Synopsis – the Whole Story in Brief

I appreciate that most people will have neither the time nor the interest to read the detailed version of the story.  The synopsis below is provided to afford them the opportunity to see what all the fuss is about. Hopefully, reading this will tempt a few to follow the more detailed account. In the interests of brevity, there is far less explanation of the medical detail in this version and much less of the emotional and personal background. With that in mind, here is the short version:

Our local Emergency Department (ED) where many cardiac patients inevitably start their journey, is located at Hull Royal Infirmary. Hull Royal Infirmary has NO cardiology department. Indeed, they regularly have NO cardiologists physically present on the site, especially out of hours. The cardiology department is located at Castle Hill Hospital, some 5.5 miles and 16 minutes away by the shortest possible route. It is not possible to have a direct admission to Castle Hill, even in a cardiac emergency. You must go to Hull Royal.

Ann, a 57 year old, previously healthy and super-fit dental surgeon, first arrived at the Emergency Department of Hull Royal Infirmary in May 2015 suffering from cardiac arrhythmia which within hours became life-threatening. She was transferred by blue light ambulance to Castle Hill where she underwent various tests (ECG, cardiac MRI and echocardiogram but not a promised angiogram) and the condition was treated with beta blockers.

She was discharged seven days later and told that she could return to her normal routine and that she wouldn’t be back.

However, because the angiogram was not performed (despite a family history of  heart disease – both parents had suffered heart attacks), a stenosed coronary artery was completely missed. Eight days after discharge, Ann was re-admitted with severe ischaemic heart pain. This time, the angiogram was carried out and, later, an angioplasty (a single stent inserted in the Left Anterior Descending Coronary Artery).

An un-retouched photograph of Ann’s right arm some time after discharge

Despite the fact that Ann is a dental surgeon, both procedures were performed via the right radial artery.

She was again discharged and again told that she could return to work and that this time, she really wouldn’t be back.

However, Ann had sustained extensive vascular and nerve damage to her right arm as a direct result of the procedures and was not able to return to work. Despite intensive physiotherapy, she was still unable to fully use the arm when she was re-admitted yet again two months later. The damage to her arm was temporary however and would prove to be the least of her worries.

For several weeks, the arrhythmia seemed to improve but in August 2015, Ann was rushed by ambulance to the ED at Hull Royal Infirmary once again.  It took four hours for her to even see a doctor.  Any doctor. She was not at any time attached to a heart monitor.  The cardiologists at Castle Hill refused to come and see her. The ED staff established that she hadn’t had a heart attack and immediately lost interest. We were treated like time-wasters. She was discharged the next day – by a gastroenterologist because there were still no cardiologists present on site – despite her continued protestations (and mine) that her heart was unstable. We had no choice but to go home.

Just a few hours later, she had a cardiac arrest.

She just said, “My heart’s going crazy!” then collapsed. Her pupils were fixed and dilated, her tongue lolled out, her lips went blue. No breathing. No heartbeat. Nothing.  She had gone.

But she didn’t die – or at least she didn’t stay dead. Terrified, crying my eyes out, screaming for her not to leave me, I remembered enough about what she had taught me of CPR to bring her back.

She was rushed straight back to the ED and into resus and later, from there once again to the Cardiac Monitoring Unit at Castle Hill. At Castle Hill, they undertook EP studies with a view to ablation but could not find the aberrant signals that were causing the arrhythmia. so, the decision was taken to implant a two-lead ICD (Implantable Cardioverter Defibrillator) as the prescribed drugs were clearly not yet controlling the arrhythmia.

Left, the implantable cardioverter defibrillator (ICD) implanted in Ann’s chest. Right, an x-ray showing the typical two-lead set up. The leads to the atria and ventricles of the heart can clearly be seen.

The procedure was carried out on August 27th and the device was implanted sub-pectorally (behind the pectoral muscle, rather than in the more usual subcutaneous position). Despite the fact that the cardiologists had prescribed multiple blood-thinning drugs – Clopidogrel, daily abdominal Fragmin injections and soluble Aspirin – to protect the stent (and as a result there was a very high risk of post-operative bleeding) these were not withdrawn prior to the procedure in accordance with normal good practice and no pressure dressing was used following surgery, even though this had been discussed beforehand.  Furthermore, the staff completely failed to inspect the wound site despite Ann’s repeated concerns that all was not as it should be. As a result, Ann developed a massive haematoma extending from her left elbow and across her chest towards her right shoulder.  She was left in agony.

It took 48 hours for the medical and nursing staff to even examine the wound or notice the haematoma even though Ann had told them about the extreme pain it caused and only then, because Ann point blank refused to be discharged until she had been examined by a consultant. When that consultant examination finally took place, they belatedly realised that Ann was correct, the “massive haematoma” (their description, not mine) was finally seen and she was immediately put on emergency IV antibiotics and IV pain killers.

If it had not been for Ann’s refusal to leave, the consequences could have been catastrophic. She had to spend an additional three days on the unit until the danger of infection had receded.  The pain did not recede however and lasted for weeks.

The hospitality’s discharge letter to our GP stated that Ann had been admitted with dizziness, which was nonsense of course. It failed to mention the cardiac arrest altogether.

Four days after this discharge (5th September) the implanted defibrillator shocked Ann after she went into ventricular tachycardia.  Being shocked by a defibrillator when you are conscious and fully aware of what is happening is a terrifying experience. It is not possible to call an ambulance to be taken to Castle Hill (the only route in is via the ED in Hull where there are no cardiologists and they had come close to causing her death just 3 weeks before) so I drove Ann to the cardiology department – and a very scary drive it was too. She was immediately re-admitted.  The ICD shocked her again the next morning and it took a several days to get her stable.  She was discharged 9 days later on the 14th September after a long-overdue change of anti-arrhythmia drugs.

Five days after that, she was back in an ambulance to resus at Hull Royal suffering from severe arrhythmia once again.  She was transferred to Ward 28 at Castle Hill the following day and there it was discovered – completely unconnected to the arrhythmia she was experiencing – that the ICD Implant surgery had failed.  All Ann’s pain and suffering was for nothing.  Her ventricular lead was detached from the heart wall and the surgery would have to be repeated.

The repeat surgery was carried out on September 24th by a different electrophysiologist.  It was supposed to be a 45 minute procedure.  It took over two hours and Ann spent a further 1 hour and 40 minutes in recovery. She believes that she was fighting for her life as her blood pressure fell through the floor.  The electrophysiologist had been unable to find the device despite having x-rays to locate it and so had, by his own admission, he had to “dissect and dissect and dissect” the pectoral muscles. We have since established that considerable damage was caused.

Ann was discharged two days later in unrelenting agony.

She was still in agony 18 months later.

Ann had by now spent 57 nights in hospital and had become less well with every admission.

Nothing was done during this last stay in Castle Hill to address the underlying arrhythmia that was the original cause of the admission.  The doctors had been so focused on fixing their failed surgery that they had apparently entirely overlooked the underlying condition which had put her in the ambulance in the first place.

It was no surprise then that within 48 hours, Ann was again experiencing severe arrhythmia. Because most telephone lines at Castle Hill Cardiology are simply never answered, the only way to obtain treatment (apart from calling an ambulance to take Ann to the wrong hospital) was to turn up at the Castle Hill cardiac out-patient clinic without an appointment.  By doing so at intervals through October, we were able to bring about adjustments to Ann’s drug therapy and, by degrees, there were some small improvements in the arrhythmia.

The post-operative pain continued however, in fact it got worse. When I took Ann shopping, I had to push her around the supermarket in a wheelchair. She was unable to walk more than a few yards.

On October 29th, Ann had a sustained bleed from a routine blood test puncture.  After the local GP surgery was unable to stop the bleeding after several attempts, he sent Ann to Castle Hill with a referral letter – because the bleed was caused by the blood-thinning medications prescribed by the cardiologists and any treatment might have affect on the stent.  Castle Hill Cardiology (in fact the consultant electrophysiologist responsible for the first implant procedure) refused to treat her and sent her away, telling her that she should never return without an appointment. No further appointments were ever issued. It seemed that the department was apparently trying to wash its hands of a difficult patient. They didn’t arrange an ambulance transfer. They just told her, still bleeding, to leave.

Whilst at Castle Hill that day, Ann was also told by the same consultant that that the pain (which started the moment Ann came round from the anaesthetic and has been continuous for most of the time since) was “nothing to do with the ICD implant”.  Ann didn’t believe that and we’re certain that the doctor didn’t believe it either.

The bleed was eventually stopped in Majors at the Hull Royal Infirmary Emergency Department, some 11½ hours after it had begun.

By November 2015, Ann should have been back at work but the pain in her chest remained so severe that she could barely manage to walk unaided from the living room to the kitchen. She could not climb the stairs alone. She spent most of her time in bed and the rest prone on the sofa. She couldn’t stand for more than a couple of minutes. Her life was effectively in ruins. I had to stay off work much of the time to remain with her as her carer. Her professional life was, for the time being at least, destroyed and mine was rapidly heading in the same direction. She was taking both paracetamol and codeine at maximum dosage with morphine on top when the pain was at its worst, which was much of the time.

To see just how awful Ann’s plight had become, brace yourself and watch the short video clip below. Filmed in November 2015, over two months after the second procedure, it provides a glimpse of what Ann had to endure, twenty-four hours a day, seven days a week for months and months on end.

 

As her condition was intolerable and she had effectively been abandoned by the Castle Hill team, I decided to submit a formal complaint on Ann’s behalf to the Hull and East Yorkshire Hospitals NHS Trust. The very detailed complaint, and a Freedom of Information Request for her full hospital medical records were submitted at the end of November 2015.

Meanwhile, our GP remained extremely supportive and helpful. In December, she referred Ann to a specialist pain management consultant back at Castle Hill. He confirmed that Ann was suffering from chronic post-surgical neuropathic pain and prescribed anti-neuropathic pain medication. It didn’t work very well then and he is still adjusting the medication in an attempt to eliminate the pain. There are very few options left.

At Ann’s request, our GP also referred Ann to the cardiology department at the Freeman Hospital in her home city, Newcastle, for a second opinion.  The Freeman is a renowned centre of excellence in cardiology. Ann also had family in Newcastle so there would be some support available locally. Consultations at the Freeman in January and February 2016 decided that further surgery would be the best course of action – to relocate the ICD away from the damaged muscles and nerves and re-implant subcutaneously.  So, Ann would now endure a third implant procedure. The corrective surgery was scheduled for March 2016.

January also saw the first response from the Trust, six weeks after the complaint was submitted, when we were invited to attend a ‘resolution meeting’. The meeting took place in early February. Ann was not physically or emotionally strong enough to attend so I represented her.

Of five clinicians that were due to attend (three from cardiology and two from the ED) only one bothered to turn up. I read an emotional statement prepared by Ann and showed videos of her literally screaming in agony months after her surgery.  To be honest, I was nervous and ill-prepared and with most of the key people missing, we didn’t achieve very much. The minutes of the meeting the Trust later provided were a travesty, wildly mis-recording almost every point discussed.

Also in February, we were given sight of a letter from the Castle Hill electrophysiologist who carried out the second implant procedure to the Freeman cardiology team, written following the resolution meeting to provide some background on Ann’s case. It stated that Ann was on a beta blocker that she wasn’t actually taking and it described events in her medical history in the wrong order and with completely the wrong dates.

Such was the appalling standard of administration at Castle Hill Cardiology that the Freeman never received the letter anyway.

In early March, a second resolution meeting was held with the ED team. They initially tried to assert that Ann’s cardiac arrest had been nothing more than a faint but they admitted to mistakes made in the ED in August 2015 (notably the complete absence of any cardiac monitoring) and even that she had been treated based on someone else’s blood results at one point. Nonetheless, there was no acceptance that the discharge before the cardiac arrest was inappropriate.

The resolution meetings had dealt, very badly, with perhaps 10% of the substance within our complaint. A promised ‘point-by-point’ response to the rest of the complaint was never received.  Given the Trust’s lamentable response, I made the decision to refer the matter to the Parliamentary and Health Service Ombudsman.  However, this cannot take place until six months after the initial complaint unless a ‘final decision letter’ had been received from the Trust. So I requested one. By the time I received the letter, the six months was up anyway.

Later in March, we traveled to Newcastle for the corrective surgery but shortly after admission, Ann began to show the signs of a nasty flu virus and so the operation was cancelled. The procedure finally took place in early May. Within three days, Ann was up and about and had already relinquished the post-operative morphine. A matter of weeks later, Ann was able to return to work after a 15 month absence. The contrast with the outcomes at Castle Hill could not possibly have been greater.

The photographs above tell a story. Top left, Ann is still substantially bed-bound three months after the second procedure at Castle Hill, long after she should have resumed a normal life. Top right, just two months after the corrective surgery at the Freeman, Ann is transformed and is able to hold our new-born grandchild whereas after the Castle Hill surgery, she couldn’t even use a knife and fork. Bottom left, is the ICD implant site following the second procedure at Castle Hill, taken in April 2016. This is a sub-pectoral implant, so behind the muscles. The ICD should not be visible. The photograph bottom right was taken just over a month later and is the implant site after the corrective surgery in Newcastle. This is a shallow sub-cutaneous implant. So, the generator should be more visible in this second shot. Draw your own conclusions.

 

When Ann returned to work, it seemed that the nightmare was at an end.  Sadly, that did not prove to be the case. Eventually, the chronic pain would return.

In August 2016, we received confirmation that the Parliamentary and Health Service Ombudsman would investigate our complaint, which had been referred to them in May, exactly six months after the original complaint was submitted to the Trust. It was not until November that the investigation actually began.

The PHSO wanted to reduce the many issues down to three of the most important and so we agreed that the following would be selected:

  • The treatment (or lack of appropriate treatment) in the ED in August 2015 that led to Ann’s cardiac arrest.
  • The failure at Castle Hill to prevent, discover and treat the massive haematoma that followed the first implant procedure.
  • The conduct of the second procedure that left Ann in debilitating, chronic pain (which by now was returning with a vengeance).

The case file was passed to the medical experts for review in December 2016 and in January 2017 we received the draft report. The contents of this are confidential (whereas the final version we are free to publish) but as the two documents are in fact identical, I am able to say that in the draft report, the Ombudsman found in our favour on the first two issues, recommending that the Trust issued an apology, paid a token amount of compensation to us both and instigated an action plan to ensure that the errors were not repeated.

On the third, they concluded that, as the procedure had only taken 40 minutes, the Ombudsman supported the Trust’s assertions that the procedure had been routine and  that it had been carried out appropriately.

I knew for certain that this duration was wrong.  I had been there at the time and I knew that Ann had been in the ‘Lab’ (the electrophysiology operating theatre) for 3 hours and 40 minutes so this 40 minutes figure was quite ridiculous. I had also read the roughly 300 pages of medical notes and had found nothing to confirm the exact duration of the second procedure. So I challenged the finding on the third issue and asked the Ombudsman to provide me with a copy of the evidence on which they had relied.

In January 2017, the Ombudsman supplied me with a copy of the evidence in question, along with the ‘final’ report. So, I could now see what they had relied upon but because they simultaneously issued the final report, I was denied the opportunity to comment on the evidence and have the report adjusted.

That didn’t stop me trying.

The evidence in question turned out to be the contemporaneous notes made in the Lab during the second procedure.  These were completely new to us and had been missing from the set of notes provided under the freedom of information request.  Out of hundreds of pages of notes, the only pages apparently missing were the ones that were the most fundamental to our complaint. We can only conclude that these pages were deliberately withheld.  The odds of such a vital omission being accidental are just too long to be credible.

On studying the notes, it was possible to see that the Ombudsman’s medical expert had made a terrible mistake. At first glance, they appeared to support his conclusion. Ann’s arrival in the Lab that day the previous September is recorded at 10.20.  Her departure time is strangely not noted. Further down the page, further notes begin “11.00”.  The medical expert saw this and drew the sloppy conclusion that the entire procedure took from 10.20 to 11.00 – so just 40 minutes.

Had he read further, he would have drawn a very different conclusion. First of all, the passage that began “11.00” actually reads “11.00 – patient anaesthetised”.  The 40 minutes had been the preparation for the procedure, not the procedure itself. Had he turned the page, he would have seen that the drugs administered when the patient comes round from the anaesthetic were administered at 13.05. So, the procedure actually took 2 hours and 5 minutes.

Throughout the complaints procedure, the Trust had maintained that the procedure took less than an hour and was routine.  Here, we finally had proof positive that they were not telling the truth.

I contacted the Ombudsman and explained their error and asked that the report was re-issued with a suitable correction and quite possibly a very different conclusion.  I was told that it was too late.  The final report was indeed final. The only path now open was to lodge a formal appeal.

Needless to say, a detailed appeal, with the error fully explained and the relevant notes attached was immediately lodged. In March 2017, I received an email to say that the appeal ‘did not meet the review criteria’.  The Ombudsman would not admit its mistake and was instead brushing the matter firmly under the carpet.

I was disgusted and extremely shocked.  These people were supposed to be there to prevent this sort of thing, not join in with it.

In April 2017, in a final attempt to elicit an appropriate response, I contacted the Chief Executive of the Hull and East Yorkshire Hospitals NHS Trust, Mr Chris Long and made a request for a one-to-one meeting so I could explain to him in a polite conversation what is really happening in the organisation he leads and what I believe to be the very real risks to the lives of the Trust’s cardiac arrhythmia patients arising from their approach to treatment both at Castle Hill and the Hull Royal ED..

Mr Long replied on 22nd May and declined my request.

I had reached the end of the road.

A year and a half of effort to get some justice for Ann and some improvement in the Trust’s practices in order to protect and possibly save the lives of future patients had all come to nothing.

So, as they had declined to hear the full story privately, I decided to take the matter into the public domain which is why you can now read this story. It shouldn’t have been necessary to write it at all but I simply ran out of alternatives.

I encourage you to read the longer version of the story. This synopsis is by its very nature superficial. If nothing else, please take a look at Chapter Fifteen which tells how Ann has fared since the corrective surgery in Newcastle in May 2016.

Thank you for reading. Please share the story on social media if you can. More cases like Ann’s will only be prevented if the Trust is forced to learn from its errors.

 

 

 

 

6 thoughts on “Synopsis – the Whole Story in Brief”

  1. One grammatical correction – around the April 2017 stage (80% through the text) you use “illicit” when it should be “elicit”. Hope you get justice very soon.

    1. Thank you Dara. I have made the correction. Please let me know if you spot any more. Thanks too for the best wishes. Justice is unlikely I think but if I can bring about changes that make the journey for others somewhat better, then it will have been worth the effort of writing the story.

    1. Thank you so much. As you will see in the next chapters, the third procedure in Newcastle did bring about a significant improvement. However, the damage done at Castle Hill is permanent and Ann will have to live with the consequences for the rest of her life.

  2. I read this account with mounting horror, and it actually made me tearful. My husband suffers from a condition which, when he is having an attack, involves unbearable neuropathic pain and as a helpless onlooker I can understand how this makes you feel, let alone your poor wife. The fact that this was avoidable, plus the absolutely ridiculous ‘administration’ of these two hospitals beggars belief. I can only imagine the anger and despair you have both been driven to – especially when there appears to have been no satisfactory resolution. I do hope your wife recovers to the best of her ability. How lucky that you are as articulate as you are -what hope do the rest of us have under similar circumstances if the bodies that are supposed to protect us behave like this?

    1. Thank you for your kind words Heather. It helps to know that there is empathy out there when it has been so conspicuously absent amongst the doctors.

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