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?
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”
[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…”
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.
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.
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.
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.