain perception.

What’s more, the Sotolol Ann is taking is known to deplete magnesium, and many antacids (which Ann has used to combat the acid reflux issues) do the same thing so Ann’s serum magnesium could easily be low.

So she discussed her idea with Dr Q in December and he thought that it was an absolutely brilliant suggestion. He agreed that it could help with the pain, making the medication more effective and that it might also help with the erratic blood pressure. It certainly wouldn’t do any harm to Ann’s cardiac heath either. Ann started the supplements this week and has promised to keep Dr Q informed. I will update this chapter when we know more but so far, it looks promising.

As things stand today then, Ann is mostly well. As far as her arrhythmia is concerned, she is barely aware of it. She gets the occasional bursts of ectopy but these are short-lived. She hasn’t even had any anti-tachy pacing for many months so the Sotolol is doing its job and the ICD does little other than the usual atrial pacing. But it’s there if she needs it and that is a comfort.

Our friends and family believe that she is much more well than she actually is. That is because she always has a smile for them and because she looks so radiant. They do not see the crises or the evenings when the pain creeps up out of nowhere to reclaim her. But even that is somewhat less frequent these days.

I do not think that Ann will have the ablation – at least not until the battery in her ICD runs out and a decision must be made about whether to do a ‘box change’ or try the ablation so it can be removed altogether. That is probably around 5 years away. The truth is that she has grown comfortable with the companion in her chest that will not let her die.

She has got past the resentment she initially felt at falling ill despite having a near-perfect lifestyle and is now at ease with her underlying condition. She is not at ease with the consequences of her treatment however. As you have seen in this chapter alone, those consequences still have profound repercussions even today.

Life continues to be a roller-coaster ride.

The people responsible have learned nothing from Ann’s experience and could so easily inflict a similar fate on others. That is so very wrong.

But we soldier on.

What other choice is there?

Chapter Sixteen – Plain Bad Luck?

Time and again, as Ann suffered from setback after setback, it was suggested to us by the medical teams that Ann’s journey was just a series of episodes of plain bad luck. There were, we were told, no errors or failures. Just happenstance. I never believed that. Nobody, it seemed to me, could possibly be that unlucky.

Or could they?

Could the medical professionals be right and everything that happened be within the boundaries of ordinary misfortune? One day, with nothing better to do, I decided to delve a bit deeper and investigate just how unlikely Ann’s story was. Please walk with me on my stroll through the statistics. It is remarkably enlightening.

Prevalence is a term used widely in medicine and it tells us how many cases of a condition, disease or complication exist within a given population. So there might be, say, 10 cases of a particular condition in every thousand people. Prevalence converts easily into odds. So, in this example, 10 cases/1000 equates to odds of 100:1 of having that condition. Incidence is very similar but not quite the same. It refers to the number of new cases over a given period of time. So it provides odds of developing the condition in a given period. I cheated a little and used both prevalence and incidence in my little experiment but I wasn’t writing an academic paper, I was amusing myself. What I found is that there is data out there which tells us roughly how likely or unlikely all these events were so I didn’t have to make it up. (the sources I actually used are in the footnotes).

Now my maths skills are pretty basic so a statistician would probably be able to drive a coach and horses through the exercise I carried out but that really doesn’t matter. Hopefully, even though my amateur analysis is deeply flawed, the result still tells us something.

So, engaging what I call my tenacious streak (and Ann calls my obsessive personality), I started digging.

To begin her journey, Ann was taken ill with cardiac arrhythmia. I couldn’t find figures for the UK but in the USA (which should be broadly similar) the overall prevalence of cardiac arrhythmias is 53 cases per thousand people ((US National Centre for Health Statistics, National Health Interview Survey on Disability)) (or a surprising 1 in 18 – rather more common than I had guessed). Most of these are cases of AF which affects over 2 million Americans. In Ann’s case, she had a fast arrhythmia or tachycardia. Now the incidence falls to 16 per thousand (or 1 in 62).

There are up to ten types of tachycardia if you include the most obscure but most sources agree that there are four main types (supraventricular, sinus, ventricular and postural orthostatic) so we’ll ignore the others. Ann had VT (one of the main four) so we’ll approximate that the incidence has fallen again by a factor of four from 16 per thousand to to 4 per thousand (or 1 in 250).

So the approximate odds of Ann needing to go to the ED with ventricular tachycardia at any time in her life were about 250:1 against. That didn’t sound unreasonable. I was off and running.

Then the medics discovered (somewhat belatedly) a blocked coronary artery. Ann was one of 132,863 women who were admitted for in-patient treatment for coronary heart disease (CHD) in England in the year 2015/16. ((British Heart Foundation – Cardiovascular Disease Statistics 2017))

The population of England in 2015 was 54,786,300. ((Office for National Statistics – mid-year population estimate 2015)). We’ll assume half were women – so, 27,393,150.

So the incidence of female coronary heart disease admissions in 2015/16 was 132,863 out of 27,393,150 or roughly 4.8 admissions per thousand. The odds of Ann being one of them were therefore 208:1 – against.

So, we have:

Ventricular Tachycardia  250:1
Coronary heart disease admission  208:1

To calculate the probability or odds of having both, you multiply the two together. So, the odds of having ventricular tachycardia (VT) and then being admitted for treatment of coronary heart disease (CHD) in the same year are 52,083:1 (against).

So, around 50,000:1. That means that in a UK population of roughly 65 million people, around 1300 people might have had a similar experience. That too sounded plausible. Pretty long odds but well within the bounds of bad luck.

Of course, no-one is suggesting that the Trust had anything to do with Ann developing these conditions. The same isn’t true from this point forward.

Next, Ann had an avoidable out-of-hospital cardiac arrest. I decided to ignore the odds of that happening within hours of an inappropriate discharge from an ED. Keep it simple, I decided. So, there are around 30,000 out-of-hospital cardiac arrests in the UK each year ((British Medical Journal: Vol.5 Issue 10: The UK Out of Hospital Cardiac Arrest Outcome (OHCAO) project)) among a population in 2015 of 65.13 million. ((Office for National Statistics – mid-year population estimate 2015))

So the odds of the out-of-hospital cardiac arrest were 2,171:1 against.

Our odds (VT plus CHD plus cardiac arrest) are up to 113 million:1 – against. There aren’t enough people in the UK to generate one such case.

But we aren’t even half way.

Then, Ann suffered the massive haematoma following the first implant. Sources related to ICD implantation are harder to find but one academic paper found that the incidence of pocket haematoma (less serious and more common than what happened to Ann but all I could find) is around 1.2% of all ICD implants ((British Medical Journal: A systematic review of ICD complications in randomised controlled trials versus registries: is our ‘real-world’ data an underestimation?)) – or 83:1 against.

So, VT, then a CHD admission, an out-of-hospital cardiac arrest then a post-implant haematoma gives us odds of 9.385 billion:1 against.

Then there was an ICD lead displacement. That is rather more common at 3.1% ((Also from British Medical Journal: A systematic review of ICD complications in randomised controlled trials versus registries)) – or odds of 32:1 against.

So, now the odds of all 5 events has reached 300 billion:1 against.

That’s LESS likely than winning the National Lottery Jackpot twice in the same year. ((The chance of a jackpot win (since the extra balls were added) is 45 million to one against. There are 104 draws per year so the odds over a year are 1 in 432,000. Two wins in a year is that number squared which is 186 Billion to one. Almost twice as likely as what happened to Ann – so far!))

But we still haven’t quite finished.

Next we have the chronic post-operative neuropathic pain. I didn’t need to find a source for this as the specialist pain consultant Dr Q had told us that the incidence was 2% – or 50:1.

Now the odds of Ann’s journey are a staggering…

15,016,083,333,333:1 

Or fifteen trillion to one against.

If I had continued and considered the odds of other issues such as the critical pages being missing from the medical notes, the numbers would get so big that I wouldn’t even know what they are called and my calculator would probably explode anyway.

So, I’ll stick at fifteen trillion to one.

According to those odds, you would need over 2,000 planet earths, each one with a full population of 7.3 billion people, to find just ONE person that unlucky.

But the NHS Trust asks us to believe that Ann was that person.

No, it wasn’t bad luck. There was another factor at play.

It is called human error.

Chapter Seventeen – Dear Doctors (an Open Letter)

Dear Doctors,

This chapter is for you. It is an open letter to the doctors who treated Ann and to all other doctors everywhere. It is mainly intended for hospital consultants and registrars but all clinicians probably should read it because the criticisms I level at your profession here apply to some extent in the general practice arena and elsewhere too.

That said, I believe that our GP has been nothing short of outstanding throughout recent years. Her support and understanding has been exemplary. That is not to say that her partners have always achieved the same standards – they haven’t – but our GP has been a tower of strength. Thank you.

I also want to praise and thank the nursing staff. With one or two notable exceptions who would be better suited to a career in the demolition business, the very many nurses who looked after Ann were kind, compassionate and, most importantly, focussed on the person, not the condition. We remain forever in your debt. The same goes for the paramedics. Without exception, the ambulance crews were professional, knowledgeable, decisive and yet both calm and just a little bit funny. Oh how I wish you could train the doctors. They have so much to learn from you.

And so to doctors.

To understand the genuine passion behind the criticism I offer, you really need to read the full story. Without it, my words may sound bitter and gratuitous. They are intended to be neither.

If this is your entry point to the story, please go back and read the whole tale – before or after you’ve read this chapter, it doesn’t matter – but read it please. Experience the pain, the distress and the frustration that was caused by your medical colleagues and then perhaps you will not judge me so harshly.

With all that said, I would like to share my experience of hospital doctors over the last two and a half years.

Two Ears, One Mouth

The one quality most lacking in all our encounters with hospital doctors was the ability or willingness to listen. Or to be more accurate, the ability to actually hear when apparently listening.

When Ann wrote her statement to the first resolution meeting with the Trust in February 2016, she spoke of feeling like she had spent the previous year in a glass box, shouting but unheard. Time and again, she tried to give the doctors vital and highly relevant information and she was ignored. That feeling ran through this entire story and remains the case today.

Ann’s story has been told online because the Trust declined the opportunity to hear it privately. I have informed the Trust of the presence of this online version. I have informed the Chief Executive, the Chief Nurse and a non-executive board member. Not one of them has replied.

Ann’s voice is still unheard.

The greatest impediment to listening in the clinical setting is, we assume, lack of time. Doctors are working in a pressured environment after all, particularly so in the under-resourced NHS of today. There aren’t enough doctors and so they are seeing too many patients and cannot devote enough time and attention to each.

But is that true?

Victor Montori, a Professor of Medicine and a doctor at the Mayo Clinic in his excellent book ‘Why We Revolt – a Patient Revolution for Careful and Kind Care’ talks of doctors seeing patients in a blur whereas they should be noticing each patient and seeing them in high resolution. Professor Montori is a very astute guy. It is worth visiting his website (https://patientrevolution.org).

My view based upon our experience is that noticing the patient, truly noticing him or her and focussing complete attention upon them and really seeing and hearing them (seeing them in high resolution) takes no longer than not focussing and listening superficially. It is not a matter of time, it is a matter of making the effort. A matter of simple concentration.  That effort is all but certain to be rewarded – and it is all too often absent.

Most of the consultants we encountered were butterflies. They fluttered from flower to flower confident in the knowledge that they were fine, admired specimens and saw each very brief landing on a bloom to be a blessing which they bestowed upon that flower.

What the flower needed however was a worker bee that stayed on the bloom to ensure that the mutually beneficial transaction was properly completed. Not only would the flower get pollenated, but the bee would come away with plenty of nectar. The patient would be listened to and would feel the doctor’s empathy. The patient would feel cared for. Feel that they mattered. The doctor would gain real insight and be in a better position to make correct clinical decisions – which just might just determine whether the patient lives or dies. It seems obvious, but it doesn’t happen enough. For Ann, it didn’t happen for months on end.

It isn’t just about listening and hearing however. It is about talking too.

When we first arrived on the cardiology ward in May 2015, one of the nurses warned us not to attach too much importance to what the consultants said. “If you see ten cardiologists” she said, “you’re going to get eleven different opinions”.

It was a remarkably perceptive remark and to our great surprise, proved to be entirely accurate. The cardiologists, we discovered, were not slow to offer diagnoses and opinions, even in the absence of much in the way of clinical evidence to support their suppositions. In Ann’s case, many of these impromptu outpourings were completely and utterly wrong and caused either unnecessary worry or misplaced hope.

Too many of the doctors loved an audience – whether it was the patients themselves, the nursing staff or a gaggle of sycophantic medical students – and they took every opportunity to demonstrate their superiority. It was as if they had been born with one ear and two mouths.

And as we’re talking about talking, another recurring theme was constantly being spoken to as if we were only three years old.

I understand of course that doctors have to explain some relatively complex issues to a very wide variety of people but it shouldn’t take a genius to detect the difference between someone with learning difficulties and a MENSA member. The two can be distinguished with relative ease. Similarly, it really isn’t that difficult to work out which people want lots of information and which would prefer just the bare minimum.

Between us, Ann and I have eight A levels, two undergraduate degrees, one post graduate degree and two professional qualifications. Between us, we spent thirteen years at university. It is fair to say that we are both reasonably articulate. It should have been pretty obvious that we were likely to understand most of what was explained to us.

The doctors also knew that Ann was a dental surgeon. Ann had over thirty years’ experience in treating patients of her own. Like the doctors, Ann had studied medicine and surgery. Like them, she had dissected human cadavers. Indeed, when it comes to the head and neck, she could probably have taught them a thing or two about anatomy and physiology.

She could certainly have taught most of them a thing or two about ‘bedside manner’.

With few exceptions, the doctors addressed us in the most infuriating and patronising tone and often dismissed intelligent questions with platitudes like “Oh, you don’t want to be worrying yourself about that!”

“Well actually, you condescending twit, I am already worrying my little head about that and the reason that was an interrogative sentence is that I was rather hoping for an answer!”

Of course, I never actually had the courage to say that. Instead, I bowed to their inevitable superiority and kept my mouth shut (more of which shortly).

So why are so many of you hospital doctors such rampant prima donnas?

I think I may have an explanation:

The Super-Hero Delusion

18 doctors are assigned a letter-name in Ann’s story. There were of course many other doctors from F1s to senior registrars and consultants that we encountered on the journey but whose part was not significant enough to be described in detail. In total, I would estimate that Ann was examined or treated by roughly 30 senior doctors, the majority of whom were at consultant level (I’m ignoring altogether the countless unfortunate F1s, F2s and junior registrars here).

Of those thirty or so senior medics, Ann and I came to believe that six of them were brilliant doctors. This special half dozen demonstrated qualities that ought to be shared by every single doctor in the land – empathy, an ability to listen and, more importantly, to hear and of course, excellent clinical skills and knowledge as one would expect. They didn’t just give their time and expertise, they gave their complete attention to Ann and gave it with compassion and kindness.

Just six out of thirty. Hardly an impressive haul.

So that they know that they are recognised and appreciated, they are:

Dr A, the ED doctor on that first night in the Hull Royal Infirmary ED who watched Ann’s monitors all night and probably saved her life by not discharging her.

Dr D, who re-admitted Ann leading to the discovery of the stenosed coronary artery and later dealt with the consequences of the post-operative haematoma with such kindness and compassion.

Dr E who persisted with the investigations into Ann’s ischaemic pain and inserted the stent in her artery, later giving her his personal mobile number so she could contact him if there were any problems and always came to see her during subsequent admissions even though he was no longer involved in her care.

DR N, the ED consultant who was so wonderful with Ann after her cardiac arrest whilst simultaneously dealing with the terribly injured girl who had jumped off the Humber Bridge.

Dr Q, the pain consultant who still sees Ann regularly and will not rest until everything possible has been done to eliminate Ann’s ongoing pain.

And finally, Dr S who performed the third implant procedure at the Freeman Hospital in Newcastle resulting in an immediate and radical improvement to Ann’s dreadful suffering.

You know who you are. Thank you from the bottom of our hearts.

Of the remainder, a few were little more than a face during a fleeting encounter and so little is remembered of them. Many however played a more significant role and fell well short of the standard every patient should be entitled to expect. In my opinion, at least ten of the doctors, including all those that made serious errors in Ann’s care, suffered from what I will call the Super-Hero Delusion. It is perhaps another way of saying that these doctors are astonishingly arrogant or downright pompous combined with a terrifying level of self-belief.

There are, I suspect, many complex reasons for this.

Doctors, and hospital consultants in particular, are accorded a remarkable level of respect by patients by default. Those of us without medical training tend to be in awe of their skills and knowledge – and I certainly was before our story began. Sometimes, as was the case with Ann, we are obliged to put our lives into their hands – quite literally. To be able to do that with any degree of confidence, there is a need for us to afford special status to them. In our minds, we elevate them to a super-human level. We put them on a pedestal.

To do so makes us less scared.

If they’re super-human, we’ll be OK, we reason.

Some of that rubs off.

It isn’t helped by the default structure of medical care in hospitals. There is an ingrained hierarchy in place in every hospital in the world and the consultant sits atop the pyramid. He is feared. He is obeyed and he is listened to.

Even if he’s talking rubbish.

Little wonder then that some of this goes to their heads. Some consultants we met had become so corrupted by their special status that they had become flagrant narcissists. Dr L at Castle Hill Cardiology (who never actually treated Ann, thank God) is an extreme example of the deluded super hero clinician. I daren’t even write here my opinion of Dr L. Suffice to say I think I there are probably an awful lot of mirrors in Dr L’s house so he can see how wonderful he is as often as he possibly can.

But even in its milder forms, the super hero delusion can still be extraordinarily dangerous. Let us take a look at Ann’s experience in the ED in August 2015 before she was inappropriately discharged only to have a cardiac arrest at home hours later:

Dr G, who looked after Ann that night was by all accounts a dedicated and capable doctor and yet she made a catastrophic error.

Dr G didn’t listen. Or if she did, she didn’t hear and if she heard, then she didn’t believe what she was being told – even though it was completely accurate.

She didn’t focus on the patient. She didn’t see the patient in high resolution and so she didn’t see what was right in front of her. She allowed her overwhelming confidence in her own ability and judgement to completely override the information she was being given. She ignored the facts and preferred her own opinion.

Let’s not forget, Ann had been rushed to hospital after an episode of violent palpitations and central chest pain with partial loss of consciousness. She had previously been recorded (in the very same unit) with sustained ventricular tachycardia at 240 beats per minute for 35 minutes and was already being treated for that condition. She had already had a coronary stent inserted and her cardiac circulation was now “A1”. Her arrhythmia however was not yet fully controlled and she was a clear risk for sudden cardiac arrest.

This is what I think Dr G saw when Ann presented:

Dr G had seen Ann’s ECG which was now normal. The VT had stopped, for the time being at least. She had tested Ann for Troponin and the test was normal. She looked at Ann and saw a fit, healthy and attractive woman. She didn’t like the way that Ann described her symptoms like an experienced clinician (which is exactly what she is of course). She ignored the medical history and completely dismissed what Ann was telling her.

By contrast, this is what she should have seen:

My graphical interpretation may be slightly wide of the mark but probably not very wide. There is no doubt that there was an incorrect reading of the patient and it very nearly cost Ann her life.

Ann’s medical history was ignored and she was treated based on how she appeared and on an over-confident and wholly incorrect opinion instead of based on the evidence presented. Ann wasn’t even placed on a monitor. If you’ve read the other chapters, you will know that she was not seen by a cardiologist, she was not admitted and she was instead discharged the following day (by a gastroenterologist!) only to have a cardiac arrest five hours later.

The super hero delusion: I’m a doctor and I’m never wrong.

Well doctor, you were wrong this time. You couldn’t possibly have been more wrong.

The super hero delusion was also at play when Ann told the doctors and nurses time after time that something was very wrong with the wound site after the first implant. It convinced staff that she was being a drama queen – so much so that they didn’t even bother to check for themselves – so she developed a massive haematoma, she was left in agony and her ventricular lead was displaced so the whole procedure had to be repeated.

The same was true when the staff believed that Ann was refusing to get out of bed after the second implant rather than that she was incapable of doing so.  Nobody has pain like that after a simple implant. She must be making it up. I’m so confident that I’m right that I won’t even check her out.

It happened yet again when she told them of the post-operative pain at the out-patient clinics. It couldn’t be that. That doesn’t happen. She’s exaggerating. We know best. We’re the experts. We’re the super heroes.

No focus. No listening. No hearing. No compassion.

Well, my dear doctors, you are not super heroes. All of you are fallible. You make mistakes like the rest of us. And if you admitted to them more often, and occasionally actually allowed yourselves to learn from them, then hospitals would be a very much safer place.

And by the way, it is still not too late to admit the errors in Ann’s case.

In the meantime, please leave the narcissism at home and re-learn the simple art of listening – the simple kindness of giving the patient your undivided attention. If you do, there might be fewer mistakes in the first place.

Treat the Person, not the Condition

In a world of increasing complexity and technology, there is no doubt that medicine has to be divided into an increasing number of specialisms so that doctors can assimilate the vast amount of knowledge they need to treat us safely and effectively.

Unfortunately, specialists like to stay within their specialism. They are comfortable in their comfort zone. And sadly, they no longer seem to see their job not as making the patient well, but rather they see it as curing or treating ONLY the specific conditions within their specialism. The rest is somebody else’s problem.

Which at times is a profoundly stupid approach.

One example of that stupidity which we came across is the widespread use in the electrophysiology world  of Amiodarone, a drug that was at least twice put forward as a suitable treatment for Ann (but fortunately not given except when Ann’s life was at immediate risk).

The first problem with Amiodarone is that it works really well, especially for ventricular tachycardias like Ann’s. It is a highly effective anti-arrhythmia drug. It is much easier for doctors to prescribe Amiodarone than spend the time to test and assess the effectiveness of the less harmful alternatives.

Unfortunately, the second problem with Amiodarone is that it has more nasty side effects than you can shake a stick at.

It causes interstitial pneumonitis (a form of pneumonia that can be fatal) and fibrosis of the lungs (irreversible scarring of the lungs). The scarring can occur in as little as a week after treatment starts or take years to develop. It’s a bit of a dice throw. But develop it will.

Amiodarone also causes abnormalities of the thyroid because Amiodarone is structurally similar to thyroxine (a hormone produced by the thyroid gland) and causes both hypothyroidism and hyperthyroidism (slow and overactive thyroid respectively). It also causes micro deposits in the cornea of the eye in 90 per cent of people taking it along with a host of other less common but more serious eye problems. So, your arrhythmia will be much improved but you might not be able to breathe or see very well.

Amiodarone also causes abnormal liver enzymes which can lead to jaundice, liver enlargement and even hepatitis and cirrhosis. After 18 months, it can also cause a blue-grey discoloration of the skin with acute light sensitivity. It can build up in the male testicle and cause inflammation in the epididymis and men on long term Amiodarone can also develop breasts. Long term use can cause damage to the peripheral nervous system affecting sensation, movement and organ function and one study even suggests that it is also linked to cancer.

So, cardiologists or electrophysiologists can prescribe Amiodarone confident that their patient’s arrhythmia will be controlled. They have done their job. The patient is likely to disappear from their list of problems. Box ticked. Bed cleared.

In due course however, there is a very good chance that the patient will become a new case for the departments of pulmonology (lungs), endocrinology (thyroid), ophthalmology (eyes), hepatology (liver), dermatology (skin) and, potentially, oncology (cancer). So instead of using the resources of just one hospital department, that unfortunate patient may move on to using the resources of up to six other departments.

The problem hasn’t been solved, it has been multiplied. But our electrophysiologist doesn’t care. It isn’t his problem any more.

Is that a sensible use of scarce NHS resources? I think not. Is that a satisfactory outcome for the patient? Of course not. His condition has been treated…

But he hasn’t.

Instead, his life has probably been ruined.

Doctors, please treat the patient, not just the condition. Invest a little more effort and maybe a little more time – to protect the precious resources of the NHS from your bad decisions and to preserve some quality of life for the poor patient. Climb out of your specialist silos and engage fully with the patient so you can achieve a holistic result that maximises the patient’s quality of life and doesn’t just tick your specialist box.

Right First Time

There is, I don’t doubt, enormous pressure on clinicians to discharge patients as early as possible to ‘free up’ beds for more inbound patients. I’m equally sure that doctors would blame this on the armies of faceless managers and pen-pushers who appear to run the NHS these days – and they may be quite right to do so.

Nonetheless, it is you the doctors who sign the discharge forms and in Ann’s case, I suspect that all five discharges from Castle Hill were premature or entirely inappropriate. Indeed, it could be argued that she should only have needed to be discharged once had her treatment been carried out right first time.

Ann now has an ICD, takes regular and highly effective anti-arrhythmia medication (Sotolol) and has a single coronary stent in her LAD. Ignoring for now the harm done to her by the many mistakes that were made, she could and probably should have got to that point in a single hospital stay. Even if all of that meant that she would have been there for a month, that would still have been less than half the hospital nights that she actually endured because of the premature discharges and mistakes (she has spent around 65 nights in hospital so far).

Indeed, it is possible that if sufficient time and effort had been invested in finding the right anti-arrhythmia medication at the outset, the ICD implant would never have been necessary at all, saving hundreds of thousands of pounds in expensive medical devices, surgical procedures and everything that went with them not to mention the untold suffering, loss of livelihood and all the rest.

My point is that for whatever reason, the doctors display an unhealthy (and that is a very appropriate word) desire to get the patient out of the door as fast as possible. Whether that is in the patient’s best interests appears not to be a factor in the decision. She’s unlikely to die. If she gets in trouble, she’ll probably end up back here anyway so GET RID OF HER!

And we the patients and patients’ carers say nothing because we don’t want to be in hospital in the first place.

It is nothing short of sheer madness. And it is endemic.

And you, dear doctors, can stop it if you try.

Our experiences over the last two and half years tell us that the failure to listen, arrogance, the lack of holistic medicine and premature discharges must be costing many lives across the world. In particular, the failure to focus, to listen, and to hear is causing serious harm. Ann was lucky is some ways – she is still here. Many are not so fortunate. I read recently that between 9,000 and 20,000 people die in the UK each year as a result of medical error. In the USA, it is the third most common cause of death (after heart disease and cancer) causing over 250,000 unnecessary deaths. ((Research by John Hopkins University – covered in the British Medical Journal; BMJ 2016; 353: i2139))

Enlightened doctors are awake to this. Victor Montori I have already mentioned. Rob Hackett, a senior consultant anaesthetist in Sydney, Australia is another. Rob’s campaign about patient safety is also worth following (http://www.psnetwork.org).

However, so far, too few of you have put your heads above the parapet to stop this madness.

I hope many more of you doctors will join the revolution.

When you do, you will have my undying respect.

Yours sincerely,

 

Matt Davies.