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 LinkedInand 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.
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).
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.
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.
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.
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.
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.
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!”
“I have to call 999!”
“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?
This chapter is perhaps the most important chapter of the entire tale. In this chapter, I deal with the referral of our complaint to the Parliamentary and Health Service Ombudsman (PHSO) and the emergence of some vital new information.
And yet more incompetence.
We have reached the end of May 2016 in our narrative. A whole year has passed since I drove Ann to the ED for the first time. The complaints procedure with the Trust had been exhausted and had proved to be a complete waste of time. Ann was recovering from her third implant procedure and this time, was improving rapidly. There was hope that she will soon be able to return to work after more than a year of absence.
On 30th May, six months and one day after submitting the complaint to the Hull and East Yorkshire Hospitals NHS Trust and the day after my last email to Nurse Q, I made my referral to the Ombudsman via their online portal. With it went the original complaint, the entire exchange of correspondence with the Trust, the videos, the photographs and the meeting minutes. We received an acknowledgement within 24 hours.
Now we had to wait to see if they would investigate the case. It was not a foregone conclusion.
By June, just a month after the surgery in Newcastle, Ann had improved so much that she was able to resume driving. Alas, we had been forced to sell her beloved Mini Cooper S Cabrio as it was still much too painful for her to be changing gear all the time and the sporty ride was just too bumby for her. She adored her little Mini, which had every available bell and whistle on it. Never before had an optional extras sheet had so many ticks. Saying goodbye to her beloved car was very hard for Ann and much more significant than it might seem. For Ann, it meant that she had to acknowledge that she was not the same person anymore. Her treatment had changed her forever. There were many tears.
However, she now had a smoother ride in a new 4×4 with an automatic gearbox that she could easily cope with. The truth is that she didn’t like it very much but at least she had her freedom back at last and was no longer dependent on friends and family for transport.
It also had room for a baby seat in the back.
The baby that would need that seat entered the world on June 27th 2016. Naturally, we rushed down to meet him as soon as we heard the wonderful news and, thanks to the revision surgery, Ann was able to fulfil her ambition to hold the little man without pain.
It was a milestone moment. Ann had been through so much. She had cheated death, she had endured so much pain, she had been abandoned and yet she had emerged still smiling and determined not to be beaten. For Ann, carrying her grandson was the proof that she had made it through to the other side, despite everything.
We received the formal notification that the PHSO would investigate our complaint in July. This followed telephone conversations that centred around reducing the complaints to be investigated to no more than three main issues. The Ombudsman couldn’t take on an investigation that took in the dozens of issues our original complaint had contained. We discussed the options at length but it was fairly obvious which were the most important matters that must be included. The following were agreed as the scope of the investigation:
That Ann received inappropriate treatment in the Emergency Room at Hull Royal Infirmary in August 2015, did not receive a much-needed cardiac admission and was inappropriately discharged leading to a cardiac arrest at home only hours later from which I had to resuscitate her.
That Ann’s treatment at Castle Hill Cardiac unit relating to the first ICD implant procedure in August 2015 failed to prevent the formation of a ‘huge’ haematoma which caused significant suffering and may have led to the subsequent detachment of one of the leads attached to the inside of Ann’s heart.
That the second ‘corrective’ procedure in September 2015 to re-position the faulty lead was carried out inappropriately leaving her in chronic neuropathic pain which was only partly relieved by a third procedure carried out at the Freeman Hospital in Newcastle in May 2016.
We were told that the investigation would probably take around 6 months. In the meantime, the Trust would be informed of the investigation and would be asked to provide relevant records.
It was November 2016 before the investigating officer was appointed. New to the complaint, Ms X called me to discuss the investigation and the three issues were confirmed. She was extremely pleasant and helpful.
On December 12th, Ms X emailed to let me know that the case file had been sent to the Clinical Advice Team and that she would be having a discussion with their Consultant Cardiologist on Friday 16th December. On December 21st, she emailed again to let me know that the draft report had been posted and letting me know that she was now on holiday until January 9th.
The draft report arrived just after Christmas. The contents of a Draft PHSO Report are strictly confidential and I am not at liberty to disclose its contents. However, the Final Report (which is not confidential) would turn out to be identical and so I can quote that identical version.
The Report ‘partly upheld’ our complaint. That is to say, it found in our favour on issues one and two above but not on issue three. Below are some extracts from the report:
On Issue One – ED Treatment prior to Cardiac Arrest:
“We found the Trust failed to appropriately consider [Ann’s] cardiac arrhythmia during her attendance to the ED on 15 August 2015. The Trust failed to connect her to a cardiac monitor and failed to refer her to cardiology. It also inappropriately discharged her when it should have admitted her for closer observation. Had it done so, at the moment of her subsequent cardiac arrest a few hours later, she would have been in a hospital environment. This would have prevented the emotional and traumatic event for both [Matt] and [Ann] when he performed CPR on her at home”
On Issue Two – Failure to prevent the Massive Haematoma post Implant One:
“We found the Trust failed to closely inspect the site of the wound following the ICD implant, despite the increased risk of bleeding due to anti-platelet medication. Closer inspection of the wound would have prevented the haematoma as the Trust would have been able to take action sooner to prevent it from growing. Whilst we cannot say this was the reason for the lead displacement, [Ann] will never know whether or not the second corrective surgery could have been avoided. This has caused her undue distress not knowing whether or not things could have been different”
“Therefore, we have made the following recommendations to the Trust in recognition of the impact of its failings:”
“Within four weeks of the date of our final report, the Trust should write to [Matt] and [Ann] to acknowledge the failings we have identified, and to apologise for the level of distress caused to them. This should be shared with the PHSO”.
“Within four weeks of the date of our final report, the Trust should also make a payment of £350 to [Matt] in acknowledgement of the traumatic and distressing event of performing CPR on his wife, which could have been avoided.”
“Within four weeks of the date of our final report, the Trust should also make a payment of £500 to [Ann] in acknowledgement of the emotional impact and distress she has suffered as a result of its failings.
“The Trust should, within 12 weeks of the date of our final report, develop an action plan to address the failings we have identified. This should identify reasons for the failings and the learning taken from them. It should explain what the Trust will do differently in future, who is responsible for each action, the timescales in which each action will be completed, and how staff compliance with these improvements will be monitored and audited”.
All of that was very much what we had been hoping for (and expecting it has to be said, given the incontrovertible evidence) and we were absolutely delighted. We had been told that compensation was only ever recommended at ‘token’ levels. £850 wasn’t much of a bite out of losses running into six figures but it was about making change happen, not about money.
However, Ann’s ongoing pain which might last her lifetime was attributable to issue three, the second implant procedure, and here the Draft Report did not reach the expected conclusion.
“Having reviewed the medical records for the second procedure on 24 September 2015, we have seen no evidence to indicate that there were any complications…. The records suggest that the actual procedure itself took less than an hour… In the light of the above, we are satisfied that the corrective procedure was carried out appropriately”.
That wasn’t right. I had the medical records and there was nothing in there to support the Trust’s claims that the procedure took less than an hour.
So I wrote back expressing our “immense gratitude” for the care taken with the investigation but questioning the finding on issue three. In particular, I asked what evidence they had relied upon to draw the conclusion that the second procedure had taken less than an hour and so must have been without complication.
On January 10th 2017, the day after she returned from holiday, Ms X replied and, as requested, she attached the ‘evidence’ that had led to their decision to support the Trust’s account of the second procedure. I had been working overseas and did not see the letter until January 24th.
It comprised three double-sided pages of notes from the date in question.
One of the pages I had never seen before. It had not been included in the medical notes the Trust had provided to me. It was the page of notes made inside the Cath Lab at the time of the procedure! It was perhaps THE most important page of all Ann’s medical notes – and I hadn’t been given it.
I went through my pile of papers again. It definitely wasn’t there.
Furthermore, the equivalent page from the first procedure wasn’t there either.
The Trust has sent me around 300 pages of medical notes (an estimate based on the height of the stack, I confess that I couldn’t be bothered to count them). The odds of the most important page being accidentally omitted were therefore around 300:1 against. The odds of BOTH the most important pages being missing accidentally are 90,000:1 against.
It is possible of course but let’s face it, the overwhelming likelihood is that those pages were deliberately withheld. Withheld from us – but not from the Ombudsman apparently.
This is the page I had never seen before. It would prove to be utterly fundamental to our case.
This is how the Ombudsman had interpreted this page (from its letter dated January 10th):
As you should be able to see from the page of notes, the ‘TIME IN’ is indeed stated as 10.20. Near the bottom of the page, there are some further notes that begin “11.00”. The Ombudsman’s investigator, and the ‘expert cardiologist’ she was looking at the notes with (I know they did it together because she told me) saw 10.20 and 11.00 and concluded that the entire procedure had taken 40 minutes.
The so-called expert should have known better. So should the investigator. Because that isn’t what the notes said at all.
Let’s take a more careful look at the bottom of that same page:
What is actually says is “11.00 – Pt (patient) anaesthetised.” So, far from ending at 11.00am, the procedure actually BEGAN at 11.00am. The procedure was not completed in 40 minutes, the preparation for the procedure took 40 minutes. Ann was not anaesthetised until 11.00am.
This is hardly surprising when you think about it.
First, Ann’s ICD was switched on but one of the leads wasn’t working, presumed detached. The first thing they would have to do is verify which lead was malfunctioning. They wouldn’t want to pull the wrong one out. For that, a pacing technician would have to ‘read’ the device, using the Telemetry Wand presumably. Having established which lead wasn’t receiving any data, the technician would no doubt also check the function of the other lead to establish whether it too should be repositioned. They wouldn’t want to repeat the procedure a second time.
Having completed those checks, the technician would, I assume, deactivate the ICD altogether. They wouldn’t want to run the risk of Ann being defibrillated during the procedure. The anaesthetist would then have a conversation with Ann about the procedure and he would have to check the medications she was taking and when she last took them, ensure she had been nil by mouth and establish whether she had any allergies and so on. The electrophysiologist would (hopefully) study the x-rays to remind himself where the generator was located before opening up the pocket to start the procedure. Ann would also have to be connected to all the monitoring equipment – a 12 lead ECG I imagine (she would have been disconnected for the journey to the Lab) plus a pulse oximeter, blood pressure monitor and and perhaps others too.
After the procedure was completed but before the wound was closed, the technician would presumably power up the ICD generator and test the leads and telemetry once again to ensure that everything was now as it should be. Only then could the wound be closed. It would no doubt be checked again after closure.
All that, and the operation itself was miraculously completed in just 40 minutes according to the the Ombudsman. (Remember, this was a sub-pectoral implant so more complicated to access than a sub-cutaneous implant so it would have taken longer anyway). The whole thing, beginning to end. Given the preparation required, the operation itself would have had to be done in less than 20 minutes. That is ridiculous and the Ombudsman’s expert should have known that it was.
The Ombudman’s investigator and her expert had screwed up – spectacularly.
But we knew that the procedure didn’t take just 40 minutes.
So how long did it take? The page didn’t tell us that because no-one had filled in the the ‘Time Out’ box.
Fortunately, there was a second page attached to the first. This one I already had a copy of but without the first page, it had been of limited value. Alongside the first page, it was now priceless. That is because it did tell us when the procedure was completed – something the Ombudsman’s investigator and their expert would have known if they had just bothered to turn over the page and consider what they were looking at. Had they done so, the report would probably have read very differently because they would have known that the Trust had not been telling the truth and were concealing something.
Here is the important part of that second page, written by the recovery nurse who had looked so distressed when she brought Ann back to the ward that day:
So, what’s all this about? Let’s look at those drugs.
Cyclizine is an anti-emetic. That is to say, it stops vomiting. In other words, it is used to stop people coming round from an anaesthetic from throwing up all over the operating theatre. To make sure you don’t get covered in vomit, you give it the moment the patient comes round from the anaesthetic – or ideally, before she comes round.
Indeed, the manufacturers’ recommendations for the use of Cyclizine for sickness after surgery state:
“For the prevention of postoperative nausea and vomiting, administer the first dose by slow intravenous injection 20 minutes before the anticipated end of surgery.”
That probably didn’t happen in this case because we know that the drug was administered by the recovery nurse, not the anaesthetist. Instead, it would have been administered as soon as Ann was wheeled into recovery – seconds after the completion of the procedure.
Two hours and five minutes after the procedure started.
So the procedure had taken more than two hours – not the routine procedure that took less than an hour as the Trust had stated throughout the complaints process.
They had lied. Now we had proof.
And the PHSO had missed it. It had been in front of their face all along.
And the Trust had apparently withheld the evidence.
As we’re looking at the drugs, let’s also look at the Morphine. We have already seen in earlier chapters just how much pain Ann experienced after this procedure and continues to suffer to this day. She would have been screaming in agony as soon as she was conscious. The first dose of Morphine was also administered at 13.05. The Trust’s account as interpreted by the Ombudsman, is that they miraculously managed to prepare for and complete the procedure in just 40 minutes completing the entire process by 11.00am. This, if it had been true, would have meant that they waited over two hours to give pain relief! Presumably, according to the Ombudsman’s version, they just left Ann lying there in recovery without medication or intervention of any kind for two hours and five minutes.
Obviously, this is transparent nonsense. Ann was given the first Morphine dose with the Cycilzine as she came round from the anaesthetic – at 13.05.
Indeed, the notes state that Ann was taken back into the Lab, such was the level of concern at her pain. This tallies with Ann’s memory of the recovery nurse saying “Where the f@@k is he?” when she was trying to get Dr B to take some notice of her. Ann’s level of pain on entering the recovery area was not normal. The recovery nurse was extremely concerned, possibly frightened given how she looked when I saw her on the ward shortly afterwards. Ann was given additional pain relief back in the Lab at 13.25 and 13.50 so she was obviously in a bad way. The maximum dose per 4 hours is 10mg and Ann was given 9mg in 45 minutes. This was not routine.
We know that Ann was returned to the ward at 14.20. The notes, now that we had them all, corroborated everything we had said all along.
Without any shadow of doubt, the procedure had taken more than two hours. Even the Ombudsman would now be able to see that the Trust had not been telling the truth.
The big question of course was WHY?
Why would Dr B repeatedly state that the procedure was routine and took less than an hour when we knew – and could now prove – it had taken more than twice that time? Why was the Trust lying about what happened that day? Why on earth didn’t they simply tell the truth and explain what really happened?
Of course, I can only speculate. We know that Dr B didn’t have much experience of sub-pectoral implants (which was why Dr K had done the original procedure). We know Dr B hadn’t looked at the x-rays the previous afternoon but there is no reason to think that he didn’t have them available to him in the Lab. We know from the notes that the upper chest was scanned before they opened the pocket and yet we also know that Dr B still couldn’t find the ICD and had to “dissect and dissect and dissect” (his words) to find it. We will discover in subsequent chapters that the muscles of Ann’s chest wall were severely and permanently damaged by that dissection.
What else happened we simply do not know.
Nonetheless, I can see no reason why the Trust couldn’t have been honest about all of that and have committed themselves to making Ann as well as they possibly could as fast as they possibly could. No effort should have been spared to mitigate the harm done.
Instead, they couldn’t get her out of the door quick enough – they wanted rid of her. They discharged her too quickly. They even tried to make us believe that the pain had nothing to do with the implant. They told Ann not to return without an appointment (and there were no more appointments) and repeatedly lied about the length and nature of the second procedure.
It doesn’t make any sense at all.
What really happened in the Lab that day that needed to be concealed?
Sadly, the critical missing piece of medical evidence furnished by the Ombudsman didn’t answer that question.
The letter from the Ombudsman didn’t just send that critical missing piece of medical evidence however. It also enclosed their Final Report on our complaint (which as I have already pointed out was identical to the Draft Report. Not one letter had been changed).
By sending it with the evidence I had questioned, they robbed me of any opportunity to comment on that evidence and so have those comments taken into account in the final report. I simply couldn’t believe it. Not only had the Ombudsman team made a spectacular error, but they had deprived me of the chance to have it corrected.
As I have said, I had just returned from a period of working overseas when I saw the letter two weeks after it had been written. It took only minutes for me to spot the mistake after I opened the letter and so the next morning, I sent a quick email:
Email sent: 08.27 24/01/2017
Dear Ms X,
I have just returned from two weeks working overseas and last night, I read your recent letter and its attachments.
I am afraid that you have made a fundamental mistake in your reading of the medical notes which explains your conclusions about the second procedure (and this is not speculation on my part, but indisputable fact).
I will try to call you when I get to the office as it is extremely important that I explain the error to you and ask what can be done about it.
I called her as soon as I got to the office to explain the magnitude of that error.
I patiently took her through the evidence, explaining about the timing of the Cyclizine administration and how the missing notes appeared to have been withheld and how they proved what we had said all along.
“Oh my God!”, she said. “I’m not a doctor. I didn’t know what Cyclizine was.”
Nor did I. I looked it up. But Ms X had a ‘medical expert’ sitting beside her. She shouldn’t have needed to look anything up. It was abundantly clear from the conversation that she realised that she and her ‘expert’ had made a dreadful mistake and that she was very upset. The conversation went something like this:
“It’s OK”, I said, “You can revise the report.”
“Actually, I can’t”, she replied. “The Final Report is exactly that. It can’t be changed. I’m really sorry”.
“Then why the hell did you issue it before we had chance to see the evidence on which you had relied? I told you there was nothing in my set of notes that supported the Trust’s version of events. Your report contains statements that are completely untrue!”.
“I’m sorry. I’m really sorry. The only thing you can do now is go though the appeals process”
She went on to tell me how to submit an appeal. I can’t begin to explain how frustrated and angry I felt. Over a year spent trying to get at the truth and see some justice for Ann and even though we had finally found the proof we had been looking for, the record would still state that the second procedure took only forty minutes – all because of sloppy work by the Ombudsman team.
Our appeal was submitted four days later on January 28th.
The Ombudsman didn’t contact me to ask any questions or discuss the matter with me at all.
On March 14th, I received a response from Ms Y, Customer Care Officer via the PHSO’s secure email service.
Here is the relevant part of that response:
We do not automatically look at the whole of the original complaint again. Instead, we look to see if we took account of all the relevant evidence and made a fair decision. To do that, we look at whether we can see indications that:
We made our decision based on information that contained facts that were not accurate and which could change our decision; or
We have new information that was not previously available and which might change our decision; or
We overlooked or misunderstood parts of your complaint or did not take account of relevant information, which could change our decision.
We have carefully considered the information you have given us. Ultimately, I do not believe that this information meets our review criteria as set out above.
Once again, I simply couldn’t believe what I was reading. The appeal met all three criteria, not just one of them for Christ’s sake! I was now beyond angry. I was so furious that I simply couldn’t deal with it. I had to take a few days to calm down.
I waited four days and then sent this reply:
Email sent: 16.25 Saturday March 18th 2017
Dear Ms Y,
I have waited a few days to reply to your recent email because I was simply too angry and incredulous to compose a reply. Having calmed down somewhat, I will keep my response short.
Your ‘expert’ clinician only drew the conclusion that there were no complications because he thought he saw that the procedure took only 40 minutes. In fact, the records show unequivocally that the procedure took over 2 hours. Had he done his job properly and realised the actual duration, and then he had gone on to study the considerable weight of evidence pointing towards complications, I think there is a very strong likelihood that he would have advised differently.
Contrary to what you assert, I strongly believe that this does indeed constitute grounds to revisit that section of your report.
I appreciate though that because of your intransigence, we have probably reached the end of this particular road. [Ann] will probably suffer the pain and impairment for the rest of her life and those responsible could even go on to inflict the same fate on others. It appears that you would rather bury another mistake – this time, one of your own – rather than bring about an improvement in care.
Furthermore, the trust has withheld information and has made multiple statements in defence of the complaint that have subsequently been shown to be completely untrue. Thanks to you, they will also get away with that reprehensible conduct as well as their original failings.
I genuinely feel that you should be deeply ashamed of yourselves.
I received an out-of-office notification. Nothing else. Ms Y didn’t even bother to reply.
Our case had been buried.
The Trust had stuck two fingers up at us and now the Ombudsman was going to do nothing about it because in doing so, it could hide its own mistake.
A few days later, Ann received a cheque from the Trust in the sum of £850.00. It was attached to a remittance advice which stated ‘PHSO FINDINGS’. That was it. No letter to accompany it. No apology. No explanation. Just a cheque. Six weeks late.
I wanted to tear it to pieces and send it back and tell them to shove it where the sun doesn’t shine. Ann wouldn’t let me. “Let’s at least get some small thing out of all of this”, she said. “We can have a relaxing weekend away somewhere nice”. Typical Ann. Always finds something positive.
So we banked it.
The apology that should have accompanied the cheque arrived in early April. With it came the Action Plan requested by the Ombudsman. It consisted of a single A4 sheet (there was probably a second sheet judging by the way the text stopped abruptly mid-sentence at the bottom but that was missing).
It was pathetic.
Among the issues to be addressed was “Failure to discuss risk of bleeding with patient at the consent stage” which wasn’t even complained about and a discussion had taken place. The action alongside it was a change in the consent form to ‘get them off the hook’ in future. What I think should have been there was the failure to withdraw the anti-platelet therapy for a period before surgery and in particular, the failure to monitor the wound post-surgery, neither of which appeared in the action plan at all.
There were no reasons for the failings as there should have been. No learning that had been taken from the mistakes. As for the compliance monitoring and audit procedures, there was nothing. It appeared that the Trust was just paying lip service and just-about-complying with the Ombudsman’s recommendations with the absolute minimum level of effort possible. I’m afraid that I doubt that pathetic sheet of paper has ever been seen by a front line clinician.
It seemed the Trust had no intention whatsoever of learning from its mistakes. What a contemptible bunch of idiots.
What a complete waste of time.
I really had reached the end of the road.
Or had I?
Perhaps I had one last throw of the dice.
I managed to get hold of the email address of the Trust’s Chief Executive, Chris Long and I sent him an email on April 17th, requesting a one-to-one, private meeting which included the following paragraphs:
First, I would like to explain to you, as part of a calm, polite conversation, some of what really happens within the organisation you lead – the lack of compassion, the systemic failure or complete absence of communication, the clinical failures and the lack of honesty.
Second, I would like to explore ways in which the Trust might acknowledge its failings appropriately and make rather more meaningful changes to ensure that they are never repeated.
Mr Long didn’t reply until May 22nd. He declined the opportunity to meet and hear our story in private.
Which is why it is now being told publicly.
The end of the road really had been reached.
And with that, our story is very nearly at an end. There are more chapters to come, but they will deal mainly with the continuing consequences of what happened that day in September 2015 and updates on Ann’s condition and the ongoing efforts to mitigate her suffering. I think readers who have made it this far deserve to know how Ann is doing now.
I also intend to offer some reflections on our journey including some musings on the NHS of today, its questionable approach to patient safety and how the treatment of conditions has supplanted the treatment of patients at the expense of compassion. I may even offer an opinion or two as to why the vast majority of hospital consultants seem to be arrogant pricks with empathy bypasses and why Health Trusts appear to have forgotten why they exist at all.
Now that bit might be a tad more cathartic.
Update – February 2018
Following the online publication of this chapter at the end of October 2017, I received an unsolicited and unexpected call from the PHSO.
The young lady who called gave what appeared to be a heartfelt apology for the way we had been treated and the fact that we hadn’t even had a reply to that last email I had sent to them. In the light of the events described in this chapter, she explained, the PHSO would be looking again at the third part of our complaint (relating to the second implant procedure) and would re-visit their earlier decision to refuse to review their report. It was therefore possible that the second procedure would be re-investigated, she said.
My caller was extremely pleasant and I was obviously very encouraged but, as ever, things moved at glacial speed. It was January 2018 before an investigator picked up the file. The new investigator lacked the empathy displayed by her colleague. She told me she had read the story but I’m afraid I wasn’t convinced. She didn’t appear to know enough about our case. So, I sent her the full text of this chapter by email. She explained that she would now have to discuss this with her superior (so she probably hadn’t read the story at all) and I was told to expect a decision in a week.
It took about three weeks. She called me and said, just as her predecessor had, that this “did not meet our review criteria”.
I just couldn’t believe it. We had proved that the Trust had lied throughout the complaints procedure and the Ombudsman didn’t give a damn. Ann would face a life of pain due to the events that day and the Ombudsman simply didn’t care. What was the point of the PHSO?
I asked her whether I would be receiving a letter confirming their decision.
“No“, she said. “You’ve already got one letter saying we won’t review.”
So, to understand just how ridiculous this decision was, I think it is worth taking another final look at those review criteria. The PHSO claims that it will review a decision if an appeal meets one their three criteria.
We made our decision based on information that contained facts that were not accurate and which could change our decision; or
The Trust had lied about the duration of the procedure and the PHSO had relied upon these untrue statements. So, their decision was indeed based upon information that was not accurate. Furthermore, the PHSO confirmed in writing that its decision that the procedure was carried out appropriately was based substantially on that incorrect duration and so it was possible, even probable, that their decision would change if it no longer relied upon those untrue statements.
So review criterion 1 had certainly been met.
2. We have new information that was not previously available and which might change our decision; or
The proof that the procedure took more than two hours was new information. It was not previously available to the PHSO investigator because the expert had mis-read the medical notes. The proof that the Trust had lied was also new information (for the investigator, if not for us).
Review criterion 2 had therefore also been met.
3. We overlooked or misunderstood parts of your complaint or did not take account of relevant information, which could change our decision.
Without any doubt whatsoever, the PHSO (and its medical expert) overlooked the most important part of the medical notes and so misunderstood what they recorded in terms of the duration of the procedure. That mistake was fundamental to their decision.
And finally, review criterion 3 had also been met.
So, our appeal didn’t just meet one of the criteria (which is all that should have been necessary).
It met all three.
Why then did the PHSO refuse to re-investigate yet again?
The only reasonable explanation is that it did so to protect itself, and the medical expert who made such a comprehensive mess of his part in the original investigation – or possibly even the clinicians involved in Ann’s treatment.
In other words, it did so dishonestly.
The inescapable conclusion is that the Parliamentary and Health Service Ombudsman is simply not fit for purpose. It does not do what it purports to do. Some would say that it is corrupt. I suspect that is true.
Please follow me on Twitter (@ArrhythmiaStory) and read the online conversations to see just how many families have been affected by these issues. Some of these victims have lost loved ones and believe that the PHSO failed them utterly. Some have spent years on end trying to obtain a resolution.
You can also see other online sites which hold the PHSO to account by clicking the links below.
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.