Charlie Gard 14

[GabsAlot]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Sostenueto, is that aimed at me? I am very happy to leave the threads tbh. I can't seem to work out what's allowed now.

Angels - in some ways I agree with you in terms of everything bring in place to allow the treatment to go ahead so why not just let it happen if potentially it could improve his life, but on the other hand it is so wrong to experiment on a live baby when even lab rats haven't been subjected to the drug.

I think the big seating factor is even if this drug could make a difference, just how much of an improvement is likely? If all they can guarantee is that he'll come off the ventilator but he will still be paralysed, blind, deaf and having seizures then no child should be forced to live that way just for the sake of its parents.

Also, if his organs are failing (though I don't actually think that's been confirmed?) then he will still have those issues to contend with too.

I've repeatedly said that I don't know which way the Judge is going to sway and I genuinely don't.

I'm looking forward to hearing the evidence/thoughts of Dr H when the transcript is discussed because that's what will ultimately lead to the decision.

I know lots of people are angry with Connie and Chris but I just feel sorrier and sorrier for them with each day that passes. The screeching mob claiming to support them now are just in it for the drama, for a sick excitement, for a fight. Where will they be when the end comes for Charlie and his parents have to somehow deal with that? All three of them, Charlie, Connie and Chris- I am so terribly sorry and sad for.

Just before I go, I disagree about the CA being 'nonsense', it's the foundation and cause of the whole issue.

As other posters have pointed out, they have had court cases about treatment without publicity, its fundamental to the discussion as to why it has ended up like this.

I am not sure why the same rule wouldn't apply to twitter tbh as we have posters copying tweets on here during court hearings which apparently is for those who don't have twitter (even though you can still view tweets), yet the FB is not

Imagine a world were a law is passed that says doctors are allowed to try untested and experimental treatments on dying babies and children, because after all it cant do any further harm, There would be uproar and rightly so.
Yet I see people saying time and again "Just let him go and try, it might help and they have the money" Why is that any different? You are basically saying its OK to use dying children to further medical knowledge even if that treatment offers no benefit.

Angeles, the boy you refer to Dex I think? Wouldn't have died under nhs care, it was a disagreement about the treatment he received for a curable condition

The post above highlights again the principles and procedures we see in operation here, and how these are not always understood. In particular the ethical position of HCPs and the independence of our courts and judges from political interference.

As regards the 'scans' I assumed that what was being referred to was the MRI taken the other day not the EEG taken earlier that some also seem to be referring to as a 'scan'. But in either case I assume that they would have requested reports from several specialists and that it was these that would be referred to as making for sad reading. They could have done a whole torso MR scan not just the head, hence the telegraph muscle wastage comment. I assumed a head scan and brain development and skull size would also be clinically relevant. but since non-invasive if no contrast agent, and since no sedation needed, they might just have done as much as they had time for to get the fullest picture. And then the multiple reports which I assumed the parents had not read for whatever reason. Which would have been devastating to hear about in that way but an understandable error given the court process and if they had been waiting for and only just received the written reports. NOT a medic, just my best guess fron having some interaction with uni academics who work with medical inages and clinicians BTW.

funny how thecir spokesperson changes from week to week

its the pastor then ukipper now back to featureworld

Delurking. I've been following these threads almost since the start.

This is a desperately sad case that has gained momentum in the most appalling way. I think the tone of these threads has (with a few unfortunate exceptions) been both respectful and constructive.

"Just", meddle...

Careful now everyone - too many "same" posts to argeles may be interpreted as only one opinion being allowed, rather than us asking them to elaborate!!

We need hope. The very best needs to be done for Charlie.

That sums up this entire tragic situation in a nutshell. The needs of adults for hope or more time or something nice to happen should absolutely not ever in a court of law take precedence over the best interests, human rights and safeguarding of a child.

A child must not be sacrificed on the altar of social media, unthinking and well intentioned but uninformed sentimentality or adults being far better able to get their wants and feelings heard and sympathised with.

The decision will be made by law. With the best interests of the child paramount. There is absolutely no place for any politician playing popularity games to subvert the law for their own ends or anyone else's ends. Or judges bowing to the right number of 'likes' or twitters. Morally this is abhorrent.

Argeles, fortunately the Prime Minister has no power to overrule the ethical judgment of medical professionals. I hate to think of what would happen if politicians desperate for votes were allowed to get involved in this type of issue.

I've been lurking since the first thread.

I would be very surprised if the first the parents heard of those scan results was in court. It is very bad form to ambush other parties with previously undisclosed information, and KG would be well aware of that. If she produced the scans at the beginning of the afternoon session, it is likely that she would have have them at some point during the lunchtime adjournment and would have done her best to make sure all parties had seen them, even if that meant handing round the only copy and if need be, asking the judge for a bit of extra time before starting the hearing. Obviously I don't know for sure, she may have received them by email just as the hearing started.

(I've found these threads fascinating and thought-provoking, and would be sad to see them pulled. I would like to join a FB group if one had to be made, but would prefer the discussion to continue publicly on here.)

No friendly its not aimed at you!!!!! Where did you get that idea from?????

IF they didnt know about the mri then it must have been hard to hear

But thyve refused to engage with the gosh specialists so how would they discuss it anyway?

Friendlysnake there is a world of difference between twitter reports of what is being said in court and the incessant, gleeful, pointing and sneering screen shots taken from the CA page. Are you really not seeing the difference?

Friendly come back this minute! You are a valued contributed here! No one us having a go at you and that includes me! Xxxxc

Ceto I'm sure under Tony Blair's government we'd have had cabinet members doing precisely that. One of the fathers of the Soham murder victims has spoken about the repeated phone calls from a minister's office trying to pressure them to give way on their refusal to let that minister have a presence that used their tragedy to serve his purpose and let him be seen in a good PR light.

That period of UK history had much to do with today's deep suspicion of the establishment that's helped this situation escalate so much.

The case of Ashya King has been brought up many times during these threads. It's important that we point out the clear differences between his case and that of Charlie's:

1. The NHS were not refusing to treat Ashya King. They were offering him chemo and radiotherapy which had a 70% chance of being successful.
2. His parents wanted to use proton beam therapy but it was decided in this particular case that the benefits v costs were disproportionate.
3. The NHS had used proton beam therapy on other patients, they just did not think it would be beneficial for Ashya.

I am not sure why the same rule wouldn't apply to twitter tbh as we have posters copying tweets on here during court hearings which apparently is for those who don't have twitter (even though you can still view tweets), yet the FB is not confused

The twitter feeds are factual reports on what is happening in court. The copy and pastes from the CA FB page are obviously not factual, and are of necessity very selective. I think it's fine to alert people to things like the need to report threats of violence, abuse and the like. However, there is a tendency for quotes to turn up on this thread purely to illustrate how extreme CA is and/or to point and laugh, and, frankly, we've got the point now. I don't think there's much to be gained by constantly tutting about it - we're not going to change opinions amongst CA, and they will disperse soon and go looking for the next sensation.

It's inhumane to treat a baby in this way
Argeles - ironically this is what GOSH seems to think as well.

That continuing to ventilate a baby who can't move a single muscle, who can't see or hear and who is having frequent seizures (sub clinical because his body can't convulse) and whose EEG shoes an encephalopathic picture and whose brain isn't growing and whose body will continue to deteriorate because his mitochondrial depletion is so severe is inhumane.

The drug isn't even a "trial" drug. It hasn't reached the level where it has been cleared for trial for patients with Charlie's condition. There's no ethical approval and no clearance from the FDA. What if gives him 0.01% more skeletal muscle function and that's just enough to cause pain from spasm when he fits? What if it gives him fractionally more respiratory muscle function so that he still needs the ventilator but fights it more and needs to be sedated to tolerate it? GOSH are thinking about Charlie, not about Trump, the Pope and politics.

Hope your DD is better soon Miaow

I really dislike the inconsistency of threads. I.e. Amanda Holden gets a lot of bashing but this somehow is tolerated

Re staff, I am sure some are off sick, also the main consultant (named) probably feels safe can't even set foot outside. I think there is enormous stress and strain within GOSH.