Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

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

But it's not a statement written by GOSH. It's evidence given to the first court hearing and recorded by the court. Even the parents' own expert witness, from Southampton, concurred with the others.

So why are parents now saying the complete opposite and that numerous doctors have said there was no brain damage, or certainly not to the extent GOSH claimed anyway?

I just don't get it.

Surely some doctors have put that into their heads somewhere along the line?

I get that they've got to cling onto something but if they'd previously been told, even by their own witness, that the brain damage in January was too far gone, I don't understand how its now done a 180 and C&C are claiming the opposite.

I obviously believe GOSH - I'm just confused as to how there can be such differing opinions.

Did anyone see on CA FB page a few weeks ago that someone had posted screenshots of MRI brain scan images (which I'm assuming were Charlie's) and asked if anyone knew how to interpret them?! This was when I first read about the scandal of the MRI images that GOSH had lied about and tried to hide them from the parents...

I just couldn't believe it.

Plus, the backlash against the hospital would doubtless have been even worse if the parents hadn't been able to get pro bono representation and had be forced to give up or else represent themselves against the hospital's lawyers - can you imagine the headlines?

And there'd be a stronger argument there than most of the stuff CA have come out with. I mean, GOSH wouldn't be the appropriate target, obviously, but I do actually think this is something we as a society ought to be able to offer to people in C and C's position. You can disagree with their actions whilst also supporting their right to equality of arms and to go to law.

But you have at the moment the legal profession effectively carrying the can for Parliament's short sightedness. The participants may find the publicity is worth the lack of fee, but equally, in Katie Gollop's case at least, it's come with a lot of abuse too.

To be honest it's C&C's interpretation of what the other doctors have said......

I think that's what bothers me. That C&C can make statements about their interpretations and it feels like GOSH have just kept quiet (probably but rightly advised to) and so everyone is taking what C&C say to be true and GOSH are getting treated abysmally because of it.

If I was GOSH I'd want to stand on the roof with a microphone and shout out exactly what had happened at the top of my voice to defend myself

I think SM and crappy one-sided reporting has got a lot to answer for. I think a lot of people will forever doubt GOSH from now in, I think public trust will have been lost in the hospital and the doctor and I do think their reputation has been damaged somewhat.

It just seems so unfair.

I agree parents have a right to proper legal representation. It's only fair.
If C&C's charity want to fund other parents who have disagreement with trusts it's fine by me as long as they employ proper legal professionals who are able to properly advise & support other parents- not C&C themselves making emotional decisions & just being carried away by 'let's keep fighting' attitude. If they especially go funding families in disagreement with GOSH it will be very very sad legacy for Charlie.

I would have serious concerns over the safety of any staff accompanying him off hospital grounds. Which, sadly, is problem entirely of the making of those followers who have threatened and advocated violence.

Connie is on fb comments on her friends page last night saying that the Gosh statement isn't true.

I say friend...she seems to only have added her recently. She says she's a psychic medium. And she does psychic reading awareness videos where she gives readinhs to people who comment on her fb live. And also speaks about Charlie, Harry and Alfie. Shes admin for one of those pages. Who now also have the airfreshners etc.

I would have serious concerns over the safety of any staff accompanying him off hospital grounds.

That's a really good point and I wonder if it plays a part in GOSH not agreeing to the request?

So why are parents now saying the complete opposite

I'd be very surprised if the lady from Featureworld isn't negotiating a book deal right now, so no doubt we'll be able to read all about it next year.

TheNightmanCometh thank you for your continued patience with me on this!

So, because the expert declined to come over in January when asked to, if legal aid were in place, this would pay for it at a later date.

It seems that unreasonable behaviour all round by parents and experts (refusing scans etc) would end up costing a lot of money.

There would have to be strict guidelines in place that should be followed before the public funds are raided (in my opinion).

I say friend...she seems to only have added her recently. She says she's a psychic medium. And she does psychic reading awareness videos where she gives readinhs to people who comment on her fb live. And also speaks about Charlie, Harry and Alfie. Shes admin for one of those pages. Who now also have the airfreshners etc.

It's disgusting isn't it, how can people take advantage of C&C, and other parents in similar situations, in this way?

It would be terribly sad if he died on the way home or became very unstable. To him hosp is his home that's his familiar. If hope they'd be able to give them a private room and have staff they have a good relationship with there. I assume they could take him home after, you can hire a cold for example to allow this to be a longer time. This would be pricey but the funds are there. That would allow them time at home that wouldn't distress Charlie. But lots on social media are on about a post mortem

Doubledottvremote that medium has been riding on the back of this situation for a couple of months (pink hair?).

I am getting too angry about the parents now and am going to lurk for a bit to avoid getting deleted. See you in a while.

I don't blame the parents at all - they were grasping at any opportunity to help their baby. I'm sure many of us would have done the same.

I wish Hirano hadn't spoken publicly about how his treatment could help before he had even met Charlie and I didn't like reading that he has a financial interest in the medications he prescribes.

Trump needs to shut up about issues such us this - he's no help and just excites the media.

Finally - I'm very glad to be living in the U.K with the world's best children's hospital.

It may do, Writer, how could they compel any staff to put themselves in danger like that? There could be a police presence of course, but that isn't what the family need at such a terrible time.
It's probably mostly to do with what has been their primary concern all along (GOSH) - not to cause him any pain or suffering.

Oh I'm not saying definitely would friendlysnakehere. It's just riffing.

But I think in this case, with the parents taking the attitude they did, Dr Hirano was always going to be basically told to either turn up or shut up at some point. Notwithstanding what people have said about it being normal for researchers etc to be informally consulted in cases like this. And it's accepted that witnesses need to have their expenses paid from somewhere, or at least have the possibility of it. So in cases where you have legal aid, there's also a mechanism for witness costs to be paid through the legal aid.

So if the court system allows for the possibility of publicly funded people finding their own expert witnesses, which I think it has to, there also needs to be some mechanism for paying them what they need to allow them to meet with the people involved if necessary. Either that or accepting they're not necessarily going to turn up. That said, don't try and apply logic to legal aid billing now, what the system will and will not fund.

Given his general condition surely it must be very unrealistic to want to take him out of the hospital environment? Not to mention the difficulties the staff will face and the resources that would need to be made available.

Yet more conflict for everyone to deal with.

Yup pink hair medium. Constant facebook lives as she does readings in between talking about the babies while her own children run around in the background crying for Mummy. And she says no dd mummy is busy helping the babies I can't play/feed/read to you now.

I would not like to be the person in charge of the risk assessment, if Charlie were to be moved back to the parental home and staff had to accompany him.

@winterwannabe83

I think a lot of people will forever doubt GOSH from now in, I think public trust will have been lost in the hospital and the doctor and I do think their reputation has been damaged somewhat

In my experience most people who complain all the time & shout loudest are not always the people who regularly need NHS services. Those who truly need regular services are generally grateful. During all these months we haven't heard any other patient/parent who regularly uses GOSH services criticise them like C&C slate them- yes there have been few voices of dissent on SM, but nothing as bad as this. Sounds like the UKIP ex family spokesperson guy even tried to get other distressed parents to sign some petition which made them even more distraught.
I think GOSH will be just fine. People who really need them will continue to use their services.

But lots on social media are on about a post mortem

I do wonder whether parents will request one in the hope of being told he had a 'normal' brain? Mind you, would they even believe the results if the results weren't what they wanted?

They'd probably ask he have it done at another hospital for independent results but I'm still not sure they'd accept them.

Mind you - if the reason they decided not to go ahead with treatment was due to his muscle wastage then I guess a post mortem would be pointless as what would they be looking for it to tell them?

I imagine GOSH wouldn't want to do one for Charlie's dignity but would there then be more accusations of a cover up? It's just all such a mess

I'm quite disappointed in the Guardian's report this morning. They've said GOSH's statement yesterday made an 'unprecedented attack' on Prof. Hirano. They also say that he 'took up the invitation that had been open since last December to come to the UK for the new court hearing'. But surely Prof. Hirano had to be pressured fairly heavily by the judge to come over - isn't that the whole point?

He'd been invited to come way back at the start, but he didn't; nor did he read any of the notes or the court judgments. He said treatment was 'futile'. It wasn't GOSH causing delay.

As someone rightly pointed out upthread, what more could they do, kidnap him and force him over here?

So now the narrative is that Charlie was never brain damaged, was a perfect candidate for treatment, could have been a normal boy, and it is purely inaction on the part of GOSH and the Courts that has led to his deterioration.
This is an APPALLING disconnect between his parents and his medical team and needs to be rectified or GOSH will have a damaged reputation and his parents will never have closure. Never.

The parents live in Bedfont in West London which is about 20 miles away from GOSH. AA Routefinder estimates it would take nearly an hour, but depending how slowly the vehicle carrying Charlie needs to travel, I suppose it could take considerably longer.

I really hope GOSH manage to find some way to make this possible otherwise there will be another media outcry.

I really hope GOSH manage to find some way to make this possible (letting him die at home) otherwise there will be another media outcry.

Absolutely - and GOSH must know this and fear this.

You can just see the headlines: "Even after holding him prisoner and sentencing him to death GOSH now refuse to allow him to die at home!"

The treatment for Charlie's disease had never been tested on mice, let alone humans.

I can understand that grief makes you do desperate things, especially when it comes to the loss of a child, but this really is beyond human and getting into playing God.