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.
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.
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,
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.
“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
[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.
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.
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 DOUBTabout 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.
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.
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.
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.
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.
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.
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:
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.
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.
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”
“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.
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):
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:
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.
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.
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.
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.
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.”
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.
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.
Many people who have been kind enough to read the story have asked through the Facebook page and Twitter how Ann is today, after all that she went through. So, this chapter is for you. Here, I provide an update on Ann’s progress since the third implant procedure in Newcastle.
We have already heard about the remarkable improvement that followed the re-positioning of the ICD in Newcastle and how Ann was able to take her first hike in the country when we visited Cornwall in June 2016 and could hold our newborn grandson following his birth later the same month. Before we resume that narrative however, I would like to indulge in a brief detour on a different subject – me.
AS we enter the summer of 2016, with Ann was more stable and beginning to resume a more normal life, I made the overdue admission to myself that I too had been severely damaged by the events of the previous fourteen months. Caring for Ann through the worst of the effects of her treatment and fighting on her behalf for an appropriate response from the Trust had taken its toll. The resuscitation from the cardiac arrest was never far from my mind. Waking up every hour through the night and immediately checking that she was still breathing lasted for months on end before I was able finally to relax a little and sleep reasonably well.
For over a year, I had tried – and mostly failed – to balance my work with the demands of being there for Ann. At work, income from my clients had effectively dried up altogether and I struggled to keep live projects moving forward. I had not been there when my team needed my direction and the consequences were now showing themselves. The business had lost perhaps £300,000 in new project income as a result of my prolonged absences and the remaining work was not running smoothly. My colleagues were wonderful and completely understanding but knowing that my absences had damaged the business was a further source of enormous worry and stress for me.
Worst still was a feeling that in many respects, I had ceased to exist. That is to say, I spent my every waking hour being either Ann’s carer, or an ineffectual boss, or a part-time parent and son but there had been no time left at all just to be myself. The demands on my time were so unrelenting that I never did anything that wasn’t for someone else. I felt as if the private me, the me that existed inside my head, had simply been extinguished.
I came to resent it. And resenting it felt self-indulgent and so I felt guilt on top of the resentment. And anger. I still couldn’t shake the livid anger I felt towards the Trust and the medical staff who had harmed Ann and then simply walked away from her.
Resentment, guilt and anger was a toxic combination. I was falling apart.
So in July 2016, I decided to seek professional help – something I had never done before for a non-physical condition. I began weekly counselling sessions which I arranged privately rather than through our GP.
I learned that I was displaying all the signs of Post Traumatic Stress Disorder (PTSD), the same condition that is so often suffered by soldiers after combat tours. I certainly felt like I had been through a war. Bringing Ann back from the cardiac arrest was identified as the most traumatic single event but it was the complete absence of any activity for myself which was identified as the main cause of my ongoing difficulties. I had been so focused on Ann and her health for so long that I had neglected myself entirely.
Talking about what had happened with someone who had not been involved made an enormous difference. I was able to vent my frustration with full full force and without fear of judgement. There had even been times when I wanted to be critical of Ann but I couldn’t countenance doing so when she was so unwell but now I could express those feelings for the first time and nobody was going to get upset. In only a couple of sessions, I tipped an entire truckload of mental detritus onto the counselling room floor.
And God, it felt good.
I was advised to fight for personal space at all costs, even if that was at Ann’s expense occasionally. I had to refuse as many requests for help as possible and create time which was mine and mine alone. So, I took myself (and my old two-seater sports car which hadn’t been driven even once since Ann had been taken ill) off to the Yorkshire Dales for a few days of hill climbing and solitude. It was the first time I had left Ann behind apart from when work had required me to do so. I pushed myself hard and walked further and higher than I had planned. Being utterly alone up on the moors with only the silence for company was beyond wonderful. It gave me the chance to think at last, to look for the positives amongst all the negatives and look at what had happened to us from a new perspective.
I resolved to do everything I could to ensure that others didn’t have to follow Ann’s journey. I would not allow the Trust to walk away and not learn from its mistakes. But I would not do so at the expense of my own peace of mind. I would allow myself to be selfish occasionally and ensure that I created a bit of ‘me time’ every so often.
I returned refreshed and restored. The trip, and the other counselling sessions that followed, brought me back to myself. I became more effective at work, less prone to outbursts of anger and generally more at ease. It also taught me a profound respect for other carers. My time caring for Ann was relatively short. Others end up caring full time for relatives, some of whom have lost their mental faculties, for years on end and most do not have the opportunity for country breaks or counselling. Oh, how I understand their burden now. It must often be unbearable.
Thank you for allowing me that little excursion. Now, back to Ann:
July 2016 was also the time for Ann’s first recall to the Freeman Hospital following the corrective surgery in May where she saw one of Dr S’s senior registrars. She was able to tell him that whilst there was still residual pain, the intensity had reduced significantly. As a result, Ann had been able to reduce the dose of Pregablin gradually since the operation and was now at roughly half the original dose. That meant that the cognitive side effects had diminished too and her memory and ability to concentrate had improved.
She underwent the usual tests and nothing of major concern was found. For cardiologists reading this, Ann’s ECG confirmed that Ann was receiving atrial pacing at 65BPM from the ICD but had first degree AV block and longstanding right bundle branch block (RBBB – which we had known about for some time). Neither was a worry. ICD interrogation revealed no significant arrhythmias. She was very stable.
However, she had developed a persistent cough and she believed that this was caused by acid reflux (dyspepsia) and she discussed this with the doctor. Ann was prescribed Lansoprazole and was advised that if the symptoms didn’t improve, she would need see her GP to arrange an endoscopy referral.
The following week, at the end of July 2016, Ann finally returned to work after a fourteen month absence. Her fellow dentists had covered her patients for the entire period. They had been kind, understanding and supportive throughout and we owe them a huge debt. Ann started working just two days a week but soon increased to her usual three days. That meant working two days consecutively (her surgery days were Tuesday, Thursday and Friday, one of the other dentists used the same surgery on Mondays and Wednesdays) and it soon became clear that she couldn’t cope. She needed at least a day to recover from a day with patients or the chronic pain at the implant site quickly returned. It was soon agreed that from now on, Ann would only work two days. So, as well as the loss of income caused by her prolonged absence, she would also have the ongoing loss of income caused by the reduced working week. Nonetheless, that wasn’t really important. She was back at work at last.
She had survived and returned. I can’t begin to tell you what a relief that was for both of us.
In September 2016, we took a week’s holiday in Cyprus, where we did almost nothing at all! We enjoyed evening walks along the waterfront and charcoal-grilled fresh seafood at restaurants overlooking the sea but otherwise, we just lay in the sun with our nose in a book and recharged our batteries.
The cough and the acid reflux were still there though and the Lansoprazole had done little to relieve it. The pain caused by the reflux is also similar to cardiac chest pain so it was important to establish a cause and, if possible, eliminate it. So in October, Ann had the endoscopy.
It was discovered that Ann’s Lower Oesophageal Sphincter (the circular muscle that closes the top of the stomach and prevents acid from rising up the oesophagus) was completely lax. That is to say that is wasn’t closing at all. She was told that this had most likely been caused by her medication – with the Sotolol as the most likely candidate. As that is the drug that controls Ann’s arrhythmia so successfully, there was no possibility of changing it (and the damage had already been done in any event so it would be unlikely to recover even if the drug was withdrawn, we were told).
Ann was told to keep taking the Lansoprazole and see how things developed.
In the meantime, by degrees, the chronic pain at the implant site began to return. As Autumn turned to Winter, Ann started to take more paracetamol to control breakthrough pain and at other times, she would increase the dose of Pregablin. The pain made working much more tiring and she would collapse on the sofa when she got home, exhausted once more. It seemed like her recovery had stopped and we were going backwards again. It wasn’t long before Ann could be found quietly crying to herself in the evenings, her usual smile failing her.
Ann saw the pain specialist Dr Q again and together, they decided that it would be worth giving acupuncture a try. I had had acupuncture for severe pain from a trapped radial nerve and the results had been astonishingly good so we knew it could be effective, even if we didn’t understand how or why. She had her first session in mid-November with the pain team at the Beverley Community Hospital and emerged from it with extreme discomfort. It has to get worse to get better, we assumed. In all, she had four acupuncture sessions but it became increasingly clear that far from calming the nerve paths and reducing the pain, it was exciting them and making the pain much worse.
After the fourth session in mid-December, Ann collapsed at home whilst standing at the kitchen sink. Fortunately, our daughter was stood right behind her and caught her before her head hit the stone floor. A sudden massive spike of pain had knocked her out cold. The acupuncture had made things much much worse. The clock had been wound back an entire year.
The Beverley pain team then passed Ann to a physiotherapy team at Hull Royal Infirmary. They, Ann was told, had experience of complex chronic pain cases and may be able to help. It would be March 2017 though before Ann was seen.
We spent Christmas in Staffordshire with a large group of extended family. Ann wasn’t even able to carry a plate from the kitchen to the dining room such was the level of chronic pain. She could no longer pick up our Grandson and maintaining the Christmas cheer was a real struggle.
In the New Year, Ann arranged to see Dr S at the Freeman again to seek his advice. She travelled up to see him on January 13th 2017. I was away at a conference in Panama City and Ann was far too uncomfortable to drive to Newcastle so our daughter did the driving through the snow. (It was whilst I was away on this trip that the Ombudsman’s final report had landed as discussed in Chapter Fourteen).
Dr S said that he thought the solution most likely to eliminate the pain was the removal of the ICD altogether. Even then, the pain from the damaged pectoral muscles might continue to some extent, but at least it could be subjected to intense physiotherapy which could not take place whilst the ICD was in the way. For ICD removal to be possible, the underlying arrhythmia had to be eliminated – altogether – and that meant ablation of the aberrant signals.
To understand what is involved, we should probably take a slightly more detailed look at the specifics of Ann’s arrhythmia. As we know, she suffered from ventricular tachycardia. She had aberrant signals that originated in the ventricles somewhere which caused additional or fast heartbeats. In lay terms, those signals appeared to be coming from the wall of the left ventricle very close to the bottom of Ann’s heart. (For the cardiologists, Ann was suffering from ventricular tachycardia with right bundle block morphology and right axis deviation with a likely left anterior fascicular origin).
At Castle Hill, Ann had been told that the chances of successful ablation were as low as 10% and as high as 60% (by the same electrophysiologist). They had also told us that this origin for the aberrant signal was extremely difficult to access and that there was a substantial risk of damage to the AV node. If the AV node was damaged, no signals at all would reach the ventricles from the atria and so Ann would need a pacemaker to make her heart beat for the rest of her life. With no AV node, if the battery fails, so do you. At least with the ICD, and an intact AV node, you don’t die when the battery does.
So, Ann’s decision about whether to attempt the ablation was not an easy one.
The Freeman team was much more optimistic than the Castle Hill team however (probably because they were much more experienced and capable). Dr S was confident that he could burn out the bad signal successfully and he thought that it was certainly worth a try. Given the level of pain that Ann was experiencing once again, she decided to go for the ablation attempt in the hope that she could be free from pain entirely. It was worth the risk, she decided, if a normal life could be restored to her.
She was told that the waiting list was around six months.
So be it.
Days later, Ann took an emergency ‘sit and wait’ appointment at the local GP as her pain in the damaged muscles of her chest had become unbearable. The Pregablin was increased back to its original high level and Ann began to spend more time on the sofa and less ‘out and about’. She had three weeks off work in the hope that the inactivity would allow the pain to receded – and to some extent, it did.
You will recall the photographs below – one taken after the second procedure and one after the third. In the right hand shot, the ICD is lying flush with the skin despite being in front of the pectoral muscles. Since then, it has sunken into Ann’s chest a little further. It appears that the muscles so mutilated in the second procedure had atrophied and that process is continuing. If the ICD was removed, there would probably be a large depression in Ann’s chest where the healthy musculature used to be. It seemed to us that as the ICD settled further into Ann’s chest, it began to irritate the nerves in the area once again, causing the renewed pain. We have been given no alternative explanation.
February 2017 saw Ann back with the gastro-enterologists because the reflux was still a major issue. She had a very unpleasant catheter inserted into her stomach with the other end emerging from her nose and attached to a recording device. This she had to endure for 24 hours. There were actually two processes involved called Oesophageal Manometry and Gastro-oesophageal Reflux Monitoring. The manometry is carried out immediately after the tube is inserted and measures the effectiveness of the swallowing mechanism and the muscular action in the oesophagus. The tube is then left in place and the reflux monitoring process takes 24 hours during which the catheter measures acidity through the length of the oesophagus to see how much acid is escaping from the stomach.
The results were not encouraging. The medics recommended surgery to tighten the oesophageal sphincter (Fundoplication I believe it is called) which would be carried out laparoscopically (i.e. through several small incisions using a laparoscope). The procedure is irreversible and Ann was told that one of the side effects would be that she would never again be able to belch/burp – which presumably meant that any trapped air would have to leave by the only other available route!
Be that as it may, Ann was not about to let them put her under the knife again unless it was absolutely unavoidable. Both her surgical procedures at the Trust had gone wrong and she didn’t believe in third time lucky. She elected to try to continue to manage the reflux with medication. In due course, she took the Lansoprazole less and less and relied instead on regular sachets of Gaviscon and so far, that has been effective. Eventually, she may have to opt for surgery. For now, she is managing without.
Ann began her visits to the physiotherapy department in Hull in March. The first few visits were substantially a waste of time. The therapists had no idea what to do because of the presence of the ICD in the area they were supposed to treat, and so they barely touched her.
In June 2017, Ann received a letter from the Freeman Hospital in Newcastle informing her that the ablation procedure would be carried out on July 31st.
Also in June, Ann saw a new physiotherapist for the first time. This lady was a specialist in chronic pain cases, albeit mostly rheumatoid arthritis patients, but she took an immediate keen interest in Ann’s problems and expressed a determination to make her more comfortable. Unlike her colleagues, she was not put off by the ICD.
After examining Ann very thoroughly, she told her that there was substantial damage to the pectoral musculature as a result of the surgery but very probably also as a result of the haematoma which would have caused the tissues to become ‘sticky’ and fuse together where they should not. She explained that the muscles were now badly puckered and atrophied (wasted) and as a result, they were no longer able to support the weight of Ann’s left arm and breast. Furthermore, because Ann was unconsciously protecting the damaged area, she was only breathing at about 25% efficiency – which went some way to explain why she was always so tired and completely unable to exercise. It was the first time a medically qualified person had told Ann in simple terms the true extent of the damage caused by the Castle Hill electrophysiologists.
The physiotherapist believed that she would be able to treat the affected area but not until it had been rested for some time. So, she recommended that Ann wear an ‘orthotic’ garment – effectively a special corset that would disable the damaged muscles and do their job for them. It would not be a very glamorous garment, but if it enabled the physiotherapist to bring about some improvement, Ann was happy to give it a try.
At around the same time, Ann and our GP decided to abandon the the Pregablin which, like the Gabapentin before it, had ultimately failed to control the pain and instead caused the debilitating cognitive side effects, damaging Ann’s memory and her ability to concentrate. So, during June and early July, Ann very slowly reduced the dose of the highly addictive Pregablin and equally slowly introduced the new drug – Duloxetine, the third candidate on Dr Q’s experimental list of chronic pain drugs.
The results were remarkable. By mid-July, Ann’s pain had mostly disappeared. The cognitive side effects disappeared with it. She was sharp, full of vigour and the smile was back. It seemed that finally, a solution had been found and a relatively normal life was within Ann’s grasp. Within a few days, Ann took the decision to postpone the ablation attempt in Newcastle to give her the chance to assess whether a pain-free life with the ICD was possible. She wrote to Dr S and asked him to release the theatre slot to a more urgent case and requested a review appointment for November.
In the meantime, Ann had the fitting of her sexy new corset (which she had to wear for a fixed number of hours each week) and the first series of injections into her spine. These were to treat a degeneration of the discs in Ann’s upper spine – a condition completely unrelated to her cardiac issues and a widespread consequence of bending over a dental chair for more than thirty years (and a leading cause of suicide amongst dentists we were told). The treatment involves inserting an 8″ needle through the side of the neck and diagonally through the neck into the front of the cervical vertebrae and then injecting steroids. They told Ann that she was the calmest patient they had ever seen. She told them that after all she had been through, an 8″ needle through the neck was a walk in the park.
Then a couple of weeks later, just as everything seemed to be going really well, everything went to hell again.
On Wednesday 19th July, Ann went into ‘Hypertensive Crisis’ – her blood pressure suddenly shot up so high that blood pressure monitors couldn’t even measure it (in this case, a systolic pressure of over 220 and diastolic over 110). She was dizzy, sweating and vomiting. In hypertensive crisis, there is a very real risk of organ damage, stroke, cerebral haemorrhage and even rupture of the aorta or heart failure. This was extremely scary and even more worrying because the medications Ann was taking should have driven her blood pressure lower, not higher.
The only explanation that the doctors could offer was that this was a rare side effect of the Duloxetine! We had finally found a drug that made her well and it was trying to kill her.
Ann was told to reduce the dose immediately to half the prescribed level and the pain returned just as quickly, albeit less severely. Because she was still taking some Duloxetine, Ann was also prescribed blood pressure medication – one of the potential side effects of which is…
You really couldn’t make this stuff up.
And it knocked her sideways. Ann slept no less than 20 hours in every 24 after the blood pressure meds. She didn’t eat at all. She managed four days like this. So the doctors told her to reduce the blood pressure meds by half too but in the end, Ann just threw them in the bin. She simply couldn’t tolerate them on top of all the other medication and she refused alternatives.
In due course, she was allowed to take the full dose of Duloxetine occasionally when the pain was at its worst and Ann was careful to monitor her blood pressure when she took the higher dose. Strangely, her blood pressure was actually lower at these times, suggesting to us that the Duloxetine wasn’t the cause of the hypertension at all. However, no-one could come up with an alternative explanation.
In September, in an attempt to figure out what was going on, Ann was fitted with a mobile blood pressure monitor for 12 hours. The average BP measured was 147/83 which wasn’t as bad as it might have been and so the doctors relented and, because Ann was sensible and medically trained, they allowed her to continue without the BP meds in the knowledge that she would ask for some if required.
It took a while to get the balance right, but in due course, Ann learned to cope with some remaining pain and kept a careful eye on her blood pressure.
In October, Ann celebrated her sixtieth birthday. I took her to Portugal for a few days and we stayed in an amazing hotel on the coast north of Lisbon for four days, walking in the sand dunes, enjoying massages in the spa and generally relaxing. She looked amazing. Relaxed, well, radiant. You couldn’t possibly imagine that she was sixty and had been to hell and back with her health.
Then on the flight home, she went into hypertensive crisis again. Out of the blue. As before, it began with a severe headache, then feelings of nausea, then, just after we landed, the vomiting. The drive home from the airport was a scary one. We couldn’t decide whether to pull over and call an ambulance or just get home as fast as possible and check that BP. In the end, we continued home where the catastrophically high blood pressure was confirmed.
There was no discernible cause. No change in medication. No stress. No arrhythmia. Nothing. It just happened. We, and the doctors, have no idea why. Gradually, over the next few days, her BP fell to more normal levels once again.
There was another crisis in November, this time after another series of spinal injections so it is possible that the steroids were a factor in this case. She also developed flu in November after her compulsory annual flu vaccine and exposure to a very snotty grandson and so the review in Newcastle with Dr S was postponed until the New Year. Ann will see Dr S again in February 2018.
Recently, Ann came up with the idea that it might be wise for her to take magnesium supplements. Magnesium is essential in the maintenance of correct potassium levels which in turn is essential to prevent arrhythmia. Low magnesium is a known factor in migraine headaches and can cause muscle cramps. It can also cause high blood pressure! Magnesium is also said to have ‘analgesic-sparing’ effects. In other words, it makes painkillers more effective. It is also said to reduce the levels of a pain-carrying neurotransmitter chemical in the brain (NMDA) so it could potentially even reduce pain perception.
What’s more, the Sotolol Ann is taking is known to deplete magnesium, and many antacids (which Ann has used to combat the acid reflux issues) do the same thing so Ann’s serum magnesium could easily be low.
So she discussed her idea with Dr Q in December and he thought that it was an absolutely brilliant suggestion. He agreed that it could help with the pain, making the medication more effective and that it might also help with the erratic blood pressure. It certainly wouldn’t do any harm to Ann’s cardiac heath either. Ann started the supplements this week and has promised to keep Dr Q informed. I will update this chapter when we know more but so far, it looks promising.
As things stand today then, Ann is mostly well. As far as her arrhythmia is concerned, she is barely aware of it. She gets the occasional bursts of ectopy but these are short-lived. She hasn’t even had any anti-tachy pacing for many months so the Sotolol is doing its job and the ICD does little other than the usual atrial pacing. But it’s there if she needs it and that is a comfort.
Our friends and family believe that she is much more well than she actually is. That is because she always has a smile for them and because she looks so radiant. They do not see the crises or the evenings when the pain creeps up out of nowhere to reclaim her. But even that is somewhat less frequent these days.
I do not think that Ann will have the ablation – at least not until the battery in her ICD runs out and a decision must be made about whether to do a ‘box change’ or try the ablation so it can be removed altogether. That is probably around 5 years away. The truth is that she has grown comfortable with the companion in her chest that will not let her die.
She has got past the resentment she initially felt at falling ill despite having a near-perfect lifestyle and is now at ease with her underlying condition. She is not at ease with the consequences of her treatment however. As you have seen in this chapter alone, those consequences still have profound repercussions even today.
Life continues to be a roller-coaster ride.
The people responsible have learned nothing from Ann’s experience and could so easily inflict a similar fate on others. That is so very wrong.
Time and again, as Ann suffered from setback after setback, it was suggested to us by the medical teams that Ann’s journey was just a series of episodes of plain bad luck. There were, we were told, no errors or failures. Just happenstance. I never believed that. Nobody, it seemed to me, could possibly be that unlucky.
Or could they?
Could the medical professionals be right and everything that happened be within the boundaries of ordinary misfortune? One day, with nothing better to do, I decided to delve a bit deeper and investigate just how unlikely Ann’s story was. Please walk with me on my stroll through the statistics. It is remarkably enlightening.
Prevalence is a term used widely in medicine and it tells us how many cases of a condition, disease or complication exist within a given population. So there might be, say, 10 cases of a particular condition in every thousand people. Prevalence converts easily into odds. So, in this example, 10 cases/1000 equates to odds of 100:1 of having that condition. Incidence is very similar but not quite the same. It refers to the number of new cases over a given period of time. So it provides odds of developing the condition in a given period. I cheated a little and used both prevalence and incidence in my little experiment but I wasn’t writing an academic paper, I was amusing myself. What I found is that there is data out there which tells us roughly how likely or unlikely all these events were so I didn’t have to make it up. (the sources I actually used are in the footnotes).
Now my maths skills are pretty basic so a statistician would probably be able to drive a coach and horses through the exercise I carried out but that really doesn’t matter. Hopefully, even though my amateur analysis is deeply flawed, the result still tells us something.
So, engaging what I call my tenacious streak (and Ann calls my obsessive personality), I started digging.
To begin her journey, Ann was taken ill with cardiac arrhythmia. I couldn’t find figures for the UK but in the USA (which should be broadly similar) the overall prevalence of cardiac arrhythmias is 53 cases per thousand people ((US National Centre for Health Statistics, National Health Interview Survey on Disability)) (or a surprising 1 in 18 – rather more common than I had guessed). Most of these are cases of AF which affects over 2 million Americans. In Ann’s case, she had a fast arrhythmia or tachycardia. Now the incidence falls to 16 per thousand (or 1 in 62).
There are up to ten types of tachycardia if you include the most obscure but most sources agree that there are four main types (supraventricular, sinus, ventricular and postural orthostatic) so we’ll ignore the others. Ann had VT (one of the main four) so we’ll approximate that the incidence has fallen again by a factor of four from 16 per thousand to to 4 per thousand (or 1 in 250).
So the approximate odds of Ann needing to go to the ED with ventricular tachycardia at any time in her life were about 250:1 against. That didn’t sound unreasonable. I was off and running.
Then the medics discovered (somewhat belatedly) a blocked coronary artery. Ann was one of 132,863 women who were admitted for in-patient treatment for coronary heart disease (CHD) in England in the year 2015/16. ((British Heart Foundation – Cardiovascular Disease Statistics 2017))
The population of England in 2015 was 54,786,300. ((Office for National Statistics – mid-year population estimate 2015)). We’ll assume half were women – so, 27,393,150.
So the incidence of female coronary heart disease admissions in 2015/16 was 132,863 out of 27,393,150 or roughly 4.8 admissions per thousand. The odds of Ann being one of them were therefore 208:1 – against.
To calculate the probability or odds of having both, you multiply the two together. So, the odds of having ventricular tachycardia (VT) and then being admitted for treatment of coronary heart disease (CHD) in the same year are 52,083:1 (against).
So, around 50,000:1. That means that in a UK population of roughly 65 million people, around 1300 people might have had a similar experience. That too sounded plausible. Pretty long odds but well within the bounds of bad luck.
Of course, no-one is suggesting that the Trust had anything to do with Ann developing these conditions. The same isn’t true from this point forward.
Next, Ann had an avoidable out-of-hospital cardiac arrest. I decided to ignore the odds of that happening within hours of an inappropriate discharge from an ED. Keep it simple, I decided. So, there are around 30,000 out-of-hospital cardiac arrests in the UK each year ((British Medical Journal: Vol.5 Issue 10: The UK Out of Hospital Cardiac Arrest Outcome (OHCAO) project)) among a population in 2015 of 65.13 million. ((Office for National Statistics – mid-year population estimate 2015))
So the odds of the out-of-hospital cardiac arrest were 2,171:1 against.
Our odds (VT plus CHD plus cardiac arrest) are up to 113 million:1 – against. There aren’t enough people in the UK to generate one such case.
But we aren’t even half way.
Then, Ann suffered the massive haematoma following the first implant. Sources related to ICD implantation are harder to find but one academic paper found that the incidence of pocket haematoma (less serious and more common than what happened to Ann but all I could find) is around 1.2% of all ICD implants ((British Medical Journal: A systematic review of ICD complications in randomised controlled trials versus registries: is our ‘real-world’ data an underestimation?)) – or 83:1 against.
So, VT, then a CHD admission, an out-of-hospital cardiac arrest then a post-implant haematoma gives us odds of 9.385 billion:1 against.
Then there was an ICD lead displacement. That is rather more common at 3.1% ((Also from British Medical Journal: A systematic review of ICD complications in randomised controlled trials versus registries)) – or odds of 32:1 against.
So, now the odds of all 5 events has reached 300 billion:1 against.
That’s LESS likely than winning the National Lottery Jackpot twice in the same year. ((The chance of a jackpot win (since the extra balls were added) is 45 million to one against. There are 104 draws per year so the odds over a year are 1 in 432,000. Two wins in a year is that number squared which is 186 Billion to one. Almost twice as likely as what happened to Ann – so far!))
But we still haven’t quite finished.
Next we have the chronic post-operative neuropathic pain. I didn’t need to find a source for this as the specialist pain consultant Dr Q had told us that the incidence was 2% – or 50:1.
Now the odds of Ann’s journey are a staggering…
Or fifteen trillion to one against.
If I had continued and considered the odds of other issues such as the critical pages being missing from the medical notes, the numbers would get so big that I wouldn’t even know what they are called and my calculator would probably explode anyway.
So, I’ll stick at fifteen trillion to one.
According to those odds, you would need over 2,000 planet earths, each one with a full population of 7.3 billion people, to find just ONE person that unlucky.
But the NHS Trust asks us to believe that Ann was that person.
No, it wasn’t bad luck. There was another factor at play.
This chapter is for you. It is an open letter to the doctors who treated Ann and to all other doctors everywhere. It is mainly intended for hospital consultants and registrars but all clinicians probably should read it because the criticisms I level at your profession here apply to some extent in the general practice arena and elsewhere too.
That said, I believe that our GP has been nothing short of outstanding throughout recent years. Her support and understanding has been exemplary. That is not to say that her partners have always achieved the same standards – they haven’t – but our GP has been a tower of strength. Thank you.
I also want to praise and thank the nursing staff. With one or two notable exceptions who would be better suited to a career in the demolition business, the very many nurses who looked after Ann were kind, compassionate and, most importantly, focussed on the person, not the condition. We remain forever in your debt. The same goes for the paramedics. Without exception, the ambulance crews were professional, knowledgeable, decisive and yet both calm and just a little bit funny. Oh how I wish you could train the doctors. They have so much to learn from you.
And so to doctors.
To understand the genuine passion behind the criticism I offer, you really need to read the full story. Without it, my words may sound bitter and gratuitous. They are intended to be neither.
If this is your entry point to the story, please go back and read the whole tale – before or after you’ve read this chapter, it doesn’t matter – but read it please. Experience the pain, the distress and the frustration that was caused by your medical colleagues and then perhaps you will not judge me so harshly.
With all that said, I would like to share my experience of hospital doctors over the last two and a half years.
Two Ears, One Mouth
The one quality most lacking in all our encounters with hospital doctors was the ability or willingness to listen. Or to be more accurate, the ability to actually hear when apparently listening.
When Ann wrote her statement to the first resolution meeting with the Trust in February 2016, she spoke of feeling like she had spent the previous year in a glass box, shouting but unheard. Time and again, she tried to give the doctors vital and highly relevant information and she was ignored. That feeling ran through this entire story and remains the case today.
Ann’s story has been told online because the Trust declined the opportunity to hear it privately. I have informed the Trust of the presence of this online version. I have informed the Chief Executive, the Chief Nurse and a non-executive board member. Not one of them has replied.
Ann’s voice is still unheard.
The greatest impediment to listening in the clinical setting is, we assume, lack of time. Doctors are working in a pressured environment after all, particularly so in the under-resourced NHS of today. There aren’t enough doctors and so they are seeing too many patients and cannot devote enough time and attention to each.
But is that true?
Victor Montori, a Professor of Medicine and a doctor at the Mayo Clinic in his excellent book ‘Why We Revolt – a Patient Revolution for Careful and Kind Care’ talks of doctors seeing patients in a blur whereas they should be noticing each patient and seeing them in high resolution. Professor Montori is a very astute guy. It is worth visiting his website (https://patientrevolution.org).
My view based upon our experience is that noticing the patient, truly noticing him or her and focussing complete attention upon them and really seeing and hearing them (seeing them in high resolution) takes no longer than not focussing and listening superficially. It is not a matter of time, it is a matter of making the effort. A matter of simple concentration. That effort is all but certain to be rewarded – and it is all too often absent.
Most of the consultants we encountered were butterflies. They fluttered from flower to flower confident in the knowledge that they were fine, admired specimens and saw each very brief landing on a bloom to be a blessing which they bestowed upon that flower.
What the flower needed however was a worker bee that stayed on the bloom to ensure that the mutually beneficial transaction was properly completed. Not only would the flower get pollenated, but the bee would come away with plenty of nectar. The patient would be listened to and would feel the doctor’s empathy. The patient would feel cared for. Feel that they mattered. The doctor would gain real insight and be in a better position to make correct clinical decisions – which just might just determine whether the patient lives or dies. It seems obvious, but it doesn’t happen enough. For Ann, it didn’t happen for months on end.
It isn’t just about listening and hearing however. It is about talking too.
When we first arrived on the cardiology ward in May 2015, one of the nurses warned us not to attach too much importance to what the consultants said. “If you see ten cardiologists” she said, “you’re going to get eleven different opinions”.
It was a remarkably perceptive remark and to our great surprise, proved to be entirely accurate. The cardiologists, we discovered, were not slow to offer diagnoses and opinions, even in the absence of much in the way of clinical evidence to support their suppositions. In Ann’s case, many of these impromptu outpourings were completely and utterly wrong and caused either unnecessary worry or misplaced hope.
Too many of the doctors loved an audience – whether it was the patients themselves, the nursing staff or a gaggle of sycophantic medical students – and they took every opportunity to demonstrate their superiority. It was as if they had been born with one ear and two mouths.
And as we’re talking about talking, another recurring theme was constantly being spoken to as if we were only three years old.
I understand of course that doctors have to explain some relatively complex issues to a very wide variety of people but it shouldn’t take a genius to detect the difference between someone with learning difficulties and a MENSA member. The two can be distinguished with relative ease. Similarly, it really isn’t that difficult to work out which people want lots of information and which would prefer just the bare minimum.
Between us, Ann and I have eight A levels, two undergraduate degrees, one post graduate degree and two professional qualifications. Between us, we spent thirteen years at university. It is fair to say that we are both reasonably articulate. It should have been pretty obvious that we were likely to understand most of what was explained to us.
The doctors also knew that Ann was a dental surgeon. Ann had over thirty years’ experience in treating patients of her own. Like the doctors, Ann had studied medicine and surgery. Like them, she had dissected human cadavers. Indeed, when it comes to the head and neck, she could probably have taught them a thing or two about anatomy and physiology.
She could certainly have taught most of them a thing or two about ‘bedside manner’.
With few exceptions, the doctors addressed us in the most infuriating and patronising tone and often dismissed intelligent questions with platitudes like “Oh, you don’t want to be worrying yourself about that!”
“Well actually, you condescending twit, I am already worrying my little head about that and the reason that was an interrogative sentence is that I was rather hoping for an answer!”
Of course, I never actually had the courage to say that. Instead, I bowed to their inevitable superiority and kept my mouth shut (more of which shortly).
So why are so many of you hospital doctors such rampant prima donnas?
I think I may have an explanation:
The Super-Hero Delusion
18 doctors are assigned a letter-name in Ann’s story. There were of course many other doctors from F1s to senior registrars and consultants that we encountered on the journey but whose part was not significant enough to be described in detail. In total, I would estimate that Ann was examined or treated by roughly 30 senior doctors, the majority of whom were at consultant level (I’m ignoring altogether the countless unfortunate F1s, F2s and junior registrars here).
Of those thirty or so senior medics, Ann and I came to believe that six of them were brilliant doctors. This special half dozen demonstrated qualities that ought to be shared by every single doctor in the land – empathy, an ability to listen and, more importantly, to hear and of course, excellent clinical skills and knowledge as one would expect. They didn’t just give their time and expertise, they gave their complete attention to Ann and gave it with compassion and kindness.
Just six out of thirty. Hardly an impressive haul.
So that they know that they are recognised and appreciated, they are:
Dr A, the ED doctor on that first night in the Hull Royal Infirmary ED who watched Ann’s monitors all night and probably saved her life by not discharging her.
Dr D, who re-admitted Ann leading to the discovery of the stenosed coronary artery and later dealt with the consequences of the post-operative haematoma with such kindness and compassion.
Dr E who persisted with the investigations into Ann’s ischaemic pain and inserted the stent in her artery, later giving her his personal mobile number so she could contact him if there were any problems and always came to see her during subsequent admissions even though he was no longer involved in her care.
DR N, the ED consultant who was so wonderful with Ann after her cardiac arrest whilst simultaneously dealing with the terribly injured girl who had jumped off the Humber Bridge.
Dr Q, the pain consultant who still sees Ann regularly and will not rest until everything possible has been done to eliminate Ann’s ongoing pain.
And finally, Dr S who performed the third implant procedure at the Freeman Hospital in Newcastle resulting in an immediate and radical improvement to Ann’s dreadful suffering.
You know who you are. Thank you from the bottom of our hearts.
Of the remainder, a few were little more than a face during a fleeting encounter and so little is remembered of them. Many however played a more significant role and fell well short of the standard every patient should be entitled to expect. In my opinion, at least ten of the doctors, including all those that made serious errors in Ann’s care, suffered from what I will call the Super-Hero Delusion. It is perhaps another way of saying that these doctors are astonishingly arrogant or downright pompous combined with a terrifying level of self-belief.
There are, I suspect, many complex reasons for this.
Doctors, and hospital consultants in particular, are accorded a remarkable level of respect by patients by default. Those of us without medical training tend to be in awe of their skills and knowledge – and I certainly was before our story began. Sometimes, as was the case with Ann, we are obliged to put our lives into their hands – quite literally. To be able to do that with any degree of confidence, there is a need for us to afford special status to them. In our minds, we elevate them to a super-human level. We put them on a pedestal.
To do so makes us less scared.
If they’re super-human, we’ll be OK, we reason.
Some of that rubs off.
It isn’t helped by the default structure of medical care in hospitals. There is an ingrained hierarchy in place in every hospital in the world and the consultant sits atop the pyramid. He is feared. He is obeyed and he is listened to.
Even if he’s talking rubbish.
Little wonder then that some of this goes to their heads. Some consultants we met had become so corrupted by their special status that they had become flagrant narcissists. Dr L at Castle Hill Cardiology (who never actually treated Ann, thank God) is an extreme example of the deluded super hero clinician. I daren’t even write here my opinion of Dr L. Suffice to say I think I there are probably an awful lot of mirrors in Dr L’s house so he can see how wonderful he is as often as he possibly can.
But even in its milder forms, the super hero delusion can still be extraordinarily dangerous. Let us take a look at Ann’s experience in the ED in August 2015 before she was inappropriately discharged only to have a cardiac arrest at home hours later:
Dr G, who looked after Ann that night was by all accounts a dedicated and capable doctor and yet she made a catastrophic error.
Dr G didn’t listen. Or if she did, she didn’t hear and if she heard, then she didn’t believe what she was being told – even though it was completely accurate.
She didn’t focus on the patient. She didn’t see the patient in high resolution and so she didn’t see what was right in front of her. She allowed her overwhelming confidence in her own ability and judgement to completely override the information she was being given. She ignored the facts and preferred her own opinion.
Let’s not forget, Ann had been rushed to hospital after an episode of violent palpitations and central chest pain with partial loss of consciousness. She had previously been recorded (in the very same unit) with sustained ventricular tachycardia at 240 beats per minute for 35 minutes and was already being treated for that condition. She had already had a coronary stent inserted and her cardiac circulation was now “A1”. Her arrhythmia however was not yet fully controlled and she was a clear risk for sudden cardiac arrest.
This is what I think Dr G saw when Ann presented:
Dr G had seen Ann’s ECG which was now normal. The VT had stopped, for the time being at least. She had tested Ann for Troponin and the test was normal. She looked at Ann and saw a fit, healthy and attractive woman. She didn’t like the way that Ann described her symptoms like an experienced clinician (which is exactly what she is of course). She ignored the medical history and completely dismissed what Ann was telling her.
By contrast, this is what she should have seen:
My graphical interpretation may be slightly wide of the mark but probably not very wide. There is no doubt that there was an incorrect reading of the patient and it very nearly cost Ann her life.
Ann’s medical history was ignored and she was treated based on how she appeared and on an over-confident and wholly incorrect opinion instead of based on the evidence presented. Ann wasn’t even placed on a monitor. If you’ve read the other chapters, you will know that she was not seen by a cardiologist, she was not admitted and she was instead discharged the following day (by a gastroenterologist!) only to have a cardiac arrest five hours later.
The super hero delusion: I’m a doctor and I’m never wrong.
Well doctor, you were wrong this time. You couldn’t possibly have been more wrong.
The super hero delusion was also at play when Ann told the doctors and nurses time after time that something was very wrong with the wound site after the first implant. It convinced staff that she was being a drama queen – so much so that they didn’t even bother to check for themselves – so she developed a massive haematoma, she was left in agony and her ventricular lead was displaced so the whole procedure had to be repeated.
The same was true when the staff believed that Ann was refusing to get out of bed after the second implant rather than that she was incapable of doing so. Nobody has pain like that after a simple implant. She must be making it up. I’m so confident that I’m right that I won’t even check her out.
It happened yet again when she told them of the post-operative pain at the out-patient clinics. It couldn’t be that. That doesn’t happen. She’s exaggerating. We know best. We’re the experts. We’re the super heroes.
No focus. No listening. No hearing. No compassion.
Well, my dear doctors, you are not super heroes. All of you are fallible. You make mistakes like the rest of us. And if you admitted to them more often, and occasionally actually allowed yourselves to learn from them, then hospitals would be a very much safer place.
And by the way, it is still not too late to admit the errors in Ann’s case.
In the meantime, please leave the narcissism at home and re-learn the simple art of listening – the simple kindness of giving the patient your undivided attention. If you do, there might be fewer mistakes in the first place.
Treat the Person, not the Condition
In a world of increasing complexity and technology, there is no doubt that medicine has to be divided into an increasing number of specialisms so that doctors can assimilate the vast amount of knowledge they need to treat us safely and effectively.
Unfortunately, specialists like to stay within their specialism. They are comfortable in their comfort zone. And sadly, they no longer seem to see their job not as making the patient well, but rather they see it as curing or treating ONLY the specific conditions within their specialism. The rest is somebody else’s problem.
Which at times is a profoundly stupid approach.
One example of that stupidity which we came across is the widespread use in the electrophysiology world of Amiodarone, a drug that was at least twice put forward as a suitable treatment for Ann (but fortunately not given except when Ann’s life was at immediate risk).
The first problem with Amiodarone is that it works really well, especially for ventricular tachycardias like Ann’s. It is a highly effective anti-arrhythmia drug. It is much easier for doctors to prescribe Amiodarone than spend the time to test and assess the effectiveness of the less harmful alternatives.
Unfortunately, the second problem with Amiodarone is that it has more nasty side effects than you can shake a stick at.
It causes interstitial pneumonitis (a form of pneumonia that can be fatal) and fibrosis of the lungs (irreversible scarring of the lungs). The scarring can occur in as little as a week after treatment starts or take years to develop. It’s a bit of a dice throw. But develop it will.
Amiodarone also causes abnormalities of the thyroid because Amiodarone is structurally similar to thyroxine (a hormone produced by the thyroid gland) and causes both hypothyroidism and hyperthyroidism (slow and overactive thyroid respectively). It also causes micro deposits in the cornea of the eye in 90 per cent of people taking it along with a host of other less common but more serious eye problems. So, your arrhythmia will be much improved but you might not be able to breathe or see very well.
Amiodarone also causes abnormal liver enzymes which can lead to jaundice, liver enlargement and even hepatitis and cirrhosis. After 18 months, it can also cause a blue-grey discoloration of the skin with acute light sensitivity. It can build up in the male testicle and cause inflammation in the epididymis and men on long term Amiodarone can also develop breasts. Long term use can cause damage to the peripheral nervous system affecting sensation, movement and organ function and one study even suggests that it is also linked to cancer.
So, cardiologists or electrophysiologists can prescribe Amiodarone confident that their patient’s arrhythmia will be controlled. They have done their job. The patient is likely to disappear from their list of problems. Box ticked. Bed cleared.
In due course however, there is a very good chance that the patient will become a new case for the departments of pulmonology (lungs), endocrinology (thyroid), ophthalmology (eyes), hepatology (liver), dermatology (skin) and, potentially, oncology (cancer). So instead of using the resources of just one hospital department, that unfortunate patient may move on to using the resources of up to six other departments.
The problem hasn’t been solved, it has been multiplied. But our electrophysiologist doesn’t care. It isn’t his problem any more.
Is that a sensible use of scarce NHS resources? I think not. Is that a satisfactory outcome for the patient? Of course not. His condition has been treated…
But he hasn’t.
Instead, his life has probably been ruined.
Doctors, please treat the patient, not just the condition. Invest a little more effort and maybe a little more time – to protect the precious resources of the NHS from your bad decisions and to preserve some quality of life for the poor patient. Climb out of your specialist silos and engage fully with the patient so you can achieve a holistic result that maximises the patient’s quality of life and doesn’t just tick your specialist box.
Right First Time
There is, I don’t doubt, enormous pressure on clinicians to discharge patients as early as possible to ‘free up’ beds for more inbound patients. I’m equally sure that doctors would blame this on the armies of faceless managers and pen-pushers who appear to run the NHS these days – and they may be quite right to do so.
Nonetheless, it is you the doctors who sign the discharge forms and in Ann’s case, I suspect that all five discharges from Castle Hill were premature or entirely inappropriate. Indeed, it could be argued that she should only have needed to be discharged once had her treatment been carried out right first time.
Ann now has an ICD, takes regular and highly effective anti-arrhythmia medication (Sotolol) and has a single coronary stent in her LAD. Ignoring for now the harm done to her by the many mistakes that were made, she could and probably should have got to that point in a single hospital stay. Even if all of that meant that she would have been there for a month, that would still have been less than half the hospital nights that she actually endured because of the premature discharges and mistakes (she has spent around 65 nights in hospital so far).
Indeed, it is possible that if sufficient time and effort had been invested in finding the right anti-arrhythmia medication at the outset, the ICD implant would never have been necessary at all, saving hundreds of thousands of pounds in expensive medical devices, surgical procedures and everything that went with them not to mention the untold suffering, loss of livelihood and all the rest.
My point is that for whatever reason, the doctors display an unhealthy (and that is a very appropriate word) desire to get the patient out of the door as fast as possible. Whether that is in the patient’s best interests appears not to be a factor in the decision. She’s unlikely to die. If she gets in trouble, she’ll probably end up back here anyway so GET RID OF HER!
And we the patients and patients’ carers say nothing because we don’t want to be in hospital in the first place.
It is nothing short of sheer madness. And it is endemic.
And you, dear doctors, can stop it if you try.
Our experiences over the last two and half years tell us that the failure to listen, arrogance, the lack of holistic medicine and premature discharges must be costing many lives across the world. In particular, the failure to focus, to listen, and to hear is causing serious harm. Ann was lucky is some ways – she is still here. Many are not so fortunate. I read recently that between 9,000 and 20,000 people die in the UK each year as a result of medical error. In the USA, it is the third most common cause of death (after heart disease and cancer) causing over 250,000 unnecessary deaths. ((Research by John Hopkins University – covered in the British Medical Journal; BMJ 2016; 353: i2139))
Enlightened doctors are awake to this. Victor Montori I have already mentioned. Rob Hackett, a senior consultant anaesthetist in Sydney, Australia is another. Rob’s campaign about patient safety is also worth following (http://www.psnetwork.org).
However, so far, too few of you have put your heads above the parapet to stop this madness.
I hope many more of you doctors will join the revolution.