Charlie Gard 20

[CremeFresh]

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

I feel that when people say "GOSH could have handled it better, communicated more"
What they're really saying is that if GOSH didn't make it public/post about it on social media, it didn't happen!

It reminds me of a thread where a poster said that her relative had "hid" her pregnancy. I clicked on it expecting to read about baggy clothes and an unattended birth etc, but the woman had announced her pregnancy and birth as usual, just hadn't posted it on facebook!

It seem increasingly that 'pro-lifers' are actually really 'pro-suffering' for their own unhinged reasons - and often right-wing religious.

Tinsel: that happened to me - I was accused of hiding my last pregnancy because I posted nothing on SM about it. When DS was born and we posted a birth announcement on FB I had all sorts of odd, pointed, comments from people who seemed genuinely annoyed that they hadn't had "the info" about me being pg. It really was a lesson in the ills of SM for me. The CG case is a huge amplification of this prevalence for feeling entitled to a) share everything without filters and b) to "need" to know everything about someone.

Everyone is entitled to their own opinion. The trouble is that, these days, everyone thinks they are entitled to their own facts.

This whole case seems to have been surrounded by people who had their own "facts".

"Charlie was born perfectly healthy."
"Charlie is not in pain."
"Charlie is not brain damaged."
"The doctors are lying."
"The parents' rights have been taken away from them."
"Charlie had the potential to be a normal healthy boy."
"Charlie is being held prisoner by the NHS."
"The UK government is sentencing the child to death" and so on and so on.

Once these so called "facts" were put out on social media the ill informed and the stupid picked them up and ran with them, reinforcing them to such an extent that any attempts to correct any misconceptions were treated with hostility and part of Great Ormond Street's gigantic "conspiracy."

The "facts" led to details being inaccurately reported in the mainstream press, American pro-lifers jumping on the bandwagon, drove a succession of futile court cases, resulted in staff at one of the world's leading children's hospitals being subjected to a tidal wave of abuse and death threats, and worst of all, meant that little Charlie's death (I do not consider what he endured in hospital in any way constituted "life") was prolonged needlessly over a period of many months.

Nobody is entitled to their own facts.

I don't believe the pro life people drove the court cases. The parents raised the money for the experimental treatment in the first place. The pro life people jumped on board after the fund raising was publicised. However had the parents accepted the best advice, there could have been a different outcome. They did believe that they had rights to determine what happened to their child, which by going to court, they effectively relinquished what exclusive "rights" they had. The "right" to mediate with the hospital without a Guardian was lost. Unfortunately by getting anywhere near
Americans, and the fact that experimentation on human beings is different in the USA, means there was inevitable conflict with the law here. The average person just does not understand the important differences between us and the US and the fact we have The Children's Act to protect children is a major difference. It is worrying that people are willing to believe assertions rather than facts and the truth.

TheWeeWitch yeah, me too, with no1 I told LOADS of people very early on, before my first scan! Everyone I was in direct contact with knew, but I didn't do a special FB announcement or post my scans, so once I was photographed with a pronounced bump later on I got some comments from random aquaintances that I'ld "kept that quiet" when in fact I'ld been shouting it from the rooftops!

There's a weird entitlement thing going on re SM and info snipped - even if the info is readily available if you look/ask for it elsewhere. In GOSHs case, not posting regular snappy tweets = "having something to hide"

info "snippets"

It did seem that there came to be a belief that the social media campaign would influence the court, hence the insistence on all the hearings being public. That changed only at the very end. Horrifying thought that anyone might really believe in justice via numbers. Though given the fact that petitions get discussed in Parliament if they reach enough signatures, maybe a rational belief after all.

It is not remotely rational to think that the law as applied in a court is influenced by petitions or SM.

Whether Politicians decide to amend or make laws due to public support is up to them but quite often public clamouring makes bad laws. It is an entirely different process. A court can only interpret what is already law and in certain circumstance that interpretation is groundbreaking but in this case I don't feel that was the case. If anything it has reinforced that the child is of prime importance because at no stage did the parents "win" despite all the hype and the judge said it would not affect what happened in court. Fortunately courts listen to evidence not uninformed SM. Even petitions that are debated in Parliament rarely change laws. It's more of a venting process.

Brexit was won/lost on SM (Depending on your POV, both sides equally) and that's translating into the most significant application of law of our age so….

Not sure if this has been posted, but an interesting article from BBC: www.bbc.co.uk/news/health-40644896

BubblesBuddy - I know a bit about the laws here, childrens act etc. What did you mean about laws in US about experimenting different? Sounds bloody terrifying!

Fergus Walsh reported that in the USA it is ethical to administer a drug knowing it will not help the patient but will inform medical research for the future. Here, we can only administer a drug if it will help the patient. To some extent this was the critical difference between the Hirano stance and that of GOSH.

I think the us also have, or are fighting for "right to try". So if they think there is a drug or treatment that may help them, they have the right to try it, even if it kills them.

So in the absence of the childrens act, if my dc were ill, i'd have the right to inflict all sorts of untried tharapies on them, even if it killed them or did nothing.

I suppose it would cover the bloke who wants to "try" a head transplant too?

The Government had a manifesto commitment to the Brexit referendum. The outcome was debated fiercely but the original decision to hold a referendum was not brought about by SM. Mostly the Cinservstives running scared of their own MPs, a long standing argument for 35 years and UKIP pressure.

Often you do take part in medical trials not knowing whether it will help you or not.
I dud such a trial Friday.

As fir being born healthy, it's a difficult one. I was born healthy or should I say apparently healthy? Fifty years later it's apparent that my genes are causing issues....

Head of the hive- clinical trials are very tightly regulated and the drug will at least have been through lab and animal testing before it even gets to phase 1.

My friend is a drug designer, and designs anti cancer drugs. In theory they all sound great, until you get them in a lab, or a mouse, and realise they just don't work, or have horrific side effects.

Plus, as an adult, you can make an informed choice as to whether to partake in a clinical trial, knowing the possible actions or non effects. Terminally ill people, and children, can't often make competent decisions.

Finally, the right to try will circumvent trials, and a whole lot of data will be lost. So long run, it won't be beneficial to the population as a whole, as we won't know if it works in a reasonable time frame, or what the side effects are. As always, one persons anecdote does not equal data.

Mine was a comparative trial.

You in effect don't know whether the drugs work anyway in an oncology setting. For some people they will, and some they won't.

Excellent posts from Ellie and Bubbles.

I'm glad someone mentioned statistics too, so many these days just simply ignore them, or have no idea how to interpret them. We've had a few lessons in that in hte course of these threads too.

It would be good if one thing that came out of this is that people would understand that our children are our responsility and the matter of parental rights simply doesn't exist. Sadly, if C&C go ahead with their plan to start a foundation to help parents assert their 'rights' it may be a while coming.

What I see is that most of this case has been driven by ignorance and refusal to accept facts.

As far as the US testing goes, if an experimental drug is administered to a patient they (or their parent/guardian if a minor) are fully informed beforehand and consent to the treatment. It's not as if researchers secretly give it to someone or lie about the chances of success or the effects of the drug. And if I remember it right, drugs are tested on consenting adults before they are considered for a paediatric trial.

Disclaimer: I read this on social media and cannot guarantee it's accuracy

When a child I know in the UK was diagnosed with DIPG - a type of brain stem tumour, her parents were told nothing could be done for her as chemotherapy wouldn't cross the blood brain barrier. (Luckily she was accepted into a trial for surgical ports putting the drugs straight into the tumour, and is doing well)

On the other hand, children in the US are routinely offered standard chemotherapy for the disease, not because it works, but because it makes the parents feel as though they're fighting.

I can't imagine it being ethical to submit a child to something as harsh with as many awful side effects, knowing that it won't work.