The Sad Case of Charlie Makes me VERY Angry

This blog was supposed to be fun and a kind of diary of my son’s early years. Breaking new ground and trying new things etc… Largely this is exactly what it is. I have tried to steer clear of politics and the similar “real world” things. I know that I can’t protect him from the harsh realities of life forever – hence the slightly political posts I have made. I felt they were (and are) relevant to the lad’s future.

But this morning as I drove to work I was both saddened and angry with what I heard on the radio. Apologies. Here goes…

This is different. It is almost sinister and why I feel that I have to write it down while it is fresh in my mind. There are real bastards out there; ruining ordinary people’s lives. And I am not talking about your typical criminals – per se.

A young couple with a 10-month-old baby boy are being told that they have to let him die in hospital. Charlie has a rare genetic condition and the doctors say they cannot do anything for him. The parents want to take him to America for some form of “experimental” treatment or other. We all know this kind of thing happens frequently. It seems the medical care in the USA is far superior to ours in Europe otherwise why do so many people raise money for children to go there. And it is mostly children who go there. But let’s not get into that debate. The parents are even being denied their last wish to be able to take their son home to die. It beggars belief.

This is about doctors (apparently), the British legal system and the European court of human rights telling the parents that they must let their child die and that it has to happen on a certain day – today! Telling them that there is no alternative and that they cannot even try the American option.

The poor boy is fighting for survival on life support equipment and while there is hope, any chance, that something can be done the parents should be allowed to at least try. But no; they have been told that the machines must be turned off. These are the same type of people who deny old and severely disabled adults the right to choose death over life. The old and unable are denied the chance to “die with dignity” yet this is exactly what they are telling the parents of this young baby. That their little boy must be “allowed to die with dignity”. Unlike those old adults who want the right to choose their ending the poor lad has not even had a chance at life. Any life.

So who is really behind this? We are told “doctors” and “lawyers” have said this or said that… But where are the NHS managers? The doctors can only say that there is no more that they can do (in this country or hospital). Apparently they have said that they do not think the experimental therapy in the USA would work. They are entitled to that opinion but would they really ever deny parents the right to try some new treatment in another country? I seriously doubt it. Such things contradict their training and dedication.

Lawyers are following the law you might like to think. In this case what does the law have to do with it? Surely the real issue here is that the hospital – the National Health Service (NHS) – wants to free up the room/equipment. Naturally they think that if the doctors say they cannot do any more then the equipment and space should be made available to other patients. The parents only want to keep their child alive long enough to take him out of the country. Surely they should be allowed to do that? To have one last attempt at saving their baby’s life? They had even managed to raise a large sum of money in order to pay for the whole thing thanks to donations by thousands of the great British public.

In my opinion, it is not the doctors or lawyers who are to blame here. It is far more likely to be down to those with no discernable life skills. The bureaucrats working for the NHS. So-called “managers” who probably know nothing about medicine nor the law. They almost certainly possess no useful skills but are very good at playing the political games and, let’s cut to the chase here, bullshitting. Such people are paid large salaries to “manage” the hospitals.

Highly paid individuals contrive to tick all the “right boxes” – or so they think. The “safe” approach. The easy option. Follow the “rules” – if indeed there are any. But don’t – whatever you do – use a bit of common sense and decency. Heaven forbid! To me this has parallels with other, recent events in London where decisions were made by unskilled over-paid pen-pushers but this is not the place to go into that. Unfortunately such characters seem to be everywhere these days.

According to the press a hospital spokeswoman said: “As with all of our patients, we are not able to and nor will we discuss these specific details of care. This is a very distressing situation for Charlie’s parents and all the staff involved and our focus remains with them.”

So; there you have it. A faceless, nameless, pen-pusher working for the NHS has the last word. It saddens me greatly but more than that it makes me very angry. And it should make you angry too.

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