Ten days before the scheduled procedure in Newcastle, Ann was instructed to stop taking her blood thinning medication. This was nothing to do with the haematoma following the first implant – the Newcastle team knew nothing about that. It was routine good practice which Castle Hill hadn’t seen fit to follow.
We travelled to the North-East on Tuesday 3rd May and we went for a rather special lunch before Ann was admitted in the afternoon and went ‘nil by mouth’. It also served as a distraction from the concern we both felt after the two previous implant procedures had ended disastrously. However, the worry was balanced by the hope that this would finally bring an end to Ann’s suffering.
After lunch, we arrived once again at Ward 27, the Freeman’s equivalent to Ward 28 at Castle Hill, which was for electrophysiology and interventional cardiology patients. The patients in the bay were there for EP studies, angioplasties and implants so it all felt familiar and yet also a little intimidating. That unique soundscape – the beeps and alarms of the cardiac monitors – was just the same but it was strange not to know the names of the nurses or the layout of the hospital. Ann had spent so long as an in-patient at Castle Hill that we even knew the tea ladies and the porters. Here, we were strangers again.
Elsewhere in the department were the cardio-thoracic surgery and even the heart transplant patients. Later, on my way out, I was passed by a surgical and intensive care team taking a young child from one of the operating theatres, I assume, to the Cardiac ICU. The little guy was less than two years old and was attached to more machines than I would have though possible and had at least half a dozen doctors and nurses in attendance. It looked like he had had open heart surgery, or perhaps even a transplant. His anguished parents walked along beside his bed and all the attached life support machinery. I remember feeling overwhelmingly guilty for how small our problems seemed when compared to what that young couple were coping with. I’m not a religious person and so I am not one for prayer but I prayed for that little boy and his parents.
Ann’s rather less daunting revision procedure was due to take place the following morning. This time, there was no sign of any infections so everything would go ahead as planned. I had been told that I would have to stick to visiting hours so for the first time, I wouldn’t be there when Ann went down to the Cath Lab.
By 11.00am on the Wednesday, Ann was already back on the ward, with her implant repositioned and she was sore but apparently fine. By the same evening, Ann could already tell that things were going to go a lot better than her previous implants.
The following morning she sent me a text:
“Much better today. Huge improvement from last surgery”
And she was informed that she would be discharged the very next day.
Before discharge, she was given an ECG and reviewed by Dr S. He said that the set-up of the ICD done at Castle Hill made no sense. The base pacing rate (the minimum level below which the ICD would not allow Ann’s heart rate to go) was set at 70BPM and the accelerometer was still switched on so upwards pacing was still mechanical and caused by any movement. As a result, Ann’s heart rate was at or above 70BPM for 80% of the time. Dr K at Castle Hill had said that the accelerometer would be switched off but it obviously hadn’t been done (like so many other things).
Dr S reset it to a more natural base rate of 65BPM and switched off the accelerometer so Ann’s sinus node could decide when to speed things up. She felt better almost immediately. Ann’s resting rate before her illness had been consistently below 60BPM so this new rate and the lack of mechanical upward pacing felt altogether more natural and comfortable.
Back at home, Ann had the dressing removed the following Monday 9th May. The scar was smaller and neater than expected. There was, of course, no sign of any haematoma.
By May 13th, just 9 days after the surgery, Ann was able to walk half a mile to the newsagents to buy some milk. It was a year to the day since she had gone to the GP to report her first palpitations. It had taken a year to fix what should have been fixed in a few weeks at most.
A week after that, Ann was able to travel with me to Kent for a family funeral. Not only was she able to cope with 8 hours in the car, but she was able to stay on her feet most of the weekend. The pain was already improving enormously. Another week later, Ann travelled to London to join our daughter-in-law’s baby shower (our first grandchild was due in June). A week after that, we flew to Cornwall for a week-long holiday and, remarkably, Ann was able to join me hiking along the South-West Coastal Path. We simply couldn’t believe the transformation.
The same period after the second implant at Castle Hill, Ann was still mostly bed-bound and only able to spend any time outside in a wheelchair.
It was beginning to look it really was third time lucky. The relief was enormous.
Because Ann increasingly needed less support, I was finally able to resume travelling with my work. Whilst Ann was in London at the baby shower sipping champagne with our daughter-in-law and her friends on a cruiser on the Thames, I was in Italy visiting a potential project. Some normality was returning at last.
Ann’s improved health also meant that I could find time to look at the letter from the Chief Executive of the Hull and East Yorkshire Hospitals NHS Trust which had been lying neglected since late April.
I finally replied to it on 29th May – six months to the day after my complaint had been submitted.
As six months had passed, I was now free to refer the complaint to the Parliamentary and Health Service Ombudsman. But first, I had to rebut some of the nonsense in that letter. The Trust had of course completely ignored everything I had told them and resolutely stuck to the untrue statements in their previous communication.
Here is my reply in full. You will note that I have not concealed the name of the Chief Executive of the Trust. That is because, ultimately, the buck stops with him – and, as you will read in later chapters, he had ample opportunity to avoid being singled out:
Dear Nurse Q,
I am in receipt of the letter dated 25th April and signed by Ms T on behalf of the Chief Executive, Chris Long. This response is copied to both of them.
I will respond to some of the points in a moment but can I begin by thanking you for your attempts to resolve the issues raised in my complaint made six months ago today. It is not your fault that the answers you have been given to pass on to me are unsatisfactory, incomplete and in some cases, simply untrue. I know that your concern for Ann is very genuine and so I’m sure you will be interested to hear that Ann is recovering well following the corrective surgery at the Freeman Hospital in Newcastle to reposition the ICD from its sub-pectoral position to a sub-cutaneous site. After a false start in March when she was too unwell to undergo the procedure, she finally had the operation on Wednesday 4th May.
Four weeks after the last procedure at Castle Hill, Ann was still needing to take Morphine and I was pushing Ann around the supermarket in a wheelchair. After the procedure in Newcastle, she was up and about the same day and was able to withdraw the morphine after just 3 days. It is too early to say whether the chronic neuropathic pain caused by the September surgery at Castle Hill will now disappear altogether but Ann will shortly begin reducing the dose of Pregablin, so we will know very soon. However, the remarkable improvement in her mobility and general sense of well-being suggest that we have reason to be optimistic. All being well, she hopes to return to work in early July, around fourteen months after she was first taken ill. Our first grandchild is due to be born in just a few weeks and Ann’s earnest hope is that she we will be well enough by then to hold him without pain.
And so, to the letter. I have no intention of answering every paragraph but I am unable to allow some points to stand:
“Is the ICD the cause of Ann’s pain?”
The Trust seems very determined to deny this blatant cause and effect. There was no neuropathic pain before the September procedure. There was chronic neuropathic pain from the moment the procedure was carried out. Dr B seems to be the only person unable to join the dots.
Incidentally, Dr B’s assurances reported in the letter that the generator had not dropped completely contradict what we were told at the time. In fact, it was Dr B himself that told Ann and my daughter Kate that that the generator had dropped. Indeed, he explained in some detail that he had chosen to leave the generator in its dropped position rather than attempt to lift it back to its original location. Why he should choose to tell an entirely different version now is completely mystifying. Clearly, both cannot be true.
You will recall that Dr B had explained in great detail at the first resolution meeting that he had left the ICD generator in its dropped position to reduce the likelihood of further movement and had inverted it so that the terminals faced downwards. He had earlier told Ann that he had left it in the dropped position the day after the surgery in September 2015. He was now asserting that the generator had not dropped. I will leave you to form your own opinion as to Dr B’s honesty.
My reply continued:
“Why has Ann not had an examination post procedure?”
Thank you for acknowledging that your earlier assertion that Dr K examined Ann post procedure was also untrue.
I am aware that Ann was “reviewed” post procedure on 27th August. Sadly, those reviews did not include an examination of the operation site. As I have already said, the site was not examined by anyone in the 48 hours following surgery, so the haematoma was allowed to develop untreated.
“No clinical errors were made during both procedures”
At Newcastle, Ann’s Clopidogrel and Aspirin were withdrawn ten days before the surgical procedure in accordance with normal good practice. At Castle Hill, they were not withdrawn before the first procedure in August. That was a clinical error which led to a greatly increased risk of haematoma.
a) Ann’s history of haematoma (refer to what happened following the angioplasty in June),
b) the fact that the Clopidogrel and Aspirin had not been withdrawn and
c) a specific discussion before the procedure between Ann, myself and Dr K that a pressure dressing would be used,
no pressure dressing was in fact used after the procedure.
That was a further clinical error which, combined with the error above, caused the massive haematoma that led to so much pain and suffering for [Ann] (and, I believe, also caused the lead displacement which in turn led to two further operations and nine further months of inability to work for [Ann] that should not have been necessary at all).
Following the first procedure, despite Ann’s obvious pain and protestations, no member of the medical team examined the wound site to check for haematoma. In that there were many members of the team who should have done their job more thoroughly, this constitutes a whole string of further clinical errors which only served to make matters worse. Indeed, the hospital tried to discharge Ann without examining her and it was only when Ann refused to be discharged that Dr D was called and found the haematoma and prescribed emergency intravenous antibiotics and painkillers to reduce the immediate danger to Ann – a danger which was the direct result of those clinical errors.
As for the second procedure, a month or more on morphine, a month or more not even able to climb the stairs alone. A month or more unable to leave the house. I had to take the best part of two months off work to nurse Ann following the second procedure. Month after month of chronic neuropathic pain, mind-numbing drugs and an utterly destroyed personal and professional life. These are not the consequences of an error-free procedure.
I know that the medical team will maintain that the procedure was routine and there was nothing out of the ordinary. I don’t believe a word of it.
Perhaps the photographs below will help.
The first, below, was taken at 8.30pm on Wednesday 20th April 2016, roughly seven months after the second procedure but before the corrective surgery at Newcastle. Please bear in mind that this is a photograph of a sub-pectoral ICD implant, as recommended by Dr K at Castle Hill because the implant would be more discreet. As you can see, far from being discreet, the ICD generator is ‘sticking out’ like a plaster on a sore thumb. It wasn’t as bad as this all the time, but often protruded in this way at times of particularly severe neuropathic pain. To the untrained eye, it appeared that the top edge of the generator had come through the pectoral muscle wall. Even the staff in Newcastle were sceptical about this when we described it and they specifically asked me to send them a photograph. This is the shot we sent to them. Look at the shadow of the edge of the t-shirt to see just how far the device is protruding. Does it look like the result of a routine procedure to you?
By contrast, the second photograph below was taken at 2.00pm TODAY, three and a half weeks after the corrective procedure at the Freeman:
As you can see, the ICD is no longer visible – DESPITE THE FACT THAT THIS IS NOW A SUB-CUTANEOUS IMPLANT! No swelling, no haematoma. As I have already said, Ann is making a very rapid recovery from the surgery. Finally, it seems that the procedure has been carried out with competence.
So, Dr B can continue to tell me until he is blue in the face that everything was normal with that second procedure and that no clinical errors were made but I’m afraid that just isn’t believable.
“Dr B advises that the procedure took one hour with no complications”
Dr B’s assertion is not supported by the facts. I was in the department the whole time. Ann was in the Lab for three hours and forty minutes. Dr B told Ann the next day (and my daughter who was also present and recalls the conversation in great detail) that he was “at the point of asking for help”, such was the difficulty he was having with the procedure. Again, the response is simply not credible.
“The outstanding issues have been looked at again…”
You have only dealt with the issues in your minutes of the resolution meetings, not with the complaint itself. For instance:
You neglected to carry out an angiogram during the first admission, completely missing a stenosed coronary artery. Not addressed.
Repeated inappropriate recommendations by junior doctors to prescribe long term Amiodarone to an otherwise healthy 57 year old woman. Not addressed.
Unanswered correspondence from GP to Castle Hill. Not addressed.
Inability to contact cardiac secretaries at Castle Hill. Not addressed.
Multiple or incorrect appointment letters sent out. Not addressed.
Dr K’s appalling behaviour towards Ann when she attended with an uncontrolled bleed. Not addressed.
Emergency ICD telephone number NEVER answered. Not addressed.
And I could go on.
I wonder if I called that emergency number now whether it would be answered. I doubt it.
You see, the problem I have is that I don’t think the Trust has truly listened to anything I have said. I don’t believe that anything meaningful has changed. I don’t think that another unfortunate patient following the same path as Ann would have a better experience than she did.
In short, my complaint has achieved nothing. That just isn’t good enough.
I therefore have no choice but to refer the matter to the Parliamentary and Health Service Ombudsman and will be doing so in the coming days. I hope he has more success.
Nurse Q replied 10 days later:
I have just returned from leave and wanted to acknowledge your email. I am really pleased to hear that things have improved for Ann and your family generally and wish her well in her continued recovery.
I am sorry that you remain dissatisfied with your complaint response and understand that you are referring this to the PHSO and will of course comply fully with their investigation.
And thus ended the prolonged correspondence tennis match between me and Nurse Q. As before, she completely ignored what I had said. She failed to contradict, question or challenge anything in our version of events (she couldn’t after all, because it was all accurate and true).
I don’t blame her. She was only doing her job. It wasn’t her fault that her role entailed pedalling hopelessly inaccurate and untrue assertions from the clinicians. Nurse Q got paid to say that the sun was shining, even when it was very obviously pissing down.
I do blame the Trust however.
Here was an opportunity to learn from some terrible events that should never have happened and in learning those lessons, bring about genuine improvements in patient safety. The Trust knowingly and deliberately chose not to do that. The Trust refused to acknowledge that its systems could be improved because to do so would imply that they were imperfect in the first place. The Trust allowed future patients to be exposed to the risk of the same mistakes being made again and in so doing, they placed lives at risk.
That is worth repeating.
My belief is that the Trust chose to put lives at risk by failing to act.
That was unforgivable. I had to get the Ombudsman involved to see if he could succeed where I had failed. I could not allow the Trust to get away with their abdication of responsibility.
And so the Ombudsman will be the subject of the next quite remarkable part of this story. Remarkable because, as we discovered to our utter horror, the Ombudsman turned out to be every bit as incompetent as the Trust.