By luck and good fortune, I am not the parent of little Charlie Gard whose blessed little soul deserved a better break than he got, a much better break. I said things about the NHS when this story broke, all of which I adhere to but having studied many of the court documents and judgments in the matter, there is much I would like to add.
His parents, Chris Gard and Connie Yates, have suffered more in the past year than most parents will know in a lifetime. They are to be commended for the love and dedication they have shown to their son. Tales of the exhaustive effort they have both put in to his care, to their research and their fight for the justice they believe Charlie deserves, are beyond the understanding of most of us.
Would that any of us had ever tested our parents in this way or been so tested by their child, they could not have done one jot more and that is absolutely as it should be. Charlie is a part of each of them. He shares their Chromosomes, their DNA, their “soul” if you will. He is of them, they are him. We are all born with certain nature-driven forces and one of those is survival, another is the protection of our children which, with the longer view, amounts to the same thing, the protection of self, of genetic reproduction. Charlie is as much a part of them as each of their limbs but almost as crucial a part as their very heart.
That said, and whilst I pay them my very highest respect, I do believe that they were ill-advised, poorly guided and therefore, ultimately, wrong to continue the fight as long as they have. I’m sorry if I offend anyone, that’s not my intention. We live in a world where amazing things are possible with the benefit of modern science and medicine. We have become, in the eyes of our ancestors, very nearly immortal. We have conquered diseases that have laid waste to millions in history and today those things hold virtually no fear for us whatsoever. That’s an amazing achievement. It leads us though into a sense that everything can be cured, can be fixed, if only we can find the right doctor, the right drug, the right treatment.
When Aysha King’s parents “abducted” their own child from the NHS hospital in Southampton that intended to treat his post-operative brain tumour with whole brain radiation, I applauded them and damned the doctors – and I do so again today. The parents had done their research. They had read widely. They had discovered that there were more advanced treatments, Proton Beam Radiation in this case, that had an at least equal chance of success but more significantly, a greatly reduced potential for damage to the healthy brain tissue. The doctors were outraged and the hospital, through the auspices of the Courts, turned the parents literally into fugitives from the law, made Aysha a hostage to fortune and denied him access to privately funded treatment in another country. The parents were ultimately successful, as was the treatment. There are no long term guarantees but Aysha is now a five year old happily back at school with his friends this past year or so. It’s possible this outcome could have been achieved “the NHS way”, it’s possible not. The point is that Aysha was as healthy and whole as any little boy could be, post the surgical removal of his brain tumour. Proton Beam therapy had a virtually zero chance of making this situation worse, whilst attempting to kill residual cancer cells to prevent their regrowth. Whole brain radiation *without question* kills healthy brain cells. The noticeable extent/effect of this is unknowable on one so young but the outcomes range from fine to dire.
If this was my child, I’d have done exactly the same thing but I wouldn’t have been so nice about it. The key issues that influence my judgment in this are:
- The parents’ rights over the child – in the absence of any good reason to the contrary – are paramount. They are the child. The child is them. If they have weird religious beliefs, if they have less than normal intelligence, if they appear to be acting irrationally in some way, perhaps suggesting mental health issues, then there is a question which the Courts may choose to examine but in all normal circumstances, they should be respected entirely.
- The parents were not withdrawing the child from treatment, they wanted an alternative treatment, a better, safer treatment which the NHS could not provide in the UK – though they could have paid for it in another country.
- Aysha was perfectly able to be transported to the appropriate place for treatment.
- There was no cost to the NHS who had already declined to fund it, the parents had determined to fund it themselves – which they did with help from donations after the event.
- Aysha had suffered no permanent damage thus far that affected his quality of life. Given the successful outcome of the treatment, he had every possibility of living at least a substantially extended and happy life and possibly (I hope) a very full and lengthy one too.
The same cannot be said for poor little Charlie. When the condition was eventually diagnosed in October last year, there may have been the faintest glimmer of hope. Vanishingly small, by January such hope was gone. It was at this point that skilled and intelligent medics would have assisted Charlie’s parents to take the right decision, a decision that was in everyone’s best interests.
By this time however, just as in the Aysha King case, relationships between doctors and parents had started to deteriorate. Trust had been broken, lost. I have seen such circumstances more times in my life than I care to remember. I’ve experienced it myself, I’ve experienced it with loved ones – children, wives, mother, friends.
Trust between a patient, or parents, and the medical team treating them is paramount to ensuring the very best care and when it’s lost, it takes a very special effort to regain. The arrogance of many in the medical profession is not limited to the NHS but it is certainly exacerbated within the statism of that organisation. Heroes of modern medicine like the American, Atul Gawende and our very own Henry Marsh are such wonderful human beings precisely because they recognise this character in their profession but more importantly, in themselves. It’s a very rare thing in my experience. Doctors are much better at disguising it these days where once upon a time they didn’t even bother.
Back in the mid-seventies, at the end of that incredible summer of ’76, my wife was in hospital preparing for the birth of our first son, Marc. We had a close friend who was a midwife, originally from the Bronx in NYC but living close by. As was very much the feeling back then, my wife wanted to try to go through labour without the use of drugs. On the one hand she wanted to experience the entire process in full command of her senses and on the other, she was concerned (as many were at the time and many are today) with the effect of those drugs on the ‘fragile’, soon to be born foetus. She had made me swear that, no matter what happened, unless she was in physical danger, I was not to allow her to cave in to temptation nor to allow anyone to administer drugs, unless she specifically requested them.
Sharon, our midwife, was on another call and we had to wait for her to attend. In the meantime a succession of nurses determined to make Paula’s time as difficult as possible. She had explained her choice to them, calmly and rationally as they looked, one to the other as if she were quite mad. I even recall one of them making that circular motion with the forefinger beside one temple that is often used to signal someone who’s gone a bit “doolally”. I had explained it too, but constant efforts were made not only to encourage Paula to relent but to demean her and me, for her decision.
The labour, though prolonged was not at all problematic (says the husband) from a medical perspective. I think the comment that got to me wasn’t the nurse’s “What’s the matter, love, won’t the meanie (me)let you take the drugs? Don’t you worry about him, we can give it to you now, all you have to do is say the word.”. No, it was later when the arrogant little prick of a doctor said to her, as if we weren’t even present let alone three feet away, “Come on nurse, these two seem to know more about it than we do, let’s leave them to it” and promptly left the room, never to be seen again. I kid you not. All this simply because of Paula’s determination to give birth, drug-free. That may sound worrying but we both knew that Sharon wasn’t far away and we were just glad to see the back of them. This had been a day we had both looked forward to for so long and for the last two hours they seemed to have had no other objective but to make the whole process a misery. Sharon arrived, she was a diminutive, beautiful angel of a thing with her movie-style Bronx accent, her humour, her compassion and her professional skill.
Marc Alexander, all ten pounds of him and a future PhD (yes, I’m proud) emerged crying into the beautiful September dawn and I was speechless with delight, with awe and wonder. We hugged, we laughed, we cried, we danced, the four of us, alone in our little cell with not a doctor or nurse in sight. It was one of the most incredible days of my life. I would have fought a wounded tiger to save that child. I would have picked a fight with every member of the hospital staff if I thought it necessary to defend my wife and child. I do understand why Charlie’s parents felt the need to fight for him and why they felt as if they ended up fighting the entire world.
My tale is one but many of such tales I can tell but this one relates most closely to what Charlie’s parents had to face, albeit in comparatively benign circumstances. Alone in a foreign world that operates in a foreign language, dependent on those with far more knowledge than you, when you and your loved ones are at their most vulnerable, ever….that’s hard, and we usually feel we have to yield, even when we don’t agree or we’re simply not sure or uncomfortable about what’s being said and done.
For those of us who question, who don’t accept that any individual has all the answers in any situation, life can become difficult. I learned early on and I practiced this in the tale I related above, that it pays to smile, to be polite, to ask nicely, to always appear open to persuasion, to never appear absolute. In most walks of life, it comes naturally to most of us but I’m describing something closer to grovelling. In situations like this, it comes hard and it grates but usually it makes things easier and often achieves success, though not during Marc’s entrance into the world, it must be said. The question is, why do we feel the need to have to put on such aires and graces? “Do you think that….?” “Could it be…..?” “Might it not be….?” It’s to counter arrogance. That simple. It’s demeaning and disgraceful that I should feel I have to do this but if you ever needed evidence, it’s there in every NHS building: “We have a policy of zero tolerance to abuse! You will be summarily executed if you disagree with any member of the staff”. Well, ok, I added that last part but the implications are clear. As a member of NHS staff, I can say, do or not do anything I like but don’t you dare react to the persistent prodding of my finger in your chest, for if you do, there’ll be hell to pay.
It’s all pervasive this sense of entitlement, of superiority, of higher knowledge. I don’t get it from my window cleaner, I don’t get it from my taxi driver, I don’t even get it from my highly paid private doctors, so where on earth does it come from, why is it there and what do we have to do to get rid of it? Well, it all comes down to the fact that the healthcare we receive in the NHS is “free” and we should be grateful for what we’re given. You’ll rarely heard the words said out aloud but it’s there for all to see.
You disagree? Many do, this indoctrination is seventy years old and backed up by centuries of cultural superiority. It is ingrained in the British psyche and has become as deep and blind a faith as any that theistic religion has to offer. Let me put it to you this way: If Charlie Gard was being treated in a good private hospital and the parents had asked for him to be referred to another doctor, in another hospital, in another country, neither the hospital nor the doctors would have had a moment’s hesitation in picking up the phone and making the arrangements – all at the expense of Charlie’s parents, naturally. The very last thing that would have crossed their minds would be to contact the lawyers and start Court proceedings.
It’s not the medicine, you understand. Most doctors working in private practice earn their ‘basic’ living from the NHS and most of the nurses are moonlighting via the agency or were trained and practiced in the NHS – some continue to exhibit many of those tendencies in private practice. It’s the institution, the institutionalisation of mind. The NHS is the first Nanny of the Nanny State. Doctor knows best, sit there patiently [sic] and be a good boy. We might talk to you when we think we have something you might understand, impoverished, uneducated wretch that you are.
You impune their intelligence, their position, their character when you suggest, with all the palliative, cringing words at your disposal, that there might just possibly be another way?
Another tale, it occurred a few years after the first, late seventies now. Paula called me at work to tell me she was in extreme pain, she’d done something to her back. She assured me she’d be fine and she’d just take some painkillers and lie down. When I got home I discovered that she had taken to crawling on all fours as she found it that painful to stand, let alone walk. I determined to take her to the doctor first thing in the morning, completely forgetting that it was the Easter weekend and, naturally, because no one ever gets sick outside of office hours, the surgery would be closed. When I called I discovered that Paula’s doctor was actually pulling a shift at the local cottage hospital over the holiday and I spoke to to him there, on the phone. He said I should bring Paula to him as he couldn’t leave the hospital and advised me that no ambulance would be available, because it was Easter, don’t you know, and this wasn’t an emergency. I explained that we lived in a cottage that had no vehicular access and that half of the path, of some two hundred yards to the road, was up a very steep incline. He left it to me to figure out the where’s and whyfores but he was there “if she wants to see me”. It was obvious to me that Paula was walking nowhere and after scratching my head I remembered I had a sack barrow at home – you know, the kind of vertical trolley used in marketplaces and warehouses to move packages and, well, sacks around.
I explained the plan to Paula. I warned that once I started up the hill I’d have to keep going and that was going to mean me taking a potentially very frightening run at the thing, to gather momentum, you understand. She looked terrified but her existing pain was worse than her fear so she agreed. It was painful, but she managed to bring herself upright at the front door, stand on the rung at the bottom and lean backwards when I said, ‘when’. Thankfully, she probably weighed no more than eight stone, a teensy bit less than me at the time. I figured, “You can do this, Robin, you can do this!”. We set off. When I was about twenty or thirty yards from the start of the incline I wound up my pace until I was literally running, full pelt. I wish I had been in front, so I could have seen what I was certain would be a look of abject fear on Paula’s face! The momentum, of course, was nowhere near enough but somehow my legs and arms found hidden resources from where, I do not know, but we made it to the top of the slope and I collapsed, breathless and in considerable pain, at the roadside.
At the hospital we didn’t have to wait too long to see the doctor. His name escapes me but, I promise, I would happily publish if it comes to mind. He and Paula went into a room for the examination whilst I, as was more than customary at the time, sat outside. After ten minutes the doctor came out, Paula propelling herself behind in the wheelchair she’d now been supplied with.
The doctor turned to go back into his office, with no intention whatsoever of addressing me. “What’s the verdict, doctor?” I enquired, politely. “I’ve told your wife”, he responded in that matter of fact voice that intones “as if it was any of your business”, “She’s slipped a disk. There’s nothing can be done except rest. She needs to go to bed for at least six months and do nothing strenuous for at least ten years.” You’ll think I’m making this up, I promise you, every word may not be 100% accurate but the absolute sense and the approximate wording I have related, is precisely what he said.
Meaning it as a genuine enquiry, and in the most decorous and delicate tones, I requested his opinion as to “What do you think of the benefits of Paula being seen by an Osteopath, doctor?”. His face reddened, instantly as if I had pressed a button that flushed blood from a bucket into his veins. His brow furrowed, his jaw tightened and in a low voice, but leaving no room for doubt, he determined, “If she see’s an Osteopath, that’s the last she sees of me! I’ll have nothing more to do with her”.
Now I’m not proud of this but I was young, in love with the mother of my child and in my late twenties, by which time I had come across all sorts of people in life, from angels to pompous gits like him. “You know what, doctor” looking him straight in the eye from a very short distance, “that’s absolutely fine with me. You can fuck right off because over my dead body will you ever come near my wife again!”. I grabbed Paula’s wheelchair handles and pushed her straight out of the hospital without a backward glance. It was a small hospital, very small. I became aware that I had shouted rather louder than I intended as, in one of those movie moments, everyone around seemed to have paused in mid air, stopped whatever they were saying or doing and had fixed their gaze on us, mouths mostly agape, as I pushed doggedly forward with my own gaze fixed firmly on the door to the outside world.
It just so happens that one of our customers was an Osteopath. It also happens that he is widely regarded, by his peers, as the best Osteopath in the whole world, that has ever lived or is ever likely to. He’s quite special. He is in his seventies today, still in practice, still training others who flock to be trained by him and still available to me and my family on the odd occasion I have need. Stuart saw Paula once, in the day or so that followed. She may have had one or two subsequent consultations. She was immediately able to walk. Within a week she was back at work and has, more or less, never looked back. I say that, perhaps more glibly than I should, as we haven’t been together in twenty-five years but let’s put it this way, she didn’t go to bed rest at all, let alone for six months and she was being her normal hyperactive self within the week. Best prognosis a doctor ever said to me and he was spot on, she never did see him again.
What does all this have to do with our young Charlie? It’s the epitomy of the arrogance I am trying to describe. I am also trying to contrast it with the incredibly high esteem in which I hold those doctors and practitioners whose feet, frankly, I’m not fit to wash. None of them would ever display the traits I am writing of, any more than they would eat their own flesh.
Medicine is a science but much more than that, it is an art. The Art of medicine. Anyone with intelligence, aptitude and application can learn the science of medicine. If you can write text books to describe it, then almost anyone could learn it. Learning medicine is one thing, learning to be a doctor is quite another. Much as some would like, one cannot divorce the patient from the condition and treat only the condition. One must also treat the patient and to do that we have to communicate with them, we have to learn and understand a little about them, we have to get them on side because, quite literally, we are in this together – the patient and the doctor. When that patient is a small, totally inarticulate, barely sentient child, the parent combines with the child in any definition of “the patient”. It is therefore the parents with whom that skilled communication is now required and to whom it must be directed, in the clear knowledge that it is they, not the doctors, that have life-threatening decisions to make. The doctors are there to inform, educate, advise, to guide, to coax. In some cases, especially like this one, to use every psychological tool in their toolkit to bring the parents to a conclusion which, whilst inevitable to the doctors, is quite simply the last thing, literally the last thing, that any parent can bring themselves to. In short there are times when to allow life to end, even to assist it indirectly, is “the right thing” to do.
When Charlie was diagnosed in October, was not the right time. If, and I say this in full knowledge of the pressures of time and resource that exist within the NHS, some bright doctor had dedicated the time to Charlie and applied every effort to the research required, they may have come up with the potential treatment we’ve all heard so much about, at an earlier stage. The Court documents show that Charlie’s doctors did indeed go to great lengths to consult widely and internationally. All credit to them. But. As someone with long experience of such matters, that is: of what some people consider to be speed, application, diligence, devotion on the one hand and what I consider to fit that description on the other, there is a yawning chasm of difference. In a different environment, with different people, given a different ethos, it’s just possible more could have been done. I say all this, in the full knowledge that the only treatment available may have had little or no effect. I make the point simply that looking into something is not what matters, it’s the vision, the speed, the diligence of that research – knowing there’s a steam train coming down the track – that makes the difference. Do I think Charlie’s doctors at GOSH (Great Ormond Street Hospital) could have done more in this regard? Probably not, not in that environment, with that ethos. I don’t blame them one iota for that. I think, given the limitations of a free-at-point-of-use, socialised,State healthcare-system, they did probably more than can reasonably be expected of them.
As I understand it though, there came a point in January, at least by March, when it was clear that a) Charlie’s condition had progressed beyond repair (brain damage) and b) No magic treatment was coming down the line to reverse that, or even to halt the progression of the disease. At that point, Charlie became quite frankly, irrelevant. The challenge for the doctor’s, the hospital, the “authorities” in general was to treat the parents. To treat them with all the care and compassion possible, yes, but to treat them psychologically to bring them to the right place for them to be able to take that last, that impossible decision. They alone now needed the full professional resources of a caring compassionate health service but as I understand it, the trust had gone. That fragile but essential gift shared by doctor and patient, it was gone. I cannot know how, what events or misunderstandings brought that about but I can say this with complete certainty. It was that loss of trust that brought this whole sorry sage to the Courts, time after time. It was that breach that caused Charlie’s parents so much agony – not to mention all those involved in Charlie’s care and let’s not forget how harrowing this must have been for both sets of lawyers and for the judge – as they fought tooth and nail to protect their offspring, convinced that GOSH was no longer working in their shared best interests.
Where trust is lost, where there is a breakdown in this precious bond, there is responsibility to apportion. I don’t say ‘blame’ but responsibility. If nothing else, a need to go back over the proceedings in exquisite detail, to learn the lessons, to make plans to avoid the same thing occurring in the future. There’s a need to adopt some humility. To ask themselves, each one of those involved, what contribution they may have made and how they can be better ‘next time’.
I can’t tell Charlie’s parents what they should or should not have done. I know without hesitation what I would have done and I believe it would have been the best thing his parents could have done. I would, in January, have accepted the futility of the fight, found a way to come to terms with my loss and asked the hospital to switch off the apparatus that was sustaining Charlie’s physical functions. I say this without a scintilla of blame for Chris Gard and Connie Yates. I’m saying what I would have done and what I wish they had done.
As for the legal process, having read extensively, I stand proud to live in a country that can demonstrate such a rigorous, compassionate, fair and cautious judicial approach to such a complex and emotional situation. I have only praise for the judge, whose written judgments read as if they had been considered and the issues dissected by Solomon himself. I have linked both the first judgment, gosh-v-yates-and-gard-20170411-1, dating back to the hearing in April, and the second gosh-v-gard-24072017 on 24th July. I would like to commend the lawyers on all sides, especially those who worked pro-bono for Chris and Connie. It’s an obligation for me to point out that without them, these parents would have had no recourse to legal aid and thus would have had to rely on their own representations. I am not angling for taxpayers funds to be used in situations like this, any more than they already have been. I was particularly struck by the Great Ormond Street Hospital position statement at High Court on 24 July 2017 prepared by Katie Gollop, QC on behalf of GOSH, which is deeply thoughtful and considerate, in all the circumstances.
There is no good way to end an item like this, other than to say that we all do the very best that we believe we can in this world, Charlie’s parents, lawyers, judges, doctors, nurses, all of us. Sometimes all of that cannot save each and every precious life on this planet and we all have to be realistic about that. In the wider context of life on Earth, we are all very small, very fleeting and very, very insignificant. Our thoughts must be with Connie and Chris.
RIP Charlie Gard 28th July 2017