In our tale, we are approaching the end of October of 2015. Autumn was well underway and the summer was already a distant memory. Except for Ann, she had barely stepped out of doors since May so she had no summer memories to fade. All she had to remember was pain and suffering.
She had been out of hospital for a month. Had things been done properly, she would by now have returned to work and should have resumed a more or less normal life. Had things been done properly, she would soon be back doing classes at the gym and walking in the hills at weekends.
But she wasn’t. She was still on the sofa.
At 8.30am on Thursday 29th October, I took Ann to our local GP surgery for her weekly blood test (to monitor the serum potassium levels).
We have already talked about potassium levels quite a bit, but it is probably worth looking at this more closely to understand why we believed the hospital’s ‘pat on the head’ attitude was so inappropriate – especially now that Ann was taking Sotolol to manage her arrhythmia.
In case you think I’m making this up or exaggerating the significance of potassium, let’s take a look at an article that I consulted back then entitled ‘Hypokalemia and the Heart’ from Vol.7, N°9 (12 Nov 2008) of the online journal of the European Society of Cardiologists Council for Cardiology Practice (these guys really ought to know what they’re talking about):
“Hypokalemia is a frequent disorder, especially important in cardiac patients. While in patients without heart disease hypokalemia rarely leads to death, among cardiac patients unrecognized hypokalemia may be one of the leading causes of iatrogenic mortality. As far as also hyperkalemia carries substantial risk, it is of utmost importance for a practicing cardiologist to keep the potassium levels within normal limits in all cardiac patients”
Let’s look at what that bold sentence means. Here it is again:
Among cardiac patients unrecognized hypokalemia may be one of the leading causes of iatrogenic mortality.
Hypokalemia is low serum potassium. Unrecognised hypokalemia means not taking enough notice of low potassium levels. Iatrogenic means caused by medical treatment. Mortality means death. So, we are talking about death caused by doctors who don’t keep an eye on potassium levels. In fact, what may be one of the leading causes among cardiac patients of death caused by doctors’.
So, it’s important.
For Ann, even more so because she was talking Sotolol. Allow me to explain (and please excuse the use of quite a few new medical terms which I had to learn to get my head around this):
Low potassium levels tend to make arrhythmia worse generally – causing an increased incidence of ventricular ectopic beats, ventricular tachycardia, and ventricular fibrillation.
A known side effect of Sotolol is that in certain patients, it can cause a form of arrhythmia known as ‘Torsade des Pointes’ or TdP. Torsades de Pointes is caused by a prolongation of the QT interval (which in simplest terms is the last two-thirds of a single heartbeat). Sotolol is known to extend the QT interval and so as a result, increases the risk of TdP. Low potassium also increases the QT interval (significantly according to the same article quoted above).
So together, Sotolol and low potassium are really bad news.
Ann knew this, which is why she was banging on about it and putting pressure on the doctors to prescribe potassium supplements. Her ‘peace of mind’ had nothing to do with it. It was a question of her safety.
Which is why she had blood tests every week.
The young phlebotomist who took the blood that morning easily obtained the sample and we were in and out in just a few minutes. When we got home, Ann removed her coat to discover that the left sleeve of her previously cream coloured fleece was now bright red! Ann was bleeding profusely from the puncture in her vein.
At this point, a friend arrived as part of a rota we had established to allow me to return to work at least part of the week. I had managed less than 10 full days at the office since August due to the ongoing fiasco of Ann’s medical care and her resulting need for constant round-the-clock support. I had important meetings arranged so, thinking that the bleed was no big deal and would be resolved in a matter of minutes, I went off to work and the friend kindly drove Ann back to the GP surgery – and, of course, became an independent witness for the disturbing events that unfolded through the day.
At the surgery, Ann was taken straight through to see the phlebotomist and a nurse. The poor phlebotomist was horrified, but he hadn’t done anything wrong. This time, it was a case of plain bad luck and a risk associated with the blood thinning drugs that Ann still had to take to protect her stented artery.
They quickly dressed the bleed with bandages and wadding but the bleeding came through it in a couple of minutes. This was quickly replaced by a Kaltostat dressing (a special dressing that promotes haemostasis) and pressure bandage as one of the GPs joined the group trying to stop the bleeding. Ann was returned to the waiting area for a few minutes with the expectation that she would soon be able to return home.
Blood was coming through the bandages again within minutes. Ann was taken back through and another of the GPs, Dr P, was called to help. He re-dressed the wound yet again and Ann was sent home to rest with the arm elevated (but not above shoulder level – that was not allowed for 6 to 8 weeks after the implant surgery) and told to call in with any further problems.
In less than an hour, the blood had gone through the dressing, through another fleece and through the towel in which all were wrapped and was seeping into the pillow on which Ann’s arm was resting. She was losing a lot of blood.
Ann called the surgery to discover that Dr P was already on his way to our home. He arrived a few minutes later. Not wanting to disturb any clotting that may have started, he cut up some surgical gloves and wrapped the bandage in the plastic then added further layers to increase the pressure on the bleed and told Ann that she had to go to hospital.
As the ED at Hull Royal Infirmary was still the place of nightmares for Ann, she remained very reluctant to return there. Because the bleed was caused by medications prescribed by the cardiologists and any solution could increase coagulation and so potentially have an effect on the coronary stent, Dr P agreed that it would be sensible for Ann to return to Castle Hill to seek treatment. He therefore immediately wrote a referral letter addressed to the cardiac team explaining that the bleed followed a routine blood test and handed it to Ann.
So, our friend drove Ann to Castle Hill where they presented at the cardiac clinic reception and handed over the referral letter. After one and a half hours of waiting (and bleeding) our friend enquired at the desk about when Ann might be seen. They explained that they had tried to get hold of Dr B but he was busy in the lab but that Dr K was available to see Ann between patients.
Shortly after, Ann was taken through to see Dr K. The senior pacing tech that had been present at the recent visit with Dr B and the arrhythmia nurse , Nurse N, were also present, as was our friend.
I have previously talked of Dr K’s ‘call a spade a spade’ attitude and how we had found it refreshing at the time to encounter a bit of plain-speaking. Her bluntness was less welcome this time around. In fact this time, Dr K didn’t just indulge in plain-speaking, she indulged in shouting at a very ill patient in terrible pain and with an uncontrolled bleed.
Dr K, dressed in her scrubs, greeted Ann pleasantly enough but when Ann removed her fleece to reveal the blood-soaked bandages on her arm, Dr K lost her temper. Apparently, somebody had mis-informed Dr K that the bleed was at the ICD implant surgery site and so she had left a patient on the operating table in the lab to come and see her. Cardiology communication failure had struck again.
Dr K immediately said that they couldn’t and wouldn’t deal with the bleed at Castle Hill and that Ann would have to go to the ED where she should have gone in the first place. She was unpleasant, rude and loud.
She also said that Ann shouldn’t return unless she had made an appointment.
It is probably no coincidence that no further appointments were ever issued by the Castle Hill Cardiology Department. We had already received a few further appointments – one for the Holter monitor to be fitted, another regular pacing clinic appointment to check on the ICD and one appointment with the cardiac physiologist- but no more were forthcoming after this date.
She didn’t know it at the time, but it seems that Ann had been evicted. Cast aside.
Unaware of this and conscious that Dr K had a patient waiting for her in the Lab, Ann took the opportunity to explain briefly to Dr K that the post-operative pain, far from improving, was actually getting more severe over time. Dr K (very roughly, causing a lot of additional pain afterwards) examined the implant site and announced that Ann’s extreme pain was in fact nothing to do with the ICD implant surgery!!
Ann was speechless.
How could extreme pain at and surrounding the implant site, which had begun the very second that Ann came round from the anaesthetic and had continued around the clock ever since possibly be the result of anything other than the surgery?!
If I was to punch you in the face and then claim that the swelling and black eye which followed was in fact a complete coincidence and nothing to do with the punch – you wouldn’t believe me.
And Ann didn’t believe Dr K.
Either she was lying, or she is profoundly stupid.
Clearly, she isn’t stupid.
It was this transparently false statement that first made me consider making a formal complaint against the Trust, and the electrophysiology medical staff specifically. Their failure to use a pressure dressing after the original surgery and the fact that the operation was ultimately unsuccessful and had to be repeated and then the mutilating second operation were the causes of most of the unnecessary suffering that Ann has had to endure.
All the other many episodes of ineptitude, appalling communication, isolation and lack of compassion had made matters much worse but it was the inadequacy of the electrophysiologists’ work that had caused the most suffering.
For Dr K to lie in an attempt to wash her hands of those consequences was simply not acceptable.
Meanwhile, Ann was still bleeding from her arm. Dr K didn’t even look at it (or arrange for anyone else to look at it for that matter). The increasingly blood-soaked bandages – she had been bleeding now for more than 7 hours – remained where they were.
No, Dr K simply sent Ann away to find her own way to the Hull Royal ED.
And so Ann’s friend had no choice but to drive her there.
At Hull Royal, she was immediately taken more seriously and treated with compassion (I guess the good staff are great and the bad staff are just plain appalling. This time, Ann was lucky and was treated by the good staff). The bandage was changed yet again.
Ann explained what had happened that day at Castle Hill. The assessment staff said that they thought Dr K’s behaviour in sending Ann away without treatment to make her own way to Hull was “unforgivable”. They said that there is no way that Dr K should have afforded Ann any opportunity simply to go home. Castle Hill, they said, was under a duty of care to make absolutely certain that she received urgent medical care. Ann was told that although she wasn’t losing blood very rapidly, a couple of days without treatment would have been enough to put her life in danger.
Ann was moved straight through to Majors and placed on a heart monitor and oximeter.
There, she very quickly bled through the new bandage and it was replaced yet again. The extremely pleasant and helpful A&E registrar told us that unlike Warfarin, Clopidogrel does not have an ‘antidote’. They couldn’t give medication to stop the bleed, it would have to be done mechanically. In other words, they would have to mend the leak.
So, eventually, a surgeon was bleeped to come and put a stitch straight into the leaking vein – without anaesthetic, because they didn’t want to make any more holes in Ann which might themselves cause more bleeding.
By this time, I had escaped from my meetings, has driven the 60 miles from Leeds and had arrived at the hospital.
Before the stitching could happen, there was one further hole they did have to make. They needed to take the risk of setting up a cannula in the other arm to take more blood for testing. We subsequently got the results from both the day’s blood tests. Interestingly, the early test which caused the bleed gave a serum potassium level of 4.4. By the time the later sample was taken in the ED, it had fallen to 3.9 (just below the minimum recommended level for taking Sotalol). We assumed it had fallen because Ann had not taken her Sando-K. Once again, it appeared that the supplements were actually rather important.
As luck would have it, 11½ hours after it had started and just as the surgeon had opened his pack of instruments to do some sewing, the bleeding stopped spontaneously.
So, I took the opportunity to ask the surgeon about the ICD pain. Given that Ann had bled for 11½ hours from a tiny needle puncture, could some internal bleeding or oozing be the cause of the pain around the implant site, I asked. No, he said. There would be obvious external signs if there was anything like that still going on. It was, he said, much more likely that the device was pressing against a nerve. There was no question, he argued, of the pain being caused by anything other than the implant.
Pressure on a nerve explained why Ann was not able to spend any length of time in an upright position. Every time she stood or sat up for more than around 20 or 30 minutes, her pain escalated to the point of unbearable. If the ICD was indeed pressing on a nerve, then it would potentially press even more when gravity added to the pressure. It made so much sense.
It was the first plausible explanation that we had received.
And the exact opposite of what Dr K had said a couple of hours before.
Over the following days, Ann’s pain continued to worsen – quite possibly as a direct result of the ‘rough’ examination of the surgery site by Dr K. By the evening of Monday 2nd November, it was becoming intolerable once again.
I could not begin to explain just how serious the pain had become. Nor could I explain just how distressing it was for me to see the person I love the most suffering so very badly. Wherever we went or whoever we spoke to, it seemed to us that no-one really understood how serious it was. In reality, it seemed that everyone thought Ann was at best exaggerating her symptoms and at worst, imagining them.
So, in desperation, I resorted to taking a couple of short videos on my mobile phone to capture Ann’s suffering. It felt like I was guilty of a terrible invasion of Ann’s privacy at the time but it turned out to be very important that we had a record of the reality of the situation. Ann wasn’t aware I was doing it so there is no ‘playing up to the camera’ going on here. It is worth noting that when these short videos were recorded, Ann had already taken her full permissible dose of paracetamol and codeine… and morphine. She had enough painkillers in her system to mask the most serious pain. But it wasn’t nearly enough.
Below is part of one of the sequences I recorded that day. It is only a short clip. Frankly it was just too distressing to have to watch a longer section repeatedly whilst editing this to conceal her identity. Make sure your sound is on.
Difficult to watch isn’t it? Even worse to listen to.
Remember, this is 6 weeks after the second implant. Ann was assured that she would be back at work by now. In fact, she should probably have been back in the gym. Instead, she was reduced to this. The episode in the video isn’t an isolated incident. Ann was like this every single day. I watched that video in real life every day for months on end. Ann had to actually experience that pain – day after day, week after week, month after month.
More than once, Ann said to me that she wished I had left her to die on the bathroom floor that day – or that I had failed in the attempt to revive her. Can you imagine how hard it is to hear your soulmate say that to you? Heart-breaking doesn’t come close.
This is what the cardiology team at Castle Hill had done to my wife. This isn’t arrhythmia we are looking at. This is bad treatment. They should have been bending over backwards to put this right. No effort should have been spared to lessen Ann’s suffering.
Instead, they pretended it was unconnected to Ann’s treatment and washed their hands of her.
And that is why you are reading this story.
And so, we have reached the half way point. Not in terms of time because our tale lasts more than two years and we are barely six months into it. We are half way in terms of narrative because the story so far has been focused on the damage done to Ann by her treatment. The second half of our tale will deal with the largely unsuccessful attempts to correct or mitigate that damage and the equally unsuccessful fight to get the Hull and East Yorkshire Hospitals NHS Trust to acknowledge their failings and take steps to prevent others from suffering the same fate.
There is still a lot of story to tell, and the second half is every bit as disturbing as the first.
Go straight to Chapter Ten