Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

Quite apart from the fact that judges and governments shouldn't listen to such demands, there appears to be a lot of question over the accuracy of these petitions..... you can fill in multiple online pages with your multiple email addresses (and those of anyone you might care to guess at - I wonder whether JohnSmith1954 or JaneJones1962 have "signed" many petitions

That's far from new, though. The Great Chartist Petition of 1848 was claimed by its promoters to have around 5.7m signatures. When it was submitted to Parliament and the signatures counted, there were said to be just under 2m. And they included people such as Queen Victoria and the Duke of Wellington, who was probably the person least likely to sign a Chartist petition.

As far as I am aware, drugs have at least been tested in mice here and in the USA that it not necessary before they are tried on patients. Surely children deserve better than this and we have to maintain ethical standards? We do have consenting adults rskubg part in trials but that is a different situation to a baby.

I have read all the threads, but not commented as majority of posts have stated very clearly & compassionately most of what I wanted to say.
Just wanted thank all of those posters, who have shared experiences & my heart goes out to each & everyone of you, who have experienced the loss of a child or caring for very sick children, also I wholeheartedly agree with the many pp on how this has been a very balanced & above all informative discussion & I think brings into sharp focus the decline in news reporting across all the outlets, the standard of reporting has been largely untruthful & unhelpful.
I have been at times nearly incandescent with anger, reading the nonsense about the treatment offered from Dr Hirano, the vilification of Gosh etc etc & sheer ignorance & stupidity of some of CA followers.
It has frightened & worried me in equal measure the untruths & ignorance & general bandwagon jumping by so many people who clearly had some very troubling agendas during this awful time.
Anyway enough of my waffle, my condolences to C&C & everyone on these threads who have/is suffering loss.
Mumsnet I salute you💐

"Great Ormond Street Hospital is estimated to have run up nearly £500,000 in legal fees for lawyers who successfully argued that the infant should have life support removed and be allowed to die with dignity".

www.telegraph.co.uk/news/2017/07/29/charlie-gards-parents-plan-charitable-foundation-memory/

Good post melen yy re the rage.

Thinking of everyone today, it has certainly made me feel very reflective of sad situations in my life both with terminally ill parents, life support withdrawal and DC in various hospitals including GOSH. I think the world is a little less bright without beautiful Charlie in it today

Hi, everybody, we're just back from holiday where I followed all the CG threads and thank you to everybody who posted such sensible, compassionate and sometimes very touching and heart-rendering posts

My thoughts are (have been and, I suspect, shall remain for some time) with Charlie and his parents - much love, light and strength to them . Nothing more that I feel I can say now, I feel.

Whoever first brought up the lack of critical thinking amongst some in CA was spot on IMO.
Every HCP worth their salt knows that 'miracles' happen - usually when the chances were slim but not non-existent.
There is a huge misconception and lack of understanding of what 'absolute' and 'relative' risk (or chance) mean and the quoted chances of improvement were never explained in terms of what they would have meant in RL (not in a lab, not in a study, not in terms of quality of life).
I very strongly feel that many people and institutions have things to learn from the last 6 months' proceedings and tragic events.

Personally, this have made so much more mindful about making sure and double-sure that particularly difficult, distressing and hurtful things are communicated very carefully, compassionately and repeatedly.
It is just so awful that somewhere along the way of poor Charlie's disease trajectory the relationship between those providing him with specialist care and his parents broke down so disastrously .

Oh, fecking petitions - purleeze!

Going through security at the airport today we (and everybody was) were asked to tap a smile/neutral/sad face depending on how happy we had been with the service. DS4(7) discovered the tablet-like device first, so he first tapped each face to see what would happen and then because he is a happy kind of chap tapped away on the happy face until we realised we had lost him and went back to find him we stopped him.
I am sure he won't have been the only child to have played with the device, I am sure plenty of people won't have tapped at all, some will take the piss, some will be difficult to please etc etc but the 'information' collected will be used to shape the service

Here's another thing I have concluded from the SM clusterfuck that CA represents: no important decision should be decided on the back of a referendum. Ever.

@Ellie56,

I would be very suprised if GOSH legal fees were only 500k. Sorry not disputing you though.

Gards got it all free, well on a pro bono basis.

I doubt this will ever end well now or for a long time either.

Does anyone else think there may be other lawsuits to come?

I hope not, but I am thinking there is a war chest there in the Go Fund me money. So who knows.

I have followed the issue from the very beginning. I thank you for the contributions.

May the child rest in peace. He is the only priority.

Being reliant on animal testing did lead to the thalidomide scandal. Interestingly, thalidomide didn't happen in the USA.

Headofthehive55however there were clinical trials for the use of Thalidomide in Northern America. Also before the drug was released for general use the drug had a significant human trial.

I do not want to get into a bun fight but I a little unclear as to the logic of your argument

Doubtless other lawsuits, not sure people would be so keen to lose their entire privacy and be open to the vileness of SM quite so eagerly now though seeing what has happened in this case.

The comments that have really stood out for me today have been from those who are really shocked about how quickly Charlie died, and about how sad they are that he didn't start to breath on his own. The complete and utter denial /ignorance about how sick this little boy really was is shocking. I wonder if there is a single person who previously advocated Charlie being taken to the USA to be essentially experimented on, who now realises that to even ATTEMPT to transfer such a critically ill ventilator dependant child would have been madness.

Maybe they will start to see how weak and poorly he was.

I do think these threads have at times been quite anti-American, which I wouldn't want to leave to Across to try and balance. I don't think the law in the USA in application is so very different from the law here. Bill Bryson wrote about how it seems impossible to correct the UK view that the very poor cannot access healthcare in the US. AFAIK the destitute are able to do so, even if sometimes thanks to charity in a way that would raise British hackles, and Medicaid covers children, often to a level we could only dream of. The big gap I think is for the working poor.

Did anything ever happen with buying the GOSH nurses some sort of treat from all at Mumsnet? As I'd like to contribute.

Before I knew much about the case, months ago I read an article about a couple who donated their life savings to Charlie's treatment. I hope that the Gard's give that back and not use it for some sort of legal battle.

Sadly I think that they will just keep on with the narrative of if he'd have been able to go earlier everything would have been just fine..

Blue it does beg the question of how people would feel if their donated money was used in a legal case, not quite using it to 'cure' the baby is it?

My understanding is that the very poor can access free state care in the US but that the working poor cannot afford premiums for private health care but don't qualify for state care. Happy to stand corrected.

Made perfect sense Maryz and i agree really. I think because I have such a visceral reaction myself to some of the American comments that I almost over compensate.

Would any legal team take on a case that was dealing with coming up against a very important part of the Children Act though even if they were paid to do so?

I think that instead of saying that he was healthy at birth, saying apparently healthy would be perfectly acceptable and would still help to get the message across that there is nothing that can done at this time with this particular condition although research is ongoing.

No doubt that narrative will continue for some but you have to hope that for anyone who wants to apply a bit of the critical thinking previously mentioned, there will be a realisation that Charlie's total respiratory failure was not due to the fact that he was left lying in a cot without any intervention.

Another principle of the Children Act is that delay is very dangerous to children. But if you look at the detailed timeliness I can't see any significant delay. I hope so much there will be no more legal cases.