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 Eleven – Meeting One

From this point in the story, I need to change the way in which it is told.

The second half of the tale will reveal that the Trust did as little as possible to address our complaints and gave contradictory and completely inaccurate accounts of events – probably through sheer carelessness and ineptitude most of the time. More importantly, the Trust very probably withheld vital information from us and most importantly of all, they lied. The lies weren’t careless or inept, they can only have been deliberate.

That is obviously a very serious allegation. All the events I have so far described are supported by documentary or digital evidence (letters, text messages, emails and so on) but I have not included them so that the story flows more easily. In this second part of our story, I am going to include more of these documents within the narrative so that readers can see for themselves that I am not making this up, or speculating, or exaggerating, but stating facts. These will include emails (which I’ll simply copy and paste) together with letters written by the doctors and others and even extracts from Ann’s medical notes (which will be photographs or scans to demonstrate that these documents are genuine). The further we move through the story, the more of these there will be.

I suspect that these will tend to make the story a little less easy to read and for that I apologise. I hope however that you will understand that it is terribly important that you know that I am trying to be scrupulously honest throughout this account. Please stay the course. Please continue to read – because at times, what happens will leave you open-mouthed in disbelief.

With that said, we resume our tale in the early New Year of 2016:

2015 was finally over and we were not at all sorry to see it go. It had been the worst year of our lives. Ann had started the year as a super-fit, healthy and happy dental surgeon.  She ended it miserable, isolated, abandoned, in permanent agony and completely unable to work. The Gabapentin prescribed by the pain specialist Dr Q barely took the edge off the chronic pain and it caused horrendous cognitive side effects so that Ann’s memory was shot to hell and she was unable to concentrate at all. When she watched a drama on television, she couldn’t follow the plot because she couldn’t remember what had gone before. She repeated herself all the time because she had no recall of already having said the same thing moments before. It was rather like living with a stranger – an impaired, confused and despondently sad stranger.

The financial losses to Ann’s income and to my business (because I had taken on no new projects now for 7 months) were probably already beyond six figures but that was as nothing to the suffering I witnessed every day. Ann was but a pale shadow of the woman I knew and adored. I felt bereaved. And angry. Angry because I wasn’t watching the consequences of Ann’s condition. I was watching the consequences of her treatment.

Ann had her first appointment at the Freeman Hospital in Newcastle upon Tyne on 13th January 2016 and we earnestly hoped that this would be the start of a much more hopeful 2016.

There, we met senior cardiologist Dr R. Unfortunately, her secretary had failed to apply for a copy of Ann’s notes so Dr R had no knowledge whatsoever of Ann’s medical history. As a result, little was achieved other than explaining the complex background to the visit and a further appointment was scheduled the following month. Dr R suggested switching the Gapanentin for Ibuprofen. Ann did try it briefly, but it was a complete waste of time. The whole visit was an enormous disappointment.

We returned to Yorkshire very depressed to discover that we had received our first meaningful response from the Hull and East Yorkshire Hospitals NHS Trust whilst we were away. Six weeks had ellapsed since the complaint had been submitted.  The response was in the form of an email from the ‘investigating officer’ whom we shall call Ms R (the fact that the doctor and non-doctor pseudonyms have both reached R at the same time is a slightly confusing coincidence) which is reproduced below. By the way, the square brackets in these extracts indicate that a change has been made to protect identities. Round brackets indicate a correction of bad grammar or insertion of assumed missing words to make this version easier to read than the original. A row of dots means that I’ve missed something out – also to make it more readable. That apart, the documents are unchanged. I have not changed any substance or meaning:

Email sent: 10.29 Wednesday 13/01/2016

Dear Mr [Davies]
I am the investigating officer for the complaint regarding your wife, [Ann]. I do apologise for the delay in contacting you as I have (only) recently returned to work.

I am contacting you (to) agree a way forward and to arrange a resolution meeting which will involve myself as investigating officer, (the) clinic(al) lead for Cardiology, Head of Patient Experience and clinicians and physiologists involved in [Ann’s] care.
Please could you contact me to agree a mutually convenient date and time.  I provisionally could suggest the following dates (when) all parties from Hull and East Yorkshire Hospital are available which are:

Friday, 29th January 2016 – afternoon only – 1pm onwards

Friday, 5th February 2016 – afternoon only – 1pm onwards

Thank you and best wishes,

[Ms R]

Business Manager
Specialist Medicine

I had little or no idea what a ‘resolution meeting’ was and, to be honest, I wasn’t sure that anything would be achieved until Ann had been seen again by the team in Newcastle and we were equipped with a second opinion. Ann had no appetite to face the medical team in any event. So, instead of accepting the invitation, I replied with a list of questions.

Ms R didn’t reply and so I called her and she explained to me how these meetings generally proceed. In due course, she persuaded me to attend. I could only make the meeting on February 5th.

On February 2nd, Ann saw our GP and it was agreed to abandon the Gabapentin and switch instead to Pregablin which was the reserve drug recommended by Dr Q. Both drugs are from the same family so hopes were not high that the new one would be much better than the old but we had to continue the search for a solution to Ann’s relentless pain.

I emailed Ms R again on February 4th because she had neglected to tell me where the meeting on the 5th was to take place. I didn’t receive a reply – either to the email or the multiple telephone messages I also left. So, I resorted to calling our ‘friend of a friend’ who in turn informed the Chief Medical Officer and a few backsides were duly kicked. As a result, Ms R telephoned just in time with the venue details stating that a written notification had been sent which had apparently disappeared into thin air.

Needless to say, the written notification never arrived.

But I was able to attend the meeting the following day.

Of the four or five clinicians I was promised, only one bothered to turn up.

Dr B was there but his electrophysiology colleague Dr K was missing. The promised pacing technician was nowhere to be seen and the same was true of the promised consultant and potentially others from the Hull Royal Emergency Department. It is of course quite possible that the incompetent Ms R also failed to tell them where the meeting was to be held but I suspect they all suddenly found that they had an urgent appointment with their chiropodist or a pressing engagement with their stamp collections.

Dr B was joined by Ms R and by Nurse Q – the one who had sent my confidential PALS email to Dr K without Ann’s consent and whose job it was to oversee the resolution of our complaint.

Because Ann felt unable to attend, I began the meeting by reading a statement that she had written for me to share with those present. Ann wanted to make sure that her voice was heard even though she wasn’t there. I reproduce her statement below unedited and in full to give you some insight into how she was feeling. I have highlighted a few sentences which are particularly poignant:

Firstly, I want to apologise for not being able to attend the meeting today.  I would find the situation too emotionally stressful and I am not a confrontational person.

I want to explain to you how it feels to be a patient in my situation in this system.

In May 2015, I went from being a 3-to-4 times a week in the gym girl to having a life-threatening illness.  That is bewildering and terrifying.  I found myself vulnerable and in the care of the cardiology team at Castle Hill. 

I had great faith in the team, and in the NHS.  I had to fight to see my consultants but valued the time spent giving me explanations of my condition and the care I would require.  As a healthcare professional myself, I have some knowledge and therefore more questions and concerns than perhaps the average patient.

My treatment has followed a disastrous path as you have already had outlined in the complaint submitted by my husband.

I know my own body and have been extraordinarily accurate in knowing when I am in danger and when to take myself to hospital.

I wasn’t listened to in August when I was discharged from Hull Royal A&E without any cardiology input, despite my history of ventricular tachycardia since May.  I went on to have a cardiac arrest four hours later.

When you are discharged from hospital, you are given emergency numbers which are never answered.  This results in feeling isolated, cast off and alone. 

I feel like I have been placed in a glass box where no-one can hear me or understand what I am trying to say.

My faith was absolutely shattered at the pacing clinic.  Having been sent in by my GP with a referral letter because I did not stop bleeding after a routine venepuncture to assess my blood potassium levels.  He sent me to Castle Hill (perhaps inappropriately) because the bleed was due to medication prescribed by the cardiologists and any reversal might require their input.  However, the main reason for his decision was that he felt that I was in great need of some empathy and support and he felt it most likely that I would receive it from the cardiology team since they knew the awful journey I had been on with my health in the previous months.

Not only was I dismissed in a curt and angry manner, but I was told not to present at clinic again without a prior appointment – even though I had attended with a GP referral letter.

When I complained yet again of severe pain over my ICD site (as I had done at every previous pacing clinic visit) I was told “IT HAD NOTHING TO DO WITH THE SURGERY OR ANYTHING THEY HAD DONE”.

I was utterly dumbfounded.  The pain is not in my knee – it is directly over the ICD site, in my left breast and axilla and nowhere else.  It is most definitely related to my surgery.

Since my revision surgery on 24th September, I have been in constant pain.  I cannot be vertical for any length of time. The longer I sit upright or stand and walk during the day, the greater my pain by afternoon or evening.  I cannot do normal things without paying a penance.  The pain reduces me to a tearful, crumpled heap on a regular basis – and I am a strong and determined person.

I am a professional woman, a dentist in private practice. I am still not able to work and have lost 9 months of income so far. I was very fit, slim, youthful and healthy and was led to believe that I would be able to return to being myself in a short time.

I can’t even go for a walk.  As for a return to work, that goal keeps moving away from me.

I want someone finally to listen.

I want someone to take some responsibility and help me.

I appreciate that not everything goes according to plan, but if you have any care for the person, any humanity, you try to resolve it. 

It seems that there is no such thing as a medical professional who cares for the whole person.  The cardiologists say that the pain is not their responsibility and simply refer me to an anaesthetist and pain specialist who can only mange the pain and who, in turn, says that the cardiologists are responsible for investigating the cause.

I am passed back and forth with no answers.

All that I ask is that you investigate the cause of my pain. The ICD moved between procedures.  Could it be the new position that is the problem? Is it the trauma of the second surgery? Or perhaps a combination of the two?

There must be some sort of scan that can be done that might give some clarity or information.  You would not be saying that you could not or would not investigate if I had breast cancer and an ICD.

I have been asking this question for months to no avail.  In the meantime my life is on hold.  I am the person who has done everything possible to look after my health by making good lifestyle choices.

All I want is for someone to take some notice and give me some normality back in my life.

Thank you for listening.

The room was silent after I finished reading. But I wasn’t finished.

I then took out my iPad and played the videos of Ann screaming in pain that I had filmed a few weeks earlier.  Dr B clearly hadn’t seen the footage before and he was visibly shocked. It seemed to me that he had assumed that Ann had been exaggerating her pain but now he could see just how awful it really was.

I now had their attention – but I was terribly nervous. I had never been in this sort of situation before. I had tried to mentally prepare myself for this encounter but the absence of most of the people I was supposed to be talking to threw me completely and many of the questions I had ready simply disappeared from my head.

I initially tried to steer the discussion towards what might be done to improve Ann’s situation rather than argument about what might have gone wrong to leave her in this condition. In the end, we simply didn’t have enough time to cover all the issues. Dr B made his excuses and departed before I had an opportunity to discuss what happened in the lab during that second procedure. To this day, I regret not holding Dr B’s feet to the fire about what happened that day. With most of the critical people missing and not enough time to get into any detail, it was all very unsatisfactory and I came away extremely frustrated.

Today, 18 months later, I don’t recall all that was said but fortunately, there were a number of written exchanges about it at the time so the details of the conversations were captured and are far more reliable than my memory. The first account was in an email I sent to Ms R and Nurse Q which I sent on 9th February 2016:

Email sent: 10.56 09/02/2016

[Ms R, Nurse Q]

Thank you for your time at the meeting on Friday.

I have to say that I found it very disappointing that there was only one other attendee, rather than the four I was told to expect ([Dr B, DR K], a pacing technician and an ED consultant).  The absence of any representative from Hull Royal Infirmary A&E Department was particularly annoying and I trust that a second meeting will be arranged very quickly.

Nonetheless, whilst we didn’t cover nearly as much ground as I had hoped, there was some useful discussion. 

At least it seems that everyone now accepts that [Ann’s] ongoing pain and suffering is indeed a direct result of the surgical procedures despite [Dr K’s] earlier assertions to the contrary – as [Ann] has been saying since September.  Dr B also accepted the plausibility of the theory that the extensive haematoma that followed the original surgery could have caused enlargement of the ICD pocket.  When the haematoma was resorbed, the ICD dropped in the enlarged pocket, pulling the ventricular lead out of position – resulting in the need for the second procedure. 

[Dr B] also explained that during the second procedure, he inverted the ICD generator such that the lead terminals were facing downwards.  He acknowledged that the terminals could now be pressing on a nerve and as such, be the cause of [Ann’s] ongoing chronic neuropathic pain.

He suggested that, in his view, the best solution would be to operate yet again, removing the ICD from its sub-pectoral location and repositioning it sub-cutaneously.  There is no guarantee that the additional surgery will bring an end to the pain but if the scenario outlined above is accurate, it ought to do so.

So, [Ann] is faced with the prospect of a third operation to put right the flawed second procedure – which was itself carried out to put right the flawed first procedure. 

It is a lamentable state of affairs.

[Ann] needs to have a little time to consider whether she wants to undergo the third procedure.  Firstly, she would like to give the Pregablin time to do its job.  She is not yet titrated up to the full dose and so cannot yet assess how successful it will be in supressing the pain and she also needs time to see if she develops a tolerance to the debilitating cognitive side effects.  Secondly, she has another appointment at the Freeman Hospital in Newcastle and would like to hear [Dr R’s] (hopefully independent) opinion regarding the proposed ICD relocation.  This appointment was scheduled for tomorrow but has been cancelled due to a doctors’ strike and will be re-arranged, probably for early March.

I look forward to hearing from you very soon about a further meeting with representatives of A&E.

There are other records of the meeting that we will come to shortly but one thing I do recall clearly is Dr B’s promise to write a letter to Dr R in Newcastle setting out Ann’s cardiology history which was both helpful and appreciated – or so I thought.

In the meantime, on February 10th, I received this reply from Nurse Q:

Email sent: 11.24 10/02/2016

Thank you for your email and I apologise that you understood that other people would be attending the meeting. I am currently organising the ED side for a meeting and response and will be in touch with dates shortly. The final written response will be with you after that meeting. Regarding your request for a copy of the letter sent [Ms R] will get a copy to you.

Kind regards

“I apologise that you understood that other people would be attending the meeting”???!!! Of course I understood that other people were attending the meeting. It was Ms R and Nurse Q who had told me so. Idiots.

Ms R didn’t send the copy letter.

The copy did arrive eventually – from Nurse Q on February 22nd after we made calls to chase it up (because we were soon due back in Newcastle and we wanted to know how much they had been told). It was dated February 5th and so appears to have been dictated immediately following the meeting that day. Interestingly, it was also typed on the February 5th. This was probably the only piece of correspondence we ever saw that had been typed on the same day that it had been dictated (see extract below).

We subsequently discovered that the letter was never received in Newcastle.

I am aware that the postal service occasionally loses letters but two pieces of correspondence had allegedly been sent by the Trust (the meeting invitation to me and Dr B’s letter to the Freeman) and both had mysteriously ‘disappeared’. I am afraid that I simply don’t believe that. I believe that neither existed. I believe that no invitation was ever sent. I believe that Dr B’s letter was written later so that we could be provided with a copy. That is why it never arrived in Newcastle and that is why the typing date isn’t several days after the dictation as is usually the case.  The PDF we received was also created on February 22nd, not February 5th. I may be wrong. It may be that the secretaries at Castle Hill put letters in the bin instead of the post box but I think it’s unlikely.

I’m afraid that the only plausible explanation is that the letter was thrown together in haste retrospectively – which might also account for why it was wholly inaccurate.  The clinical history it provided was completely wrong, placing significant events in Ann’s history in completely the wrong order, stating that she was on an anti-arrhythmia drug that she wasn’t taking and providing yet another incorrect account of the ICD lead displacement. In short, the letter was a disgrace.

Naturally, I wasn’t very happy and so took the matter up with Nurse Q later the same day.:

Email sent: 20.49 22/02/2016

[Nurse Q],

[Ann] and I have had the chance to read [Dr B’s] letter to [Dr R]. Sadly, our request for a copy was justified as the letter contains a number of fundamental errors.

On page two, paragraph 2, [Dr B] states that [Ann] could not tolerate Bisoprolol and so was switched over to Verapamil. [Ann] took the Verapamil for less than 48 hours. She could not tolerate the Verapamil and was put back onto Bisoprolol which she took for several months.

Page two, paragraph three describes how, in August 2015, [Ann] underwent an angiogram and had a lesion in the left anterior descending coronary artery successfully stented following her cardiac arrest. He goes on to say that “at this stage”, she underwent the implantation of the ICD.

The stent was in fact fitted in early June 2015, some two and a half months before the cardiac arrest or the ICD implantation – both of which did happen in August. [Dr B] states that he is sure that the terrible haematoma that followed that surgery was “the result of the anti-platelet therapy”. What he doesn’t say is that the cardiac team had known about the anti-platelet therapy for two and a half months (they had administered it after all) and then failed to take any precautions to prevent the haematoma.

Later in the same paragraph, he describes how he “repositioned the leads” when he carried out the revision procedure in September. His letter to our GP following that procedure stated that he repositioned the atrial lead only. His clinical notes made at the time state that he repositioned the ventricular lead only. Three different versions in three different documents.

It is not the first time we have questioned the accuracy of correspondence. Following [Ann’s] discharge in August, the discharge letter sent to our GP stated that she had been admitted for “dizziness”. She had in fact been admitted following a cardiac arrest. Apparently, this minor detail was not seen as something that our GP should have been told.

Given the present situation, one might have expected that by now, there might be some attempt to be accurate.

I appreciate that none of this is within your control. However, you role is concerned with patient experience and I have to tell you that our experience continues to be extraordinarily frustrating.

Regards,

Three days later, Nurse Q responded saying that she had arranged to meet Dr B to discuss these issues and would get back to me after the meeting.

She didn’t of course.

I was able to explain the errors in the letter to Dr R in person a couple of days later when Ann had her re-scheduled second outpatient appointment at the Freeman on February 24th. Now that Dr R had had time to study Ann’s medical notes, she agreed that the best course of action was further surgery with the potential of further EP studies and ablation attempts after everything had settled down.

She recommended that the ICD was relocated from its sub-pectoral location to a sub-cutaneous pocket as Dr B had suggested. She therefore introduced us to her colleague, consultant Dr S who had extensive experience of revision surgery and so would be the best person to perform the procedure. We liked him immediately. He treated Ann with respect and compassion and answered all our questions patiently and in detail. Ann felt at last that she was now in safe hands. She agreed to the procedure and we were told that it would take place sometime in March.

Obviously, after her previous experiences, Ann was genuinely scared at the prospect of being opened up for a third time and, as Dr S explained, the risk of infection was doubled with every repeat of the implant. Furthermore, any infection which might take hold would not show itself until as long as six months after the procedure. It would be the autumn before Ann knew whether the corrective procedure had been entirely successful.

Nonetheless, the priority was getting rid of the unbearable pain so she really had no choice but to go ahead.

Third time lucky, we hoped.

You have no idea just how much we hoped.

Go Straight to Chapter Twelve

Chapter Thirteen – Implant Three

Ten days before the scheduled procedure in Newcastle, Ann was instructed to stop taking her blood thinning medication. This was nothing to do with the haematoma following the first implant – the Newcastle team knew nothing about that. It was routine good practice which Castle Hill hadn’t seen fit to follow.

We travelled to the North-East on Tuesday 3rd May and we went for a rather special lunch before Ann was admitted in the afternoon and went ‘nil by mouth’. It also served as a distraction from the concern we both felt after the two previous implant procedures had ended disastrously. However, the worry was balanced by the hope that this would finally bring an end to Ann’s suffering.

After lunch, we arrived once again at Ward 27, the Freeman’s equivalent to Ward 28 at Castle Hill, which was for electrophysiology and interventional cardiology patients. The patients in the bay were there for EP studies, angioplasties and implants so it all felt familiar and yet also a little intimidating. That unique soundscape – the beeps and alarms of the cardiac monitors – was just the same but it was strange not to know the names of the nurses or the layout of the hospital. Ann had spent so long as an in-patient at Castle Hill that we even knew the tea ladies and the porters. Here, we  were strangers again.

Elsewhere in the department were the cardio-thoracic surgery and even the heart transplant patients. Later, on my way out, I was passed by a surgical and intensive care team taking a young child from one of the operating theatres, I assume, to the Cardiac ICU. The little guy was less than two years old and was attached to more machines than I would have though possible and had at least half a dozen doctors and nurses in attendance. It looked like he had had open heart surgery, or perhaps even a transplant. His anguished parents walked along beside his bed and all the attached life support machinery. I remember feeling overwhelmingly guilty for how small our problems seemed when compared to what that young couple were coping with. I’m not a religious person and so I am not one for prayer but I prayed for that little boy and his parents.

Ann’s rather less daunting revision procedure was due to take place the following morning. This time, there was no sign of any infections so everything would go ahead as planned. I had been told that I would have to stick to visiting hours so for the first time, I wouldn’t be there when Ann went down to the Cath Lab.

By 11.00am on the Wednesday, Ann was already back on the ward, with her implant repositioned and she was sore but apparently fine. By the same evening, Ann could already tell that things were going to go a lot better than her previous implants.

The following morning she sent me a text:

“Much better today. Huge improvement from last surgery”

And she was informed that she would be discharged the very next day.

Before discharge, she was given an ECG and reviewed by Dr S. He said that the set-up of the ICD done at Castle Hill made no sense. The base pacing rate (the minimum level below which the ICD would not allow Ann’s heart rate to go) was set at 70BPM and the accelerometer was still switched on so upwards pacing was still mechanical and caused by any movement. As a result, Ann’s heart rate was at or above 70BPM for 80% of the time. Dr K at Castle Hill had said that the accelerometer would be switched off but it obviously hadn’t been done (like so many other things).

Dr S reset it to a more natural base rate of 65BPM and switched off the accelerometer so Ann’s sinus node could decide when to speed things up. She felt better almost immediately. Ann’s resting rate before her illness had been consistently below 60BPM so this new rate and the lack of mechanical upward pacing felt altogether more natural and comfortable.

Back at home, Ann had the dressing removed the following Monday 9th May. The scar was smaller and neater than expected. There was, of course, no sign of any haematoma.

By May 13th, just 9 days after the surgery, Ann was able to walk half a mile to the newsagents to buy some milk. It was a year to the day since she had gone to the GP to report her first palpitations. It had taken a year to fix what should have been fixed in a few weeks at most.

A week after that, Ann was able to travel with me to Kent for a family funeral. Not only was she able to cope with 8 hours in the car, but she was able to stay on her feet most of the weekend. The pain was already improving enormously. Another week later, Ann travelled to London to join our daughter-in-law’s baby shower (our first grandchild was due in June). A week after that, we flew to Cornwall for a week-long holiday and, remarkably, Ann was able to join me hiking along the South-West Coastal Path. We simply couldn’t believe the transformation.

The same period after the second implant at Castle Hill, Ann was still mostly bed-bound and only able to spend any time outside in a wheelchair.

It was beginning to look it really was third time lucky. The relief was enormous.

Because Ann increasingly needed less support, I was finally able to resume travelling with my work. Whilst Ann was in London at the baby shower sipping champagne with our daughter-in-law and her friends on a cruiser on the Thames, I was in Italy visiting a potential project. Some normality was returning at last.

Ann’s improved health also meant that I could find time to look at the letter from the Chief Executive of the Hull and East Yorkshire Hospitals NHS Trust which had been lying neglected since late April.

I finally replied to it on 29th May – six months to the day after my complaint had been submitted.

As six months had passed, I was now free to refer the complaint to the Parliamentary and Health Service Ombudsman. But first, I had to rebut some of the nonsense in that letter. The Trust had of course completely ignored everything I had told them and resolutely stuck to the untrue statements in their previous communication.

Here is my reply in full. You will note that I have not concealed the name of the Chief Executive of the Trust. That is because, ultimately, the buck stops with him – and, as you will read in later chapters, he had ample opportunity to avoid being singled out:

Dear Nurse Q,

I am in receipt of the letter dated 25th April and signed by Ms T on behalf of the Chief Executive, Chris Long.  This response is copied to both of them.

I will respond to some of the points in a moment but can I begin by thanking you for your attempts to resolve the issues raised in my complaint made six months ago today.  It is not your fault that the answers you have been given to pass on to me are unsatisfactory, incomplete and in some cases, simply untrue.  I know that your concern for Ann is very genuine and so I’m sure you will be interested to hear that Ann is recovering well following the corrective surgery at the Freeman Hospital in Newcastle to reposition the ICD from its sub-pectoral position to a sub-cutaneous site. After a false start in March when she was too unwell to undergo the procedure, she finally had the operation on Wednesday 4th May.

Four weeks after the last procedure at Castle Hill, Ann was still needing to take Morphine and I was pushing Ann around the supermarket in a wheelchair.  After the procedure in Newcastle, she was up and about the same day and was able to withdraw the morphine after just 3 days.  It is too early to say whether the chronic neuropathic pain caused by the September surgery at Castle Hill will now disappear altogether but Ann will shortly begin reducing the dose of Pregablin, so we will know very soon.  However, the remarkable improvement in her mobility and general sense of well-being suggest that we have reason to be optimistic.  All being well, she hopes to return to work in early July, around fourteen months after she was first taken ill.  Our first grandchild is due to be born in just a few weeks and Ann’s earnest hope is that she we will be well enough by then to hold him without pain.

And so, to the letter.  I have no intention of answering every paragraph but I am unable to allow some points to stand:

“Is the ICD the cause of Ann’s pain?”

The Trust seems very determined to deny this blatant cause and effect. There was no neuropathic pain before the September procedure. There was chronic neuropathic pain from the moment the procedure was carried out.  Dr B seems to be the only person unable to join the dots.

Incidentally, Dr B’s assurances reported in the letter that the generator had not dropped completely contradict what we were told at the time.  In fact, it was Dr B himself that told Ann and my daughter Kate that that the generator had dropped. Indeed, he explained in some detail that he had chosen to leave the generator in its dropped position rather than attempt to lift it back to its original location. Why he should choose to tell an entirely different version now is completely mystifying.  Clearly, both cannot be true.

You will recall that Dr B had explained in great detail at the first resolution meeting that he had left the ICD generator in its dropped position to reduce the likelihood of further movement and had inverted it so that the terminals faced downwards. He had earlier told Ann that he had left it in the dropped position the day after the surgery in September 2015. He was now asserting that the generator had not dropped. I will leave you to form your own opinion as to Dr B’s honesty.

My reply continued:

“Why has Ann not had an examination post procedure?”

Thank you for acknowledging that your earlier assertion that Dr K examined Ann post procedure was also untrue.

I am aware that Ann was “reviewed” post procedure on 27th August.  Sadly, those reviews did not include an examination of the operation site.  As I have already said, the site was not examined by anyone in the 48 hours following surgery, so the haematoma was allowed to develop untreated.

“No clinical errors were made during both procedures”

At Newcastle, Ann’s Clopidogrel and Aspirin were withdrawn ten days before the surgical procedure in accordance with normal good practice. At Castle Hill, they were not withdrawn before the first procedure in August.  That was a clinical error which led to a greatly increased risk of haematoma.

Then, despite

a) Ann’s history of haematoma (refer to what happened following the angioplasty in June),

b) the fact that the Clopidogrel and Aspirin had not been withdrawn and

c) a specific discussion before the procedure between Ann, myself and Dr K that a pressure dressing would be used,

no pressure dressing was in fact used after the procedure.

That was a further clinical error which, combined with the error above, caused the massive haematoma that led to so much pain and suffering for [Ann] (and, I believe, also caused the lead displacement which in turn led to two further operations and nine further months of inability to work for [Ann] that should not have been necessary at all).

Following the first procedure, despite Ann’s obvious pain and protestations, no member of the medical team examined the wound site to check for haematoma.  In that there were many members of the team who should have done their job more thoroughly, this constitutes a whole string of further clinical errors which only served to make matters worse.  Indeed, the hospital tried to discharge Ann without examining her and it was only when Ann refused to be discharged that Dr D was called and found the haematoma and prescribed emergency intravenous antibiotics and painkillers to reduce the immediate danger to Ann – a danger which was the direct result of those clinical errors.

As for the second procedure, a month or more on morphine, a month or more not even able to climb the stairs alone.  A month or more unable to leave the house. I had to take the best part of two months off work to nurse Ann following the second procedure. Month after month of chronic neuropathic pain, mind-numbing drugs and an utterly destroyed personal and professional life.  These are not the consequences of an error-free procedure.

I know that the medical team will maintain that the procedure was routine and there was nothing out of the ordinary.  I don’t believe a word of it.

Perhaps the photographs below will help.

The first, below, was taken at 8.30pm on Wednesday 20th April 2016, roughly seven months after the second procedure but before the corrective surgery at Newcastle.  Please bear in mind that this is a photograph of a sub-pectoral ICD implant, as recommended by Dr K at Castle Hill because the implant would be more discreet. As you can see, far from being discreet, the ICD generator is ‘sticking out’ like a plaster on a sore thumb.  It wasn’t as bad as this all the time, but often protruded in this way at times of particularly severe neuropathic pain.  To the untrained eye, it appeared that the top edge of the generator had come through the pectoral muscle wall.  Even the staff in Newcastle were sceptical about this when we described it and they specifically asked me to send them a photograph.  This is the shot we sent to them.  Look at the shadow of the edge of the t-shirt to see just how far the device is protruding.  Does it look like the result of a routine procedure to you?

By contrast, the second photograph below was taken at 2.00pm TODAY, three and a half weeks after the corrective procedure at the Freeman:

As you can see, the ICD is no longer visible – DESPITE THE FACT THAT THIS IS NOW A SUB-CUTANEOUS IMPLANT!  No swelling, no haematoma. As I have already said, Ann is making a very rapid recovery from the surgery.  Finally, it seems that the procedure has been carried out with competence.

So, Dr B can continue to tell me until he is blue in the face that everything was normal with that second procedure and that no clinical errors were made but I’m afraid that just isn’t believable.

“Dr B advises that the procedure took one hour with no complications”

Dr B’s assertion is not supported by the facts.  I was in the department the whole time.  Ann was in the Lab for three hours and forty minutes. Dr B told Ann the next day (and my daughter who was also present and recalls the conversation in great detail) that he was “at the point of asking for help”, such was the difficulty he was having with the procedure.  Again, the response is simply not credible.

“The outstanding issues have been looked at again…”

You have only dealt with the issues in your minutes of the resolution meetings, not with the complaint itself.  For instance:

You neglected to carry out an angiogram during the first admission, completely missing a stenosed coronary artery. Not addressed.
Repeated inappropriate recommendations by junior doctors to prescribe long term Amiodarone to an otherwise healthy 57 year old woman. Not addressed.
Unanswered correspondence from GP to Castle Hill. Not addressed.
Inability to contact cardiac secretaries at Castle Hill. Not addressed.
Multiple or incorrect appointment letters sent out. Not addressed.
Dr K’s appalling behaviour towards Ann when she attended with an uncontrolled bleed. Not addressed.
Emergency ICD telephone number NEVER answered. Not addressed.

And I could go on.

I wonder if I called that emergency number now whether it would be answered.  I doubt it.

You see, the problem I have is that I don’t think the Trust has truly listened to anything I have said.  I don’t believe that anything meaningful has changed.  I don’t think that another unfortunate patient following the same path as Ann would have a better experience than she did.

In short, my complaint has achieved nothing.  That just isn’t good enough.

I therefore have no choice but to refer the matter to the Parliamentary and Health Service Ombudsman and will be doing so in the coming days.  I hope he has more success.

Sincerely,

Nurse Q replied 10 days later:

I have just returned from leave and wanted to acknowledge your email. I am really pleased to hear that things have improved for Ann and your family generally and wish her well in her continued recovery.

I am sorry that you remain dissatisfied with your complaint response and understand that you are referring this to the PHSO and will of course comply fully with their investigation.

Kind regards

And thus ended the prolonged correspondence tennis match between me and Nurse Q. As before, she completely ignored what I had said. She failed to contradict, question or challenge anything in our version of events (she couldn’t after all, because it was all accurate and true).

I don’t blame her. She was only doing her job. It wasn’t her fault that her role entailed pedalling hopelessly inaccurate and untrue assertions from the clinicians. Nurse Q got paid to say that the sun was shining, even when it was very obviously pissing down.

I do blame the Trust however.

Here was an opportunity to learn from some terrible events that should never have happened and in learning those lessons, bring about genuine improvements in patient safety. The Trust knowingly and deliberately chose not to do that. The Trust  refused to acknowledge that its systems could be improved because to do so would imply that they were imperfect in the first place. The Trust allowed future patients to be exposed to the risk of the same mistakes being made again and in so doing, they placed lives at risk.

That is worth repeating.

My belief is that the Trust chose to put lives at risk by failing to act.

That was unforgivable. I had to get the Ombudsman involved to see if he could succeed where I had failed. I could not allow the Trust to get away with their abdication of responsibility.

And so the Ombudsman will be the subject of the next quite remarkable part of this story. Remarkable because, as we discovered to our utter horror, the Ombudsman turned out to be every bit as incompetent as the Trust.