Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

News

See all MNHQ comments on this thread

Charlie Gard (16) Future implications arising from case

999 replies

Puzzledandpissedoff · 24/07/2017 19:43

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

OP posts:
Hulder · 24/07/2017 21:25

Looking at Hirano's biography at Columbia, he does seem to be essentially a research doctor rather than what I see as a jobbing working doctor. In my small hospital we do moan a lot about the people in the ivory towers down the road. The patients think they are marvellous but the plans don't always bear contact with reality.

Being primarily a research doctor may well have made him look more clever to C&C. Unfortunately, I suspect it made him well out of his comfort zone with a real life baby in PICU. I suspect he spends most of his time in the lab or doing clinical trials.

Even worse for him, he discovered very late in the day, possibly only in the court room, that the UK legal system is completely different to the US one.

Anyway, the next mitochondrial diseases conference will be awkward, to say the least.

Ta1kinPeece · 24/07/2017 21:26

JaneEyre
Laura Davies all those years ago did not have a choice about becoming part of the news timeline.
Sadly vulnerable children make good "copy"

oakleaffy · 24/07/2017 21:29

Time and the progression of the disease.?
What normally happens to the muscles of a recumbent patient without MDS?
Surely muscle wastage will occur quite speedily?
I know pressure sores are guarded against in bedbound patients, but how do staff and carers keep muscles 'fit' whilst a patient is unconscious?

FlowerSour · 24/07/2017 21:30

Another thing to bear in mind is that this will never end for the parents. They will always be the parents of Charlie Gard, the baby from the news.

I can't imagine what it's like to deal with the death of a child and be scrutinised in the media. Those poor parents.

I've said it before, but there's no correct way to be a grieving parent.

JaneEyre70 · 24/07/2017 21:30

It's also very troubling that the crowd funding page is still open and people are still donating.......surely that needs addressing??

GabsAlot · 24/07/2017 21:30

Like i said in the previous thread, it is possilbe to hav complete blackout in a case

the singer who got an injunction against all english media not to namee him in some sordid thereesome

noone not on fb twittr anywhre wa allowd to say who it was it dint matter if other countries knew we couldnt name thm

Sostenueto · 24/07/2017 21:35

I worry about the implications for the future. Already the funds raised for Charlie will be used to form a charity to help other parents to take the NHS to court in similar circumstances to ensure parents have the say in their children. It us posted on CA earlier. The NHS could be so badly damaged by this scenario that we could be close to losing it sooner than we think. The far reaching consequences dies not seem to enter peoples minds.

friendlysnakehere · 24/07/2017 21:36

Sostenueto seriously? Sad

GabsAlot · 24/07/2017 21:40

bad mov if thy us the mony for that purpose its just a slippry slope

no parnts right will ever overule a childs

Sostenueto · 24/07/2017 21:41

Yes gabsalot there should absolutely be complete media blackout on any subsequent cases like this. Our gutter press, mainly conservative, who are already anti- NHS have had a field day with this case and will continue to for a good few weeks.

Sostenueto · 24/07/2017 21:42

Seriously friendly, about 3 hours ago.

JaneEyre70 · 24/07/2017 21:43

Surely the funds have to be used for what they were raised for though or returned? You can't raise millions and then move the goalposts...... this alone has put me off ever donating in such a way.

Jux · 24/07/2017 21:43

I don't think we want less transparency in our Courts, at all. Quite the opposite.

I have been wondering how to square that with what has happened and role of SM in this case.

Perhaps the means and conduct of fundraising etc could be more restricted, just a little. Maybe a procedure followed, and conduct of those espousing a particular cause be more closely followed and quickly dealt with, with some of the behaviour we have seen very quickly jumped upon and severely punished, like under emergency or special measures, so that whenever it gets out of hand if UK resident they are picked up straight away, and if abroad put onto a no entry list or something. Something which will make people thik carefully about whethe they really, really want to say that..

And death to admins, of course! Grin

Hulder · 24/07/2017 21:44

Part of the Charlie Gard legend is that Connie discovered nucleosides by searching on the internet.

A half- hearted search on google, rapidly identifies the Newcastle expert, after which you can pretty much guess all the experts as they publish together.

So GOSH knew about nucleosides all along.

Bitterly amusing is that Hirano is the co-author, with the Newcastle expert of a paper called 'New treatments for mitochondrial disease - no time to drop our standards' where the authors warn that all treatments must be properly evaluated and there is a bias towards poorly executed studies with a positive bias.

Surely what he has just been guilty of with his 10% and 56% figures?

Jux · 24/07/2017 21:45

However critical thinking is taught, it's not working, either. We need to think about that too. Or is the population just getting more stupid less able?

WeDoNotSow · 24/07/2017 21:48

I agree with more Transparancy not less .
If there was a media black out, we would only hear what family posted on SM.
What needs to happen is unbiased reporting of the facts.
I mean, we all knew it, but this has really highlighted how the media ignore facts, easily verifiable facts, for emotive click bait, and I'm honestly disgusted by it.

Rachel0Greep · 24/07/2017 21:51

Thanks Hulder, very informative posts.
I don't have a whole lot to add to the thread, but have followed the case for the past while. Poor Charlie. I hope that his parents will be able to cope with whatever the future brings.

WeDoNotSow · 24/07/2017 21:52

So is this 'sue the NHS trust fund' something that's actually happening, or something the BA have come up with to repay GOSH for 'killing Charlie with morphine'. They can't set up a charity for that. They'll be crucified, grieving parents or not

reallyanotherone · 24/07/2017 21:52

From my days in research it's very common to get an email asking your opinion, or if you have any unpublished data, even if you can send your cell line, new drug, or whatever to another lab.

Usually you know the asker, or their lab/professor, so it's no big deal. I've sent all sorts of stuff all over the world.

You're not expected to fly to their lab and physically help/input into their research though.

If you get such an email off a lay person or member of the public, you politely decline to help, or pass it on to your pr office if they are a bit weird persistent.

It may be dr hirano simply thought he was giving an informal opinion, especially as charlie wasn't his patient and he isn't licensed to practice in the uk. Gosh were in the process of applying for permission, so maybe it was "hey mate, if we get approval can we have some of your nucleoside stuff". Which would explain why he'd never considered charlie a patient or looked at his medical history.

The mistake was "the letter". But again, c&c were/are insisting no brain damage so maybe they were misled. Do we even know who was on it? I was under the impression it came from the italians, maybe dr h wasn't a signatory?

But huge props to judge francis. He played a blinder there, the parents get to make the decision, and a huge mess forcing withdrawal is avoided.

Sostenueto · 24/07/2017 21:52

Standards in schools have certainly dropped Jux hence the new reformed gcses. Battery really knacked will have to bid goodnight. Think charity is going to be called Charlie's legacy. Peace to all. Prayers to Charlie. Flowers

WeDoNotSow · 24/07/2017 21:52

I don't believe it, I think it's CA going all CA on us

11122aa · 24/07/2017 21:53

The things is if this cases are blacked out then its harder to argue that all court cases should not be blacked out.

Mommytomylittlestars · 24/07/2017 21:54

@Hudler
However one problem is that there are massive cultural differences in how medicine is practiced from country to country, which C&C are likely completely unaware of

This is so true.
I also think Dr H though medically trained probably does more of non clincal lab based work & is probably pioneering in that way. Looks like he got most of his initial info from parents and he said yes if you bring him here (as that's what happens In US, parents have the final say)- the poor parents held onto that glimmer of hope. I am also sure he never said to them 'he can potentially be a normal bit even way back in janaury' - It's parents interpretation of the stats Dr H gave them. I presume of CG were
To go to US he would have been under the care of a specialist paediatrician with DrH just providing guidance on medication.
And when parents say they still were happy to provide treatment, it's probably because he could under US law if the parents wanted it. These Parents are always going to carry this burden of 'if only' with them. I am sure GOSH too will reflect and learn from this - mainly how to avoid this sort of complete breakdown of trust.

MyPepper · 24/07/2017 21:56

Sos It would be nice if that was stated clearly on the crowd funding page...

WeDoNotSow · 24/07/2017 21:59

So, just saw Chris Gards full reading outside court, and he definitely said Dr. Hirano is still willing to treat Charlie, as no evidence of brain damage.
not sure about Italian dr.

Swipe left for the next trending thread