Chapter Ten – Complaint

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No apology was received.

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

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

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

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

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

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

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

The following week, Ann had three appointments.

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

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

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

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

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

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

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

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

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

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

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

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

Suddenly, there were no more medical appointments.

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

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

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

It was a truly awful period of our lives.

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

Surprisingly, I heard from the CQC first.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Go straight to Chapter Eleven

Chapter Eleven – Meeting One

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

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

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

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

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

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

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

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

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

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

Email sent: 10.29 Wednesday 13/01/2016

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

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

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

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

Thank you and best wishes,

[Ms R]

Business Manager
Specialist Medicine

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

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

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

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

Needless to say, the written notification never arrived.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I want someone finally to listen.

I want someone to take some responsibility and help me.

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

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

I am passed back and forth with no answers.

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

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

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

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

Thank you for listening.

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

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

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

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

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

Email sent: 10.56 09/02/2016

[Ms R, Nurse Q]

Thank you for your time at the meeting on Friday.

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

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

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

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

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

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

It is a lamentable state of affairs.

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

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

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

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

Email sent: 11.24 10/02/2016

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

Kind regards

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

Ms R didn’t send the copy letter.

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

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

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

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

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

Email sent: 20.49 22/02/2016

[Nurse Q],

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

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

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

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

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

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

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

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

Regards,

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

She didn’t of course.

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

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

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

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

Third time lucky, we hoped.

You have no idea just how much we hoped.

Go Straight to Chapter Twelve