Doctors playing God

[John K]

"Contributing to society" is not just about paying taxes, in fact very much the opposite. You contribute to society by being an active part of it.

Comment about NHS choosing to spend funds this way or that way is not related to the above

Again understanding this is emotive and I am in the minority. I am not heartless and do have feelings and emotions, I am just wired up differently on this particular matter.

[Captain Colonial]

Both sides have entirely understandable and valid reasons for what they have done.

However, when you have a situation where the only winners are the lawyers, the tabloid papers and social media providers, we are all the losers.  I can only imagine what good would have been done if the argument was held in private, and if every idiot who bought a tabloid to read about the baby had instead given the money spent to buy the paper to charity instead.

[jeff oakley]

There are many emotions with this but the reality is that the GOSH doctors were correct in their clinical assessment. Nothing will convince some they were wrong especially the parents who refused to accept this.

The American snake oil sales man, it can now be revealed, had been offered access before to see Charlie and to read all the evidence which was peer reviewed, but then failed to do that until the media storm was so huge. 

Once here both he and the Popes Dr saw the evidence and when they final MRi scan showed exactly what was happening then the parents have seen there is no hope left. And the drugs he was advocating would do nothing.

No one can blame the parents for having hope, but there was none from the start.

some tried to make this into "parental rights" well the law protects children and vulnerable people from others. Take a jehovas witness refusing life saving treatment they disagree with, the child's welfare over rides those of the parents, quite rightly as they cannot make informed choices when their beliefs are clearly wrong. The law is there for a reason.

This case will cost millions in future as any parent will no longer believe what Dr,s say and litigation cases will be many going forward. 

Social media has given access to idiots to rant rave and threaten with no comprehension of what they were trying to do. I can forgive the religious nut jobs as they are brainwashed, the ones I cannot forgive are those who wave banners with no understanding of any of the medical or ethical matters and have made a nuisance of themselves abusing staff and visitors going into to see their sick children as it is a trendy thing to be involved with.

what I also find abhorrent is that legal aid was refused to these parents and the lawyers for them did it for free, why they could not have help is an affront to all that is decent, especially when we can all recall many where come sense should have refused it.

i hope that the media and the hangers on leave the family alone now and let them have a peaceful end and deal with their grief, I suspect the circus will still want one more performance from them.

Anyone who has a disabled child, especially those who adopt or foster, should have our respect and support but there has to be hope of some quality of life for the child from the beginning.

[DonPeffers]

22 hours ago, jeff oakley said:

The American snake oil sales man, it can now be revealed, had been offered access before to see Charlie and to read all the evidence which was peer reviewed, but then failed to do that until the media storm was so huge. 

You have Jeff accused me of being disingenuous (which I've taken on the chin in pursuit of reasoned, calm debate) but you must be fully aware of the American you are referring to, but fail to name. GOSH made Dr. Michio Hirano an honorary (UK) Doctor so he could review the case at GOSH (a necessary step to allow him access to NHS patient data). My reading is Dr. Michio Hirano is a world leading neurologist and an expert in mitochondrial disease. No records traced of his selling snake oil. Would Gosh really make a snake oil salesman an honorary doctor in their hospital?

Any experimental therapy had to happen very early on (and not when so much tissue damage, including brain damage, had occurred) and the family had to raise the money themselves as NHS would not fund it.  I accept the nucleoside therapy is not a cure, even if it worked, but many illnesses have treatments that are ongoing and improved procedures and drugs are developed.

GOSH's own website http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case  gives the following statement which clarifies the funding issue

Why is there no treatment available at GOSH?

There is no cure for Charlie’s condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment.

 

I found http://www.nhs.uk/Services/hospitals/ReviewsAndRatings/DefaultView.aspx?id=1097&pageno=1&sorttype=5&subject=All subjects&spid=0 which gives reviews of GOSH ( 2.5 out of 5 stars --only 24 reviews) but a common theme is very poor communication which has been echoed by Charlie's parents.

I am sure GOSH do some fantastic work but had no treatment available on the NHS.

 

It seems by the time the crowdfunding started on 30 Jan 2017 Charlie had deteriorated too far (including brain damage) so was then beyond any help.

 

A very sad case which nears its finale. Please do read http://www.charliesfight.org/

[Dave Eastwood (Gadgetman) - Club Chairman]

As charged as the debate is, and as raw as the emotions it generates are, let's rise above any slide towards personal digs, before we get to that stage, folks. 

And that includes the use of terms intended to bait or get a rise out of each other!

Please.

[jeff oakley]

Apologies if what I have written has been taken the wrong way, I do not think anyone in this case on here has not been genuine.

now there is no doubt that Dr Hirano is a leading expert but the treatment he was proposing was untested and he was offered full access and was invited over to the UK in JAnuary and did not come, why?

when the judge then invited him and the popes Dr he came and only then read the facts it was reported in court. It was also pointed out he had a financial interest in the drugs compounds again in court. Both he and the popes Dr agreed it was too late for treatment.

what he did in my opinion was to sell a false hope to the parents, it is a hope they believed and still do as read on their website. That is why it seems to be snake oil selling to me.

GOSH the courts and the appointed experts agreed there was no hope of recovery from the beginning and now so do the parents but understandably they feel let down.

Both Drs were made Hounary members otherwise the law would have prevented them having access.

i hope they can find closure but I doubt that very much.

 

[Steve (sdh2903)]

It's been quite a while since such a sad news story has generated such polarised views. Even between me and the Mrs have had to settle to agree to disagree. My opinion tends to agree with Jeff. If Mr Hirano was so keen to offer his help and even offer an experimental treatment then he should have been banging on the doors of GOSH at the first opportunity. But he didn't. 

I generally don't agree with how public this whole tragic case has become and such a topic is not one to be discussed on the likes of Twitter and Facebook where idiots who read the headlines start attacking the parents and the staff of GOSH. But that's my view as I avoid most social media as much as possible barring the odd forum site.

Even now the fighting continues about where the poor boy will die. It's just time to let the poor wee soul rest in peace.

[DonPeffers]

Rest in peace Charlie Gard.

[Geoffrey Carter (Buttercup)]

Rest in Peace little man. 

 

[John Dolan - Wirral & North Wales AO]

It's time to let go, rest in peace Charlie.

You will never know how your mum and dad fought for you, God bless Chris and Connie.