Chapter Five – Implant

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank heaven for small mercies!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday. Operation Day.

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

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

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

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

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

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

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

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

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

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

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

But they didn’t even glance at it.

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

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

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

The incompetence continued.

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

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

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

Incompetence at every turn. Enough was enough.

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

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

She immediately cancelled the discharge.

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

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

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

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

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

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

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

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

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

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

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

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

Dizziness!

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

Utterly beyond belief.

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

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

Go straight to Chapter Six

Chapter Six – Shocks

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

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

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

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

The ICD defibrillator had shocked her!

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

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

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

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

NEVER.

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

The further EP study never materialised anyway.

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

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

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

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

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

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

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

Rant over (for now).

The promised 24 hour urine collection didn’t happen.

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

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

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

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

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

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

The urine collection was started.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not a chance.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was an avoidable and totally unnecessary risk.

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

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

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

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

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

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

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

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

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

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

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

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

“BY THE WAY!!!”

For God’s sake!

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

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

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

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

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

Things couldn’t possibly get much worse.

Oh yes they could.

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

Go straight to Chapter Seven

Chapter Seven – Implant Two

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ann went down for surgery at 10.20.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That turned out to be the understatement of the century!

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday 26th September was yet another discharge day.

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

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

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

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

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

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

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

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

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

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

8 WEEKS!

Until then, Ann was on her own.

Again.

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

In fact, probably for the rest of her life.

Go straight to Chapter Eight

Chapter Eight – Isolation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This was a complete revelation!

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

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

We were also delighted.

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

FINALLY!

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

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

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

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

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

Oh how I’d love to hold the paddles!

Enough!

Back to the tale.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It rang….  and rang…  and rang.

She tried again a little later.  Same story.

A little later.  No answer.

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

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

Perhaps we were supposed to send a messenger pigeon!

Or maybe smoke signals.

She tried the direct line again.  No answer.

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

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

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

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

Thursday was exactly the same as Wednesday.

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

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

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

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

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

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

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

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

Clearly, the drugs were still not doing their job.

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

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

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

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

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

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

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

Needless to say, it wasn’t.

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

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

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

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

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

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

This could not have been further from the truth.

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

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

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

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

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

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

Gradually, the groans and whimpers became cries and screams.

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

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

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

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

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

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

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

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

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

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

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

They did.  Obviously.

The appointment with Dr B never arrived.

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

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

Go straight to Chapter Nine

Chapter Nine – Abandoned

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

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

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

In agony.

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

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

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

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

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

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

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

So, it’s important.

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

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

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

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

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

Which is why she had blood tests every week.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ann was speechless.

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

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

And Ann didn’t believe Dr K.

Either she was lying, or she is profoundly stupid.

Clearly, she isn’t stupid.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was the first plausible explanation that we had received.

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

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

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

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

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

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

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

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

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

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

And that is why you are reading this story.

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

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

Go straight to Chapter Ten

Chapter Ten – Complaint

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No apology was received.

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

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

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

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

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

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

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

The following week, Ann had three appointments.

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

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

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

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

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

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

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

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

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

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

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

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

Suddenly, there were no more medical appointments.

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

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

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

It was a truly awful period of our lives.

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

Surprisingly, I heard from the CQC first.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Go straight to Chapter Eleven

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 Twelve – Meeting Two

The week after the decision was taken in Newcastle to relocate the ICD into a new sub-cutaneous pocket, I had my second meeting with the Trust – this time with the representatives of the Emergency Department at Hull Royal Infirmary. On this occasion, I knew a little about what to expect and I was better prepared. No-one would be leaving this meeting until we had covered every issue.

I met Dr T, the lead consultant at the Hull Royal Infirmary ED and senior ED Matron, Nurse S at Hull Royal on Wednesday 2nd March 2016. Once again, I was chaperoned by Assistant Chief Nurse in charge of patient experience, Nurse Q.

We discussed each of Ann’s many visits to the ED in turn, starting with the first time I drove Ann there with palpitations and Dr A did such a magnificent job of looking after her. So, we covered many positive and negative experiences but the common thread that came out again and again was that the ED staff simply didn’t listen to Ann. The breathtaking arrogance of so many of the doctors prevented them from recognising that Ann knew what she was talking about and time after time, she was proved to be correct in what she was telling the staff – but they simply ignored her.

Of course, we discussed the September incident relating to the curious potassium blood test results and, to their credit, Dr T and Nurse S made the astonishing admission that the only explanation was that Ann had been treated based on someone else’s blood results.

Most of the time however was spent discussing the August visit preceding the cardiac arrest and the appalling way in which Ann had been treated. Dr T was at pains to point out that the ED doctor that night was a dedicated, skilled  and conscientious clinician – and I don’t doubt that this is the case. However, she messed up that night – spectacularly. Dr T argued that ‘treatment pathways’ had been followed correctly but we both knew that wasn’t the case. It cannot possibly be true that the pathway states that a patient with known arrhythmia, admitted as an emergency with ventricular tachycardia should not be connected to a cardiac monitor.

It was a very lively and frank discussion with both Dr T and Nurse S eventually acknowledging that multiple errors had been made on at least 3 visits to the ED. They apologised too – with sincerity – and promised to take steps to avoid a repetition. It was very different to the discussions at the earlier cardiology meeting and it was genuinely appreciated.

Then Dr T spoiled it completely when he said that he didn’t believe that Ann had had a cardiac arrest at all! It was more likely, he said, that she had experienced a ‘vasovagal event’. Or in common speech, he was saying that Ann had merely fainted!

Up until this point, I had taken quite a shine to Dr T. He seemed like a really pleasant and honest chap. Now, I felt like climbing over the coffee table and grabbing him by the throat.

Allow me to explain a little about vasovagal events.

A vasovagal event, also known as vasovagal syncope, occurs because your body overreacts to certain triggers, such as the sight of blood or needles or extreme emotional distress. The vasovagal syncope trigger causes your heart rate and blood pressure to drop suddenly resulting in a faint. First of all, Ann was not prone to fainting and had no triggers (apart from snakes – and there weren’t any in the bathroom that day). As a dental surgeon, she was unfazed by blood and needles. She had been in emotional distress earlier thanks to her treatment at the hands of the ED of course, but she was now home and had just a long soak in the tub. She was no longer under emotional distress. On the contrary, she was relaxed at last.

Now Dr T was relying on the fact that a hot bath would have lowered Ann’s blood pressure – which is true and is one of the reasons a bath is so relaxing and good for you. She had also been mis-prescribed GTN tablets by the gastroenterologist who had discharged her from the ED. However, it had been some time since she had taken the one and only tablet she took so its effects on Ann’s blood pressure should have worn off.

But, with low blood pressure we have only one half of the required vasovagal response – and it wouldn’t have fallen suddenly anyway, and even then, at the beginning of Ann’s long soak, not at the end..

The other half of the vasovagal response is a lowered heart rate.

Far from being lowered, Ann’s heart rate was catastrophically high – she was almost certainly in ventricular tachycardia and probably had a heart rate of over 200 beats per minute. You will recall from the earlier Chapter Four that she said repeatedly before she collapsed “My heart’s going crazy!” She was in VT. Then she arrested.

People who faint keep breathing. Ann didn’t. The hearts of people who faint keep beating. Ann’s didn’t.

What’s more, Ann had to be cardioverted, both chemically and by defibrillation, a number of times in the days that followed. This wasn’t an isolated incident. Was Dr T suggesting that the cardiology department administered emergency Adenosine because Ann fainted? Was he suggesting that the ICD shocked Ann twice because she was going to faint?

NO.

Of course he wasn’t.

He was suggesting that only I didn’t know what I was talking about because I don’t have a stethoscope around my neck. He was displaying exactly the same arrogance as his ED colleagues.

There is no doubt that Ann had a cardiac arrest – and that she would have had others but for those emergency measures.

That’s why they had to implant the ICD in the first place.

So I knew that Dr T was talking utter bollocks, and I’m pretty sure he knew it too. That made me extremely angry. I don’t like being treated like an idiot and that’s what I told Dr T. But it wasn’t just that he was treating me like an idiot. Far worse for me was that his statement trivialised what had happened. It was the worst, most terrifying experience of our entire lives and it had very nearly cost Ann her life – and yet he was suggesting that, effectively, we had imagined it.

In reality, Dr T was trying to minimise the consequences of the ED’s serial cock ups. Ultimately, he failed.

In later chapters, you will hear that Hull Royal continued to use the ‘vasovagal event’ defence to our complaint about the ED’s conduct that day in August 2015 when dealing with the Parliamentary and Health Service Ombudsman. The Ombudsman dismissed it as not credible.

Had Dr T not tried to pass off the arrest as a faint, I would not have included the ED issues in the referral to the Ombudsman at all. If he hadn’t tried that cheap trick, he wouldn’t have an Ombudsman finding against him.

By now, a date had been fixed for the third implant procedure at the Freeman Hospital. Ann’s surgery was scheduled for Wednesday March 16th.  A couple of days after that lively second meeting with the Trust, Ann was instructed to stop taking her anti-coagulant medication – a full ten days before the procedure.  This was nothing to do with Ann’s earlier haematoma. It was simply routine good practice by the Freeman Cardiology team. It was yet another sign that we were in good hands.

Of course, had Castle Hill chosen to withdraw the anti-coagulants before the first implant, then you probably wouldn’t be reading this website at all – because the chain of events it describes would not have happened.

I booked a bed and breakfast near to the hospital in Newcastle (and very close to where we had lived when we were first married) and we travelled up on March 15th for Ann’s admission.

Overnight, whilst I had a lonely curry at an Indian Restaurant, Ann developed a temperature and it very quickly became clear that it was going to become, at the very least, a nasty dose of flu. It was no surprise when the Freeman cardiology team decided not to proceed. They didn’t want to operate when Ann was unwell and nor did they want to expose other patients to any risk of viral infection. I had to bring Ann home early the next morning.

It was another enormous setback. Ann had been terribly brave and had mentally prepared herself for what was a very scary further visit to theatre and she would now have to go through it all again. I had taken yet another week off work. It was unbelievably frustrating. It felt as if every possible obstacle was being placed in our way.

Once again, we returned home feeling utterly desolate.

A few days later, things went from bad to worse when I received the second set of the Trust’s minutes of the resolution meetings from Nurse Q.

The notes, especially those relating to the first meeting (which had been received a couple of weeks earlier) were nothing short of a travesty. I would include the full minutes here, but they are very lengthy, and awash with names and details that would need to be redacted. Instead, to allow the reader to appreciate the remarkable combination of incompetence and outright dishonesty, below is my email response to those notes in full. It was a very long email, but as you will see, there was an awful lot of dishonesty and incompetence to address:

Email sent: 14.05 Monday 28/03/2016. Copy sent to the Care Quality Commission.

Dear [Nurse Q],

Thank you for your letter dated 17th March and attached notes of the second meeting with representatives of the ED at Hull Royal.  As the Easter weekend finally allows me a little time to attend to these matters, I will respond to those notes, and the earlier notes of the first meeting with [Dr B].

First though, a quick update on [Ann]:

She was admitted to the Freeman Hospital, Newcastle on Tuesday 15th March to undergo a relocation of the ICD from its sub-pectoral location to a new sub-cutaneous location on Wednesday 16th.  I took the week off work and booked myself into a hotel near the hospital.

Sadly, during the night of the 15th, [Ann] developed flu-like symptoms and a fever and so the procedure was cancelled and she was discharged the next morning.  The procedure has now been rescheduled for 4th May.  So, her hoped-for recovery will have to wait an extra 7 weeks and we now know that it will be at least a year between her first falling ill and a possible resolution. Her return to work is no closer and if this continues much longer, that option may disappear altogether.

[Ann] was very poorly for the following week – sleeping an average 19 hours per day according to her ‘FitBit’ – but is now recovering somewhat from the virus.

She still has periods of chronic pain which the Gabapentin cannot eliminate.  The cognitive effects of the drug are as severe as ever. She remains unable to concentrate and her memory is ‘shot to hell’. She feels isolated and terribly lonely, spending most of her days confined to home with few visitors.  Her life remains extremely unpleasant.

Next, I will deal with your notes of our first ‘Being Open’ Meeting.

I have to say that I was both disappointed and annoyed when I received these.  I’m afraid that there is more wrong than right in your minutes of our discussions and I cannot allow your notes to stand as the only record.  Below the more important points I wish to dispute:

Minutes of the ‘Being Open’ Discussion on 5th February 2016:

Explanations/Answers Given Para 2:

“Dr Q** was unable to diagnose the cause of pain”

Incorrect.  [Dr Q, not Q**] was indeed able to diagnose that the pain was neuropathic in nature and stated in his letter to our GP that [Ann] “has clearly developed post procedural neuropathic pain”.  There is no doubt that the cause of the pain was the surgery.  What Dr Q was unable to identify was the precise mechanism – e.g whether the ICD was causing pressure on a specific nerve.

(**Here, Nurse Q even managed to get the doctor’s name wrong).

Explanations/Answers Given Para 4:

“[Nurse Q] apologised that the ED team could not be present”

I had in fact been assured by [Ms R] that [Dr K] and a member of the pacing team would also be present at the meeting.  Only [Dr B] was present.  So, two representatives from Cardiology were missing.  Two representatives from the ED were missing.  One out of five people turned up. It was hardly a very impressive start.

Obviously, the meeting with the ED representatives was rearranged so that was addressed.  The response from Cardiology remains wholly inadequate.  In particular, [Dr K’s] absence speaks volumes about the department’s attitude towards my complaint. 

Is the ICD the Cause of [Ann’s] Pain? Para 1:

“It was impossible to detect whether the position of the generator in (behind) the muscle was the cause of [Ann’s] pain”

Impossible to prove by non-invasive test, not “impossible to detect”.

[Dr B] recommended that the ICD be relocated to a subcutaneous location and stated that this should stop the pain – so he very obviously believes that the ICD is the cause of [Ann’s] pain.  Our GP believes that the ICD location is the cause of the pain. [Dr Q] (the pain specialist) also believes the ICD location is the cause of the pain. The Freeman Hospital cardiology team believe that the ICD location is the cause of the pain and they have agreed to relocate the device to stop the pain. [Ann] knows that the ICD location is the cause of the pain which is why she has agreed to subject herself to unwanted further surgery to relocate it.

It is about time you stopped trying to cast doubt on whether the pain is caused by the ICD location.  Something happened when [Dr B] carried out the revision procedure to cause permanent chronic neuropathic pain.

There is NO DOUBT about that.

Is the ICD the Cause of [Ann’s] Pain? Para 2:

“..the Newcastle team may look to remove the ICD altogether and if the device is resting on the muscle, this may work”

If the ICD is resting on a nerve (not a muscle!) this could in theory work but it (ICD removal) can only happen following successful ablation of the aberrant signals causing the arrhythmia. It is unclear at this stage whether a successful ablation is even possible.  In any event, the decision has been made to carry out the relocation instead.  Only if this is unsuccessful will total removal be considered.

“An ICD would be implanted and removed at a later date if not required”

As I understand it, a pacemaker (not an ICD) would presumably be implanted (they would after all be removing the ICD!) because [Ann’s] medication suppresses her heartbeat to a life-threatening level and so she would still need pacing.  If the ablation was so successful that the drugs were no longer required, the chances are that damage would be sustained to the AV node so [Ann] would probably still need a pacemaker in any event.

Is the ICD the Cause of [Ann’s] Pain? Para 4:

“Dr B confirmed an X-ray had shown that the leads had pulled back causing the generator to drop”.

No he didn’t.

He confirmed that the X-ray had shown that the ventricular lead was displaced and stated that this had probably been caused by the generator having dropped in its pocket (so cause and effect are actually completely the other way round).

Remember this. Dr B said that the generator had dropped. He would later say it hadn’t.

Your notes omit to say that [Dr B] also accepted as plausible an explanation I put to him.  Specifically, that the haematoma which followed the first procedure (because anti-coagulation medication was not withdrawn long enough before the procedure and no pressure dressing was used) had resulted in an enlargement of the ICD pocket (basically, the ICD was sitting in a large reservoir of blood creating pressure on the surrounding tissue).  Once the haematoma was resorbed, the enlarged and now largely empty pocket allowed the ICD to drop and that in turn had caused the lead displacement.

It follows that had the clinical errors not been made in the first procedure, then the second procedure – which it has been established is the cause of the ongoing neuropathic pain – would not have been necessary at all.

“He had repositioned the leads and generator to the original position behind the muscle”

Incorrect again.

[Dr B] repositioned one lead (the RV lead) but clearly stated that he left the generator in its ‘dropped’ position so it wouldn’t move a second time.  He did state however that he rotated the generator 180° such that the terminals, which had previously pointed upwards, now pointed downwards.  This was new information for me.

Of course Dr B told our GP that he had repositioned the other (atrial) lead and he stated in his letter to Newcastle (the one that was never received) that he had repositioned both leads. It was the RV lead however, as his contemporaneous notes confirm – see below)

He further acknowledged that it was possible that the terminals pointing downwards may be pressing on a nerve and so may be the cause of the pain. You will recall that I then asked whether he would be able to rotate it back but he said that he would have to fully open the wound to do so and preferred not to introduce yet another potential opportunity for infection when relocation was more likely to succeed.

“Mr [Davies] confirmed that the pain had lessened once the haematoma had resolved”

This refers to the first procedure whereas the rest of the paragraph refers to the second procedure.

What I said was that the pain following the first procedure was reducing along normal lines following resorption of the haematoma – the point being that if the second procedure hadn’t happened, [Ann] would probably have become largely pain free.

The ongoing chronic pain which [Ann] is still suffering today was therefore directly caused by the second procedure, not the first.

Why has [Ann] not had an examination post procedure?

“[Dr K] had examined [Ann] at the time and had determined the pain was under the axilla…”

Incorrect.

You are confusing two separate events. There was no examination post (first) procedure.

Not a single member of the medical or nursing staff examined [Ann’s] wound in the 48 hours following surgery and as a result, the extensive haematoma was able to develop and spread.  [Dr K’s] (completely untrue) assertion that the pain “was not generating from the site of the surgery” was in fact made over two months after the procedure when [Ann] was sent to Castle Hill by her GP with an uncontrolled bleed from a venepuncture.  To the best of my recall, [Dr K] did not examine [Ann] at any time between completing the procedure in August and that unscheduled visit at the end of October.

Assessment Plan/Moving Forward

“1. No clinical errors made during both procedures”

I am genuinely shocked that you have written this.

My conviction remains that multiple clinical errors were made before, during and after both procedures and those I know about have been outlined in my complaint.  I have heard nothing at these meetings to persuade me otherwise. On the contrary.  Everything I have learned has served to reinforce that view.

Furthermore, I have as you know obtained [Ann’s] medical records and I have read every page.  The only contradictions I found between those records and my account were a) a heart rate during the first admission to the ED at Hull Royal of 240 beats per minute whereas my letter states 260, and b) [Dr B’s] notes for 25th September 2016 where he states that he “informed patient procedure went without complications” whereas he actually gave quite a different account (see below).

Aside from that, the records either corroborate my account or are silent about the issues I have raised.

“2. The cause of [Ann’s] pain is as yet unknown”

Here we go again! The trust’s own pain consultant confirmed in writing, three weeks before our meeting, that the cause of [Ann’s] pain was the second surgical procedure.  Every single doctor involved in [Ann’s] care believes that the pain is the direct result of the surgery.

So, this statement is transparently untrue and it should not have appeared in your notes.

So here, the Trust was trying to draw entirely false conclusions from the discussions. They were attempting to place on record that no errors were made and the cause of Ann’s pain was still unknown. Of course, both statements were untrue.

Why did the procedure take 3 hours and 14 minutes?

(Actually, it was three hours and forty minutes)

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

The information I have suggests that this simply isn’t true.

The procedure was commenced shortly after [Ann] arrived in the lab.  Because this was a second procedure, discussion with the anaesthetist took only a couple of minutes. She was in recovery between 1 hour and 30 minutes and 1 hour and forty minutes (according to the staff who brought [Ann] back to the ward who gave me this information in answer to my direct question).  The procedure therefore took roughly two hours.  [Ann’s] blood pressure post procedure was dangerously low (which is why she spent so long in recovery).

There is no doubt in my mind that Dr B was lying. I couldn’t prove it when I wrote this email. It would be much later that my conviction was confirmed when the evidence finally came to light. The procedure did indeed take around two hours. We will find out exactly how that was revealed in later chapters.

“[Dr B] reviewed [Ann] on the ward following the procedure and saw her subsequently the day after”.

Again, this is untrue.

[Dr B] did not review [Ann] on the ward after the procedure.  I was there the entire day and did not see [Dr B] at all (despite a request to see him).  The medical notes confirm that [Dr B] did not do a post-op review with [Ann] that day.

He did see her the following day when our daughter was also present, and that visit is recorded in the notes.  At that visit, far from saying that the procedure had “no complications” as his notes suggest, [Dr B] explained that it had been extremely difficult and that he had struggled to locate the ICD (despite having X-rays showing him exactly where it was). He said that he “had to dissect and dissect and dissect” and explained that he was at the point of asking for help when he finally managed to locate the device.  His own notes state: “V. difficult to dissect + free RV lead – eventually lead repositioned…”

“Eventually” does not suggest a quick and routine procedure.

I’m afraid that [Dr B’s] account simply isn’t credible.

Above: DR B’s post procedure note in Ann’s medical notes. “24/9/2015 Reposition RV (right ventricular) lead under GA. Subpectoral implant – VERY DIFFICULT TO DISSECT and free RV lead. EVENTUALLY lead respositioned with excellent lead parameters”. Does that sound like a quick and ‘routine’ procedure to you?

Plans to provide further information to the patient and/or carers…

“[Dr B] to provide [Dr R], Newcastle with a summary of [Ann’s] clinical history…”

No such summary was ever received by [Dr R] (at least, not until I sent her one).   I know a letter was written because you eventually provided me with a copy but it was never received at the Freeman Hospital. [Dr R] wrote to our GP confirming the same. When it eventually did appear, the letter included a number of factual and chronology errors.  For instance, it stated that [Ann’s] angioplasty was carried out in August “and she was subsequently placed on anti-platelet therapy. At that stage she underwent implantation of (the) ICD”.

That isn’t true either. In fact, the stent was placed in June, two and a half months before the ICD implant.  It would therefore have been possible to withdraw the anti-platelet therapy for a number of days before the implant procedure which, together with a pressure bandage, would probably have prevented the haematoma which caused all the subsequent problems for [Ann].  Of course, neither of these clinically sensible and routine precautions actually happened.

For what it’s worth, I suspect that the letter was written and back-dated only after we requested a copy, which is why it never arrived in Newcastle. Cynical perhaps, but I have good reason to be cynical.

In conclusion, your notes are wildly inaccurate, contain multiple errors and a number of blatant untruths.  Sorry to be so blunt about it but that is the truth of the matter.

Before I move on to the notes of the second meeting, I want to bring to your attention a couple of other matters relating to correspondence (or to be more accurate, lack of correspondence) from [Dr B].

In June or July 2015, Wesleyan Assurance wrote to [Dr B] in connection with a claim [Ann] was making for loss of income under a small policy she has held since the 1980s.

[Dr B] apparently chose not to respond.  In the end, Wesleyan had to write to our GP to get the information they sought.

In February 2016, the DVLA wrote to [Dr B] to obtain confirmation that [Ann] had not received any further shocks from the ICD.

Again, [Dr B] apparently chose not to respond.

Copies of letters from the DVLA and Wesleyan Assurance confirming [Dr B’s] failure to respond are attached.

Above: The letters from both Wesleyan and the DVLA received by Ann after Dr B chose to ignore requests for information from both organisations.

Both of these examples are annoying but the DVLA example is more serious.  The lack of response to Wesleyan resulted in a delay to payment of benefits under the policy. Not the end of the world.  However, the lack of response to the DVLA may mean that [Ann] is unable to return to driving, even though she has been shock-free for over six months and so should be able to have her license back.  At a time when the ability to collect her own prescriptions, take herself to the GP or visit friends would be a hugely important step back towards some semblance of normality for [Ann], [Dr B] chose to place an obstacle in her way.

Personally, I find that to be totally unforgiveable.

Turning then to your notes of the second meeting with representatives of the ED, I am pleased to say that I think these are a much more fair and accurate record of our discussions.  Indeed, the spirit of the meeting was altogether more constructive.  I thought that [Dr T] and [Nurse S] were, above all, honest and as you can see from what I have already written, I am finding that honesty can be a very rare commodity.  Their multiple admissions of error and multiple apologies were genuinely appreciated.

I have just a few comments:

Minutes of the ‘Being Open’ Discussion on 5th February 2016:

16 August 2015

I just want to place on record once again that [Ann] suffered a cardiac arrest on August 16th following the ill-considered discharge from Hull Royal against our wishes.  I do not question that she was may have been suffering from …low blood pressure – exacerbated no doubt by the hot bath and the mis-prescribed GTN spray (she was not suffering from angina on discharge as a subsequent angiogram demonstrated conclusively) – but [Ann] had no heartbeat and was not breathing.  She did not, as I recall, talk of suffering chest pain as you state but said repeatedly before she collapsed: “My heart is going crazy”.

Following her collapse, there was no heartbeat and no breathing.  [Ann] went into sustained VT and then arrested. Only I know what actually happened that day. Only I was there (if I hadn’t been, she would have died).  Just because it was unusual does not mean it didn’t happen.

[Dr T] agreed that they had failed to listen when [Ann] had been admitted to A&E, and then he went on to do exactly that in the meeting.

19 September 2015

On the one hand, it is rather terrifying that [Ann] received two separate intravenous electrolyte infusions as a result of staff looking at somebody else’s blood results – God knows what harm might have resulted if that other person’s bloods had pointed in a different direction.  On the other hand, I find it refreshing (and more than a little surprising) that the ED staff actually admitted that this was the only plausible explanation for what happened that evening in the ED.

I do accept their many apologies in the spirit they were offered and I earnestly hope that they follow through on their promises to learn from their errors and pass onto the staff the lessons that should come from our deeply unsatisfactory experiences.

However, the fact that the ED staff were open and frank (apart from the bit about the ‘fainting obviously) and your notes are a fair reflection of our meeting does not in any way detract from the catalogue of mistakes made in the ED and the disgraceful way that [Ann] was treated, especially on August 15th.

I remain of the view that the standard of care in the ED falls well short of what patients should be entitled to expect and I doubt that it will improve very much as a result of my complaint and our subsequent meeting.

So, where do we go from here? 

[Nurse Q], I do appreciate your attempts to try and move things forward but the response from Cardiology in particular is not remotely satisfactory. I do not think that my complaint is going to change anything in the cardiology department. I therefore intend to take this to the Ombudsman in the hope that he can be more successful than I have been in helping future patients to avoid an ordeal like the one [Ann] has suffered – and continues to suffer.

With this in mind, it would be helpful if you could tell me when and if I will receive the promised point-by-point response to my complaint.  It has been four months after all and I would have thought that that is more than enough time to put together the various answers to the issues raised.

Thank you again for your efforts.

Kind regards,

You will have guessed that the point-by-point response was never received. So, I requested a ‘Final Decision Letter’ which would allow me to refer the complaint to the Parliamentary and Health Service Ombudsman.

At the end of April or early May, I received a letter signed by the Trust’s Chief Executive, summarising the Trust’s position. However, I ignored it – at least for a while. We had to return to Newcastle. On May 3rd, Ann was to be re-admitted to the Freeman Hospital for her third implant procedure.

Finally, someone was going to try and put right the harm done at Castle Hill.

 

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.

 

Chapter Fourteen – Ombudsman

This chapter is perhaps the most important chapter of the entire tale. In this chapter, I deal with the referral of our complaint to the Parliamentary and Health Service Ombudsman (PHSO) and the emergence of some vital new information.

And yet more incompetence.

We have reached the end of May 2016 in our narrative. A whole year has passed since I drove Ann to the ED for the first time. The complaints procedure with the Trust had been exhausted and had proved to be a complete waste of time. Ann was recovering from her third implant procedure and this time, was improving rapidly. There was hope that she will soon be able to return to work after more than a year of absence.

On 30th May, six months and one day after submitting the complaint to the Hull and East Yorkshire Hospitals NHS Trust and the day after my last email to Nurse Q, I made my referral to the Ombudsman via their online portal. With it went the original complaint, the entire exchange of correspondence with the Trust, the videos, the photographs and the meeting minutes. We received an acknowledgement within 24 hours.

Now we had to wait to see if they would investigate the case. It was not a foregone conclusion.

By June, just a month after the surgery in Newcastle, Ann had improved so much that she was able to resume driving. Alas, we had been forced to sell her beloved Mini Cooper S Cabrio as it was still much too painful for her to be changing gear all the time and the sporty ride was just too bumby for her. She adored her little Mini, which had every available bell and whistle on it. Never before had an optional extras sheet had so many ticks. Saying goodbye to her beloved car was very hard for Ann and much more significant than it might seem. For Ann, it meant that she had to acknowledge that she was not the same person anymore. Her treatment had changed her forever. There were many tears.

However, she now had a smoother ride in a new 4×4 with an automatic gearbox that she could easily cope with. The truth is that she didn’t like it very much but at least she had her freedom back at last and was no longer dependent on friends and family for transport.

A very proud Grandma holds her first grandchild for the first time. But for the third implant procedure in Newcastle, this would have been impossible.

It also had room for a baby seat in the back.

The baby that would need that seat entered the world on June 27th 2016. Naturally, we rushed down to meet him as soon as we heard the wonderful news and, thanks to the revision surgery, Ann was able to fulfil her ambition to hold the little man without pain.

It was a milestone moment. Ann had been through so much. She had cheated death, she had endured so much pain, she had been abandoned and yet she had emerged still smiling and determined not to be beaten. For Ann, carrying her grandson was the proof that she had made it through to the other side, despite everything.

 

 

We received the formal notification that the PHSO would investigate our complaint in July. This followed telephone conversations that centred around reducing the complaints to be investigated to no more than three main issues. The Ombudsman couldn’t take on an investigation that took in the dozens of issues our original complaint had contained. We discussed the options at length but it was fairly obvious which were the most important matters that must be included. The following were agreed as the scope of the investigation:

  1. That Ann received inappropriate treatment in the Emergency Room at Hull Royal Infirmary in August 2015, did not receive a much-needed cardiac admission and was inappropriately discharged leading to a cardiac arrest at home only hours later from which I had to resuscitate her.
  2. That Ann’s treatment at Castle Hill Cardiac unit relating to the first ICD implant procedure in August 2015 failed to prevent the formation of a ‘huge’ haematoma which caused significant suffering and may have led to the subsequent detachment of one of the leads attached to the inside of Ann’s heart.
  3. That the second ‘corrective’ procedure in September 2015 to re-position the faulty lead was carried out inappropriately leaving her in chronic neuropathic pain which was only partly relieved by a third procedure carried out at the Freeman Hospital in Newcastle in May 2016.

We were told that the investigation would probably take around 6 months. In the meantime, the Trust would be informed of the investigation and would be asked to provide relevant records.

It was November 2016 before the investigating officer was appointed. New to the complaint, Ms X called me to discuss the investigation and the three issues were confirmed. She was extremely pleasant and helpful.

On December 12th, Ms X emailed to let me know that the case file had been sent to the Clinical Advice Team and that she would be having a discussion with their Consultant Cardiologist on Friday 16th December. On December 21st, she emailed again to let me know that the draft report had been posted and letting me know that she was now on holiday until January 9th.

The draft report arrived just after Christmas. The contents of a Draft PHSO Report are strictly confidential and I am not at liberty to disclose its contents. However, the Final Report (which is not confidential) would turn out to be identical and so I can quote that identical version.

The Report ‘partly upheld’ our complaint. That is to say, it found in our favour on issues one and two above but not on issue three. Below are some extracts from the report:

On Issue One – ED Treatment prior to Cardiac Arrest:

“We found the Trust failed to appropriately consider [Ann’s] cardiac arrhythmia during her attendance to the ED on 15 August 2015. The Trust failed to connect her to a cardiac monitor and failed to refer her to cardiology. It also inappropriately discharged her when it should have admitted her for closer observation. Had it done so, at the moment of her subsequent cardiac arrest a few hours later, she would have been in a hospital environment. This would have prevented the emotional and traumatic event for both [Matt] and [Ann] when he performed CPR on her at home”

On Issue Two – Failure to prevent the Massive Haematoma post Implant One:

“We found the Trust failed to closely inspect the site of the wound following the ICD implant, despite the increased risk of bleeding due to anti-platelet medication. Closer inspection of the wound would have prevented the haematoma as the Trust would have been able to take action sooner to prevent it from growing. Whilst we cannot say this was the reason for the lead displacement, [Ann] will never know whether or not the second corrective surgery could have been avoided. This has caused her undue distress not knowing whether or not things could have been different”

Recommendations:

“Therefore, we have made the following recommendations to the Trust in recognition of the impact of its failings:”

“Within four weeks of the date of our final report, the Trust should write to [Matt] and [Ann] to acknowledge the failings we have identified, and to apologise for the level of distress caused to them. This should be shared with the PHSO”.

“Within four weeks of the date of our final report, the Trust should also make a payment of £350 to [Matt] in acknowledgement of the traumatic and distressing event of performing CPR on his wife, which could have been avoided.”

“Within four weeks of the date of our final report, the Trust should also make a payment of £500 to [Ann] in acknowledgement of the emotional impact and distress she has suffered as a result of its failings.

“The Trust should, within 12 weeks of the date of our final report, develop an action plan to address the failings we have identified. This should identify reasons for the failings and the learning taken from them. It should explain what the Trust will do differently in future, who is responsible for each action, the timescales in which each action will be completed, and how staff compliance with these improvements will be monitored and audited”.

All of that was very much what we had been hoping for (and expecting it has to be said, given the incontrovertible evidence) and we were absolutely delighted. We had been told that compensation was only ever recommended at ‘token’ levels. £850 wasn’t much of a bite out of losses running into six figures but it was about making change happen, not about money.

However, Ann’s ongoing pain which might last her lifetime was attributable to issue three, the second implant procedure, and here the Draft Report did not reach the expected conclusion.

“Having reviewed the medical records for the second procedure on 24 September 2015, we have seen no evidence to indicate that there were any complications…. The records suggest that the actual procedure itself took less than an hour…  In the light of the above, we are satisfied that the corrective procedure was carried out appropriately”.

That wasn’t right. I had the medical records and there was nothing in there to support the Trust’s claims that the procedure took less than an hour.

So I wrote back expressing our “immense gratitude” for the care taken with the investigation but questioning the finding on issue three. In particular, I asked what evidence they had relied upon to draw the conclusion that the second procedure had taken less than an hour and so must have been without complication.

On January 10th 2017, the day after she returned from holiday, Ms X replied and, as requested, she attached the ‘evidence’ that had led to their decision to support the Trust’s account of the second procedure. I had been working overseas and did not see the letter until January 24th.

It comprised three double-sided pages of notes from the date in question.

One of the pages I had never seen before. It had not been included in the medical notes the Trust had provided to me. It was the page of notes made inside the Cath Lab at the time of the procedure! It was perhaps THE most important page of all Ann’s medical notes – and I hadn’t been given it.

I went through my pile of papers again. It definitely wasn’t there.

Furthermore, the equivalent page from the first procedure wasn’t there either.

The Trust has sent me around 300 pages of medical notes (an estimate based on the height of the stack, I confess that I couldn’t be bothered to count them).  The odds of the most important page being accidentally omitted were therefore around 300:1 against.  The odds of BOTH the most important pages being missing accidentally are 90,000:1 against.

90,000:1. Against.

Pretty unlikely.

It is possible of course but let’s face it, the overwhelming likelihood is that those pages were deliberately withheld. Withheld from us – but not from the Ombudsman apparently.

This is the page I had never seen before. It would prove to be utterly fundamental to our case.

This is how the Ombudsman had interpreted this page (from its letter dated January 10th):

“We have seen notes from the procedure on 24 September 2015 which indicates that [Ann] was taken into the catheter lab at 10.20am. The ICD lead had been respositioned by 11.00am….” Oh no it hadn’t!
As you should be able to see from the page of notes, the ‘TIME IN’ is indeed stated as 10.20. Near the bottom of the page, there are some further notes that begin “11.00”. The Ombudsman’s investigator, and the ‘expert cardiologist’ she was looking at the notes with (I know they did it together because she told me) saw 10.20 and 11.00 and concluded that the entire procedure had taken 40 minutes.

The so-called expert should have known better. So should the investigator. Because that isn’t what the notes said at all.

Let’s take a more careful look at the bottom of that same page:

What is actually says is “11.00 – Pt (patient) anaesthetised.” So, far from ending at 11.00am, the procedure actually BEGAN at 11.00am. The procedure was not completed in 40 minutes, the preparation for the procedure took 40 minutes. Ann was not anaesthetised until 11.00am.

This is hardly surprising when you think about it.

First, Ann’s ICD was switched on but one of the leads wasn’t working, presumed detached.  The first thing they would have to do is verify which lead was malfunctioning. They wouldn’t want to pull the wrong one out. For that, a pacing technician would have to ‘read’ the device, using the Telemetry Wand presumably.  Having established which lead wasn’t receiving any data, the technician would no doubt also check the function of the other lead to establish whether it too should be repositioned. They wouldn’t want to repeat the procedure a second time.

Having completed those checks, the technician would, I assume, deactivate the ICD altogether. They wouldn’t want to run the risk of Ann being defibrillated during the procedure. The anaesthetist would then have a conversation with Ann about the procedure and he would have to check the medications she was taking and when she last took them, ensure she had been nil by mouth and establish whether she had any allergies and so on. The electrophysiologist would (hopefully) study the x-rays to remind himself where the generator was located before opening up the pocket to start the procedure. Ann would also have to be connected to all the monitoring equipment – a 12 lead ECG I imagine (she would have been disconnected for the journey to the Lab) plus a pulse oximeter, blood pressure monitor and  and perhaps others too.

After the procedure was completed but before the wound was closed, the technician would presumably power up the ICD generator and test the leads and telemetry once again to ensure that everything was now as it should be. Only then could the wound be closed. It would no doubt be checked again after closure.

All that, and the operation itself was miraculously completed in just 40 minutes according to the the Ombudsman. (Remember, this was a sub-pectoral implant so more complicated to access than a sub-cutaneous implant so it would have taken longer anyway). The whole thing, beginning to end. Given the preparation required, the operation itself would have had to be done in less than 20 minutes. That is ridiculous and the Ombudsman’s expert should have known that it was.

The Ombudman’s investigator and her expert had screwed up – spectacularly.

But we knew that the procedure didn’t take just 40 minutes.

So how long did it take? The page didn’t tell us that because no-one had filled in the the ‘Time Out’ box.

Fortunately, there was a second page attached to the first. This one I already had a copy of but without the first page, it had been of limited value. Alongside the first page, it was now priceless. That is because it did tell us when the procedure was completed – something the Ombudsman’s investigator and their expert would have known if they had just bothered to turn over the page and consider what they were looking at. Had they done so, the report would probably have read very differently because they would have known that the Trust had not been telling the truth and were concealing something.

Here is the important part of that second page, written by the recovery nurse who had looked so distressed when she brought Ann back to the ward that day:

13.05 50mg of Cyclizine given IV (intravenously) as instructed and 3mg of Morphine sulphate given IV as instructed. 13.25. 3mg of Morphine given IV as instructed. 13.50 3mg of Morphone given IV as instructed. Informed Dr B of patient’s discomfort. Told to return patient to Lab and given more morphine as above.

So, what’s all this about? Let’s look at those drugs.

Cyclizine is an anti-emetic. That is to say, it stops vomiting. In other words, it is used to stop people coming round from an anaesthetic from throwing up all over the operating theatre. To make sure you don’t get covered in vomit, you give it the moment the patient comes round from the anaesthetic – or ideally, before she comes round.

Indeed, the manufacturers’ recommendations for the use of Cyclizine for sickness after surgery state:

“For the prevention of postoperative nausea and vomiting, administer the first dose by slow intravenous injection 20 minutes before the anticipated end of surgery.”

That probably didn’t happen in this case because we know that the drug was administered by the recovery nurse, not the anaesthetist. Instead, it would have been administered as soon as Ann was wheeled into recovery – seconds after the completion of the procedure.

At 13.05.

Two hours and five minutes after the procedure started.

So the procedure had taken more than two hours – not the routine procedure that took less than an hour as the Trust had stated throughout the complaints process.

They had lied. Now we had proof.

And the PHSO had missed it. It had been in front of their face all along.

And the Trust had apparently withheld the evidence.

As we’re looking at the drugs, let’s also look at the Morphine. We have already seen in earlier chapters just how much pain Ann experienced after this procedure and continues to suffer to this day. She would have been screaming in agony as soon as she was conscious. The first dose of Morphine was also administered at 13.05.  The Trust’s account as interpreted by the Ombudsman, is that they miraculously managed to prepare for and complete the procedure in just 40 minutes completing the entire process by 11.00am. This, if it had been true, would have meant that they waited over two hours to give pain relief!  Presumably, according to the Ombudsman’s version, they just left Ann lying there in recovery without medication or intervention of any kind for two hours and five minutes.

Obviously, this is transparent nonsense. Ann was given the first Morphine dose with the Cycilzine as she came round from the anaesthetic – at 13.05.

Indeed, the notes state that Ann was taken back into the Lab, such was the level of concern at her pain. This tallies with Ann’s memory of the recovery nurse saying “Where the f@@k is he?” when she was trying to get Dr B to take some notice of her. Ann’s level of pain on entering the recovery area was not normal. The recovery nurse was extremely concerned, possibly frightened given how she looked when I saw her on the ward shortly afterwards. Ann was given additional pain relief back in the Lab at 13.25 and 13.50 so she was obviously in a bad way. The maximum dose per 4 hours is 10mg and Ann was given 9mg in 45 minutes. This was not routine.

We know that Ann was returned to the ward at 14.20. The notes, now that we had them all, corroborated everything we had said all along.

Finally!

Without any shadow of doubt, the procedure had taken more than two hours. Even the Ombudsman would now be able to see that the Trust had not been telling the truth.

The big question of course was WHY?

Why would Dr B repeatedly state that the procedure was routine and took less than an hour when we knew – and could now prove – it had taken more than twice that time?  Why was the Trust lying about what happened that day? Why on earth didn’t they simply tell the truth and explain what really happened?

Of course, I can only speculate. We know that Dr B didn’t have much experience of sub-pectoral implants (which was why Dr K had done the original procedure). We know Dr B hadn’t looked at the x-rays the previous afternoon but there is no reason to think that he didn’t have them available to him in the Lab. We know from the notes that the upper chest was scanned before they opened the pocket and yet we also know that Dr B still couldn’t find the ICD and had to “dissect and dissect and dissect” (his words) to find it.  We will discover in subsequent chapters that the muscles of Ann’s chest wall were severely and permanently damaged by that dissection.

What else happened we simply do not know.

Nonetheless, I can see no reason why the Trust couldn’t have been honest about all of that and have committed themselves to making Ann as well as they possibly could as fast as they possibly could. No effort should have been spared to mitigate the harm done.

Instead, they couldn’t get her out of the door quick enough – they wanted rid of her. They discharged her too quickly. They even tried to make us believe that the pain had nothing to do with the implant. They told Ann not to return without an appointment (and there were no more appointments) and repeatedly lied about the length and nature of the second procedure.

It doesn’t make any sense at all.

Why?

What really happened in the Lab that day that needed to be concealed?

Sadly, the critical missing piece of medical evidence furnished by the Ombudsman didn’t answer that question.

The letter from the Ombudsman didn’t just send that critical missing piece of medical evidence however. It also enclosed their Final Report on our complaint (which as I have already pointed out was identical to the Draft Report. Not one letter had been changed).

By sending it with the evidence I had questioned, they robbed me of any opportunity to comment on that evidence and so have those comments taken into account in the final report. I simply couldn’t believe it. Not only had the Ombudsman team made a spectacular error, but they had deprived me of the chance to have it corrected.

As I have said, I had just returned from a period of working overseas when I saw the letter two weeks after it had been written. It took only minutes for me to spot the mistake after I opened the letter and so the next morning, I sent a quick email:

Email sent: 08.27 24/01/2017

Dear Ms X,
I have just returned from two weeks working overseas and last night, I read your recent letter and its attachments.
I am afraid that you have made a fundamental mistake in your reading of the medical notes which explains your conclusions about the second procedure (and this is not speculation on my part, but indisputable fact).
I will try to call you when I get to the office as it is extremely important that I explain the error to you and ask what can be done about it.

Sincerely,

I called her as soon as I got to the office to explain the magnitude of that error.

I patiently took her through the evidence, explaining about the timing of the Cyclizine administration and how the missing notes appeared to have been withheld and how they proved what we had said all along.

“Oh my God!”, she said. “I’m not a doctor. I didn’t know what Cyclizine was.”

Nor did I. I looked it up. But Ms X had a ‘medical expert’ sitting beside her. She shouldn’t have needed to look anything up. It was abundantly clear from the conversation that she realised that she and her ‘expert’ had made a dreadful mistake and that she was very upset. The conversation went something like this:

“It’s OK”, I said, “You can revise the report.”

“Actually, I can’t”, she replied. “The Final Report is exactly that. It can’t be changed. I’m really sorry”.

“Then why the hell did you issue it before we had chance to see the evidence on which you had relied? I told you there was nothing in my set of notes that supported the Trust’s version of events. Your report contains statements that are completely untrue!”.

“I’m sorry. I’m really sorry. The only thing you can do now is go though the appeals process”

She went on to tell me how to submit an appeal. I can’t begin to explain how frustrated and angry I felt. Over a year spent trying to get at the truth and see some justice for Ann and even though we had finally found the proof we had been looking for, the record would still state that the second procedure took only forty minutes – all because of sloppy work by the Ombudsman team.

Our appeal was submitted four days later on January 28th.

The Ombudsman didn’t contact me to ask any questions or discuss the matter with me at all.

On March 14th, I received a response from Ms Y, Customer Care Officer via the PHSO’s secure email service.

Here is the relevant part of that response:

We do not automatically look at the whole of the original complaint again. Instead, we look to see if we took account of all the relevant evidence and made a fair decision. To do that, we look at whether we can see indications that:

We made our decision based on information that contained facts that were not accurate and which could change our decision; or
We have new information that was not previously available and which might change our decision; or
We overlooked or misunderstood parts of your complaint or did not take account of relevant information, which could change our decision.

We have carefully considered the information you have given us. Ultimately, I do not believe that this information meets our review criteria as set out above.

Once again, I simply couldn’t believe what I was reading. The appeal met all three criteria, not just one of them for Christ’s sake! I was now beyond angry. I was so furious that I simply couldn’t deal with it. I had to take a few days to calm down.

I waited four days and then sent this reply:

Email sent: 16.25 Saturday March 18th 2017

Dear Ms Y,

I have waited a few days to reply to your recent email because I was simply too angry and incredulous to compose a reply.  Having calmed down somewhat, I will keep my response short.

Your ‘expert’ clinician only drew the conclusion that there were no complications because he thought he saw that the procedure took only 40 minutes. In fact, the records show unequivocally that the procedure took over 2 hours. Had he done his job properly and realised the actual duration, and then he had gone on to study the considerable weight of evidence pointing towards complications, I think there is a very strong likelihood that he would have advised differently.

Contrary to what you assert, I strongly believe that this does indeed constitute grounds to revisit that section of your report.

I appreciate though that because of your intransigence, we have probably reached the end of this particular road. [Ann] will probably suffer the pain and impairment for the rest of her life and those responsible could even go on to inflict the same fate on others. It appears that you would rather bury another mistake – this time, one of your own – rather than bring about an improvement in care.

Furthermore, the trust has withheld information and has made multiple statements in defence of the complaint that have subsequently been shown to be completely untrue.  Thanks to you, they will also get away with that reprehensible conduct as well as their original failings.

I genuinely feel that you should be deeply ashamed of yourselves.

I received an out-of-office notification. Nothing else. Ms Y didn’t even bother to reply.

Our case had been buried.

The Trust had stuck two fingers up at us and now the Ombudsman was going to do nothing about it because in doing so, it could hide its own mistake.

A few days later, Ann received a cheque from the Trust in the sum of £850.00. It was attached to a remittance advice which stated ‘PHSO FINDINGS’. That was it. No letter to accompany it. No apology. No explanation. Just a cheque. Six weeks late.

I wanted to tear it to pieces and send it back and tell them to shove it where the sun doesn’t shine. Ann wouldn’t let me. “Let’s at least get some small thing out of all of this”, she said. “We can have a relaxing weekend away somewhere nice”. Typical Ann. Always finds something positive.

So we banked it.

The apology that should have accompanied the cheque arrived in early April. With it came the Action Plan requested by the Ombudsman. It consisted of a single A4 sheet (there was probably a second sheet judging by the way the text stopped abruptly mid-sentence at the bottom but that was missing).

It was pathetic.

Among the issues to be addressed was “Failure to discuss risk of bleeding with patient at the consent stage” which wasn’t even complained about and a discussion had taken place. The action alongside it was a change in the consent form to ‘get them off the hook’ in future. What I think should have been there was the failure to withdraw the anti-platelet therapy for a period before surgery and in particular, the failure to monitor the wound post-surgery, neither of which appeared in the action plan at all.

There were no reasons for the failings as there should have been. No learning that had been taken from the mistakes. As for the compliance monitoring and audit procedures, there was nothing. It appeared that the Trust was just paying lip service and just-about-complying with the Ombudsman’s recommendations with the absolute minimum level of effort possible. I’m afraid that I doubt that pathetic sheet of paper has ever been seen by a front line clinician.

It seemed the Trust had no intention whatsoever of learning from its mistakes. What a contemptible bunch of idiots.

What a complete waste of time.

I really had reached the end of the road.

Or had I?

Perhaps I had one last throw of the dice.

I managed to get hold of the email address of the Trust’s Chief Executive, Chris Long and I sent him an email on April 17th, requesting a one-to-one, private meeting which included the following paragraphs:

First, I would like to explain to you, as part of a calm, polite conversation, some of what really happens within the organisation you lead – the lack of compassion, the systemic failure or complete absence of communication, the clinical failures and the lack of honesty.

Second, I would like to explore ways in which the Trust might acknowledge its failings appropriately and make rather more meaningful changes to ensure that they are never repeated.

Mr Long didn’t reply until May 22nd. He declined the opportunity to meet and hear our story in private.

Which is why it is now being told publicly.

The end of the road really had been reached.

And with that, our story is very nearly at an end. There are more chapters to come, but they will deal mainly with the continuing consequences of what happened that day in September 2015 and updates on Ann’s condition and the ongoing efforts to mitigate her suffering. I think readers who have made it this far deserve to know how Ann is doing now.

I also intend to offer some reflections on our journey including some musings on the NHS of today, its questionable approach to patient safety and how the treatment of conditions has supplanted the treatment of patients at the expense of compassion. I may even offer an opinion or two as to why the vast majority of hospital consultants seem to be arrogant pricks with empathy bypasses and why Health Trusts appear to have forgotten why they exist at all.

Now that bit might be a tad more cathartic.

Update – February 2018

Following the online publication of this chapter at the end of October 2017, I received an unsolicited and unexpected call from the PHSO.

The young lady who called gave what appeared to be a heartfelt apology for the way we had been treated and the fact that we hadn’t even had a reply to that last email I had sent to them. In the light of the events described in this chapter, she explained, the PHSO would be looking again at the third part of our complaint (relating to the second implant procedure) and would re-visit their earlier decision to refuse to review their report. It was therefore possible that the second procedure would be re-investigated, she said.

My caller was extremely pleasant and I was obviously very encouraged but, as ever, things moved at glacial speed. It was January 2018 before an investigator picked up the file. The new investigator lacked the empathy displayed by her colleague. She told me she had read the story but I’m afraid I wasn’t convinced. She didn’t appear to know enough about our case. So, I sent her the full text of this chapter by email. She explained that she would now have to discuss this with her superior (so she probably hadn’t read the story at all) and I was told to expect a decision in a week.

It took about three weeks. She called me and said, just as her predecessor had, that this “did not meet our review criteria”.

I just couldn’t believe it. We had proved that the Trust had lied throughout the complaints procedure and the Ombudsman didn’t give a damn. Ann would face a life of pain due to the events that day and the Ombudsman simply didn’t care. What was the point of the PHSO?

I asked her whether I would be receiving a letter confirming their decision.

No“, she said. “You’ve already got one letter saying we won’t review.

Just unbelievable.

So, to understand just how ridiculous this decision was, I think it is worth taking another final look at those review criteria. The PHSO claims that it will review a decision if an appeal meets one their three criteria.

They are:

  1. We made our decision based on information that contained facts that were not accurate and which could change our decision; or

The Trust had lied about the duration of the procedure and the PHSO had relied upon these untrue statements. So, their decision was indeed based upon information that was not accurate. Furthermore, the PHSO confirmed in writing that its decision that the procedure was carried out appropriately was based substantially on that incorrect duration and so it was possible, even probable, that their decision would change if it no longer relied upon those untrue statements.

So review criterion 1 had certainly been met.

2. We have new information that was not previously available and which might change our decision; or

The proof that the procedure took more than two hours was new information. It was not previously available to the PHSO investigator because the expert had mis-read the medical notes. The proof that the Trust had lied was also new information (for the investigator, if not for us).

Review criterion 2 had therefore also been met.

3. We overlooked or misunderstood parts of your complaint or did not take account of relevant information, which could change our decision.

Without any doubt whatsoever, the PHSO (and its medical expert) overlooked the most important part of the medical notes and so misunderstood what they recorded in terms of the duration of the procedure. That mistake was fundamental to their decision.

And finally, review criterion 3 had also been met.

So, our appeal didn’t just meet one of the criteria (which is all that should have been necessary).

It met all three.

Why then did the PHSO refuse to re-investigate yet again?

The only reasonable explanation is that it did so to protect itself, and the medical expert who made such a comprehensive mess of his part in the original investigation – or possibly even the clinicians involved in Ann’s treatment.

In other words, it did so dishonestly.

The inescapable conclusion is that the Parliamentary and Health Service Ombudsman is simply not fit for purpose. It does not do what it purports to do. Some would say that it is corrupt. I suspect that is true.

Please follow me on Twitter (@ArrhythmiaStory) and read the online conversations to see just how many families have been affected by these issues. Some of these victims have lost loved ones and believe that the PHSO failed them utterly. Some have spent years on end trying to obtain a resolution.

You can also see other online sites which hold the PHSO to account by clicking the links below.

PHSO the FACTS

PHSO The True Story