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.
Go straight to Chapter Eleven