Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

I would think it would remain confidential. It would be a normal clinical meeting between professionals of which the results of the meeting would be discussed with parents/family and included in case notes. I think the judge would have access to enable him to rule. But it should follow the laws of patient confidentiality surely.

Yes the transcript of the meeting is for the judge so he knows exactly what has been said.

Presumably everyone in the meeting would get a copy, though?

If I was the judge, I'd want assurances that all parties present at the meeting would maintain confidentiality as a condition of them being allowed to attend. That would extend not just to what is said, but the names of those attending, if the judge should think it appropriate.

(I wonder if it's going to be possible to maintain the anonymity of the medical professionals. Hirano has already been named, and I see the Newcastle man was outed in the DM article referred to above.)

I need to work out who the person who made the 'held hostage' type statement speaks for. Giveno that HHJF said that the baby was not to be taken out of the country without his knowledge, I would certainly consider that disrespectful of the judge; don't know about the definition of contempt of court.

I agree that the judge is aiming for a new process for these cases. Especially as parents can't get legal aid. Perhaps he's aiming for a fast NHS-funded effective process suitable for fast-moving research led situations. I got the feeling he was frustrated too by eg all those statistics on improvement, saying no evidence on brain damage, but then on cross saying that a paediatric neurologist would have to comment on the damage. In a mediated hearing all the opinions already given, including the paediatric neurology report that GOSH have already gathered, would already be on the table.

Perhaps this should be part of the ethics committee process?

Alabama presumably the Gards did not want the pastor enough to pay for his trip.
The statistics for relationship breakup for parents of a child with special needs/disability are high. I can't remember the exact statistics, but when our own son (with Aspergers) was at his worst I do remember how difficult it was, but nothing compared to what C and C are going through. If they disagree about what should happen it could put unbearable strain on their relationship.

I wouldn't be surprised if the family release their copy of the report, however their findings or the bottom line of the meeting will be mentioned in court and the final judgement.

transcript sorry, not report.

To be fair to Dr Hirano, I don't think he has made exaggerated claims, has he?

I thought he was quoted as saying that he may have "overstated" things ...?

this is absolutely not a criticism of Connie, but when I had to see a consultant regarding a very rare and complicated condition, I took a friend along who is a Doctor. I did this for 2 reasons. firstly I might not be able to understood what he said, and also so they could ask the questions that I couldn't think of.
I think the meeting will be very difficult for her to understand.

Sorry - I should have added I certainly did not understand a lot of what he said.

From what was said last week, Connie considers herself to be an expert in Charlie's condition..

The Mail is despicable (I know, colour me surprised).

They would have loved to use poor Charlie's story to yet again castigate the NHS and the medical profession. However the readership has throughout been supportive of the GOSH position, judging by comments on all the articles.

They appear to be setting up Prof Hirano to be the villain of the piece now, as either a dangerous quack or Mengele figure.

He's talked about %ages of 'success' of his work but I'm absolutely certain that he has never said or implied what the Gards have taken from all this: that Charlie has an at least 10% chance of being "a normal boy". This is what they absolutely believe and that is why they are fighting.

Bore - you read the Mail

I too have wondered about the pressure on the parent who starts to work with rather than against Charlie's medical team at GOSH. They will forever be the one who did not keep fighting.

I have read the GOSH position statement several times now, as well as many of the helpful points on here.

The case is tragic for all concerned, and I can understand the parents holding out for a miracle. But I also agree it has become a political football for the privatised healthcare lobby, and as a means of discrediting the NHS overseas. I also agree it raises profound ethical issues about the best interests of the child. In terms of the threads on here, I think posters did a good job in screen-shotting threads and sending them to the police.

There may well have been issues around communication, we have all had doctors whose manner has been abrasive, whilst others are just lovely. But such a breakdown in communication seems to me really that one party does not want to hear what the other is saying, not that there is no communication or simply a poor manner.

Please can someone explain where the next court date of the 24th is coming from? Is this to allow Dr Hirano to come over?

There are a number of charlies army on this thread, I have just had that proved by Elle cee on facebook,so keeps going round calling me a troll and vile and anything else you can think of isnt that right Elle cee???

I don't think Dr H has done or said anything to be ashamed of. His word are twisted by others for their own ends and misreported.

I do think he's being set up by various factions,

WRT the awful pastor. Didn't he go back because his sister died?

Jux I agree about the doc being a muscle specialist and also about the judge seeming very clever in what he is doing. In fact I wouldn't be surprised if he predicted exactly that Connie would want to be at that meeting, and it will mean she has to come to terms with the situation as it is. in the same way, he reminded her of what they said previously about not wanting Charlie to continue with the same quality of life. He is trying make her come to her own way of seeing the situation for what it is. Before Charlie dies. And also it will be seen that such discussion should take place before court action in future. As he has mentioned himself, already.

I feel a bit sorry for Dr Hirano. I don't think he would have imagined this to go so far.

Interesting about CA being on here

How do they know who you are muckypup?

redshoe I do make a point of looking at their take on high profile news, especially health stuff (it can impact on my area of work). I often find the comments a very useful barometer.

I think it's fairly patronising to assume that a layperson won't understand medical terminology. There are laypeople who have immersed themselves in medical textbooks and journals, particularly parents of children with medical conditions.

They won't have the clinical experience but that doesn't mean they can't follow a discussion.

I would find it concerning as a parent that doctors don't feel they can speak freely in front of patients. I am a parent who would want to hear that discussion. I'm well aware that it would be stark, impersonal and distressing. But there are people like me who would find it more distressing not to hear it.

I'm not Charlie's Army. I don't think the treatment is in his interests from what I know. I don't think it should be dragged out like this either. I also see that they have found it difficult to stay calm in court. And from that I expect they haven't been unobstructive on the PICU either.

I think it's the lawyer who's gone back becomes someone died. Although the pastor may also have done.

LovelyBath77, because she has taken something off here and put it on the mail, shes following me around like a bad smell, it was lastnight when I said I have 2 accounts and and I am blocked by Ca on one so i use the other to look on Ca and she has gone on themail telling everyone I have 2 accounts lol I should think myself lucky I have a stalker, I have never had one before lol

I don't think we are going to hear much before they go back to court. And I can't remember when that is now, is it Tuesday or the following week? Judge has to read up on the meeting doesn't he?