Introduction

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

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

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

I am a very lucky husband.

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

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

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

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

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

Nobody deserved what happened less than Ann did.

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

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

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

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

And everything went to hell.

 

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

Synopsis – the Whole Story in Brief

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ann was discharged two days later in unrelenting agony.

She was still in agony 18 months later.

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

That didn’t stop me trying.

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

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

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

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

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

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

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

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

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

I had reached the end of the road.

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

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

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

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

 

 

 

 

Chapter Two – First Admission

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

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

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

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

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

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

A few weeks later, we were at his funeral.

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

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

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

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

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

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

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

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

I simply couldn’t believe what I was hearing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, to recap, we were told:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life would not return to normal after all.

Straight to Chapter Three

Chapter Four – Cardiac Arrest

This is where the tale starts to get really serious.

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

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

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

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

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

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

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

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

The following passage comes from the British Heart Foundation website:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Either way, the monitor stayed dormant right beside us.

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

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

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

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

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

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

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

God give me strength!

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

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

 

Five hours later, Ann had a cardiac arrest.

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

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

Then she died.

Literally.

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

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

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

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

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

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

She had gone.

Oh my God! Oh my God!!

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

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

Oh shit shit shit! Decision! Decision!

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

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

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

So I did what she had taught me.

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

“I have to call 999!”

She looked at me. Blinked again.

“I have to call 999”

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

“Oh fuck, I actually did it!”

“What?”

“I have to call 999!”

“NO!”

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

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

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

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

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

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

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

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

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

They should give lessons to doctors.

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

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

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

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

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

When I got home, I was exhausted. Numb.

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

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

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

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

But it wasn’t at an end.

No.

Ann’s ordeal had barely started.

Go straight to Chapter Five

Chapter Five – Implant

I didn’t get a lot of sleep. How could I when I knew that Ann was at risk of another arrest?

As Ann had been taken to Castle Hill by ambulance once again from Hull Royal, I went numbly through the now familiar routine of packing Ann’s bag for hospital and set off for the equally familiar cross-country drive to Castle Hill and arrived in time for ward rounds.

As I have already explained, the electrophysiologists choose not to do ward rounds. Whether that is because they are simply too busy or feel it is beneath them or for some other reason I do not know.  I do know that patients suffer as a result – if only insofar as they receive inaccurate and misleading information on a regular basis. This was demonstrated once again that day.

It was Professor J’s turn to do the rounds. He told Ann that they would attempt another electrophysiology study in the next 24 hours.  Like so many assurances Ann had been given on previous visits, this one also turned out to be untrue. The EP study never materialised.

He and Ann also discussed whether a hypersensitivity reaction to the nickel in the stent might explain some of the chest pain that Ann was still experiencing. The Professor dismissed that stating that there was no such thing as a metal allergy.  That too was incorrect, as would subsequently be demonstrated.

Then one of the registrars suggested to Professor J that Ann’s arrhythmia looked rather more like atrial flutter than ventricular tachycardia.  Having examined the ECGs, the Professor agreed, telling Ann that this was very good news because the electrical signal causing flutter was rather circular in nature and it was very easy to ablate a part of the circular path and eliminate the arrhythmia altogether.  We were obviously delighted at such a positive new diagnosis and the prospect of a complete cure.

Any hope was very short-lived however. It turned out that the Professor’s diagnosis was also utterly wrong.

Three out of three incorrect. The Professor wasn’t having a good day.

Later that day, Ann met Dr K, the second consultant electrophysiologist on the Castle Hill team during a rare appearance on the ward.  She quickly learned that Dr K is a plain-speaking medic that isn’t afraid to say what she thinks. Later, we would see the negative side of that bluntness, but for now, Ann found it rather refreshing. At least Dr K didn’t speak to her like she was five years old as many of her colleagues did.

Ann told her what Professor J had said.  Dr K said “That is complete bollocks! I’m the electrophysiology expert round here and I know ventricular tachycardia when I see it!” Like I said, Dr K doesn’t mince her words.

So much for the quick fix. The Professor’s visit, like so many of the other ward rounds before it, had been a complete and misleading waste of time.

You will recall that Ann had stopped taking the Bisoprolol the day before the cardiac arrest in preparation for another stress echo with Dr E, and possibly a further angiogram. Given that Ann had arrested, the stress echo was skipped and Ann went straight to the repeat angiogram later the same day. This time, the catheter was introduced via the femoral artery to eliminate any possibility of further damage to the arm.

The angio confirmed that there was no re-stenosis of the stent.  The cardiac circulation was still A1.  Dr E had been right all along, which was very good but unsurprising news.

Suspicion then fell on the Ticagrelor anti-platelet medication as the most likely cause of the chest pain.  It was therefore belatedly replaced with Clopidigrel and there was a noticeable reduction in Ann’s chest pain over the following days.

After a busy day with no further serious VT episodes, Ann was moved from CMU to a 4 bed bay on Ward 28.

There, Ann had a sleepless night.  A patient in the bay (affectionately referred to by the staff as Mad Betty) was suffering from dementia and had been shouting all night.  Ann had to get out of bed several times to calm her down as the nursing staff largely ignored her.  Every time Ann did manage to get to sleep, the staff woke her to ask how she was because they could see severe arrhythmia on the cardiac monitors. This would become a real concern for Ann.  For some strange reason, she seemed more prone to the VT when she was at her most relaxed and so falling asleep was often the trigger for a sustained VT episode. Eventually, she would become scared of surrendering to sleep.

In the morning, Ann was told that she would be going for the stress echo test.  In the afternoon, the staff finally realised that the procedure had already been made completely unnecessary by the angiogram and so cancelled it.

The possibility of an Implantable Cardioverter Defibrillator (ICD) was mentioned for the first time by one of the nurses as there had been little progress in controlling the arrhythmia.  I had never heard of an ICD and had no idea what it was. We quickly learned that it was both a pacemaker and a defibrillator, implanted into the chest and connected by wires to the interior of the heart. It sounded like something out of science fiction.

If Ann needed an ICD, then the medics weren’t going to be able to make Ann well. Only 48 hours before, they had told us that she would be cured. What the hell was going on?

Looking back, it is hard to understand why the Castle Hill team didn’t try alternative drug therapies when they had clear evidence that the Bisoprolol was not controlling the arrhythmia. No other anti-arrhythmia drugs had been tried. It would later be discovered that other drugs would indeed control Ann’s arrhythmia much more effectively than the Bisoprolol but at this stage, there had been no attempt to see if alternatives would manage the condition.

After a second sleepless night on the Ward 28 bay, Ann was at her wit’s end and put in a request to be moved to a single room. She also asked for further news on plans for her treatment.

One of the cardiac nurses went to see Dr B (the first electrophysiologist) on Ann’s behalf and he was able to tell her that the decision had now been taken that the ICD implant was the best course of action and that Ann was now on the ‘Critical List’ for the implant surgery.

At 12.30 that day, Ann and I met with the second electrophysiologist, Dr K at our request to learn more about the ICD implant. She gave us the best part of an hour of her time (probably more than all other conversations with doctors to date added together). Her plain speaking was like a breath of fresh air and she talked to Ann as an equal rather than down to her, including plenty of medical detail in recognition of Ann’s own medical training.

It is so sad that these helpful conversations were the exception rather than the rule. We had found that so many doctors ignored Ann’s intelligence and medical knowledge and spoke in a condescending manner. I understand of course that doctors have to explain concepts to people with no medical knowledge or limited understanding but 30 seconds in Ann’s company was enough for anyone to see that she is bright, articulate and knowledgeable. The endemic arrogance and pomposity of so many of the doctors never ceased to amaze me.

Before I outline what was discussed with Dr K, it is time for another medical detour. Last time, we looked at the cardiac circulation (the plumbing).  This time, we need to take a quick look at the electrical system and so below, I offer a layman’s rather simplified version of the heart’s wiring which should be read alongside the diagram below. Please forgive me if I sound like one of those condescending doctors.

So, the electrical impulses that control the beating of the heart originate from the Sinus Node (also known – mainly in the USA I think – as the Sinoatrial Node).  This is best described at the heart’s built-in natural pacemaker. This emits electrical impulses which control the rate at which our hearts beat – speeding up if we are exercising and slowing down when we are at rest.

This signal spreads through the walls of the atria (the top chambers of the heart) which then contract and in so doing, create the first part of a single heartbeat (the ba of the ba-bam).  The signal then passes through another very special point called that Atrioventricular Node (or AV Node) which, as the name suggests, lies between the atria and the ventricles.  By some remarkable mechanism I don’t begin to understand, this slows down the signal before it arrives at the ventricles.  If it did not, the ventricles would contract at the same time as the atria and there would be no pumping action. So, having been slowed down by the AV Node, the signal arrives into the ventricles, where its pathway divides into two branches – known as the left and right bundle branches. From the bundle branches, the signal is distributed throughout the walls of the ventricles which causes the ventricles to contract – just a little later than the atria did.  So, we get the ‘bam’ of the ‘ba-bam’. – the second half of the heartbeat.

OK, now those without medical training can hopefully make more sense of what Dr K is about to tell us.

Dr K explained that the fresh telemetry data (the ECGs) from the two recent ambulance trips had had proved extremely useful and had confirmed beyond doubt that arrhythmia was clearly ventricular rather than atrial and so the aberrant nerve signals causing it originated in the ventricles and so would almost certainly be impossible to ablate in an EP session.  They could try, but the chances of success were less than 10% and significant damage to the heart could be caused by multiple ablation attempts.  Her recommendation therefore was that the EP route was abandoned in favour of the ICD implant.

Dr K explained that, because Ann was ‘fairly skinny’ on the upper chest, she intended to carry out a rather unusual ‘deep implant’. That is to say, the device would be implanted behind the pectoral muscle wall, rather than subcutaneously in front of the pectoral muscles which is the more typical implant site.  Not only would this be an aesthetically better solution (the ‘generator’ would not stick out) but it meant that the device and the leads entering Ann’s heart through the blood vessels in her chest would all lie in the same plane and so be more stable.

We didn’t know it at the time, but the consequences of choosing the deep implant would be catastrophic for Ann.

Dr K also said that the two-lead version of the implant would be used. The first wire, attached to the inner heart wall of the right atrium, would act as a traditional pacemaker and would take over from the sinus node to pace the upper chambers of the heart such that the rate would not fall below a set rate – probably 60 beats per minute.  The reason for this is that the beta blockers could cause Ann’s heart to beat too slowly and so setting a minimum heart rate would allow the beta blocker dose to be increased without putting Ann in danger.

Above 60 beats per minute, the pacemaker would allow the sinus node to set the heart rate.  In that way, Ann’s heart would speed up naturally when Ann was in the gym but when her heart tried to return to a rate of less than 60 bpm, the pacemaker would take over again and stop her heart from beating too slowly.

The second wire, attached to the inner wall of the right ventricle, would intervene in one of two ways.  If Ann went into ventricular tachycardia, it would first take over pacing from the atrial wire (generating signals in the ventricles which would override the aberrant signals of the arrhythmia) but at the much faster tachycardia rate and then ‘slam on the brakes’ to try and slow the heart to a safe rate.  Dr K described it as ABS braking for the heart. The correct cardiology term is ATP, or anti-tachy pacing (also called ramp pacing in the USA I believe).

If that failed a number of times, then the ICD would deliver a defibrillator shock to stop (depolarise) the heart and allow it to resume in sinus rhythm.

Dr K and Ann also discussed the use of a pressure dressing as Dr K explained that there was a high risk of bleeding due to the anti-clotting drugs that had been prescribed following the stent placement.  In addition to the Clopidogrel anti-platelet medication and the soluble aspirin Ann was taking every morning to thin the blood, Ann was also receiving daily injections into her abdomen of Fragmin (a drug from the Heparin family) whilst she was in hospital.  Together, the presence of these drugs in Ann’s system meant that she was at enormously increased risk of post-operative bleeding.

Indeed, there was a strong case to be made for withdrawing these drugs for a period (usually several days) before any surgery but this did not happen. The pressure dressing, Dr K explained, may be needed to prevent a very unpleasant haematoma. Ann had already demonstrated that she was capable of producing an impressive haematoma when her angioplasty had been carried out via the radial artery in her arm – and that had been when she wasn’t on the blood-thinning medication.

DR K was right. A pressure dressing was very much needed.

A lot of other ground was also covered and it is fair to say that the discussion brought us a lot of reassurance. One final reassurance was that, because the device case was believed to contain nickel, an allergy test would be carried out to establish whether Ann’s stated allergy to nickel was indeed ‘non-existent’.

Also that day, Mad Betty was moved out of the bay amid rumours that she had tested positive for MRSA.

The next day, Thursday 20th August, I was woken at 6.00am by a phone call from Ward 28 informing me that Ann had had a serious further episode of ventricular tachycardia and had been transferred back into CMU and asking me to get there as quickly as possible.

This was the first time they had called me to say that she was in danger and I was scared out of my wits! The scene played out in the bathroom a few days earlier, had nearly happened again – and still might happen.

When I got there less than an hour later, Ann was very poorly.  They had had to administer a bolus of Amiodarone to stabilise her but she remained under observation back in CMU. These events reinforced the urgency of the implant procedure. They should have also told the medical team that Ann was on the wrong anti-arrhythmia drug.

That day, we learned that the allergy people at HRI had refused to come to Castle Hill to do the allergy test so the utterly insane decision had been made to take Ann, a seriously ill patient with a life-threatening condition, along with a full cardiac nursing team and all the portable monitoring and life-saving equipment by ambulance to Hull to enable someone there to stick a plaster on Ann’s back!

Mohammed had refused to come to the mountain so it had been decided to move the mountain, and most of the surrounding mountain range, to Mohammed. Crazy.  Just plain crazy. I simply could not believe the regularity with which the Trust demonstrated the remarkable depth of its ineptitude.

The following day, Friday 21st August, we learned that – finally – a sensible decision had been made about the allergy test.  Hull Royal would send a test kit in the post!  Somebody had finally worked out that a first class postage stamp was cheaper than sending an entire cardiac support team by ambulance to Hull.

Thank heaven for small mercies!

Ann had endured another much interrupted light sleep, partly as a result of the activity in the ward bay but also because of Ann’s growing fear of going to sleep and laying herself open to another VT episode.

Dr K informed us that the operation would take place next Thursday 27th August.  She had managed to obtain a coated ICD so the allergy test had become rather academic.

Ann’s serum magnesium levels were down despite the supplements she had been given whilst in hospital.  No-one seemed interested in why that might be. Low potassium and magnesium levels are a contributory factor in arrhythmia, which is why they were being monitored. The problem seemed to be that no-one was actually taking any notice of the results.

On the Saturday, my adult son and daughter and I did a formal CPR training course so that in the event that Ann had another out-of-hospital cardiac arrest, we would be rather better prepared than I had been the first time around. If Ann did get into difficulty, it was just as likely to be in the company of Pugsley or Veruka and neither had any training so it seemed like a very sensible thing to do. If anyone reading this hasn’t been trained, please, please put aside an hour of your time to get the basic knowledge. I have now been in this situation twice, once for Ann of course and once for a complete stranger who collapsed in the street in York years before. I and his daughter managed to keep him alive (me on chest compressions, her on mouth-to-mouth) until the ambulance arrived on scene – so the value of this knowledge cannot be exaggerated.

One important thing we learned during this training  (which seems to be little known) is that portable defibrillators talk to you and tell you what to do. Consequently, it is all but impossible to do the wrong thing in an emergency. I know that if I had been in a situation when I had to use a portable defib, I might have avoided it for fear of killing the patient. I don’t doubt that others would similarly shy away from using a defibrillator. If you find yourself in this situation, have no fear, the machine is smart and will guide you through it.

Whilst we were doing our CPR training, Ann was moved back to Bay 3 from CMU and was stable enough to be allowed a shower at last. She also learned that the general anaesthetics session scheduled for the 27th that included Ann’s operation had been cancelled by ‘the management’ because Dr B was on holiday.

Ann’s life would remain in danger because of a ‘management’ decision.  The insanity continued. Dr K said there was nothing she could do. The same wasn’t true for me. I may a few phone calls.

The next day, Sunday 23rd August was our 35th Wedding Anniversary – the first we had spent mostly apart. The unit was grossly under-staffed. No doctors were sighted on the unit all day and even the morning tea trolley failed to turn up.

I had been doing some amateur research into magnesium serum levels and their effect on arrhythmia and had learned that both champagne and plain chocolate have high magnesium content.  As it was our anniversary, I took both into the hospital and to my surprise, I was allowed to administer my rather unusual magnesium supplements not just to Ann but to all the patients in the bay. It was a welcome interlude of light relief in an otherwise awful situation.

On Monday, the operation was reinstated for Thursday 27th at 10.00am.  Sense had prevailed. Perhaps my phone calls had made a difference. Ann was informed that she was likely to be discharged the following day.

Her magnesium levels were now improving finally.  Must have been the champagne.

Tuesday came and Ann had the headache from hell, complete with shooting pains down her arms. Feeling awful.  Dizzy, sick and coughing.  Asleep most of day, she didn’t even wash or brush her teeth (which for a dentist, is pretty serious). Something was wrong. No-one seemed at all concenred.

An envelope arrived from Hull Royal.  The allergy test plasters were put onto Ann’s back.

The nasty headache was still present on the Wednesday.  Ann was awake from 3.30am. The allergy tests made Ann “want to tear my skin off”. Fortunately, the plaster came off that morning.

The tests showed that the so-called non-existent allergy to nickel was in fact very real. The Professor had been wrong. As well as a severe reaction to nickel, there was also a less severe reaction to cobalt – both of which were in the stent (see photo: Cobalt above, Nickel below)

Ward Sister B went to see Ann to discuss her traumatic experiences over the previous three months.  As ever, Sister B was compassionate and understanding.  An outstanding nurse who does a brilliant job in often very difficult circumstances. She leads a largely excellent specialist nursing team on CMU and Ward 28.

Ann was swabbed for MRSA (no doubt because of her contact with Mad Betty).  If positive, it would affect Ann’s ability to practice dentistry.  She never got the results. We assumed that the results were negative.

Thursday. Operation Day.

Ann didn’t get much sleep again.  Another dementia sufferer had arrived in the same bay and had been causing havoc through the night.

She went down for the surgery on time and I stayed in the department, hanging around in the café, where I had become a well-known regular. Ann returned to the ward at around 12.30. She was groggy of course and attached to a saline drip.

And there was NO PRESSURE DRESSING. The wound in Ann’s chest had a completely standard dressing, despite the obvious risk that this presented.

Ann was in terrible pain and needed regular pain relief including morphine which did little to help. Senior Nurse C and Nurse D were on duty.  Nurse C is an outstanding nurse.  Experienced, knowledgeable, decisive and always supportive and helpful, Nurse C is the outstanding star of ward 28.  I would prefer to name her so that she receives the credit which she is undoubtedly due, but it would be unfair to name some and not others. I may have to name everyone later. What Nurse D lacked in experience (which was a lot as she was new to cardiac nursing) she more than made up for in compassion. She was delightful. Ann had formed a  close bond with both of them during earlier admissions. Having the two of them there after the operation was immensely reassuring. You know who you are ladies, thank you for your compassion.

As I have said, Ann eats a gluten free diet and as a result, there isn’t much choice on the hospital menu.  In fact, the few available choices tend also to be dairy and electrolyte free too.  In essence, the food available to Ann was almost nutrient free.  So that day, I smuggled in a poached salmon and feta cheese salad to provide a bit of nutrition and fed it to her. She was unable to feed herself due to the pain caused by moving her arms.

When the night shift came on duty, Ann was told that she would have to ring the buzzer if she wanted pain relief.  Ann insisted that pain relief was administered by default at intervals as she may not be able to reach the buzzer. An argument ensued, which Ann eventually won.

Ann only managed one hour sleep that night, partly due to the pain and partly due to the dementia patient in next bed so later the next day, she was transferred to her own room so she could finally get some rest. She was beyond exhaustion.

She was also taken down for x-ray to make sure the wires were correctly placed.  All was apparently as it should be. The device was tested and working.

Ann complained about the level of pain and feeling of nausea. More morphine and anti-emetic were written up. None of the staff checked for a possible cause of the excessive pain. None of the staff looked at the operation wound site.

It was the first real indication we had that some of the staff were not taking Ann’s pain seriously. We formed the impression that they thought that Ann was being a bit over-dramatic. To some extent, that is understandable as patients would not normally experience the level of pain that Ann was enduring.  On the other hand, it should have been a warning sign that something was not as it should be. That warning sign was ignored.

Given the high risk of a post-operative bleed and the fact that the hospital had elected not to withdraw the blood-thinning medication for a period prior to the procedure, the staff should have been on a higher state of vigilance in any event. Given that Ann had already experienced a horrible haematoma even without the blood-thinners should have made regular checks of the wound site even more of a priority. Given that no pressure dressing had been used either, they should have been watching the wound site like hawks.

But they didn’t even glance at it.

Saturday. Ann had a nose bleed and spangled vision on waking and was still in terrible pain. She was due to be discharged the same day.

The doctors had been to see her and the nurses were preparing her discharge letters but 48 hours after the surgery, no-one had yet bothered to look at the wound or the huge haematoma that had by now formed around it as a result of the blood-thinning medication and missing pressure dressing.

To make matters worse, the discharge medications had been incorrectly written up with Bisoprolol at 1.25mg instead of new level of 2.5mg (the dose had been increased following the operation as the ICD now protected Ann from the slow heartbeat the higher dose would cause).

The incompetence continued.

Ann pointed it out and the corrections were made but she was told that she would only be seen on the pacing clinic from this point so we had no idea how the meds would be reviewed, how often, or by whom. It was all very worrying.

At 4.00pm, Ann suffered an episode of non-sustained ventricular tachycardia.  As it was mercifully brief, the ICD didn’t intervene. The nurse had placed the buzzer out of reach so Ann had to bang on her table for ten minutes with her one barely functional hand to get attention.

Eventually, she was heard by the senior nurse, who, when Ann explained about the VT said that it couldn’t have been VT because nothing had shown on the monitor.  “I’m not wearing a bloody monitor!” Ann replied. “It’s my discharge day, you took it off!”

Incompetence at every turn. Enough was enough.

Ann refused to be discharged and insisted that she see a consultant. There was no way she was going to allow them to kick her out again  until she had been examined properly.

Dr D (the very kind consultant who had re-admitted Ann before the angioplasty) duly arrived and immediately took a look at the wound and surrounding area.

She immediately cancelled the discharge.

She confirmed that there was a “massive haematoma” (her words not mine) which the entire medical team had failed to notice. Within minutes, Ann was put on powerful emergency intravenous antibiotics and intravenous painkillers.  Dr D explained that there was a very real danger of infection developing in the wound and surrounding tissue.  To her credit, Dr D kept a very close eye on Ann from this point and displayed genuine compassion towards her.

Had Ann not insisted on seeing her, she would simply have been sent home. She would not have received the treatment and God only knows what might have come to pass. A less stubborn patient with less knowledge would have been sent packing and placed at enormous risk. It was unforgivable.

Even with the treatment, the consequences for Ann of the haematoma would prove to be life-changing. We will find out much more about those consequences later in our story.

Sunday was a truly horrific day for Ann. Alternating IV morphine, paracetamol and oral codeine phosphate were administered in an attempt to make the pain bearable but with little success. Instead, the pain continued to escalate.  The bruising had by now spread down left arm and was now past the elbow. The haematoma would eventually extend from her left elbow to her right shoulder.

Monday wasn’t much better. Ann was still not progressing as expected and still needed morphine on top of the paracetamol and codeine. She was starting to feel like a nuisance. Her dressing was changed to a transparent dressing that allowed her to take a shower but as yet, she was incapable of doing so.  She was still experiencing feelings of nausea and so still needing anti-emetics.

Nonetheless, Dr D said that Ann could go home the following day if she had guaranteed 24/7 nursing care. I cancelled all plans I had for work for the foreseeable future so that I could bring her home.

That evening, Ann experienced her first episode of anti-tachy pacing by the ICD.  It was the first time that the device had ‘woken up’ and intervened. On the one hand it was reassuring because it demonstrated that the device was indeed working.  On the other, it meant that Ann would be discharged with the arrhythmia still not controlled by the drugs. You could be forgiven for thinking that alternative drugs should have been considered but Ann hadn’t even seen the electrophysiologists since leaving the Lab. There was no follow up from the doctors responsible for the implant and the arrhythmia medication.

So Tuesday was discharge day (again).  The pain was unbearable. Ann felt like she would throw up each time she tried to move. A physiologist paid a visit but Ann felt that she had no concept of how much pain she was in and so she contributed little of value.  However, the delightful Nurse J (another excellent member of the nursing staff) helped Ann to shower which seemed like a heaven-sent luxury after the past couple of weeks.

The haematoma in Ann’s left breast above the implant had hardened.  Dr D said that Ann would need to keep a very close eye on it and if it got any worse at all, she must seek immediate medical attention but despite this, she would allow Ann to be discharged that afternoon as long as I didn’t leave her side.

With this in mind, Dr D said she would add Ann’s name to the ‘Direct Admissions List’ so she could return quickly to Castle Hill without passing again through the ED in Hull. Ann was delighted.

A means to avoid passing through the ED was a precious gift indeed.

The discharge letter sent to our GP didn’t even mention that Ann had been admitted following a cardiac arrest.  It said she had been admitted with dizziness!

Dizziness!

They had come close to killing her and they passed it off as a dizzy spell? Didn’t they think that our GP needed to know that Ann had suffered a cardiac arrest for goodness sake?!

Utterly beyond belief.

And so she came home at last. Ann had spent a further 16 nights in hospital, bringing her total to 28 nights.

Little did she know that she wasn’t yet half way to her eventual total.

Go straight to Chapter Six

Chapter Six – Shocks

So Ann arrived home at last on Tuesday 1st September 2015. She was still in terrible pain from the haematoma.  Over the difficult days that followed, she also experienced a number of arrhythmia episodes and what she believed were at least two episodes of anti-tachy pacing by the ICD.

It was pretty clear that Ann was considerably less well than she had been following her previous discharge. It seemed that every time she was admitted, she was discharged in worse condition.

This shot was taken the day after discharge on Wednesday 2nd September and the visible effects of the haematoma are starting to show. It was about 10 days later before the extent of spread was fully visible (see narrative below)

On the Saturday evening, Ann shouted to me in extreme distress saying that she was going into VT again.  She was lying on the sofa in the living room as usual. I was preparing a meal in the kitchen. I hadn’t even reached her just a few yards away when she screamed at the top of her voice.

The ICD defibrillator had shocked her!

For this to happen, the ICD must have attempted anti-tachy pacing four times and each time, it had failed to correct the VT.

I immediately called the emergency number on Ann’s ICD card (the CMU nurses station at Castle we later established.).

It wasn’t answered. It just rang and rang.

We would have reason to call the number many times. The emergency number was never answered.

NEVER.

I therefore called Ward 28 and, thank heavens, the call was answered by senior nurse, Nurse C (the shining star I have talked about previously).  I quickly explained that Ann had been shocked and was very unwell.  I said that I would be driving her straight to the ward.

Nurse C explained that we would have go via the ED and I responded saying that I had no intention of doing anything of the sort given the way Ann had been treated there at her recent visit but that I didn’t need to anyway because Dr D had arranged for Ann to be on the direct admissions list.

Nurse C asked us to wait whilst she checked and then came back on the line and said it was OK for us to come straight to Castle Hill. Thank God! She would arrange for a wheelchair to be left in the entrance lobby.

The 20 minute drive was a very scary one given that the ICD could shock Ann again at any time but we arrived without further incident, pulled straight into the ambulance bay and the wheelchair was exactly where it was supposed to be.

Nurse C soon settled Ann back into a bed before she finished her shift.

Ann had managed to be away from the cardiac unit for only four days.

 

The following morning, Sunday, the defibrillator shocked Ann again.  Being shocked with 800 volts straight into your heart (more than three times what you would get if you stuck your fingers in a UK plug socket) is scary enough but knowing that it is only happening to stop you dying is even worse.

Worse still, this time the VT returned soon after the shock and Ann had to be chemically cardioverted again.  Clearly, the beta blockers weren’t even close to controlling the tachycardia (which of course had been evident for some time – it had simply been ignored).

One of the registrars again suggested oral Amiodarone in lieu of the beta blockers as a long term treatment.  I can only assume he hadn’t read past the letter A in the formulary (the official list of prescribable medications) as there were many other options available further down the alphabet which wouldn’t destroy Ann’s liver, lungs and eyesight.

Ann was struggling to stay awake. She was utterly exhausted but now more than ever, terrified to go to sleep – because the VT was still tending to happen when Ann was at her most relaxed.  She was terribly scared and unable to be alone.  Our daughter and I took turns to be at her bedside all day.

The nursing staff finally managed to get a cannula into Ann’s scarred and collapsed veins at around midnight when they administered a cocktail of urgently needed drugs including diazepam to help her relax and more emergency amiodarone to prevent further shocks.

In the morning, Ann was still experiencing lots of ectopic beats as well as tingling in both hands (presumably caused by lack of perfusion as a result of the arrhythmia).

Dr K paid Ann a visit.  She was generous with her time once again and a lot of ground was covered.  First, she apologised for the post-operative pain and shocks.  She and Ann discussed possible causes and Dr K suggested that a possible over-excretion of electrolyte metals, principally magnesium and potassium, may be to blame.  IV infusions of both were given and instructions issued to closely monitor serum electrolyte levels.  A 24 hour urine collection was ordered to check electrolyte excretion.

There was also discussion of a potential further session of electrophysiology study with both Dr K and Dr B (the other electrophysiologist we met earlier) in attendance. Dr K said there was a 60% chance of success. This completely conflicted with the 10% chance Dr K had reported when this was discussed prior to the implant surgery.

The six-fold increase in the likelihood of success was never explained. I’m afraid that I believe that the chance of success was minimised when it suited the argument in favour of an ICD, and maximised when it suited the electrophysiologists to be optimistic.  The chances of success couldn’t actually have changed in the fortnight between the two discussions.

The further EP study never materialised anyway.

Dr K also said that she would arrange a treadmill test which would hopefully give Ann some confidence that she could undertake some physical activity without experiencing further symptoms.

Fortunately, Dr K rejected out of hand the repeated suggestion of giving Ann long term oral Amiodarone (as Dr B had done earlier). Instead, the Bisoprolol was titrated up to the maximum dose of 10mg as Ann appeared to have developed a tolerance to it (and the ICD was now there to prevent bradycardia) and there was the first mention of a possible switch to a Class 3 anti-arrhythmia drug instead if the increased Bisoprolol dose didn’t do the trick.

The next day, Tuesday 8th September, the nursing staff told Ann that her heartbeat was completely normal but Ann knew that wasn’t true. She could feel that she was still experiencing arrhythmia. Nonetheless, she was told that there had been no dangerous arrhythmias for 36 hours.

There was uncertainty among the staff about whether Ann was going for further EP studies. The staff came in to check whether a cannula was in place in readiness for being taken down to the lab but in the event, there was no EP study.

Dr L was on ward rounds so nothing of value was learned.

I am going to indulge in a minor rant at this point by way of explanation of the statement above.

Dr L has a nickname amongst the Castle Hill cardiology staff.  I cannot tell you what it is because it is a play on his real surname and so to do so would identify him.  What I can say that its meaning is that he is not competent.  Dr L is an interventionist and he regards electrophysiologists with open contempt. He is also a narcissist who likes to strut like a peacock on ward rounds with a gaggle of sycophantic medical students or F1s in tow, telling them how interventionists ‘don’t take any notice of all this electrical mumbo-jumbo’.  Well, Dr L certainly doesn’t take any notice and to me, that makes him not just an idiot, but a real danger to patients. How in God’s name someone like him ever rose to consultant level in a cardiology department beggars belief.

Rant over (for now).

The promised 24 hour urine collection didn’t happen.

During the day, the discharge rate from the ward suddenly increased and post-op patients were now being sent to a different ward. Ann suspected that an HAI was present in the ward and Dr L did nothing to dispel that impression when he said that he wanted Ann discharged as soon as possible so that she “didn’t pick up anything nasty.”

That night, Nurse C came back on duty.  She checked the telemetry data and informed Ann that she had in fact gone into “Amber zone ATP” several times over the last couple of days.  Ann had been correct about what she was feeling and the staff had not been telling the truth about her heart rhythm.

I don’t doubt of course that they were trying to avoid causing anxiety but they in fact achieved the exact opposite because Ann knew she was being lied to.

On the Wednesday, Ann experienced two sustained VT episodes between 2.00 and 3.00am which she slept through with another at 5.15am which woke her.  All were anti-tachy paced out by the ICD.  We were told that the ICD had in fact paced Ann down on a number of occasions.

When Ann asked about the treadmill test, she was told that there was nothing in the notes about one being required. The haematoma pain was still present and Ann was extremely anxious as a result of her continued unstable condition.

Ann requested a further discussion with Dr K but she wasn’t in.

The urine collection was started.

Neither of the EP consultants were around on the Thursday but Ann had a long conversation with one of the EP registrars and one of pacing technicians.

She was told that she would be discharged the following day, despite the continued arrhythmia. It seemed insane.

There were several further ventricular tachycardia episodes over that night with the ICD performing further anti-tachy pacing. Ann was becoming extremely distressed at the lack of progress in getting the arrhythmia under control and spent much of time quietly crying. One of the nurses from CMU sat with Ann and consoled her during much the night.  It was an extraordinary act of kindness.

On Friday, there was still some doubt about whether the treadmill test would happen as it was discovered that the request form had not been processed correctly but eventually, the test was arranged.  Ann managed 9 of the required 10 minutes.  There was no induced VT and only a few ectopics.  Ann’s BP returned to 127/70 after 5 mins so she was judged to have passed the test.

However, later, after Dr K reviewed the telemetry records, Ann’s discharge was cancelled again. At last, the decision was taken to abandon the Bisoprolol and start instead on a new anti-arrhythmia drug, Sotalol (a class III drug from the same group as Amiodarone but without the horrendous side effects).

The next day, Saturday 12th September, Ann was dizzy on waking and her legs were aching after the exercise of the treadmill stress test. The pain in her left breast had become much worse and there was increased swelling all down Ann’s left side once again – presumably also as a result of the activity of the treadmill test but despite Ann complaining of renewed pain, none of the staff bothered to examine the wound or the haematoma – just as before. Lessons had not been learned.

Ann was started on the Sotalol at 40mg b.d. but told it might be titrated up once she became used to the side effects.

Dinner was inedible and Ann was in too much pain anyway so she didn’t eat anything.

A doctor finally came to examine Ann at 11.00pm.  He said the bruising was really coming out on Ann’s side and back now. He told her that she would need to stay on regular pain killers for some time as the haematoma could take weeks to disperse.  However, there was still no sign of a raised temperature so it appeared that the risk of infection had passed.

The next day, Sunday, Ann’s heartbeat felt very irregular on waking but otherwise, she was feeling a little more stable.  There was a feeling of nausea whenever she stood but it was assumed that this was a side effect of the Sotalol kicking in. These drugs take a while to ‘load’. That is to say that it takes a few days to build up the level of the drug in the bloodstream. With anti-arrhythmia drugs, there are often some fairly unpleasant side effects initially but as the body adapts to the new drug, these often subside over time.

Dr M, then the clinical lead on cardiology, did the ward rounds and said that subject to Dr K’s agreement, Ann could go home the next day.

Ann had a very unsettled night with ATP waking her up again.  This had become something of an established pattern with the arrhythmia still tending to happen either as Ann was going to sleep or already asleep.  Ann’s fear of sleeping was still a problem.

On the Monday, she spent an hour talking to the specialist ‘defib nurse’, Nurse K.  She had been introduced to Ann by the kind CMU nurse who had sat through the night with Ann a couple of nights earlier.  Ann found the discussion very helpful and so Nurse K also undertook to put Ann in touch with another specialist nurse, the ‘arrhythmia nurse’, Nurse N.  Nurse N was to become an important support to Ann as the saga continued.

Ann was discharged early that evening after the usual 12 hour wait for the pharmacy to issue the medication. She had now spent 37 nights in hospital. Now, she had the ICD, and a new drug which should manage the arrhythmia. Surely, she had reached the end of the hospitalisation.

Not a chance.

This time Ann managed 5 days at home before she was on her way back to hospital.

By now, our normal life was becoming a distant memory. Normality was four months in the past and it seemed like much longer. Ann was spending more time in hospital than at home. My appearances at work were few and far between and despite the heroic efforts of my colleagues, the consequences of my absence were now having a serious effect on our business.

My days were an endless stream of hospital visits, punctuated with laundry, shopping and of course, keeping friends and family informed of Ann’s progress.  The grass still grew and needed cutting, the bills still needed to be paid, the cat still expected to be fed. Somehow, these mundane everyday tasks seemed so much more difficult. My days were stressful. Ann’s days were truly terrible – full of boredom, frustration and pain.

So, it was devastating when once more, it became clear that she should never have been discharged and would soon be back at Castle Hill.

That realisation came late afternoon/early evening, on Saturday 19th September when Ann once again experienced severe arrhythmia and dizziness.  We considered driving to Castle Hill but we felt the risk of a defibrillator shock was too great and so we called an ambulance as we had been advised.  My daughter accompanied Ann in the ambulance and I followed in the car a little later. It is strange looking back that I chose not to travel with her. Was I becoming blasé about the whole thing or was it that I just couldn’t cope with another blue light ambulance trip? I don’t really know. For whatever reason, I stayed behind and did the by now familiar packing in readiness for yet another re-admission to Cardiology.

Ann had two further VT episodes in the ambulance which were paced out relatively quickly.  Her BP was 186/110 en route.

I arrived in resus around 7.00pm.  Ann and Veruka reported that the ED consultant had been dismissive about the seriousness of Ann’s situation and had suggested that her condition was the result of anxiety! By the time Ann had arrived at the ED, her heartbeat had settled to a paced 60 beats per minute so she was no longer displaying the worrying symptoms that led to the 999 call. My daughter was absolutely furious that once again, Ann was experiencing the same attitude that preceded her cardiac arrest.

Our confidence wasn’t increased when shortly after, a young nurse came to take bloods and succeeded in removing the pressure cuff without first closing the cannula and so sprayed blood all over the cubicle.

A second serious arrhythmia episode began at around 10.00pm and lasted 45-50 minutes. Ann’s heart rate shot up to 115 to 125 beats per minute with a peak rate recorded on the monitor at 173BPM.  Her blood pressure reached 173/98 during the episode.  Oddly, the ICD didn’t intervene.

The A&E consultant experienced a very sudden if belated shift in attitude.  Clearly, anxiety had nothing whatsoever to do with what was happening.  The consultant spent most of the next few hours hiding from us.

During the episode, we pointed out that Ann had yet to take her evening dose of Sotalol and suggested that it might be wise to administer it.  Ann’s heart rate spontaneously returned to its usual paced 60 bpm around 20 minutes after she took the tablet.

The consultant then came back to tell us that he had spoken to cardiology and it had been agreed that Ann would be kept in for observation and that the cardio reg’ would see her in the morning.  He also said that Ann’s serum potassium level was extremely low.  I explained that this was becoming a recurring theme and questioned why no-one chose to investigate why.  The consultant simply walked away without answering the question and resumed his hiding.

A little later, following the decision to admit Ann to AMU/AAU, the medical register came through to see her. He was a really pleasant guy. He explained that her potassium was way down at 2.6.  Ann told him that it had been measured at 4.7 just a few days earlier (before her recent discharge).  The registrar ordered an immediate IV potassium infusion (500ml over 2 hours) which was started at around 11.30pm – which was the right thing to do given that Sotalol can be extremely dangerous when taken with low potassium levels.

Around midnight, as Ann was now stabilised, I decided to head home and give her a chance to get some sleep.  I went over to the desk in resus and had a very pleasant short chat with the medical registrar who was now working at a computer.  He said he was doing some online research into possible reasons for Ann’s worrying blood results.  He explained that it wasn’t just the potassium which was causing concern, but also the calcium and other levels.  I asked if they had tested for magnesium levels as Castle Hill had seen fit to give magnesium infusions previously.  He said that no, they hadn’t but he thanked me for the suggestion and said that it may be the magnesium that was pulling down the potassium so he would re-run the bloods and include a magnesium in the new test.

Ann recalls that further bloods were taken in resus shortly after I left.  She also received a magnesium infusion after the potassium.

Ann was moved through to AMU at around 2.30am on Sunday 20th September. Later in the morning, she again overheard the doctors discussing her.  They repeated that her “bloods are all over the place”.

Soon after, the cardiology registrar arrived and began by telling Ann that all her bloods were “fine”.  Ann explained what had happened the previous evening but the registrar was insistent.  The blood results were normal! How could that be?

Ann also recalls asking to go to the toilet that morning.  She was told that she couldn’t because she had to remain on a monitor at all times – so she would have to use a bedpan.

Ann was transferred to Castle Hill ward 28 around 2.00pm. The transport provided didn’t have a cardiac monitor. Given that Ann wasn’t allowed to remove her monitor for the two minutes it would take to go to the toilet, a transfer to Castle Hill without a monitor seemed rather ridiculous – and risky. The driver initially refused to take the risk of moving Ann without a monitor attached.  In the end however, the staff insisted that he take Ann without a monitor and eventually, he relented.

It was an avoidable and totally unnecessary risk.

When Ann nonetheless arrived safely at Castle Hill, she spoke to senior Nurse C and raised the issue of the conflicting information about the blood results.  Nurse C reported that there was only one set of results, taken at 8.30pm – which showed a potassium level of 3.9.  There was no sign of the 2.6 result and as for the second test, it wasn’t there at all.

It would emerge many months later that the only possible explanation was that Ann had received someone else’s blood results (which is why they didn’t appear in her records). Her serum electrolyte levels were never at the low levels reported. It was bad enough that Ann received 2 infusions that weren’t necessary but someone else presumably didn’t get the infusions they desperately needed. I can only hope the consequences weren’t serious.

Once again, the Hull Royal ED had demonstrated its life-endangering incompetence.

The following morning, Monday, one of the pacing technicians visited Ann and downloaded the telemetry data from the ICD.  He said that everything was very encouraging!  The data reported that Ann’s heart rate had been consistently between 60 and 80 bpm and that there had been no VT.  Given that 36 hours earlier, we knew for a fact that Ann’s heart had been in VT at a peak rate of 173 beats per minute, this simply added further confusion into the mix.

It didn’t make any sense at all. Ann’s arrhythmia was caused by anxiety – then it wasn’t. Ann’s electrolyte levels were dangerously low – then they weren’t. Ann had dangerous tachycardia – then it had never happened. It felt like the whole world was going completely mad!

The technician also mentioned that the signal from one of the leads was rather weak and that he was switching off the atrial wire altogether whilst Ann was in hospital as it had been pacing upwards too sensitively – increasing her heart rate even when Ann was just moving in bed during the night.

This news completely contradicted what Dr K had told us before the implant.  She had said that the device would be set for the atrial wire only to prevent the heart rate falling below 60bpm (because beta blockers would suppress below this) but would allow sinus node to naturally regulate the heart rate above 60bpm so that Ann could resume her full exercise programme.

There wasn’t supposed to be any upwards pacing at all.

Later that day, the registrar on duty contradicted the technician saying that the atrial wire must still be on because there was nothing in the notes to say that it had been switched off.  A senior nurse present supported Ann’s assertion that the atrial wire had indeed been switched off.

Nobody even bothered to re-check the device to establish which was true.

It was like we were in a lunatic asylum. Nothing but confusion and chaos.

Shortly afterwards, the registrar returned and in a short conversation mentioned “By the way, your ventricular lead is detached and the implant surgery will have to be repeated”!!  Ann was informed that Dr K would be on holiday and so Dr C would be performing the new procedure.

“BY THE WAY!!!”

For God’s sake!

What is it about doctors that makes them completely incapable of understanding that news like this is utterly devastating and needs to be delivered with compassion and sensitivity?  Do these idiots they have part of their brains removed at medical school?

The ‘weak signal’ in the ventricular lead was in fact no signal at all.  Little wonder that the ICD didn’t record the VT or intervene.  The atrial wire was picking up the atrial pacing rate of 60BPM but the ventricular wire couldn’t detect the ventricular tachycardia at 173BPM! So, one lead was detached altogether (and flapping around inside Ann’s heart, potentially damaging the inside of the heart) and the other was now switched off, or possibly not.  Ann also had potentially dangerous electrolyte levels, or possibly not.

Basically, the doctors didn’t have a bloody clue what was going on.

And Ann was now completely unprotected by the device so her life was again very much at risk.

She was utterly distraught at the news that the surgery had to be repeated and angry at the disgraceful way in which the news had been delivered. To make matters worse still, was now suffering increased confusion and memory loss as a side effect of the Sotalol and so she was less well equipped to cope with this news anyway. She was inconsolable.

Things couldn’t possibly get much worse.

Oh yes they could.

What happened next would ruin the rest of Ann’s life.

Go straight to Chapter Seven

Chapter Seven – Implant Two

Ann had spent 40 days and nights in hospital when she learned that the ICD implant had failed and would need to be repeated.

No-one questioned why the ventricular lead had displaced but we believed that it must be in some way connected to the haematoma.  Surely, it seemed to us, if there was a “massive” haematoma affecting the pocket in which the device was implanted, the pocket was likely to become enlarged.  When the haematoma was resorbed, the ICD would be in an oversized pocket and so would be free to move. That in turn could cause movement in the leads connected to it. Dr B would later acknowledge that this explanation was ‘plausible’. Indeed, he told us the ICD had moved.

Was what had happened to Ann unusual? Are haematomas a common occurrence in implant surgery? I didn’t know and so decided to do some research.

I discovered (from a study published in the Journal of Cardiology – so a relatively trustworthy publication) that the likelihood of pocket haematoma is just 2% for patients not receiving anticoagulation therapy or 4% if that therapy is discontinued prior to surgery. For patients like Ann taking Aspirin and Clopidogrel and having Fragmin injections, this risk rises to between 12 and 23%! Unsurprising therefore that the study also recommended that Fragmin use was discontinued 3 to 4 days before implantation and only reinstated 1 to 2 days after surgery. That hadn’t happened at Castle Hill. It further reported that a third of all patients in the study with haematomas required further surgery.

Ann didn’t just have a pocket haematoma. Hers was far more extensive and extended into the surrounding tissue and as far as her left arm and right shoulder and even across her back.

So a pocket haematoma should be rare (2 to 4%). A “massive” haematoma like Ann’s would be rarer still. Perhaps 1%. Ventricular lead displacement is also very rare. Early atrial lead displacement can be as high as 3% I discovered. Ventricular lead displacement however usually occurs in no more than 1% of patients.

So the odds of having both a post-operative haematoma and a ventricular lead displacement are pretty long.  Two 1 in 100 chances means the odds of both together are 10,000:1 against. Either Ann had been extraordinarily unlucky, or something else was at play – the most obvious being that the implant procedure hadn’t been carried out appropriately.

There is little doubt in my mind that Castle Hill’s failures a) to discontinue the Fragmin injections and b) to fail to use a pressure dressing were the cause of Ann’s haematoma.  Those failures may also have contributed to the lead displacement.

Be that as it may, the surgery had to be repeated.

On Tuesday 22nd September, Ann went for an anterior chest x-ray during the morning.  In the afternoon, she went for the lateral chest x ray which they had forgotten to do in the morning. The x-rays would pinpoint the exact location of the ICD generator and what was happening with the loose lead. At least they would if anyone looked at them.

We expected to see Dr B that day to discuss the procedure but he didn’t show up – and Ann was very keen to discuss the procedure with him. He had handed over responsibility for the first procedure to Dr K because his experience of sub-pectoral implants was limited. Now, because Dr K was on holiday, he was about to repeat a sub-pectoral implant.

In the meantime, Ann was feeling very ill and didn’t eat. She was also despondent at this latest turn of events. I did my best to be positive for her, but there really wasn’t much to be positive about.

In the early hours of the next day, Wednesday, Ann experienced marked arrhythmia again. Now she didn’t have the protection of the ICD, the risk was so much greater and it only served to raise Ann’s anxiety levels.

At midday, the staff reported that Dr B still hadn’t yet looked at the x rays.

He didn’t show up again that day, so we never had the chance to discuss the procedure with him ahead of the surgery. Ann would go down to the Lab knowing very little about what was about to happen to her. All we were told was that the procedure would take around 45 minutes so in all, Ann would be away from the ward for no more than an hour and a half.

Thursday 24th September: Operation day. Again. I came in early to be with her before and after the procedure.

Ann went down for surgery at 10.20.

As I have said, she was expected to be in the Lab for no more than 90 minutes so I wandered down to the café for a coffee or two and to read a book to take my mind on what was happening to Ann.  The first hour passed.  So did another.  I moved into the courtyard garden and wandered in circles. I was starting to get really worried. I had let the children know that their Mum had gone to the Lab and they were sending text messages at regular intervals asking whether she was back.

After a third hour had passed with no news from theatre, I knew that things hadn’t gone to plan. By now, I was wearing a hole in the floor pacing Ann’s room.

She didn’t return to the ward until 2.00pm – three hours and forty minutes after she had left.  She was grey, in unbearable pain and on oxygen.  She hadn’t needed oxygen the first time around.  It was obvious that things were not as they should be.

Ann in the hour or so after the procedure. She was on oxygen, unable to move and in unbearable pain. In the foreground, the pressure dressing which had been absent after the first procedure.

The recovery nurse didn’t look much better.  She too was pale, drawn and clearly distressed.  I asked why it had taken so long.  She said that Ann had been in recovery for a long time because they had experienced severe problems maintaining Ann’s blood pressure.

Ann’s recollection is that she was certain that her life was in danger because of the level of panic amongst the staff.  She told me later that she had heard the nurses in the Lab say that her systolic blood pressure had dropped to 69! The recovery nurse had been in a complete flap. Ann heard her say (of Dr B) “Where the f*ck is he?  I need him here now!”

Something must have gone terribly wrong but we were given no further information. Even the chaos in recovery didn’t explain why Ann was in the Lab for the thick end of four hours.

The recovery nurse told me that Ann had been given three doses of morphine when she came round – but she was still in utter agony.  She was also concerned that Ann was displaying a reaction to the morphine – an obvious rash had developed around her cannula.  She instructed the ward team to administer anti-histamines and to relocate the cannula. On the positive side, a pressure dressing had been used. Thank heaven for small mercies.

I asked to see Dr B to find out what had really happened in the Lab.  The recovery nurse promised to pass on the request.  If she did, it was ignored.

The instruction to administer anti-histamines was also ignored. The drugs were not written up.  Yet another example of the dreadful communication endemic in the department. As it happens, the rash disappeared anyway as soon as the cannula was moved so the error had no consequences.

Approximately 20 minutes after the recovery staff had left, an F1 came to relocate the cannula in Ann’s arm.  A blood pressure reading was taken at that time.  It was just 98/59. So, the BP was still very low but the resulting action from the doctor was…  nothing at all!  In fact, the F1 started to leave having moved the cannula and left the BP cuff on the bed. Obviously, disconnecting the blood pressure monitoring for a patient with very low blood pressure was not the smartest move. I pointed this out and he sheepishly reattached it.

Later that day (at 7.10pm) Nurse M came in to the room to check the blood pressure again.  She told Ann that she should be up and about and should be taking herself to the bathroom.  Ann could barely move a finger, never mind get out of bed. Nurse M clearly thought Ann was making it up. I said that given the dramas in recovery, Nurse M was being ridiculous.  She said she knew nothing of any drama in recovery and there was nothing in the notes about it.  Either it wasn’t written up, or she simply hadn’t bothered to read the notes. (To be fair to Nurse M, it became clear later that it wasn’t written up).

She took the BP again.  It was still just 98/53.  Nurse M simply recorded it and behaved as if 98/53 was perfectly normal and proceeded to tell us in great detail all about her bad back before heading off to completely ignore the needs of other patients.

Most of the nurses on cardiology are absolutely wonderful. Kind, professional and always demonstrating compassion. Nurse M isn’t one of them.

On Friday morning, Ann evidently wasn’t well enough to send me her regular text message. I was obviously worried because I hadn’t heard from her and so I telephoned the ward. I was unfortunate enough to be passed on to Nurse M again.  She said that my wife was “still refusing to get out of bed” but was otherwise “perfectly fine”.  Nurse M’s empathy bypass was evidently still in full working order. She took some trouble to imply that Ann was being something of a drama queen and interrupted every time I tried to say anything.  Deciding eventually that any conversation with Nurse M was profoundly pointless, I hung up.

That morning, under Nurse M’s care, Ann requested pain relief at 09.45.  She didn’t get it until 11.50. As a result, Ann suffered two hours of the most terrible post-operative pain. Nurse M really was the last person Ann needed looking after her that week.

That same morning, Ann saw Dr B, who had taken the trouble to come in to see her on his day off.  I wasn’t there, but our daughter was present throughout. Whether Dr B’s visit was a genuine kindness or because he knew what had gone wrong in theatre I will not speculate.

With reference to the drama in recovery, he said he didn’t know what all the fuss was about.  He said that Ann’s systolic pressure had never gone below 100.  He was obviously unaware that we already knew that it had been well below 100 in recovery, still below 100 half an hour after Ann’s return to the ward and furthermore, it was still below 100 five hours later.

He also explained that the ICD had “dropped” behind Ann’s pectoral muscles (no doubt due to pocket enlargement caused by the haematoma) and that he had struggled to find it – despite having anterior and lateral x-rays to tell him exactly where it was.  As a result, he had needed to undertake extensive dissection of the chest muscles and so Ann could expect to be “extremely sore” for some time.

That turned out to be the understatement of the century!

In fact, he explained that he had had to “dissect and dissect and dissect” to reveal the ICD generator and that he had come close to asking for assistance because the procedure was so much more complicated than anticipated.

This account would completely contradict what the Trust would later say about the procedure and so what was said that day became rather important. Because I wasn’t there to verify Ann’s account, I would later email my daughter to get her version of events. She used the same words as Ann when quoting Dr B. The extract below is from her reply:

“It was the one and only time I met Doctor [B]. [which, given that our daughter probably visited the department around 50 times, says something about how often he appeared on the ward]

He said sorry that she may be more sore than expected due to the procedure being more complex than he anticipated, he said “I had to dissect and dissect and dissect”, and that it took much longer than planned as he struggled to locate the ICD and that half way through he considered calling in help but managed to do it.

He also had a quick look at Mum’s operation site.

In my opinion, he seemed nervous and concerned at how she was and seemed agitated when explaining how he had struggled and said more than once that it was more complicated than he first thought.”

We will find out much more about the serious and permanent damage caused by that extensive dissection later. We will probably never find out exactly what made the procedure so complicated.

Dr B would subsequently assert that the procedure took less than an hour and was routine. Furthermore, his notes of his visit that day recorded that he had told the patient that the procedure had been routine. Clearly, he did nothing of the sort. Neither statement was true. Ann was in the Lab for three hours and forty minutes. Why the Trust would pretend that the procedure took less than an hour I do not know. The only reason I can find is that they wished to conceal what actually happened that day.

As it happens, it would eventually be proved beyond any doubt that the procedure did not take “less than an hour” but in fact took two hours and five minutes (and this will be explained in later chapters).

Dr B would also later re-state his assertion that the ICD generator had dropped, adding that he decided to leave it in the lower position – only to state during the subsequent complaints procedure that the ICD hadn’t dropped at all.

Consistency and honesty, I concluded, are not Dr B’s strong points.

Before this tale began, I was one of those who thought that consultant cardiologists had something approaching super-hero status. They were, I thought, the best of the elite of the medical profession and I had nothing but admiration for their knowledge and considerable skills. By now, that illusion was in tatters.

That same day, Ann was also introduced to Nurse N, the specialist ‘arrhythmia nurse’, and the two spent a considerable amount of time talking together as Ann lay immobile that day. Nurse N’s role, it seems, is that of a counsellor as well as a nurse and she demonstrated this by being a hugely supportive and patient listener when Ann most needed it. The contrast with Nurse M’s insensitivity could not have been greater.  Nurse N would continue to be very helpful for many months. Another outstanding member of the nursing team.

Saturday 26th September was yet another discharge day.

Obtaining drugs for discharge from the pharmacy is not a quick procedure.  At Castle Hill, it can take up to 12 hours.  With this in mind, the drugs card was sent to the Pharmacy early in the day.  So, when Ann asked for pain relief, she was told she couldn’t have any because her drug card was at the Pharmacy!  She spent her last day in hospital once more in unrelenting agony.  It didn’t occur to anyone to write up pain killers in advance for the 12 hour wait.

X-rays were taken to check that the ICD leads were all in place and, prior to discharge, Ann was visited by one of the few cardiology consultants she hadn’t already met.  Dr N was young for a consultant, rather public school and only slightly less patronising than some of his peers.

He explained that he had discussed the potassium tablets with Dr B and they had agreed to allow Ann to have supplements “for her peace of mind”.  At least he managed not to pat Ann on the head. He also talked, as Professor J had done earlier, about the ectopic beats being in the atria which was completely at odds with everything the electrophysiologists had told us and, we assume, was completely erroneous.

Ann was discharged at 6.40 that evening after the drugs finally turned up. They even managed to cock up the discharge letter. See below.

Above: Part of the discharge letter from Castle Hill. Note that the letter states that Ann had the ICD lead repositioned in her right atrium. She didn’t. The right ventricular lead was repositioned, not the atrial lead.

It was a huge relief to be away from the madhouse. However, nothing had been done to address the condition that had led Ann to be rushed to hospital in the first place – the severe arrhythmia.

At no time was it ever suggested that the loose wire was contributing to the arrhythmia so fixing it did nothing to reduce the danger that the arrhythmia presented to Ann. Her drug regime (i.e. the Sotalol that was now the only means of managing the arrhythmia) remained at the original, introductory dose and so far as we could tell, had not been reviewed. Our concerns about her consistently falling electrolyte issues were given only lip service.

All that had been done so far as we can tell was to fix something that had not been done properly in the first place.

So, after another week of extreme pain, unnecessary suffering and distress in the cardiac unit, Ann was no further forward.  On the contrary, she was in unrelenting agony from the brutal surgery, and just as before, was significantly less well at discharge than when she had been when admitted. It was now four months since Ann had first presented with arrhythmia. She had spent 46 nights in the cardiology unit. And yet she still had the arrhythmia

She was told she would receive a recall appointment to see Dr B in eight weeks.

8 WEEKS!

Until then, Ann was on her own.

Again.

Little did she know but the unbearable pain from the surgery was not temporary. It was going to continue not for days but for years.

In fact, probably for the rest of her life.

Go straight to Chapter Eight

Chapter Eight – Isolation

I find myself telling the story rather faster than I had expected. This is partly because these early chapters are substantially borrowed from the lengthy complaint we would eventually submit to the Trust. If I am honest however, I suspect that it is also because I want to get it over with.

I had hoped that the writing process would be cathartic and that I would feel better for unloading the burden. I don’t. Reliving these events only serves to remind me of the cause of Ann’s continued suffering and I am unable to shake off the anger that has been with me for the last two years. That corrosive anger is just one of the many unforeseen consequences that Ann and I have to live with which the Trust has chosen to ignore.

If only the doctors had the humility to admit that errors were made and had taken the trouble to explain when things just hadn’t gone as expected and then apologised, we wouldn’t be here. Unfortunately, as you will read in the coming chapters, far from apologising, they would simply wash their hands of Ann.

So we resume the story on Monday 28th September 2015, five and a half months after I first drove Ann to the ED, four days after the repeat surgery and less than 48 hours after Ann had been inappropriately discharged for the fifth time. That is to say, she had been discharged once again without her arrhythmia fully managed by her medication. And it could have been controlled because, as we will soon hear, they did get there in the end.

At 5.00pm on that Monday, Ann was resting in her usual spot on the sofa (where she spent much of that year) when she suddenly went extremely grey, became very dizzy and clammy and entered a prolonged episode of very severe arrhythmia.  Her pulse varied from completely undetectable to very erratic and strong. It seemed that she was experiencing a very high level of ectopic beats and was in danger of going into dangerous sustained VT and being shocked by the ICD.  The blood pressure cuff we use at these times to measure Ann’s heart rate was unable to get any reading at all because the pulse was too fast and chaotic.

At this point, we realised that Ann had forgotten to take her potassium on time so I immediately gave it to her.  The potassium was taken in the form of an effervescent tablet known as Sando K which is dissolved in a glass of water. Keen to avoid an unnecessary further ambulance trip to the hell that is the ED, I then called the emergency number on Ann’s ICD card (the CMU).  As ever, the phone was not answered and so after leaving it ringing for two or three minutes, I called Ward 28.  The call was answered quickly and I was passed to senior member of staff, Nurse P, who was her usual pleasant, calm and extremely helpful self.

I was connected to Nurse P for 13 minutes and by the end of the call, the arrhythmia had lasted for 20 minutes but had settled down and Ann had returned to what appeared to be a normal sinus rhythm at her standard, paced 60bpm.  It seemed to be an eloquent demonstration of the importance of the potassium levels. It was a good job that the consultants had acquiesced to Ann’s request for potassium supplements for her ‘peace of mind’.

Nurse P agreed completely about the likely relevance of the potassium and recommended that we present ourselves at the pacing clinic the following morning so the device could be interrogated to see what was going on. Given our experience at Hull Royal Infirmary Emergency Department, we also discussed the possibility of bringing Ann straight to Castle Hill next time there was an emergency and I pointed out that Dr D had said that she would arrange for Ann to be on a direct admissions list.  Nurse P explained that Ann’s name was not on the list and so we would have to take the ED route in an emergency.  So, either Dr D’s assurance had not been followed through after all or, given that Ann had already had one direct admission, it was perhaps more likely that her name had been removed from the list.

The following morning, Tuesday, we presented at the Pacing Clinic as Nurse P had suggested and we were seen by the pacing tech, Tech A.  He placed the telemetry wand over Ann’s chest and the live trace immediately showed a high number of ventricular ectopics.  The upper chambers were beating at a regular paced 60 beats per minute.  The ventricles had an additional ectopic beat roughly five out of every six atrial beats.  The bottom of the heart was doing its best to beat twice as fast as the top (and succeeding most of the time).  Little wonder then that Ann felt so dreadful. Her heart could not pump enough blood to the organs if the ventricles were beating at double speed and out of sync with the atria.

So, the assertions that Ann had been given by Dr N prior to discharge that the ectopic beats were coming from the atria were every bit as inaccurate as we thought. Why an experienced consultant would offer such an ill-informed opinion when a word with his colleagues or a ten second glance at Ann’s medical records would tell him otherwise is anyone’s guess.

Furthermore, Tech A was able to confirm categorically that the accelerometer in the ICD was switched on – and had been since the original implantation. So the atrial lead would pace upwards on activity – the exact opposite of what we had been told prior to implantation (that the atrial wire would only pace a minimum rate and the sinus node would be allowed to do any upwards pacing naturally).

Our patience simply ran out at this point. Enough was enough. We made it absolutely clear that we could no longer accept a constant stream of information that wasn’t just inaccurate but, more often than not, the exact opposite of reality.  We also expressed our extreme dissatisfaction at yet another discharge without the actual underlying problems being properly addressed and explained how utterly isolated and unsupported patients become after discharge with few means of making contact which, for the most part, aren’t even answered anyway. Suffice to say that a lot of frustration had built up over the last 5 months and it flowed freely.

Given that Tech A got something of an ear-bashing from both of us, he was both understanding and very helpful and arranged for us to see one of the EP registrars.  After we repeated our ear-bashing to him, he in turn tried to arrange for us to see Dr B.

Dr B was apparently in theatre so eventually, we were seen by Dr N, the same consultant who had seen Ann before her discharge the previous Saturday and told us of the non-existent atrial ectopics.

To be fair to him, he listened patiently to our account of the recent past and he apologised first for providing another erroneous diagnosis and then on behalf of the department for the dreadful experience Ann had suffered over the preceding 5 months.  He was with us for about 45 minutes and allowed us to vent at him without interruption.  Writing this account may not be very cathartic but venting at Dr N that day was cathartic as hell. I can’t tell you how much better I felt to have the opportunity to finally fire both barrels at the department. I don’t believe we had been given an apology by cardiology before or since and it was genuinely appreciated. In due course, he arranged for us to see Dr B at his clinic the following morning.

So, on Wednesday morning, we arrived early for Dr B’s clinic and were seen promptly.

Dr B suggested that Ann wear a Holter monitor for a period before her next appointment so there was a more detailed picture of what was happening.  Ann explained that she had worn one for 7 days last time and it had recorded nothing at all out of the ordinary, only for her to be rushed to hospital by ambulance the very next day suffering from dangerous arrhythmia.  It was therefore agreed that arrangements would be made for Ann to wear a monitor for 14 days. We were very satisfied with that. 14 days would mean that there was a very good chance that the monitor would capture whatever was going on.

As I recall, we did not spend much time talking about the terrible pain that Ann was suffering. At this time, it was only a few days since the surgery and the assumption was that it would subside in due course.  How wrong we were.

We did talk about the terrible sense of isolation following discharge however and the lack of any ready means of communication, including the unanswered emergency telephone.  Dr B pointed out that we could contact the cardiac secretaries at any time and ask to be added to his (or other consultants’) regular out-patient clinic list.

This was a complete revelation!

We had been in the system for a full 5 months and no-one had taken the trouble to impart this utterly priceless piece of information.  We could request a consultant appointment at any time but nobody had seen fit to tell us!

We were ‘gobsmacked’. It was simply beyond belief.

We were also delighted.

And the delight continued. The Sotalol was increased from 40mg b.d. to 80mg b.d. with immediate effect.

FINALLY!

At last, the arrhythmia might be controlled. This of course could, and should have happened before discharge (and indeed, probably before the one before that, and perhaps the one before that). Had we not thrown a tantrum and engineered this unscheduled appointment, Ann would have been left with the inadequate dose and risk of dangerous arrhythmia and possible electrical shock for another two months!

That seems to be the standard modus operandi of the department:  Get them out of the door as soon as possible.

“What are you worrying about? You have a defibrillator in your chest – it’s not as if you’re going to die after all!”

You would be amazed how many doctors actually said that! (Three pompous, tactless idiots, as I recall).

How wonderful it would be if all cardiologists had to endure a defibrillation before they are let loose on patients. I think that there would be a sea change in attitudes and outcomes.

Oh how I’d love to hold the paddles!

Enough!

Back to the tale.

I believe Sotalol takes a few days to ‘load’ (that is to say, the drug has to build up in your system over time) so the following day, Thursday, the increased dose had yet to take full effect.  Around 6.30pm, Ann went into severe arrhythmia once again.  As before, the blood pressure cuff could only take measurements every few attempts as her pulse was too fast and irregular.  At 6.40, she had her first burst of ATP (anti-tachy pacing) and her blood pressure reached 191/115 which is pretty dangerous.  She had a second burst of ATP at 6.50.

We tried the emergency number again but as usual, the staff chose to ignore the ringing phone.  In the end, we simply gave up and decided to risk getting through the episode on our own.  Only if we thought that Ann’s life was in immediate danger would we risk subjecting her to the deprivations of the ED. Better that we just stayed calm and rode the wave together with our fingers crossed.

As it happens, this episode lasted a full 35 minutes but Ann’s heart rhythm and BP returned to normal without anything beyond her evening Sotalol and potassium supplement.  In the end, we learned that if Ann took the evening Sotalol dose a little earlier, then these ‘breakthrough’ episodes were less likely to happen. We also needed to keep a very close eye on Ann’s potassium levels so she had weekly blood test at the GP surgery. If the levels were low, she took the supplements. If they were satisfactory, she didn’t.

It is worth mentioning that we were told that these ‘ectopy storms’ where large numbers of ectopic ventricular beats occur all together but the heart doesn’t go into full ventricular tachycardia is a rhythm that the ICD may not be able to reverse. There is therefore some risk of a fatal outcome. That would also perhaps explain why the ICD stayed dormant during the Wednesday episode. It didn’t recognise the ectopy storm as VT and so did not intervene.

Getting through these episodes without support is genuinely terrifying, even after you have been through it many times as we had. The fact that the Trust subjected (and no doubt continues to subject) its patients to these ordeals unsupported because they never answer the emergency number is nothing short of a disgrace. If this tale achieves nothing else, it must at least lead to a new emergency number for arrhythmia patients that is answered instantly, 24 hours a day, 365 days a year. Until it does, I will not stop sharing this story across the world.

These scary episodes became fewer and farther between over the following few days as the increased dose of Sotalol took effect (and the evening dose was taken earlier).  Ann still had regular ‘ectopy storms’ but they did not seem to develop to the point where Ann had any loss of consciousness, they didn’t last as long and the ICD stayed dormant for the most part.

The pain from the operation site however remained extreme.  Ann was taking paracetamol, codeine phosphate at maximum dose and was regularly topping up with morphine. She remained unable even to walk unaided from the living room to the kitchen.  Seriously, she couldn’t walk 7 or 8 yards without support. She could sit upright to eat for up to 30 minutes (in considerable pain) but the rest of the day, she had to be lying down for the pain to be at all bearable so that the weight of the ICD generator was supported on her ribs, not her mutilated muscles.

She would spend up to 18 hours in bed, and the rest of each day on the sofa. Because she couldn’t walk around without help, I had to be there 24 hours a day and my professional life continued to be all but non-existent. By now, Ann has spent tens of thousands of pounds paying other dentists to treat her patients so that she had a practice to return to one day. Our savings were disappearing. Our normal lives had effectively disappeared altogether by now.

On Monday 12th October, Ann received a recall appointment to attend the pacing clinic – on November 19th, another 5 weeks away!  This would be the 8 week recall promised at discharge. Given that she had been told by Dr B that she would wear a Holter monitor for 14 days before her next appointment, Ann called the pacing clinic to ask about arranging to pick one up.

Unusually, they answered straight away.  Ann explained the issue.

“There’s nothing here about a monitor.  Let me check…..  Oh here it is.  Can you pick one up tomorrow and drop it back on Wednesday?”

“It’s supposed to be for fourteen days not 24 hours!”

“Well I can’t change that.  You’ll have to speak to Dr B about that”.

The cardiology admin devil had been at it again. Incompetence at every single turn. Not to worry.  We now had the magic number for the cardiac secretaries so Ann dialled it.

It rang….  and rang…  and rang.

She tried again a little later.  Same story.

A little later.  No answer.

She tried the Castle Hill main switchboard so she could be put through from there.  No answer.

So, the emergency number for seriously ill cardiac patients was not answered. The cardiac consultant’s secretaries’ number was not answered and now, even the bloody hospital main switchboard was not answered.

Perhaps we were supposed to send a messenger pigeon!

Or maybe smoke signals.

She tried the direct line again.  No answer.

Her last attempt was at 2.50pm.  There was a recorded message saying that the office closes at 3.00pm (even though it was before 3.00pm obviously).

Tuesday 13th October. Several more attempts at calling the cardiac secretaries.  None were answered.  By way of experiment, Ann made the last attempt at 2.30pm.  You’ve guessed haven’t you?  There was a recorded message saying that the office closed at 3.00pm and suggesting that she try again tomorrow.

We eventually established that the answerphone is routinely switched on from 1.00pm each day.  Members of staff told us that not even cardiology personnel can speak to the secretaries after 1.00pm. Apparently, they need some peaceful typing time. Bless them! As they don’t usually answer the phone before 1.00pm anyway, it is all a little academic. After 1.00pm, they switch on the answerphone. Before 1.00pm, they just ignore it.

Wednesday 14th October brought exactly the same routine as Tuesday, with exactly the same result (including the 2.30 call and answerphone).

Thursday was exactly the same as Wednesday.

Friday: Ann had had enough by now.  She didn’t even bother trying.

Ann spent Saturday in her usual place on the sofa.  I could hear her moan with pain every so often.  Try as she might, she couldn’t stay silent during the worst spasms of pain. No matter where I was in the house, I could hear her cries and whimpers. After a while, it began to cause me extreme stress. The frustration of having to listen to her and not be able to do anything to help was sheer torture. Of course for her, it was infinitely worse. She had the stress I was feeling and the unbearable pain as well. She was a shadow of her former self. Every time she had been admitted to Castle Hill, she lost part of herself. Every time she was admitted, they increased her suffering.

She had another ectopy storm that day but her blood pressure didn’t go above 175/95 and there was no ATP from the ICD.

We didn’t try to call anybody.  What would be the point?

Ann felt completely abandoned yet again. No-one would see her for over a month. She needed a Holter monitor for a couple of weeks but the consultant hadn’t arranged it and the receptionists at the pacing clinic didn’t give a damn.  She couldn’t point this out to anyone because nobody could be bothered to pick up the phone. She just wanted to scream (and occasionally did).

She was in constant dreadful pain.  She was at constant threat of a defibrillator shock. She had no idea when or if the doctors would ever get the drugs correct or the ICD setup optimised so that she could be well again.

On Sunday Ann had episodes of worrying central chest pain through the night accompanied by regular ectopic heartbeats.  In addition, the post-operative wound pain continued to be extremely severe, causing Ann to take additional morphine on top of the paracetamol and codeine to try and control the pain.

At lunchtime, she began a major ectopy storm which followed her slowly and carefully climbing the stairs and which lasted much of the afternoon.  As ever, her BP was elevated.  At 1.45pm, when it began, her BP was 186/96 with a heart rate of 53bpm (below the minimum level at which she should have been paced which should have been impossible and was very worrying).  At 5.00pm, it was still at 154/98 at 62 beats and just 5 minutes later at 5.05pm, it was at 162/99 at a doubled heart rate of 122 beats per minute – despite the fact that Ann hadn’t moved an inch from her prone position on the sofa.

Clearly, the drugs were still not doing their job.

So, we presented once again at the Pacing Clinic without an appointment at midday the following day Monday 19th October.  We were about to call the arrhythmia Nurse N for some moral support when she happened to walk straight up to us.

We brought her up to date with the continued post-op agony and arrhythmia.  We also told her about the elevated BP levels and she said that the opposite ought to be the case as the drugs Ann was taking would normally supress the BP.

She kindly went off to find Dr B to see if he could see us.

In due course he did, along with one of the pacing technicians, and Nurse N.  Ann explained about the continued pain, the ectopy storms and her inability to do anything very much apart from lie on a sofa all day.

The device was read and the data clearly showed the storms that Ann had described.  Her impression of what was happening was always accurate. The ectopy storms tended to be at their worst early in the morning and early in the evening – so around the time when the beta blocker doses fell due.  Clearly, there was still some breakthrough arrhythmia as the drugs wore off.

The heart rate recorded the day before below the minimum pacing rate was explained by Dr B as a consequence of the ICD stopping pacing for an interval after a sustained series of ectopic beats – a reset after a period of ATP in effect.

We also discussed the Holter monitor fiasco.  We reminded Dr B of the earlier conversation about a 14 day monitoring period but he said that now that the ICD had been read and they had seen the ectopy, he was confident that 3 days would be sufficient. The appointment would be amended accordingly.

Needless to say, it wasn’t.

If Dr B tells you there is going to be a drought, be sure to take your umbrella.

As for the dreadful post-operative pain, Dr B asked whether Ann had a temperature to establish whether there was any infection (which she didn’t and there wasn’t) and he took a cursory look at the operation scar and commented that it “appeared to be healing nicely”.  He didn’t examine the area surrounding the wound, or the armpit, or the arm. He didn’t palpate the area or apparently make any attempt to identify the reason for Ann’s unbearable discomfort.

“Healing nicely”! Given that Ann was now – five weeks after Dr B’s aggressive dissection – effectively an invalid requiring 24 hour care as a result of the surgery, that comment seemed inappropriate at best and downright uncaring at worst.

Another patronising pat on the head to add to the collection.

Either Dr B didn’t care in the least about Ann’s pain, or he was in denial because he knew how it had been caused. Neither option was acceptable.

The overwhelming impression that we got (and this had been the case for months) was that all the medical staff thought that Ann was something of a ‘drama queen’.  Because the pain she was experiencing was so unusual, they just assumed that she was consistently exaggerating or even imagining it.

This could not have been further from the truth.

Ann’s pain threshold is way higher than most. She went through two very long and painful labours with each of our two children with NO pain relieving drugs.  She even went through a horrendous operation (which I witnessed) to remove an infected cyst from her armpit whilst she was pregnant with our son without any anaesthetic or pain relief whatsoever in order to protect her unborn child.  Take my word for it: Ann is as strong as an ox, as brave as a lion and just about as far away from ‘drama queen’ as it is possible to get.

As for the blood pressure, Dr B simply advised Ann “not to obsess on the numbers”.  Pat on the head number two of the day.

Be that as it may, Dr B prescribed a low dose of the original beta blocker (Bisoprolol) to be taken at lunchtime (between the Sotalol doses) to reduce the breakthrough arrhythmia and the ICD was reprogrammed to increase the minimum pacing level from 60 beats per minute to 70 to reduce the likelihood of ectopic beats. If there was a smaller gap between heartbeats, then it would be harder to squeeze in an extra one apparently. It made sense.

The increased pacing rate didn’t seem to work initially. Ann continued to experience ectopic beats throughout the rest of that day.

Back at home later that afternoon, as the sun was shining, we decided to try to take a short stroll down the street to allow Ann to feel fresh air on her skin.  She had been confined indoors for too long. We managed to go about 50 yards before she was in a state of near-collapse.  Her heart was “going crazy” (and the last time she had said that she had arrested) so we had to return very slowly to the house, and back to the sofa, where she would spend the rest of the day (and most of every day for the following 6 months).

From Tuesday 20th October to Saturday 24th October, Ann continued to experience regular ectopics and the post-operative pain became steadily more severe.

Gradually, the groans and whimpers became cries and screams.

She still needed regular morphine on top of the paracetamol and codeine to manage the pain.  She continued to sleep a regular 10 to 12 hours a night, crying out every so often in her sleep as the occasional powerful ectopic beat or spasms of pain disturbed her briefly. For the most part though, she was ‘knocked out cold’ each night by the growing cocktail of drugs.

The addition of the Bisoprolol into the drug cocktail had also made the side effects more severe. Ann’s cognitive ability and short term memory were further degraded and she felt even more “woozy” and generally unwell.

Friends and family remarked that she was certainly looking more ill.  It was obvious to us that far from recovering from the surgery, Ann was still getting worse.

On Sunday, in an attempt to introduce some variety into Ann’s routine, I drove her to Waitrose and pushed her round the store in a wheelchair as I did the weekly shopping.  It was another serious mistake.  Before we had been there for even ten minutes, she was crippled with pain.  Now, she couldn’t even manage 30 minutes sitting up. When we returned home, she needed to take additional morphine and, unusually, she went straight to bed where she slept for 5 hours straight through, on top of the 12 hours she had already had overnight.

On Monday, once she had had enough rest, Ann rang Nurse N and brought her up to date with the continued pain, ectopy and increased side effects.  N suggested that it might be worth seeing the cardiac physiotherapists about the post-op pain and she undertook to discuss Ann’s case with them.

Reliable and helpful as ever (she is a star) Nurse N called back later in the day to inform Ann that all the senior cardiac physiotherapists were on holiday at the same time because it was half term.  No cardiac physiotherapy provision at all. One wonders if the Trust ever takes its patients into account at all.  In my workplace, we try to stagger holidays so our clients are never left completely without cover.  It isn’t rocket science.

Meanwhile, back on the sofa, the pain was still excruciating.  During the evening, Ann had another unpleasant episode of ectopy with a blood pressure at 170/94.

Ann telephoned the pacing clinic again on Tuesday to see if the 3-day Holter monitor had been arranged.  Of course it hadn’t.  Ann was told that she had to call the cardiac secretaries again – yes, the ones that never answer the phone.

After 14 days of unsuccessful attempts, Ann finally manged to get through to the cardiac secretaries the following day and actually spoke to Dr B’s secretary.  Once Ann had recovered from the shock of the answered call, she explained about the originally-14-day-but-now-3-day Holter monitor and the fact that the pacing clinic still incorrectly had it down as 24 hours despite the conversations with both Nurse N and Dr B himself.  Ann also requested an urgent appointment with Dr B in the light of the still-escalating pain 5 weeks post-op along with the fact that she was, by now, completely unable to sit up or stand for more than a few minutes each day (this when she had originally been told she would be up and about just 24 to 48 hours after the original operation – TWO MONTHS EARLIER!)

Dr B’s secretary was pleasant but not very helpful.  She said that the computer would not allow her to alter the Holter monitor request and so she would have to speak to or email Dr B.  She explained that Dr B would be on holiday from 11th December so Ann would need to see him before then.  When asked whether she would call Ann back to let her know what Dr B had said, the secretary said no, Ann would only hear from out-patients. So, Ann would not know if the Holter monitor request had been corrected unless she chased it up herself and she would only learn about an appointment with Dr B if the clinic actually managed to send a correct appointment letter (which we knew from experience was fairly unlikely).

So, Ann was left to wait to find out whether the hospital administration would make the same unholy mess of this as they had of everything else.

They did.  Obviously.

The appointment with Dr B never arrived.

In fact Ann didn’t receive any more appointments at all.

This time, it wasn’t accidental. We’ll find out why in the next chapter.

Go straight to Chapter Nine

Chapter Nine – Abandoned

In our tale, we are approaching the end of October of 2015. Autumn was well underway and the summer was already a distant memory. Except for Ann, she had barely stepped out of doors since May so she had no summer memories to fade. All she had to remember was pain and suffering.

She had been out of hospital for a month. Had things been done properly, she would by now have returned to work and should have resumed a more or less normal life. Had things been done properly, she would soon be back doing classes at the gym and walking in the hills at weekends.

But she wasn’t. She was still on the sofa.

In agony.

At 8.30am on Thursday 29th October, I took Ann to our local GP surgery for her weekly blood test (to monitor the serum potassium levels).

We have already talked about potassium levels quite a bit, but it is probably worth looking at this more closely to understand why we believed the hospital’s ‘pat on the head’ attitude was so inappropriate – especially now that Ann was taking Sotolol to manage her arrhythmia.

In case you think I’m making this up or exaggerating the significance of potassium, let’s take a look at an article that I consulted back then entitled Hypokalemia and the Heart’ from Vol.7, N°9 (12 Nov 2008) of the online journal of the European Society of Cardiologists Council for Cardiology Practice (these guys really ought to know what they’re talking about):

Hypokalemia is a frequent disorder, especially important in cardiac patients. While in patients without heart disease hypokalemia rarely leads to death, among cardiac patients unrecognized hypokalemia may be one of the leading causes of iatrogenic mortality. As far as also hyperkalemia carries substantial risk, it is of utmost importance for a practicing cardiologist to keep the potassium levels within normal limits in all cardiac patients”

Let’s look at what that bold sentence means. Here it is again:

Among cardiac patients unrecognized hypokalemia may be one of the leading causes of iatrogenic mortality.

Hypokalemia is low serum potassium. Unrecognised hypokalemia means not taking enough notice of low potassium levels. Iatrogenic means caused by medical treatment. Mortality means death. So, we are talking about death caused by doctors who don’t keep an eye on potassium levels. In fact, what may be one of the leading causes among cardiac patients of death caused by doctors’.

So, it’s important.

For Ann, even more so because she was talking Sotolol. Allow me to explain (and please excuse the use of quite a few new medical terms which I had to learn to get my head around this):

Low potassium levels tend to make arrhythmia worse generally – causing an increased incidence of ventricular ectopic beats, ventricular tachycardia, and ventricular fibrillation.

A known side effect of Sotolol is that in certain patients, it can cause a form of arrhythmia known as ‘Torsade des Pointes’ or TdP. Torsades de Pointes is caused by a prolongation of the QT interval (which in simplest terms is the last two-thirds of a single heartbeat). Sotolol is known to extend the QT interval and so as a result, increases the risk of TdP. Low potassium also increases the QT interval (significantly according to the same article quoted above).

So together, Sotolol and low potassium are really bad news.

Ann knew this, which is why she was banging on about it and putting pressure on the doctors to prescribe potassium supplements. Her ‘peace of mind’ had nothing to do with it. It was a question of her safety.

Which is why she had blood tests every week.

The young phlebotomist who took the blood that morning easily obtained the sample and we were in and out in just a few minutes.  When we got home, Ann removed her coat to discover that the left sleeve of her previously cream coloured fleece was now bright red!  Ann was bleeding profusely from the puncture in her vein.

At this point, a friend arrived as part of a rota we had established to allow me to return to work at least part of the week.  I had managed less than 10 full days at the office since August due to the ongoing fiasco of Ann’s medical care and her resulting need for constant round-the-clock support.  I had important meetings arranged so, thinking that the bleed was no big deal and would be resolved in a matter of minutes, I went off to work and the friend kindly drove Ann back to the GP surgery – and, of course, became an independent witness for the disturbing events that unfolded through the day.

At the surgery, Ann was taken straight through to see the phlebotomist and a nurse.  The poor phlebotomist was horrified, but he hadn’t done anything wrong. This time, it was a case of plain bad luck and a risk associated with the blood thinning drugs that Ann still had to take to protect her stented artery.

They quickly dressed the bleed with bandages and wadding but the bleeding came through it in a couple of minutes.  This was quickly replaced by a Kaltostat dressing (a special dressing that promotes haemostasis) and pressure bandage as one of the GPs joined the group trying to stop the bleeding.  Ann was returned to the waiting area for a few minutes with the expectation that she would soon be able to return home.

Blood was coming through the bandages again within minutes.  Ann was taken back through and another of the GPs, Dr P, was called to help.  He re-dressed the wound yet again and Ann was sent home to rest with the arm elevated (but not above shoulder level – that was not allowed for 6 to 8 weeks after the implant surgery) and told to call in with any further problems.

In less than an hour, the blood had gone through the dressing, through another fleece and through the towel in which all were wrapped and was seeping into the pillow on which Ann’s arm was resting. She was losing a lot of blood.

Ann called the surgery to discover that Dr P was already on his way to our home.  He arrived a few minutes later.  Not wanting to disturb any clotting that may have started, he cut up some surgical gloves and wrapped the bandage in the plastic then added further layers to increase the pressure on the bleed and told Ann that she had to go to hospital.

As the ED at Hull Royal Infirmary was still the place of nightmares for Ann, she remained very reluctant to return there.  Because the bleed was caused by medications prescribed by the cardiologists and any solution could increase coagulation and so potentially have an effect on the coronary stent, Dr P agreed that it would be sensible for Ann to return to Castle Hill to seek treatment.  He therefore immediately wrote a referral letter addressed to the cardiac team explaining that the bleed followed a routine blood test and handed it to Ann.

So, our friend drove Ann to Castle Hill where they presented at the cardiac clinic reception and handed over the referral letter.  After one and a half hours of waiting (and bleeding) our friend enquired at the desk about when Ann might be seen.  They explained that they had tried to get hold of Dr B but he was busy in the lab but that Dr K was available to see Ann between patients.

Shortly after, Ann was taken through to see Dr K.  The senior pacing tech that had been present at the recent visit with Dr B and the arrhythmia nurse , Nurse N, were also present, as was our friend.

I have previously talked of Dr K’s ‘call a spade a spade’ attitude and how we had found it refreshing at the time to encounter a bit of plain-speaking. Her bluntness was less welcome this time around. In fact this time, Dr K didn’t just indulge in plain-speaking, she indulged in shouting at a very ill patient in terrible pain and with an uncontrolled bleed.

Dr K, dressed in her scrubs, greeted Ann pleasantly enough but when Ann removed her fleece to reveal the blood-soaked bandages on her arm, Dr K lost her temper.  Apparently, somebody had mis-informed Dr K that the bleed was at the ICD implant surgery site and so she had left a patient on the operating table in the lab to come and see her. Cardiology communication failure had struck again.

Dr K immediately said that they couldn’t and wouldn’t deal with the bleed at Castle Hill and that Ann would have to go to the ED where she should have gone in the first place.  She was unpleasant, rude and loud.

She also said that Ann shouldn’t return unless she had made an appointment.

It is probably no coincidence that no further appointments were ever issued by the Castle Hill Cardiology Department. We had already received a few further appointments – one for the Holter monitor to be fitted, another regular pacing clinic appointment to check on the ICD and one appointment with the cardiac physiologist- but no more were forthcoming after this date.

She didn’t know it at the time, but it seems that Ann had been evicted. Cast aside.

Unaware of this and conscious that Dr K had a patient waiting for her in the Lab, Ann took the opportunity to explain briefly to Dr K that the post-operative pain, far from improving, was actually getting more severe over time.  Dr K (very roughly, causing a lot of additional pain afterwards) examined the implant site and announced that Ann’s extreme pain was in fact nothing to do with the ICD implant surgery!!

Ann was speechless.

How could extreme pain at and surrounding the implant site, which had begun the very second that Ann came round from the anaesthetic and had continued around the clock ever since possibly be the result of anything other than the surgery?!

If I was to punch you in the face and then claim that the swelling and black eye which followed was in fact a complete coincidence and nothing to do with the punch – you wouldn’t believe me.

And Ann didn’t believe Dr K.

Either she was lying, or she is profoundly stupid.

Clearly, she isn’t stupid.

It was this transparently false statement that first made me consider making a formal complaint against the Trust, and the electrophysiology medical staff specifically. Their failure to use a pressure dressing after the original surgery and the fact that the operation was ultimately unsuccessful and had to be repeated and then the mutilating second operation were the causes of most of the unnecessary suffering that Ann has had to endure.

All the other many episodes of ineptitude, appalling communication, isolation and lack of compassion had made matters much worse but it was the inadequacy of the electrophysiologists’ work that had caused the most suffering.

For Dr K to lie in an attempt to wash her hands of those consequences was simply not acceptable.

Meanwhile, Ann was still bleeding from her arm.  Dr K didn’t even look at it (or arrange for anyone else to look at it for that matter).  The increasingly blood-soaked bandages – she had been bleeding now for more than 7 hours – remained where they were.

No, Dr K simply sent Ann away to find her own way to the Hull Royal ED.

And so Ann’s friend had no choice but to drive her there.

At Hull Royal, she was immediately taken more seriously and treated with compassion (I guess the good staff are great and the bad staff are just plain appalling. This time, Ann was lucky and was treated by the good staff).  The bandage was changed yet again.

Ann explained what had happened that day at Castle Hill.  The assessment staff said that they thought Dr K’s behaviour in sending Ann away without treatment to make her own way to Hull was “unforgivable”. They said that there is no way that Dr K should have afforded Ann any opportunity simply to go home. Castle Hill, they said, was under a duty of care to make absolutely certain that she received urgent medical care. Ann was told that although she wasn’t losing blood very rapidly, a couple of days without treatment would have been enough to put her life in danger.

Ann was moved straight through to Majors and placed on a heart monitor and oximeter.

There, she very quickly bled through the new bandage and it was replaced yet again.  The extremely pleasant and helpful A&E registrar told us that unlike Warfarin, Clopidogrel does not have an ‘antidote’. They couldn’t give medication to stop the bleed, it would have to be done mechanically. In other words, they would have to mend the leak.

So, eventually, a surgeon was bleeped to come and put a stitch straight into the leaking vein – without anaesthetic, because they didn’t want to make any more holes in Ann which might themselves cause more bleeding.

By this time, I had escaped from my meetings, has driven the 60 miles from Leeds and had arrived at the hospital.

Before the stitching could happen, there was one further hole they did have to make. They needed to take the risk of setting up a cannula in the other arm to take more blood for testing.  We subsequently got the results from both the day’s blood tests.  Interestingly, the early test which caused the bleed gave a serum potassium level of 4.4.  By the time the later sample was taken in the ED, it had fallen to 3.9 (just below the minimum recommended level for taking Sotalol).  We assumed it had fallen because Ann had not taken her Sando-K.  Once again, it appeared that the supplements were actually rather important.

As luck would have it, 11½ hours after it had started and just as the surgeon had opened his pack of instruments to do some sewing, the bleeding stopped spontaneously.

So, I took the opportunity to ask the surgeon about the ICD pain.  Given that Ann had bled for 11½ hours from a tiny needle puncture, could some internal bleeding or oozing be the cause of the pain around the implant site, I asked.  No, he said.  There would be obvious external signs if there was anything like that still going on.  It was, he said, much more likely that the device was pressing against a nerve.  There was no question, he argued, of the pain being caused by anything other than the implant.

Pressure on a nerve explained why Ann was not able to spend any length of time in an upright position.  Every time she stood or sat up for more than around 20 or 30 minutes, her pain escalated to the point of unbearable.  If the ICD was indeed pressing on a nerve, then it would potentially press even more when gravity added to the pressure.  It made so much sense.

It was the first plausible explanation that we had received.

And the exact opposite of what Dr K had said a couple of hours before.

Over the following days, Ann’s pain continued to worsen – quite possibly as a direct result of the ‘rough’ examination of the surgery site by Dr K. By the evening of Monday 2nd November, it was becoming intolerable once again.

I could not begin to explain just how serious the pain had become.  Nor could I explain just how distressing it was for me to see the person I love the most suffering so very badly.  Wherever we went or whoever we spoke to, it seemed to us that no-one really understood how serious it was.  In reality, it seemed that everyone thought Ann was at best exaggerating her symptoms and at worst, imagining them.

So, in desperation, I resorted to taking a couple of short videos on my mobile phone to capture Ann’s suffering.  It felt like I was guilty of a terrible invasion of Ann’s privacy at the time but it turned out to be very important  that we had a record of the reality of the situation. Ann wasn’t aware I was doing it so there is no ‘playing up to the camera’ going on here.  It is worth noting that when these short videos were recorded, Ann had already taken her full permissible dose of paracetamol and codeine… and morphine. She had enough painkillers in her system to mask the most serious pain. But it wasn’t nearly enough.

Below is part of one of the sequences I recorded that day. It is only a short clip. Frankly it was just too distressing to have to watch a longer section repeatedly whilst editing this to conceal her identity. Make sure your sound is on.

Difficult to watch isn’t it? Even worse to listen to.

Remember, this is 6 weeks after the second implant. Ann was assured that she would be back at work by now. In fact, she should probably have been back in the gym. Instead, she was reduced to this. The episode in the video isn’t an isolated incident. Ann was like this every single day. I watched that video in real life every day for months on end. Ann had to actually experience that pain – day after day, week after week, month after month.

More than once, Ann said to me that she wished I had left her to die on the bathroom floor that day – or that I had failed in the attempt to revive her. Can you imagine how hard it is to hear your soulmate say that to you? Heart-breaking doesn’t come close.

This is what the cardiology team at Castle Hill had done to my wife. This isn’t arrhythmia we are looking at. This is bad treatment. They should have been bending over backwards to put this right. No effort should have been spared to lessen Ann’s suffering.

Instead, they pretended it was unconnected to Ann’s treatment and washed their hands of her.

And that is why you are reading this story.

And so, we have reached the half way point. Not in terms of time because our tale lasts more than two years and we are barely six months into it. We are half way in terms of narrative because the story so far has been focused on the damage done to Ann by her treatment. The second half of our tale will deal with the largely unsuccessful attempts to correct or mitigate that damage and the equally unsuccessful fight to get the Hull and East Yorkshire Hospitals NHS Trust to acknowledge their failings and take steps to prevent others from suffering the same fate.

There is still a lot of story to tell, and the second half is every bit as disturbing as the first.

Go straight to Chapter Ten

Chapter Ten – Complaint

The previous week’s events, and in particular Dr K’s denial of any connection between the pain and the surgery meant that Ann had now completely lost what remaining trust she had in the Castle Hill electrophysiologists.  It was becoming ever clearer that they weren’t going to do anything to help.

We decided somewhat belatedly that the time had come to seek a second opinion.

By now I was at my wit’s end.  My stress levels were off the scale. I couldn’t bear to see Ann suffering so dreadfully and I was beyond angry at this latest turn of events. How could they ruin her life like this and then just wash their hands of it?

I thought it might be wise first to seek advice from PALS (the Patient Advice and Liaison Service at the Trust).  These guys were supposed to provide an independent listening ear for patients’ concerns so it seemed a reasonable starting point. I had in fact already spoken to them before – when Ann’s original implant surgery had been cancelled. Indeed, that conversation may have led to the reversal of the cancellation. As a result of this previous contact, I already had the email address of one of the PALS team.

I sent a very emotional email to my PALS contact seeking advice about obtaining a copy of Ann’s hospital records and I attached the videos so that, at last, someone might understand that the pain was real and not imagined and get some insight into the level of our distress.  The email asked PALS to call me to discuss the medical records issue.

I suppose that the videos were just too distressing or perhaps my PALS contact considered the issues raised in my email so serious that she needed more senior people involved. Instead of calling me as requested, she immediately forwarded my email to the Assistant Chief Nurse at the HEY NHS Trust (now Nurse Director at the Trust) who was responsible for “patient engagement, experience and learning” (whatever that means) who for now we shall call Nurse Q.

Nurse Q is obviously a very experienced and skilled nurse to have reached such a position of seniority. It would emerge that she was something of a trouble-shooter for the Trust, tasked with pouring oil on troubled patient waters. According to the Care Quality Commission’s registration details for the Trust, Nurse Q is now responsible for all ‘regulated activities’ at both Hull Royal Infirmary and Caste Hill Hospital, so it would appear that she has since been promoted away from this role.

Having been passed the baton, Nurse Q should have called me as my email requested. Instead, she decided that she would instead take it upon herself to send my email direct to Dr K.

Dr K would not have enjoyed what I had said in my email:

“…Whilst at Castle Hill, [Ann] explained to [Dr K] that her post-operative pain is still getting much worse, some six weeks after the original failed operation was repeated! [Dr K] must think we are profoundly stupid.  Unbelievably, she stated that the pain (which started as [Ann] came round from the anaesthetic and has been continuous ever since) was “nothing to do with the ICD implant”.  What you saw in the video, [Dr K] claims, is a complete coincidence. That is self-evidently an unambiguous, bare-faced lie with a view to abdicating responsibility for what has happened to [Ann]…”

“[Dr K] also told [Ann] not to return to the department unless she had an appointment (contrary to what we had been told previously).  Given that it can take over 100 calls to the cardiac secretaries to have just one answered…  it would effectively mean that access for [Ann] to cardiac medical care is as good as ended.”

“So, it seems we have reached a stage where the Cardiology Department is trying to wash its hands of a very inconvenient patient.”

It is important to point out that PALS (and Nurse Q) required Ann’s explicit consent to do anything beyond making the requested phone call. They didn’t have that consent. They hadn’t even tried to obtain it. Nurse Q therefore had no right whatsoever to take this course of action and what she did was a gross breach of trust and confidentiality.

When I called to enquire about why no-one had contacted me and discovered that this had happened, I was absolutely horrified.  The email was sent to my PALS contact’s personal work email address and not the general PALS address and the last thing in the world I expected was for it to be broadcast around the Trust.

I subsequently spoke to Nurse Q at length and somewhere amid her vigorous defence of her thoughtless, unilateral (and possibly illegal) action, there was a grudging apology.  A written apology to Ann was requested at the time, and again in the formal complaint that followed.

No apology was received.

Nurse Q urged us to have a face-to-face meeting with Dr K.  Given the manner in which Dr K had behaved at their last meeting, Ann had no desire to repeat the experience but said that she would consider a request for a meeting if that request came from Dr K herself.  Needless to say, no such request was forthcoming.

PALS did eventually supply the form I needed to apply for a copy of Ann’s medical records under the Freedom of Information Act so we could seek a second opinion but the whole experience left a very bad taste in the mouth.

Clearly, PALS was not going to be the route to a solution.

So I began the task of writing the formal complaint. If you have read this far, you know that there was a lot to include. It would take hundreds of hours to go back through the diaries, emails, text messages and other documents to reconstruct the timeline so that the story could be told with absolute accuracy.

I had by now been forced to return to work almost full time – enough damage to my business had been done already. Looking back at the diary for this week (week commencing 2nd November 2015) I can see that Ann had a different ‘babysitter’ (that was the expression we used) every day except Monday.  Monday I worked from home. On Tuesday, Nikki came from Northallerton; on Wednesday, Stephen came from Wetherby, Heather came from Newbald on Thursday and on Friday, Suzanne came from Beverley. Our friends and family were fantastic.

Suzanne also took Ann to be fitted with the Holter monitor for three days that Friday.  Ann had very few arrhythmia episodes over the weekend and so we expected the results to be unremarkable.

On November 10th, Ann went to see our GP to ask her to make a referral for a second electrophysiology opinion. It would have been easiest to go to Leeds (the nearest major cardiology department after Hull) but Ann still had family up in Newcastle who could provide support and the Freemen Hospital there is a genuine centre of cardiology excellence so she asked to be referred there.

The following week, Ann had three appointments.

On the Wednesday, we attended an endocrinology appointment at Hull Royal arranged by our GP.  This ruled out any endocrine cause for the regular low serum potassium and magnesium levels which led to the many IV electrolyte infusions (curiously, none of those low electrolyte readings were in Ann’s records which the consultant accessed in our presence) but instead pointed the finger at the medications for the electrolyte loss – principally the Lansoprazole which, apparently, is known to deplete potassium.  So, it was one of the drugs prescribed by the cardiologists that was causing the potassium depletion.

As the Lansoprazole was taken to reduce the acid reflux caused by the blood thinning medication, it was easily swapped out and replaced for the most part by Gaviscon. One small step in the right direction.

In due course, the weekly blood tests would become monthly (Ann still has them) and for the most part, potassium levels were maintained with lots of bananas – which are potassium rich and somewhat more enjoyable that a glass of potassium chloride.  The supplements were rarely necessary but still used occasionally when Ann experienced ectopics. The ectopics always seemed to stop after taking the Sando-K.

On Thursday, we attended the pacing clinic for the appointment scheduled before Ann’s encounter with Dr K. There, we saw two pacing technicians and we were joined again by Nurse N. Surprisingly, not only had the Holter monitor data been analysed in a matter of days (it usually took 6 to 8 weeks) but it had been analysed by no less than 6 different people.

Perhaps my email to PALS had had some effect after all.

The information it had provided had apparently been very useful. It had been deduced that many of the ectopy symptoms Ann was experiencing were as a result of some internal power-saving diagnostics by the implant itself.  These diagnostic routines were therefore switched off with the expectation that Ann may experience no further ectopic beats at all!

So, it turned out that it was the way that the Cardiology Department had set up the ICD that was causing the problems. No surprise there then but at least Ann had brought about another small step in the right direction.

Perhaps enough mistakes had now been undone for the arrhythmia to stop.

The same wasn’t true of the pain. On Friday, despite being unwell, Ann was able to attend a physiotherapy appointment at Castle Hill (her last appointment at the Cardiology Department there) where she was given some gentle exercises to try and restore her normal range of movement lost since the implant surgery.  That evening, having done just a few minutes of these exercises, Ann was once again crying in agony and had to retire to bed. It was much too painful to be upright.

That week, we also finally received the ICD transmitter unit for home (which we should have received back in August). It is worth explaining a little more about this rather clever box of tricks.

The transmitter is a little box that lives on Ann’s bedside table. It is able to connect wirelessly to the ICD and read its memory (the fact that I was now married to a Bluetooth device has been the subject of regular jokes ever since). Each night, as Ann sleeps, it silently reads the ICD and sends a tiny ‘data squirt’ to Chicago (where the ICD was manufactured). If all is well, that’s all the data squirt says. If there is an issue, either with the ICD itself (e.g. low battery warning) or with Ann’s telemetry, it sends an alert. In turn, that alert triggers automatic urgent emails to the doctors back here in the UK so they can intervene. It is extraordinarily clever.

In addition, the transmitter can be used by the hospital pacing clinic to do a remote detailed reading of the device. Ann just has to initiate the procedure with a few button presses then she just lies on the bed for half an hour whilst the examination takes place.  This would prove very useful when she transferred to the Freeman in Newcastle as it allowed us to avoid a number of long journeys to the North-East.

Suddenly, there were no more medical appointments.

For six months, Ann had either been in hospital or was shuttling back and forth to one medical appointment or another. Now there was nothing.

I was spending every free moment shut in the study upstairs, sometimes late into the night, rolling back through hundreds of text messages and the growing pile of medical paperwork to put together a comprehensive complaint to the Trust. I would often hear Ann crying quietly (and occasionally not so quietly) downstairs.

She was still marooned on the sofa. She still couldn’t put on a t-shirt; she couldn’t lift a full kettle; she couldn’t sit upright for much more than 30 minutes; she couldn’t walk more than a couple of hundred yards; she still had paraesthesia in her right forearm.  Most of all, she was still in constant pain which varied between uncomfortable and simply unbearable – even after taking the maximum dose of three different pain killers including morphine.

It was a truly awful period of our lives.

I finally finished the 50-page complaint on 29th November 2015 and sent it by email and post along with a letter from Ann giving her consent for me to act as her proxy in the matter. The letter was copied to the Head of Hospital Inspections at the Care Quality Commission (the CQC) and to our GP. At the same time, I submitted an application under the Data Protection Act for a full copy of Ann’s medical records for the period from May 2015.

Surprisingly, I heard from the CQC first.

Their Inspection Manager telephoned me out of the blue on Wednesday 16th December. She explained that their Head of Hospital Inspections had read my complaint from end to end and had found the contents “horrific”. She asked me to send her an email confirming my consent (as the author of the complaint) for the Care Quality Commission to instruct the Hull and East Yorkshire Hospitals NHS Trust to copy the CQC on any and all correspondence relating to the complaint. Needless to say, the CQC had my consent by the end of the day. Their involvement should ensure that the complaint was taken seriously.

Earlier in December, a ‘friend of a friend’ (who shall remain nameless) had made contact with the Trust’s Chief Medical Officer and made him aware of Ann’s plight. He recommended that Ann see a specialist pain consultant who worked within the Trust. Dr Q (we’re soon going to run out of letters!) was a pain relief and anaesthetics consultant and he had particular experience in the management of long term chronic pain. I immediately asked our GP to make a referral, which of course, she did.

The day after the call from the CQC, I received a call from the Beverley Community Hospital offering an appointment with Dr Q for the very next day! I accepted it on Ann’s behalf without a second thought.

I cancelled all my work commitments and went with Ann to the appointment on Friday.

Dr Q was extremely pleasant and very generous with his time – but he wasn’t very encouraging.  He confirmed that the pain was clearly neuropathic and it was “almost certainly” a direct result of the implant surgery.  He was unable to speculate however about the exact mechanism at play – for instance whether the implant might be causing pressure on the brachial nerve plexus or whether the device was causing tissue to move when Ann was upright which in turn affected the nerves in the area or whether the nerves themselves had been damaged during surgery.

Dr Q’s letter to our GP following the consultation. Diagnosis: Chronic post-surgical neuropathic pain

He explained to us that 2% of people ended up with chronic pain after ‘surface surgery’. He seemed to be suggesting that this had nothing to do with the surgeon (not that electrophysiologists have any surgical qualifications, they don’t). I didn’t buy that.  I’m an architect and 2% of buildings are horrible. That isn’t an accident. It’s usually because the architect has little ability or his client asked for too much building for too little money. People cause the failures, not bad luck. It was far more likely it seemed to me that 2% of doctors doing the procedures make a mess of it. In fact, 2% seemed a very low figure given what we had seen over the previous six months.

Dr Q did not examine Ann and was unable to offer any solution other than ongoing pain management.  He recommended that Ann started to take a drug called Gabapentin, starting with a low dose and quickly titrating up to a higher one.  He warned however that the side effects would make Ann feel “dizzy, dopey and daft”, so they would potentially amplify the cognitive side effects of the arrhythmia drugs which Ann was already experiencing making it much less likely that she could return to work any time soon – even if the debilitating pain was reduced.

Ann could not drive in any event (even if she had been capable). I neglected to say that all ICD implant patients have an automatic six month driving ban and, as I recall, a three months ban after every appropriate ICD shock. Ann would not be able to drive before February at the earliest (six months after the original implant procedure) and only then if the doctors confirmed her fitness to drive.

Dr Q said that in due course, the pain might resolve itself and the drugs might gradually be withdrawn.  Equally, it may be permanent and so Ann faced the possibility of having to manage it for the rest of her life.  That was the very last thing that Ann wanted to hear.

If the Gabapentin didn’t work, Dr Q explained, there was a list of alternatives that could be tried.  However, it was not an encouraging visit.  Dr Q gave Ann the URLs of various websites to help people cope with ongoing chronic pain.  It was plain that he thought Ann was going to have to get used to being in pain for the long term.

In the meantime, Dr Q also recommended trying a course of acupuncture. As the doctors weren’t having any success, it had to be worth a try.

Ann was hoping for an explanation but Dr Q was unable to suggest any investigations that might establish the precise cause. He said that was really a matter for the cardiologists. But they were telling her that the pain was unconnected to the surgery, and they had also told her not to return without an appointment.

We were getting nowhere fast. Ann’s agony continued.

Go straight to Chapter Eleven