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Charlie Gard: Great Ormond Street considers 'new evidence'

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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Mon Jul 24, 2017 2:28 pm

Sadly, time ran out for Charlie in January, after the fortnight-long fits and seizures.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Mon Jul 24, 2017 2:31 pm

@skyrobcatherall
3h
Chris Gard and Connie Yates sit behind Mr Armstrong looking dazed, distraught. Usher passes up box of tissues

Armstrong discusses recent tests. Friday evening: parents told results. Reviewed by Prof Hirano in US. Other experts considered them.

Armstrong: the parents were naturally extremely distressed by the results of the tests.

@JoshuaRozenberg
3h
Charlie has suffered extensive muscular atrophy. This is irreversible even with NBT. Chance of improvement can't now be delivered.

@JoshuaRozenberg
2h
"For Charlie, it is too late. The damage has been done... It is no longer in Charlie's best interests to pursue this course of treatment."
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Post  bb1 Mon Jul 24, 2017 3:30 pm

@JoshuaRozenberg
3h
Francis J: notion that Charlie was a prisoner of the NHS is the antithesis of the truth. That's why GOSH had to apply to independent court.

Francis J: Children Act 1989, s1, says child's welfare is paramount consideration. Court guided by that simple proposition.

3h
Francis J: only by reading the four judgments can commentators understand the full picture.

Judge - I do encourage the many commentators who wish to opine on this case to read judgement made in April (and ECHR + Supreme Ct judgement


I did read them, very carefully; they made it very clear what the REAL situation was, and that there would be no 'miracle cures'.

I hope the barmy army leaves the family in peace now.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Mon Jul 24, 2017 3:47 pm

Oh God, the barmy army are now yelling JUSTICE FOR CHARLIE outside the court.
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Post  bb1 Mon Jul 24, 2017 4:00 pm

file:///C:/Users/jd1/Downloads/Great%20Ormond%20Street%20Hospital%20position%20statement%20at%20High%20Court%20on%2024%20July%202017.pdf

8. Throughout, his parents’ hopes have been sustained by advice received from overseas.
Mitochondrial disorders comprise a specialised and small international field. The
experts in that field meet, collaborate and exchange ideas on a very regular basis and it
is that valued collaboration that allows progress to be made and patients to be provided
with the best possible care. Professor Hirano (“the Professor”), whose laboratory
research has an international reputation, is very well known to the experts at GOSH and
he communicated with them about NBT treatment for Charlie at the very end of
December. In January, GOSH invited the Professor to come and see Charlie. That
invitation remained open at all times but was not taken up until 18 July after being
extended, once again, this time by the Court.
9. In the months between January and July, the Professor provided written and oral
evidence for the best interests hearing in April and, after the Court decided that NBT
was not in Charlie’s best interests, he went on to provide further written evidence for
the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the
letter indicating that he had new information that changed the picture for Charlie, that
brought this case back before the High Court.

10. When the hospital was informed that the Professor had new laboratory findings causing
him to believe NBT would be more beneficial to Charlie than he had previously opined,
GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.
It was, therefore, with increasing surprise and disappointment that the hospital listened
to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he
not visited the hospital to examine Charlie but in addition, he had not read Charlie’s
contemporaneous medical records or viewed Charlie’s brain imaging or read all of the
second opinions about Charlie’s condition (obtained from experts all of whom had
taken the opportunity to examine him and consider his records) or even read the Judge’s
decision made on 11 April. Further, GOSH was concerned to hear the Professor state,
for the first time, whilst in the witness box, that he retains a financial interest in some
of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the
information obtained since 13 July gives no cause for optimism. Rather, it confirms that
whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.


IMO he, and others, were simply giving the Gards false hope for their own ends.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Mon Jul 24, 2017 4:08 pm

Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response. In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Mon Jul 24, 2017 7:16 pm

http://news.sky.com/story/great-ormond-street-hits-out-at-us-doctor-over-charlie-gard-10960025

Great Ormond Street hits out at US doctor over Charlie Gard
The London hospital says Michio Hirano should "reflect" on the effect his statements had on the boy's family.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  Lamplighter Mon Jul 24, 2017 8:01 pm

Lord Robert Winston, Professor of Science and Society at Imperial College London, told Sky News that GOSH staff have just as much knowledge of Charlie's condition as other doctors across the world.

He said: "I have looked up Dr Hirano and what he has written - the fact of the matter is that they have not published details which show that they clearly could have changed this boy's life and the prognosis of the disease.

"I have to say it was rather wicked to give the parents the idea that somehow had this baby been treated earlier it would have made a difference.

"That is not our experience with this disease."
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Mon Jul 24, 2017 8:32 pm

I saw him earlier, LL, he was very good, and maybe a little angry, too. It was indeed wicked to give the family false hope; which they then used via social media to stir up a hate mob against GOSH. A sad, sorry business all round.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Tue Jul 25, 2017 9:07 am

Yesterday's judgement

https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf

Including-

Not for the first time the parents through their solicitors raised the prospect of
criminal proceedings against the hospital and its staff.


Words fail me. Who was advising them, Bennett?
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Post  bb1 Tue Jul 25, 2017 12:23 pm

Oh, FFS, now what?

Richard Woodward‏Verified account
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Lawyers representing Charlie Gard's parents and Great Ormond Street Hospital back at the High Court for hearing this afternoon. Unclear why


Doubtless they've found another way to drag the NHS and GOSH through the mud - with taxpayers footing the bill, naturally.

Hard not to get the impression this is about them, not Charlie.

Oh - I do hope they're not now demanding Charlie be allowed to die at 'home' when GOSH has been his home for most of his life? Also, any GOSH staff would need police protection from the internet lynch mob the Gards have whipped up - they even did it yesterday.
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Post  Lamplighter Tue Jul 25, 2017 12:39 pm

A thought, wasn't over £1 million raised to get the child to the US - now the court has determined his fate will this money be returned to the donors?    Just asking.   LL     hmmm
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Post  bb1 Tue Jul 25, 2017 1:03 pm

I doubt it very much, LL. Remember, there's not just that money, there's also the tacky online shop selling car air fresheners bearing the poor child's photo, among other delights. There is also a bank account in his mother's name purely for donations 'for the family'.

I find it sickening and undignified, on top of all the disinformation the Gards have spread, and the social media lynch mob they've whipped up.

Poor Charlie seems to be very low in their priorities, actually.

I do wonder if they simply cannot face the simple truth that it was the defective DNA they both carry that caused the disease, and that their child was doomed from the second he was conceived - so much easier to blame other people!

I do know they are never going to find any peace of mind, or closure, acting like this. Public sympathy is also starting to wear very thin indeed.
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Post  Lamplighter Tue Jul 25, 2017 1:14 pm

I do wonder if they simply cannot face the simple truth that it was the defective DNA they both carry that caused the disease, and that their child was doomed from the second he was conceived - so much easier to blame other people!
I feel sorry for them ONLY in that they may never be able to have a child; there will always the specter of what happened to Charlie hanging over them. As for the money, I wouldn't be able to look people in the face. LL
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Tue Jul 25, 2017 1:24 pm

http://news.sky.com/story/charlie-gards-parents-head-back-to-court-10961299

The parents of Charlie Gard will return to the High Court later today to request permission to take him home to die.

Oh, who wouldn't want to transport a dying baby, on life support, through a media scrum, and a mob of hysterical women waving blue baloons and 'souvenir' plastic tat?

With a God-bothering American evangelist along to keep the mob in a frenzy? And police to protect medical staff from the mob?

IMO, if the Gards really cared about Charlie, they would let him slip away peacefully and quietly in GOSH, instead of putting themselves first, and causing a circus yet again.
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Post  Lamplighter Tue Jul 25, 2017 1:39 pm

'HIS LEGACY WILL NEVER DIE' Charlie Gard’s parents pledge the £1.3million from funds donated for his treatment in the US to help other sick kids.

Mum, Connie Yates and dad, Chris Gard pay homage to their little boy vowing to help the 'next Charlie get medicine before its too late'.

https://www.thesun.co.uk/news/4091813/charlie-gard-foundations-parents-donate-1-3-million-pounds/
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Tue Jul 25, 2017 2:02 pm

“We will do our utmost to ensure that no parents have to go through what we have been through and the next Charlie that comes along will get this medicine before it’ s too late and Charlie will save many more lives in the future, no doubt about that.”


They're still in denial, LL. There were barely weeks between Charlies diagnosis and the start of the fits and siezures.

Professor Hirano (“the Professor”), whose laboratory
research has an international reputation, is very well known to the experts at GOSH and
he communicated with them about NBT treatment for Charlie at the very end of
December. In January, GOSH invited the Professor to come and see Charlie. That
invitation remained open at all times but was not taken up until 18 July after being
extended, once again, this time by the Court.


That's how interested their supposed miracle-worker was, till Trump stuck his oar in and Hirano saw dollar signs.
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Charlie Gard: Great Ormond Street considers 'new evidence' - Page 3 Empty Re: Charlie Gard: Great Ormond Street considers 'new evidence'

Post  bb1 Tue Jul 25, 2017 2:41 pm

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Armstrong: we believe a portable ventilator should be perfectly possible.
4 replies 10 retweets 15 likes
Reply 4 Retweet 10 Like 15 Direct message
Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Armstrong: if Charlie had been taken to the US, a portable ventilator could have been used. We can't understand what the problem is now.
1 reply 18 retweets 17 likes
Reply 1 Retweet 18 Like 17 Direct message
Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Armstrong: transfer across London seems problematic. Judge: practical problems?

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gard: earlier, the judge asked if Connie Yates was happy for this hearing to remain open to the public. She said yes.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge: GOSH says ventilator won't fit through the front door of the property to which Charlie's parents want to take him.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Armstrong: what power does hospital have to prevent a patient being cared for in a way the court regards as appropriate?
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Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge: these are issues that cry out for mediation rather than a judgment by me.
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Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge: what about a hospice? Armstrong: second-best option.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Armstrong: parents and GOSH have disagreed on timing and venue.


Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge ask Gollop QC for GOSH if hospital can meet parents' wishes. She replies: they have been trying to have a conversation with parents.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop QC: further discussion will take time "to no useful purpose".
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Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop QC: hospital has offered mediation several times since Saturday. We don't understand why parents don't want mediation.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop: GOSH would wish to meet the family's wishes if practical, safe and in Charlie's best interests.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop: a plan had been worked out two weeks ago to avoid any sudden mishap. If that's now proposed, we could look into it.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop: the expert evidence just delivered to the court is of uncertain weight. It was not presented to consultants this morning.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop: GOSH has taken enormous care to find hospice willing to take Charlie. Hospices can't provide medical care of the sort Charlie needs.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Gollop QC: we've been trying for a very long time to balance parents wishes with Charlie's interests.


============
Anyone still doubt that Charlie's parents are putting themselves first?
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Post  bb1 Tue Jul 25, 2017 2:43 pm

Joshua Rozenberg‏Verified account @JoshuaRozenberg  3h3 hours ago
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Judge: could GOSH provide similar assistance if Charlie taken to a family member's home? What's the problem with transport to a home?

Joshua Rozenberg‏Verified account @JoshuaRozenberg  3h3 hours ago
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Gollop: because parents wanted several days with Charlie at home on ventilator.


And doubtless the barmy army demonstrating outside, and abusing medical staff.


Last edited by bb1 on Tue Jul 25, 2017 2:49 pm; edited 1 time in total
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Post  bb1 Tue Jul 25, 2017 2:46 pm

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge: if a day or two would help, I'll adjourn. If not, I'll decide. But better if they can agree.


The Gards won't agree, they'll be back in court with new demands.
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Post  bb1 Tue Jul 25, 2017 2:52 pm

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Victoria Butler-Cole for Charlie's guardian: the family's new expert needs to speak to GOSH so that we know if there's a practical option.


Another 'expert'? Could the Gards try putting their dying child first, for a change? Or are they too busy in court and on social media?
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Post  bb1 Tue Jul 25, 2017 3:00 pm

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge: we do need to have a deadline for discussions among the parties. I suggest we sit again at 1400 tomorrow.


So. Another day of suffering for Charlie, courtesy of his parents.
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Post  bb1 Tue Jul 25, 2017 3:26 pm

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Armstrong tries to explain dispute that has been taking place over the past few minutes in private.

Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Butler-Cole: full disclosure and communications must be ordered.


Joshua Rozenberg‏Verified account @JoshuaRozenberg 3h3 hours ago
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Judge: I direct that the GOSH palliative care consultant should speak now to the parents' care expert. I'm happy for the lawyers to listen.
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Post  bb1 Tue Jul 25, 2017 3:40 pm

*@skyfieldnewsed‏ @skyrobcatherall 3m*
Now disagreement between family's legal team and barrister for Charlie's guardian over events during the adjournment
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Post  bb1 Tue Jul 25, 2017 3:46 pm

@Vinny_LBC tweeted

CY has just shouted to GOSH barrister Katie Gollop "let us get what we want for once" on way out


What she wants, not what is best for her child......
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