Chapter Four – Cardiac Arrest

This is where the tale starts to get really serious.

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

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

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

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

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

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

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

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

The following passage comes from the British Heart Foundation website:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Either way, the monitor stayed dormant right beside us.

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

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

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

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

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

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

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

God give me strength!

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

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

 

Five hours later, Ann had a cardiac arrest.

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

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

Then she died.

Literally.

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

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

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

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

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

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

She had gone.

Oh my God! Oh my God!!

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

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

Oh shit shit shit! Decision! Decision!

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

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

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

So I did what she had taught me.

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

“I have to call 999!”

She looked at me. Blinked again.

“I have to call 999”

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

“Oh fuck, I actually did it!”

“What?”

“I have to call 999!”

“NO!”

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

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

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

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

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

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

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

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

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

They should give lessons to doctors.

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

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

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

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

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

When I got home, I was exhausted. Numb.

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

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

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

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

But it wasn’t at an end.

No.

Ann’s ordeal had barely started.

Go straight to Chapter Five

Chapter 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