So, Ann was re-admitted on Sunday 31st May. She wasn’t even allowed to go home to collect her own things. She had been out of hospital for only seven days. Now, on top of her arrhythmia, she also had a potentially serious coronary heart issue.
So, as this is another new area of cardiology, it is probably time for another quick medical detour.
There are two main coronary arteries both of which branch from our largest artery, the aorta. These are the Left Main Coronary Artery (or left main trunk) and the Right Coronary Artery. They have nothing to do with the blood entering and leaving heart, they are the arteries that supply oxygen to the heart muscle and are on the outside surface of the heart. Both of these split into two lesser coronary arteries which, between them, supply blood to the heart muscle. So there are four lesser coronary arteries that can become blocked/obstructed or, to use the medical term, ‘stenosed’. This of course can deprive the heart muscle of oxygen and lead to a heart attack or myocardial infarction.
The purpose of an angiogram is to insert a catheter into the top of the cardiac circulation and inject a radio-opaque dye visible on x-ray into these arteries to see if any of them is stenosed.
Ann’s angiogram was carried out the next day by one of the registrars.
As I have already explained, Ann is a dental surgeon. As such, her right arm is rather important to her ability to practice and make a living. Ann also has narrow peripheral blood vessels and suffers from a condition known as Raynaud’s Syndrome – a condition which causes extreme constriction of the peripheral blood vessels in response to cold or emotional stress. All these facts were made known to the medical team.
Nonetheless, the decision was taken to enter Ann’s heart via the radial artery of her right arm (rather than the femoral artery in the thigh which is larger but more prone to a risk of bleeding). There were perfectly sound reasons to use the radial route but in Ann’s case, it was the wrong choice. Castle Hill does not possess catheters of different gauge – it is one size fits all. There are, I believe, narrower paediatric catheters for use in children but Ann was told that Castle Hill didn’t have any.
The result for Ann was that the entire procedure was excruciatingly painful, resulting in spasms of the blood vessels which the local anaesthetic did nothing to reduce.
The findings of the angiogram were that there was some ‘fuzziness’ of one of the two branches on the left side of Ann’s heart – in her case the left anterior descending coronary artery (the LAD) but an on-the-spot decision was made not to proceed immediately with fitting a stent in the affected vessel because the defect was not very clear. Ann’s other coronary arteries were completely clean – in fact unusually so for a woman of her age – which suggested that her healthy lifestyle had been beneficial and that the stenosis is the one blood vessel was more likely to be caused by a minor congenital defect.
In the meantime, Ann was in agony from the pain in her right arm.
She was now under the care of a new consultant, Dr E, one of Castle Hill’s team of interventionists and an expert in angioplasty. Dr E is one of the good guys in our story. He made what we believe is a wrong call (more of that shortly) but I want to record here that there is no doubt that he did so in what he believed to be Ann’s best interests and for very good reasons. He is one of the very few doctors that made himself available to Ann, even when off duty. He was courteous and friendly at all times and was one of the very few doctors who treated Ann as the intelligent, medically-qualified woman she is whereas many of his colleagues treated us both like idiots. He also showed genuine compassion and an absolute determination to make her as well as possible. One would expect this to be the attitude of all the doctors but sadly, it is simply not the case. Dr E, you know who you are. Thank you for your skill and kindness.
Fortunately for Ann, when Dr E reviewed the angiogram, he was not satisfied with the inconclusive results and so ordered a stress echocardiogram to provide additional information.
From the moment Ann arrived for the test, the stress echo staff were unpleasant and dismissive of the need for the test. They had, I believe, seen the inconclusive angiogram results and, like the ECG nurse at Hull Royal on that first day, they made no secret of the fact that they considered the test to be a complete waste of time. Like the ECG nurse, they were wrong.
To their surprise, and to Ann’s, the test showed a significant lack of perfusion to part of the heart wall. Some of Ann’s heart muscle wasn’t getting nearly enough oxygen. The need for the test was vindicated and, to be fair to them, the echo staff did apologise for their earlier attitude.
When the results were discussed with Dr E, he decided to investigate further with an IVUS scope (an intravascular ultrasound probe which produces a three dimensional image of the affected artery) with a view to stent placement.
Ann explained the degree of pain in her right arm during the angiogram and so they discussed going in via the femoral artery route but Dr E dissuaded her due to the increased risk of a bleed. As I have already made clear, I don’t doubt that his decision was intended to be in Ann’s best interests. Nonetheless, it proved to be very much the wrong call.
The following day, Wednesday 3rd June, Dr E carried out the IVUS scope angioplasty – again via the right radial artery – but under sedation to avoid a repeat of the pain of the earlier procedure.
The LAD was found to be stenosed (a cross sectional area of roughly 13sqmm occluded to less than 4sqmm – from memory). As a result, Dr E immediately and successfully carried out a stent placement to restore normal circulation.
After the procedure, a haematoma rapidly developed in the right forearm and it was necessary to place a second pressure cuff to contain it (one cuff is fitted by default to prevent bleeding from the catheter entry wound). When back on the ward, Ann’s right hand was black and blue and very cold so the cuffs were released and one was replaced. Ann subsequently developed extensive bruising from fingers to elbow (more of which later).
Later that day, Dr E informed Ann that the procedure had been a complete success. “You now have the cardiac circulation of a new-born baby”, he told her.
He also informed her that stent was made from Cobalt Chromium. As a dental surgeon, Ann knew a little about Cobalt Chromium (she makes dentures out of the alloy). It contains nickel – to which Ann has a hypersensitivity. That was to cause much confusion and concern in the weeks to follow.
Prior to discharge the following day, Ann was prescribed Ramipril – ACE inhibitor tablets usually prescribed for high blood pressure – but her most recent BP was just 116/68. She therefore asked to discuss this with Dr D who was back on duty. She explained that in this case, Ramipril was given to support heart muscle but as Ann had not had a heart attack, they were probably unnecessary. They had simply been prescribed out of habit it seems. Ann never took them and had them removed from subsequent prescriptions.
She was also prescribed Ticagrelor (a rather unpleasant anti-platelet medication to prevent re-stenosing of the stent which Ann would have to take for 12 months), Lanzoprazole (to combat the gastric reflux caused by the Ticagrelor – a bit like swallowing a spider to catch the fly), Atorvastatin (an anti-cholesterol drug which had to be taken at an extremely high dose for 7 days then reduced) and soluble Aspirin (to prevent clots). Of course, she continued to take the Bisoprolol for the arrhythmia. Sorry to go into so much detail here but the drugs are relevant to events that followed.
Her discharge medication now filled a large carrier bag. For Ann, who hated taking any tablets and usually avoided doing so at all costs, it was all very intimidating.
Ann also had the opportunity of a last discussion with Dr E. He told to her to expect 24 to 48 hours of mild chest discomfort but reassured her that she would be back in the gym “in a matter of weeks”. He also told her that she would be discharged with a 7 day Holter monitor and a blood pressure monitor.
As with the previous discharge, all the assurances Ann was given turned out to be false. Neither of the monitors arrived. Six months later, Ann wouldn’t be able to walk unaided for more than a few minutes – never mind return to the gym. But to be fair to Dr E, he couldn’t have known what was to follow.
Only three weeks had passed since I had driven Ann to the ED at Hull Royal that first time. She had already spent 12 nights in hospital and so I had quickly established what became a punishing routine. Ann had by far the worst of it of course, and always seemed to have a smile ready for everyone despite her suffering, but it wasn’t easy for me either.
Mornings were usually taken up with washing and ironing and shopping for items Ann had requested – face wipes, books to help her pass the time or gluten-free snacks. Ann had been on a gluten free diet for many years and gluten free meals provided by the hospital were also dairy-free, nut-free, taste-free and, basically, nutrition-free. If Ann was to get better, she needed far more nutrition that the hospital was providing. I would make up nutritious salads and buy blueberries and raspberries to supplement the limited supply in hospital.
Then there was the organising of hospital visits by friends and family. Sods law would dictate that everyone would want to visit her on the same day and so I became chief choreographer, shuffling people around such that Ann had visitors most of the time but not too many at once. It was almost a full time job by itself requiring dozens of texts and telephone calls. Then there were the get well cards to open (she would get over 100) and finding vases for the continuous flower deliveries. Eventually, the house looked like a florists (flowers are not allowed in cardiology so I couldn’t take them in). They were everywhere. I confess that I came to hate flowers with a passion and now avoid buying them whenever I can. It felt like the doorbell would ring every 15 minutes with yet another bouquet turning up. It was a sign of the considerable love people felt for Ann of course but for me, it became a curse and a source of considerable stress.
I also had to deal with Ann’s colleagues at work who were covering her dental patients. They had to be kept informed and I would meet with them to plan the next week as her return to work got further away rather than closer. They were fantastic throughout but at this stage, were blissfully unaware that the return to work would be more than a year away.
Afternoons comprised the first of two visits to see Ann, complicated by the constant battle to maintain a pocket full of pound coins to feed that car park machine (I would spend nearly £500 in it eventually!) followed by a daily dash to the supermarket to buy something simple for my dinner, plus milk, catfood and any other essentials – and beer. Lots of beer. I rarely managed breakfast or lunch at all. There simply wasn’t time.
By the time I had returned home and unloaded my shopping into the fridge and dealt with any new cards and flowers left with numerous neighbours, I was usually late for the evening visit so I would simply turn straight around and go back to feed the car park machine. When I finally got home, I would have masses of text and phone messages asking after Ann and it would take an hour just to deal with these. Eventually, I took to writing one long text message to explain everything that had happened that day and sending it to dozens of people at once. It is these messages and the ones Ann and I sent to each other that have allowed me to recall such a detailed account of what took place.
I soon got into the habit of choosing evening meals that could simply be placed in an oven for half an hour and eaten out of the foil container. Consequently, I got through a lot of lasagne and shepherd’s pie. Cooking a proper meal (which I normally love to do) was out of the question. So, I would arrive home, throw my foil dish in the oven, crack open a cold beer, and then begin my lengthy text bulletins – the ‘Annograms’ (or equivalent with her real name) as they became known. By the time I had eaten, and had another beer, it would be time to go to bed. I was exhausted by then anyway and so, despite all the worries about Ann back at the hospital, I would usually fall asleep instantly, occasionally with one leg still on the floor. Other nights, I would stay awake most of the night, worrying about Ann and unable to suppress my anger at the injustice of it all.
Meanwhile, I was barely getting to work at all. I was supposed to be busy with a very major building project that was in the critical ‘construction drawing’ stage. That is to say that the design was more or less complete but the team was flat out preparing the drawings that the contractors would use to build the project. It was a time when I needed to be there as much as possible and my absence was causing real problems with progress. It was just another layer of stress to add to all the others. It wasn’t long before I started to feel unwell myself and I came to understand what an incredibly tough job so many carers do, some for years on end.
But I was always reminded that Ann was suffering infinitely more than I was and if I could have changed places with her and become the patient to end her suffering, I would have done so in a heartbeat (possibly a very fast one).
Anyway, enough of that. Back to the story. Ann had been discharged again and so my tough routine was at an end – or so we thought. Ann’s suffering wasn’t.
Two days later, Saturday 6th June, Ann was unable to attend a planned social event with the family as the chest and arm pain had become too severe. The bruising by now had extended from wrist to elbow and she had loss of sensation near her wrist. She was completely unable to straighten her arm and was becoming very concerned. By now, according to the advice given by Dr E, the chest pain should have stopped altogether but was in fact getting much worse.
The next day, Ann went to see our GP because of the persistent burning chest pain which had continued without respite since the procedure had been carried out – and so had the acute arm pain. She also raised the issue of general muscle pain (a known side effect of the Atorvastatin).
It soon became clear that the information provided to the GP in the discharge letter was at odds with the information given to Ann. Ann had been told to titrate DOWN (reduce) the Atorvastatin after seven days as she would struggle to tolerate the drug. The discharge letter said the exact opposite and instead told the GP to titrate the dose UP! One of the two was clearly wrong. Quite how the hospital had managed to be so utterly incompetent I can’t begin to guess.
As a result of Ann’s alarming state of health and the dangerous contradictions in the information provided by Castle Hill, the GP faxed an ‘urgent’ list of questions to Dr E.
No reply was received (just an acknowledgement of receipt).
The GP favoured Ann’s version of what should be done and ignored the discharge letter. The Atorvastatin dose was (correctly as it happens) reduced from 40mg to 10mg to alleviate the muscle pain. And it worked. That left the chest pain and the arm pain which were still very much there.
On Friday 12th June, Ann tried to call Dr E’s secretary to chase a response to the GP’s fax. The line was on answerphone every time, with no message facility. That weekend, we were due in London to see our son. Ann was unable to travel because the chest and arm pain was still much too severe.
On Monday, I returned to work. The GP had still received no reply to the ‘urgent fax’ to Castle Hill.
Ann tried again to call Dr E’s secretary but this time, there was an automated recording saying that they were unable to answer due to a technical difficulty, and “please try again tomorrow” – which is exactly what Ann did. On Tuesday, she made 6 further telephone calls to Castle Hill. She eventually got through to Ward 28 and when she tried to explain about the chest and arm pain, she was simply told that she just needed to relax! Without seeing Ann, and having just been told that Ann was suffering from acute chest pain, the nurse simply concluded that Ann was suffering from anxiety. It beggars belief! I can guess which nurse took the call. We will meet her in later chapters.
When, later that day after several more attempts, Ann finally managed to get to speak to a secretary about the urgent fax, she was informed that Dr E would not be doing any admin work for the next month! An urgent fax from a patient’s GP was going to sit in the in-tray for a month. To the best of my knowledge, no reply was ever received.
On the Wednesday, the chest and arm pain was still no better. By now, the arm was looking dreadful – strange purple lines covered the forearm with a blue-green background colour from wrist to elbow (see photograph left). Ann couldn’t even feed herself properly, I had to cut up her food for her.
As she was experiencing such difficulty trying to talk to anyone via the NHS systems, in desperation, she resorted to trying to arrange a private appointment with Dr E. She eventually established that Dr E didn’t do private work and so she tried Dr C whom she had met prior to the first discharge. He had no free appointments before July 9th so eventually, she managed to secure an appointment with another of the interventionist consultants, Dr F.
For that, a GP referral letter would be required. So, on Thursday, Ann discussed the need for a referral letter with our GP. The GP agreed to provide the letter and also agreed that a private appointment was a good idea in the light of our inability (and the GP’s inability) to establish any meaningful communication with the cardiology department.
The following day, Friday 21st June, Ann was still unable to speak to anyone for advice despite multiple further attempts to call the ward and Dr E’s secretary.
That day, a friend dropped in to see Ann whilst I was at work. The friend was so horrified by Ann’s condition that she insisted on driving Ann straight to the ED at Hull Royal.
There, the staff did an ECG and ran an enzyme test for troponin. The use of ECG and troponin tests will be discussed in much greater detail later. Both are very effective in establishing whether a patient has had a heart attack but are, more often than not, profoundly useless for a patient with known arrhythmia. The problem is that clear ECG and troponin tests provide false reassurance and suggest that the patient isn’t in danger. For arrhythmia patients, they tell you nothing at all.
Nonetheless, the staff were very helpful – in particular, an ED nurse, Nurse A, who deserves our sincere thanks for his excellent care. He will appear again later in the story.
Nurse A tried to raise Dr E on the telephone. Dr E returned the call shortly afterwards and spoke to the registrar and then to Ann directly. He was even kind enough to give Ann his mobile number – which was very probably against protocol but was in fact a rare and much appreciated act of kindness after Ann’s inability to speak to anyone for so long. Dr E also called Ann over weekend with the troponin test results – which were, as expected, completely normal.
Now that a line of communication had finally been established, Ann decided to cancel the private appointment with Dr F.
After the weekend, an appointment arrived for the fitting of the Holter monitor on the 2nd July (the same monitor that should have been fitted before Ann was discharged). It stated that the monitor would be worn for just 24 hours instead of the required 7 days! It seemed to us that the administration at Castle Hill was utterly incapable of getting anything right at all.
Between the 24th June and 30th June, we managed to take a short holiday in Herefordshire which had been arranged and booked before this tale begins. Because of Ann’s state of health, we couldn’t do very much but, in a sense, that was exactly what we both needed. She did manage to take short walks with me but experienced continued persistent arm and chest pain. The arm pain and immobility was so serious that I still had to cut up cut up Ann’s food for her at every meal time. Given that we were staying in hotels, this was an uncomfortable experience for Ann. Other guests must have wondered why an attractive and apparently healthy woman was being fed by her husband at meal times.
After the holiday, Wednesday 1st July was the day that Ann had been due to return to work. As she was still unable to use a knife and fork, root fillings were out of the question.
Instead, Ann attended an outpatient clinic at Castle Hill and was seen by Dr B, the electrophysiologist who had carried out the earlier EP Study. It was in fact the routine recall following Ann’s first discharge. Dr B dismissed the chest pain as insignificant and said that the arm pain “Wasn’t my fault because I went in through the femoral artery”! He said that there was vascular and possibly neurological damage – probably in the shoulder area – but as it wasn’t his problem, he expected it to be discussed with Dr E. As it happens, we were due to see him within 24 hours.
2 out of 10 for empathy on this occasion then. Dr B’s compassion skills are not highly developed..
The next morning, Thursday 2nd July, Ann was fitted with a Holter monitor which we managed to get changed from 24hr back to the original 7 days.
Later in the day, I went with Ann to an outpatient appointment with Dr E. There, we discussed the possibility of a hypersensitivity reaction to the nickel content in the stent as a potential explanation of the continued chest pain (which, according to Dr E’s earlier assertion, should have ceased four weeks before). He dismissed this as highly unlikely because there was no rash or breathing difficulties (even though Ann’s standard contact dermatitis reaction to nickel is burning pain and blistering, not rash or wheezing). As it happens, Dr E was subsequently proved right. The chest pain had nothing to do with the stent.
Dr E also confirmed that the troponin levels found in the test carried out at the ED were normal so he concluded that there were no concerns with the stent placement. No alternative explanation of the chest pain was offered.
With regard to the chronic arm pain, he said that there was good perfusion so there couldn’t be any damage to the radial artery and he undertook to arrange an appointment with orthopaedics because there was probably an underlying soft tissue problem.
Scepticism was setting in by now. I’m afraid that neither of us believed a word of that. The promised orthopaedics appointment didn’t materialise either, which only served to reinforce our incredulity.
Dr E also said however that he would try to arrange an urgent physiotherapy appointment.
A few days later, Dr E telephoned Ann (and getting phone calls from a consultant was a real breath of fresh air I can tell you) to say that the physiotherapy appointment would be at least two weeks away but he gave Ann the contact number so she could chase it up herself. It was all but impossible to get through (as ever) and she eventually left a message. By the time they returned Ann’s call several days later, she had already given up and had arranged a private appointment.
That day, we also returned the Holter monitor. We were told to expect the results in 6 to 8 weeks! So, Ann was suffering from unexplained chest pain and she might have to wait the best part of two months to receive any useful information which might help to identify the cause. It would take one minute to download the data but 8 weeks to tell Ann what it said.
On Thursday 9th July, Ann got through to the pacing clinic at Castle Hill at the 23rd attempt that day (really, she was counting) and was able to explain to them the spectacular depth of their latest administrative ineptitude. She had received no less than 3 additional and spurious appointments for fitting a 24 hour Holter monitor, each containing the threat that if she didn’t turn up to have the monitors fitted, she would receive no further treatment!
So, Ann would be denied treatment if she didn’t show up – not once but three times – to needlessly repeat something that had already happened. By now, even this crass stupidity no longer surprised us. The administrative staff at Castle Hill it seems, would be incapable of finding their own backsides in a dark room.
They weren’t the only ones.
On Monday 13th July, Ann had an appointment to attend the private physiotherapy appointment and the mobility in her arm had improved just enough for her to drive herself to the appointment. The physiotherapist was at what appeared to be a semi-derelict industrial estate in East Hull. The appointment had been arranged through our insurers, Vitality Health. Now Vitality are one of the most incompetent health providers in the market and I had had many run-ins with them in the past (so much so that I already had the email addresses of several of their managers) but here, they had really excelled even their usual low standards. Apparently, Vitality don’t actually visit the physiotherapists and other service providers to whom their customers are sent. The photographs tell part of the story.
What they don’t tell is that the physiotherapist in question did not even have a waiting room. Patients have to sit on a solitary chair in the stark corridor outside. The lights are on motion sensors so that when the patient does sit down, they are plunged into darkness!
It would be hysterically funny if it wasn’t so pathetic. In the end, because she was worried that her car would be dismantled whilst she sat in the pitch black corridor, Ann left without even being seen by the physiotherapist. So much for private health insurance.
After a few very heated calls with the idiots at Vitality and a threat to send the photographs to the national newspapers, Vitality finally agreed that Ann could see a competent physiotherapist the following day near to our home.
He confirmed that there was indeed extensive vascular damage throughout length of Ann’s arm plus some neurological damage to her forearm. He also thought that it would take at least three weeks of two sessions a week of intensive treatment before Ann would be able to resume work.
Ann was at this point still unable to straighten her arm fully (she normally has a hyper-extended elbow joint). She could manage to drive short distances but was still unable to work. Quite apart from the pain and suffering, the delay was costing thousands of pounds in lost income and locum tenens costs (payments to other dentists who were seeing Ann’s patients).
In the end, it was to be a further two months before the severely damaged arm was almost back to normal though even today, two years later, Ann still cannot get the top off a bottle of mineral water.
Ann did manage to return to work very briefly in early August, but she was only able to carry out dental examinations. She was still unable to undertake treatments because of the damage to her arm. I say ‘very briefly’ because there was more to come. Much more. If you think her experience so far in this story has been pretty awful, it was a piece of cake compared to what came next. The story so far was just the prologue and had it ended here, I wouldn’t be telling it at all.
Because in August, things got really bad. So bad that the next chapter is going to be very hard to write because of the awful memories it will rekindle. The Trust’s treatment of Ann – or in this case, their failure to provide treatment – very very nearly cost Ann her life.
Proceed straight to Chapter Four