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

The other problem is that C&C don't actually believe Charlie is in any form of pain. So when we sit here saying everything is self centred about them, to them it isn't because he's just their boy not in pain who can look at objects and see.

They are still in a complete denial phase. I struggle to believe not one person in their family has prepared them for the possibility their son is gravely ill and in pain and they need to let him go. All they need to do is look at that first picture of him on a ventilator compared to now. He's bloated and it's awful to look at.

I just hope it doesn't get dragged out and C&C can let go and it doesn't rumble on for weeks.

With Charlie gone there isn't anything for them to fight for.

I actually think they'll launch themselves into a huge fight for their perceived justice, they won't just let this go following Charlie's passing. I fear this fight is going to go on for many years yet

I just noticed that it looks like an admin has turned off the comments on most of the posts in CA. Perhaps this is a way that the parents can move away from the social hysteria that seems to have been taking place online?

@Jux

Frankly, I think they have enough on their minds now with tomorrow so close than to waste their time worrying about a backlash from the likes of Pastor and CA

We would think so but sky news now reporting C&C extremely upset over the 'backlash' over the GOSH death threats.
They do comment on news stories etc, so think they do worry about backlash from General public which just shows how vulnerable they are- hope someone is able to give them proper guidance.

I can't see how a "Charlie's law" can be created. It should never be about the parents. It should always be about the child. That's why we have the Children's Act.

It will become a very dangerous place if parents Rights overtake those of their children.

"Charlies law" from what I can see from their suggestions would also open a whole host of problems when it comes to parents refusing treatment for their children on religious grounds.

Parents don't always know best. It really is as simple as that!

I don't think there will ever be a law that takes children's rights away from them. That would be a backward step.

Can someone copy and paste Connie's comment from the sky news website please
I am confused as to what she is saying and what she means by it

All they need to do is look at that first picture of him on a ventilator compared to now. He's bloated and it's awful to look at

When you believe in something so strongly you see only what you want to see & subconsciously ignore or find an alternate reasoning for anything which points against what you believe.

www.google.co.uk/amp/news.sky.com/story/amp/charlie-gard-parents-upset-by-backlash-over-great-ormond-street-death-threats-10958807

Thanks Monty.

I have become very interested in the case from legal point of view as well personal experience of loss and how society deals with death. I have experience in the law and the courts but not in Family Law. Nevertheless I think there will be two issues relating to further evidence (1) Updated EEGs and MRI scans and (2) new evidence on the benefits of Nucleoside Therapy over and above that heard at the first court hearing before Judge Francis and then finally (3) whether this would benefit Charlie.

All areas are contentious. First it needs to be established from the recent MRI scans and EEGs whether Charlie's brain and muscle functions have in fact deteriorated. C and C have never accepted that this is the case so I would expect that to be contested. Secondly what exactly is the new evidence with regard to nucleoside therapy. GOSH had considered nucleoside therapy but decided against using it because of the decline in Charlie's brain function. Discussion at the time of the first case related to whether the treatment could cross the brain-blood barrier and repair and improve Charlie's brain function. So is there more evidence to suggest that this can be done and can this be beneficial to Charlie given the current evidence with regard to his state of health.

In some ways I would imagine that the fact that there is another child with the form of MDDS suffered by Charlie and is being treated by nucleoside therapy may provide evidence that the therapy does improve the quality of life of those with the gene mutation. However this may not be relevant if Charlie has been deemed to have declined.

I think Judge Francis is being very thorough and compassionate to the C and C. In all cases Judges endeavour to be thorough to avoid appeals. I think he will give a fair judgement consistent with the law..

Although the furore around this case might suggest that it should be held in camera, I think the need for openness is essential to avoid accusations of cover ups. It is essential that all court papers are available for inspection in the public domain.

Turning now to Ashya King. I am frustrated that people keep using this as an example of how doctors are evil and have power complexes. I wish they would educate themselves about the case. I also noted at the time the parents objected to chemotherapy as well a the radiotherapy proposed by the medical team at Southampton. They were able to procure proton beam therapy but it should be noted that the medics in Prague also underlined the need for chemotherapy. The parents chose not to accept this. Ashya is in remission at the moment and cannot be considered cured. It could be considered that in refusing chemotherapy, the parents have put their child at risk. I do hope that is not the case.

Judge Francis stated at the end of the full judgement words to the effect that he felt, in cases like this, there should be some sort of formal mediation, possibly judge-chaired, to hopefully avoid things having to be thrashed out in courts.

That's what the parents and CA want though, that no matter how much pain Charlie is in (but are actually in so much denial you don't believe the country's top doctors), you should be allowed to have the final say on your child. If that means using him as a lab rat for a professor trialling a new drug then so be it, because it means you fought for him. So this is what Charlie's Law will all be about and what they're campaigning for.

If it wasn't real it'd be laughable.

I don't think there is ANY danger of any sort of 'law' being passed to strip vulnerable children of their rights.

I end with this procedural note: I have already expressed the opinion that I believe that it would, in all cases like this, be helpful for there to be some form of Issues Resolution Hearing or other form of mediation where the parties can have confidential conversations to see what common ground can be reached between them. I believe that that type of hearing, be it Judge led or some other form of private mediation, would have led to a greater understanding between the parents and the clinical team in this case. I am not saying that it would necessarily have led to a resolution, but I think in many such cases it would and I would like to think that in future cases like this such attempts can be made.

Is someone already campaigning for 'Charlie's law'?
So parents should have a final say in medical treatment? It will be very sad if we go towards US kind of model where parents can keep a brain dead child alive for many years because they don't believe she is brain dead- it can be all very scary.
I am not saying parents shouldn't have a say, we should & it should be always sought -after all we know our children the best, but we shouldn't be given the final say on medical decisions.

I understand there are mediation services available to try and reach a common viewpoint about treatment in hospitals. Only the most difficult cases ever get to court. The sheer expense of this would ensure a resolution is best sought outside a court. However if there is no agreement, the law will have to decide.

Please read the details of the court decisions. GOSH wanted to move to palliative care. That was the view the parents challenged

You're absolutely right - I was mistaken there. What I should have said in referring to the multiple courts was that they backed the medics' views and that the parents objected to that too, but I certainly put it badly

I agree Mommytomylittle stars. A parent has the right to second or more opinions as it is, if they disagree with a clinician. I firmly believe the Children's Act is something we should be proud of. It is astonishing how many people think parents have rights over their children. And now there is the attitude that a parent should "do everything for their child" and can be criticised for not "fighting" . Well of course we all instinctively feel that, but can we trusted to want the right thing? Er clearly not, and certainly no if a child may come to harm from our decisions for them.

And thanks, BigGirlsBlouse,I didn't know Ashya King's family chose to deny him chemotherapy, I hope that was an informed decision, and God forbid, that he does not relapse. Chemo would have reduced the risk of relapse (recurrence), maybe not by much, but still some.

Just seen this linked on twitter.
So all this 'socialised death panel' bollocks, when it does happen there too?!? Ridiculous

I am actually up to date.... taken me days to catch up. Very informative threads and glad they seem all moderate and measured at the moment.

Wonder what on earth this coming week will bring and what will have happened this time in 7 days? Mind you I remember thinking that a fortnight ago. All so sad.

Remember the some of the Media will back law changes. It wont pass but it have to be debated.

No problem Puzzled. Lots of the ins and outs of this are new territory!

Quite often a knee jerk reaction and populist campaigns lead to poor legislation. A careful evaluation is needed by those best places to understand the issues.