The inquiry emphasised that Bristol had fallen victim to more general failings in the NHS. The heart specialists were split between two sites – the paediatric cardiologists in one hospital, the surgical teams in another – there were no specific children’s intensive care beds, too few children’s trained nurses, the critical care was ‘highly disorganised’, and too many facilities and too much vital equipment were reliant upon charitable donations. The report repeatedly referred to lack of funding and a blindness to the fact that this could endanger children’s lives.
Both children’s heart surgeons and the hospital chief executive were struck off the medical register. Then followed a public witch hunt to rein in the powerful medical profession. The inquiry concluded that the public should be informed of surgeons’ death rates. Years later we are suffering the consequences – now more than 60 per cent of children’s heart surgeons in the UK are overseas graduates and it is becoming progressively more difficult to fill training posts with satisfactory candidates.
Soon after Bristol, the Department of Health planned significant cuts to the number of children’s heart surgery units. As Oxford was the smallest centre, I immediately knew that it would be targeted for closure. We didn’t have to wait long for the onslaught. Others saw the opportunity to feed surgeons’ results to the media as shrewd business. Staff at the Dr Foster Unit at Imperial College London were in the vanguard of this approach. They provided newspapers with information about topical healthcare issues in return for a fee. In 2004 the British Medical Journal published a paper from Dr Foster on deaths after children’s heart surgery. The information had been extracted from the notoriously unreliable NHS Hospital Episode Statistics drawn together by clerical staff and used in the Bristol inquiry. Fortunately, by then the thirteen existing children’s heart hospitals had begun to collect and cross-validate their own results, then submit them annually to the Central Cardiac Audit Database (CCAD).
The Dr Foster paper reported that Oxford had significantly higher death rates for children under one year of age who were operated on using the heart–lung machine. At the same time, we were accredited with the lowest mortality for babies who underwent non-bypass operations. Everyone knew that Hospital Episode Statistics were hopelessly inaccurate at the time, but now we were obliged to prove it. Oxford demanded an independent inquiry to review their allegations.
What was found cast doubt on any previous investigation from that data source. When compared with the independently validated CCAD database, Hospital Episode Statistics had missed between 5 to 147 operations for each centre and, incredibly, failed to record between 0 per cent to 73 per cent of the deaths. It happened that Oxford’s data, compiled by Drs Archer and Wilson, was so accurate that every single death was included. We were the 0 per cent. In four of the largest centres, between 44 per cent to 70 per cent of the deaths were omitted! As a result, Dr Foster had claimed that the average death rate for all centres was 4 per cent, when it was double that. Because Oxford had the fewest operations and the most accurate data reporting, our mortality artificially appeared worse than other centres. In fact, we were bang in the middle of the range. The investigation concluded that Dr Foster had failed to present accurate numbers of operations, let alone death rates for most centres. What they did was to place potentially harmful conclusions in the public arena.
At this point you might be thinking that heart surgery on babies is difficult enough without having to put up with crap from grandstanders who wouldn’t be allowed to change a baby’s nappy. How many of the other centres were performing the infant Ross procedure? How many would have saved Sophie and Oliver? Who else had the likes of Neil Wilson dilating aortic valves in the foetus? That episode should have led the public to distrust death-rate reporting, but we were not stupid in Oxford. Having won that battle, we knew that the system would search for some other reason to close us down.
Other centres soon came under attack. The press simply failed to grasp that in any statistical ranking 50 per cent of surgeons or hospitals would sit below average. When the overall children’s survival rate in Glasgow was reported as 95.9 per cent against the UK average of 96.7 per cent there was a public outcry. The Scottish press complained, ‘Death rates for paediatric heart operations in Glasgow were significantly higher than in the rest of the UK.’ A whole 0.8 per cent higher! The chairperson of the Scottish Patients Association moaned, ‘This is totally unacceptable and I am very concerned! The hospital may be happy with its figures but I am not!’ Local television gave coverage to the attack, which eroded confidence in a thoroughly reputable centre.
Then came Safe and Sustainable, a full-blown political initiative aimed at closing almost half of the children’s heart surgery centres in England, including the Royal Brompton Hospital. A committee of strategically selected political activists was assembled, who then set about denigrating centres other than their own. Safe and Sustainable decreed that surviving centres should have at least four children’s heart surgeons. Few units had that many and, despite claims to the contrary, there was no evidence that bigger was better. Indeed, most units in the United States were smaller than Oxford. Predictably, this prompted a recruitment drive to bring in children’s heart surgeons from overseas in a quest for survival. Worse still, my only paediatric colleague had returned to his homeland Sri Lanka to establish a unit there, leaving me to work single-handed again.
By now Oxford was ambivalent about whether it could afford to keep the programme should it prove to be more expensive in the future. Yet the poor parents and the region that we served were desperate to keep us. Under pressure from the public, the John Radcliffe Hospital looked for two new paediatric cardiac surgeons. Despite the prestige of Oxford, the only suitable applicants came from overseas. One excellent candidate was an established surgeon from Norway who had trained with me for two years, but he had to withdraw because the move would halve his salary. The second came on a temporary basis, having worked successfully as a consultant independently in a top Australian hospital. By the time he arrived I had been working single-handed for more than two years with no downtime whatsoever. It was approaching the festive season and I was actually told by the management to take the leave owed to me or lose it altogether. With another fully trained surgeon in-house and my family to look after, it seemed a reasonable thing to do.
In my absence over Christmas there was an unprecedented run of complex emergency cases – and some of them died. Hearing about this, I decided that the unit should stop operating until the circumstances of the deaths were understood and the new surgeon exonerated from blame. But I already knew that this was the chance the authorities were waiting for. They would use it to reinforce their case that smaller centres should close. Yet another inquiry was what they needed to kick-start the Safe and Sustainable process. The committee were keen to rake through my results too, undoubtedly in an attempt to discredit the whole unit as in Bristol. But they could not fault my results, nor did they criticise the other surgeon; he subsequently left Oxford, as we knew he had planned to do, becoming a successful surgeon elsewhere. Nevertheless, the frustrated authorities decided that we should not resume operating until we had recruited more surgeons. Perfectly reasonable, but we all knew that this would be impossible as there were none to recruit. Why would anyone want to be a children’s heart surgeon in this environment?
When we closed to babies and children I was finally relieved of the continuous on-call commitment and my self-imposed embargo on alcohol consumption. Certainly, I would miss operating on children, but I simply threw the switch and walked away from it all, liberated from this huge responsibility. But at what price? Perhaps the best facilities for academic paediatric surgery in England were now redundant, and all the expertise I had developed with Wilson to perform combined catheter interventions with less invasive cardiac surgery was wasted, as were our facilities in the charitably funded children’s hospital. Moreover, the regional premature baby unit no longer possessed a
surgeon to clip the ductus arteriosus when it failed to close spontaneously, and newborn infants from our whole region had to travel all the way to Southampton or London for a fifteen-minute procedure that I would normally perform in their cot.
The parents were devastated, especially those whose kids had undergone a palliative procedure and were waiting for me to perform a second corrective operation. They trusted the Oxford team, but now had to travel many miles to surgeons they had never previously met. All our protests went unheeded. Without surgical backup, Neil Wilson could not perform his sophisticated techniques in the catheter laboratory, so he left to head up a unit in Denver, Colorado. Then with their own units under wider threat of closure, other respected surgeons decided to emigrate to America or return to their own countries. Other hospitals challenged with closure fought the process. When allegations of ‘inappropriate process’ and misinformation were used against Safe and Sustainable in court – which we had rechristened ‘Dodgy and Distainable’ – the whole process was discredited and thrown out. As a result, the other threatened centres remain open years later.
After our paediatric service was closed down, other children were not as lucky as Oliver. By then I was involved with a number of different and exciting projects, such as the artificial hearts and cardiac stem cells, but I missed the immense satisfaction that comes from saving a child. Who else gets messages like this last line from Nicky’s letter?
I know how lucky we were as a family to have had you in our lives for that brief moment of time. Every day for us, every family get together, every Christmas or special occasion is that much happier for what you did. Thank you. Thank you. Thank you!
What better legacy than that?
11
misery
One reviewer of Fragile Lives in a national newspaper questioned my overt ‘lack of self-doubt’. This delicate soul had clearly become accustomed to medical writers who peddle introspection and vulnerability as their theme. But believe me, self-doubt is no more a desirable attribute in an experienced heart surgeon than in a sniper in Afghanistan. We both have a job to do. When I perform well, the patient benefits; if I don’t get it right, they die. If the sniper hits his target, the terrorist dies; should he fail to blow their brains out, the terrorist will kill his colleagues. Simple. How does introspection and self-doubt help with that?
I know, however, where this touchy-feely stuff is coming from. The General Medical Council revalidation process requires us to be inward-looking and reflect on our practice, and the legally binding Duty of Candour orders us to tell the truth to our patients or in my case their bereaved relatives. So let me finally share some self-doubt with you and explain why I eventually had to walk away from it all.
The duty hospital administrator tracked me down and bluntly insisted that I admit a patient to our ward because he was about to breach the four-hour waiting-time target in the accident department. This would snatch our last bed from a deteriorating heart failure patient who was scheduled for both aortic and mitral valve replacements the following day. But the manager was only doing his job, so I politely informed him that I’d come down in five minutes and if he cared to push the waiting patient out into the hospital corridor he could dutifully tick his box.
Now I needed to know more about the gentleman being forcibly admitted into my care. He was a fit young builder who had slipped down a staircase on the job, bounced on his right lower chest and experienced localised severe pain, which, with a couple of cracked ribs, was hardly surprising. His concerned work mates called 999 and a massively expensive helicopter with a doctor on board was dispatched to the building site. First, let me pre-empt the ongoing discussion by stating that the pre-hospital emergency services save many thousands of lives. But on this occasion there was another passenger along for the ride – a cameraman. A television production company was making a documentary about the magnificent men in their flying machines, so there had to be a bit of drama in the form of an intravenous drip and chest drain inserted amid the dust and rubble of the building site.
You will appreciate by now that a chest drain is used to remove blood or air from that potential space around the lung known as the pleural cavity. I say ‘potential’ because there is no space between the lung and chest wall unless air has leaked or bleeding has occurred from traumatised arteries in the chest wall. I have no doubt that the doctor had the best of intentions and followed the guidelines for helicopter retrieval at the time, but we normally only insert a chest drain following a chest X-ray so we know what we are treating and precisely where to position it. I have seen a number of these tubes pushed directly into the heart, with fatal consequences.
To insert the drain the doctor injected local anaesthetic between the ribs, then made a stab wound through the chest wall with a scalpel. The plastic tube was pushed into the builder’s chest to evacuate whatever was compromising his breathing, despite the fact that he was neither shocked nor short of breath. He was just bloody sore and doubtless could have walked to the hospital for a chest X-ray. But the man was now certainly bewildered, because the drain made the pain even worse. Nor did he need intravenous fluids – he was anxious and his blood pressure was already elevated. Nevertheless, all of this would doubtless make great television and help raise funds for the air ambulance.
When the patient eventually reached the hospital, a chest X-ray showed the chest drain to be deeply embedded within the substance of the right lung. Why? Because there had never been anywhere to put it – no space created by blood or air. Fibrous adhesions from a previous chest infection had obliterated the right pleural cavity, and he now had a penetrating stab wound of the lung. He did have two undisplaced cracked ribs, but I have played rugby with similar after a few millilitres of local anaesthetic.
Irritated by the prospect of cancelling my own patient, I simply told the doctors in this regional trauma centre to pull out the drain, place a dressing over the wound and send him home with a packet of paracetamol. This is what they do in Cape Town and Johannesburg, otherwise their hospital beds would be overflowing with stab wounds. But none of these doctors had the confidence to do that as they were all filled with self-doubt and introspection. What if something went wrong? Everyone would be sued. So I had to take him to the cardiothoracic ward and do it myself, while the poor heart failure patient was sent home, leaving me with a costly gap on my operating list the following day.
But what about the builder? When his wife asked me whether he needed the chest drain, I had to tell her that he didn’t. Duty of Candour. The reason he was sitting in the ward was a stab wound that bore absolutely no relation to his bruised ribs. He would have been safer coming to hospital by car, if at all. This was just what published Washington Trauma Center studies showed for penetrating injuries. Pre-hospital care can be over-invasive; swoop, scoop and run saves lives. Needless to say, the television programme did not broadcast the sequence – but they should have done. Unless these issues are openly discussed, no one will learn from them. As a young man I wrote and edited two textbooks on chest trauma, and fought hard to have helicopter retrieval introduced to Britain after my experiences in America. But helicopters are only useful for life-threatening problems that need rapid transport over long distances. They are only as effective as those who direct them.
Contrast this aerial drama with the mundane reality of our routine out-of-hours medical services. To be fair, the good old NHS had been good to my parents. My father had a potentially fatal heart attack aborted by a cardiologist friend, who quickly and decisively placed a stent in his occluded coronary artery. My dear mother was operated on very successfully for three separate cancers by colleagues who were determined to do their best for her. And indeed for me. But that was while I still worked in the NHS and had some influence over their care.
March 2016, a Saturday morning. My mother’s two carers roused her, then transferred her from her bed to a chair. One of the carers was recovering from the winter flu bug
, but there was no slack in the system. She had to work. At ninety-two, with dementia and severe Parkinson’s disease, my mother’s life had been restricted to that one room for five years, although she was content enough in her own world. Father had been deaf since working on heavy bombers in the Second World War and was now virtually blind from macular degeneration. But at ninety-four he remained my mother’s constant companion and they were happy together in their own home. Depending upon when I could extricate myself from the hospital, either my wife Sarah or I would feed them every evening.
That morning during the intensive care round, Sarah called me on the mobile. My mother was uncomfortable, with rattling lungs and a temperature, and Dad thought we would wish to know. I realised that this would spell the end for her, so I picked up Sarah and we drove to the house to get some grasp on the situation. Mum was slumped in her reclining chair, clearly agitated and breathing heavily. Her pulse rate was 120 beats per minute and her lips had that slate blue tinge that I recognised only too well. Although her hands were cold and clammy, her forehead was hot, and from my father’s expression I realised that he knew the score. We all wanted her to be comfortable and relieved of distress. I knew how to achieve that. I was there when my grandfather’s kindly GP came to the house when he was dying from heart failure. Morphine helped him on his way. As a junior doctor in the 1970s I did the same for many desperate patients. It is what compassionate doctors do. ‘End of life’ care, and common decency.
The Knife's Edge Page 21