Charlie Gard 7

[CaveMum]

Continuation of the discussion.

It looks highly unlikely that there will be a verdict today as GOSH have not yet been able to put their case across. The Gard family had their position heard this morning and currently an expert witness from the US is being questioned via video link.

Minkyfluffster I was suprised by the Gard's expert and their advice too.

The statement is excellent in explaining to all, the way they've ended up here and why.

It's one of those things that it is difficult to understand how anyone reading it doesn't get why GOSH is doing what it is

thats what wrong to me minky

hes being considred with no evidence an a very shoddy statement even though the judge said he only wanted new evidence not a rehash of the prvious court appeal

From the GOSH statement plus yesterday it looks like there are 3 main points of disagreements:

• can anyone other than Charlie's parents make a decision about him? (legally, yes they can)
• does he currently have an acceptable quality of life? (parents seemed to agree at one point with GOSH, but now disagree)
• does the proposed treatment have a chance of getting him to a point where his quality of life is acceptable, and if so, how likely is it?

I wonder why they have different policies 0nline?

No idea. Never did get to the bottom of it. The other hospitals in Milan seemed if anything overly keen to whack an epidural in as soon as you winced (I've heard). DS's 1st paediatrician worked in that hospital outside of his practice hours, and he wasn't against pain relief for his tiny patients when treating them in his surgery. It wasn't religious, as far as I could tell, not a lurking nun in sight.

I lost about three years of get up and go to the fug of birth and early motherhood. If I had the kind of energy I have now he is a lovely independent teenager I think I'd be more persistant in finding out what underpinned the policy. Back then I was so tired and shellshocked that as soon as they played the "oh, you forrin, you just misunderstood everything/won't understand what I am saying" card I kind of folded in defeat. My Italian is fluent (when not having an unmedicated induced labour and emergency c-sec) . But it is pretty easy to fob off even a fairly fluent speaker of another language when they are stressed, in pain, or knackered and you undermine their confidence in their ability to understand and be understood.

I love this country, have nothing bad to say about the health service as a whole (rather than individual bits of unexpected difference) . But there is a "medical culture shock" aspect to navigate.

cjt110, my posts of you are not scathing, I just say what I feel straight, I am actually like this in real life, i say what I feel, it is not scathing at you, not sure how you took it that way but hey ho.

ot i know but #ripbradley

twitter.com/SkyNews/status/885805820922834945

very interesting 0nline I think my own experience with operations (15 neurosurgery operations) as well as childbirth, the UK hospitals I have been treated at give it out like smarties. First question I received on presenting at hospital in early labour was "Do you want some pain relief" and seems to be the go to question.

• Please note I am not saying GOSH shouldnt administer pain relief.

how scary online for his sake i hope charlie doesnt end up there

As this thread is nearing the limit, shall I create a new one to hop over to when the time is ready?

Good plan cut

cjt I mean, computer changed it

Why would the Doctor have applied to the FDA yet though. There's no reason for him to have done so is there?

Until he's assessed Charlie and theUK courts have agreed to treatment I don't think that there's any way he actually can.

So is anything being reported now about this meeting, or do we have to wait till this afternoon?

I don't understand why he hadn't seen him sooner, if they were considering it months ago. It is like they are back at the beginning.

i hope charlie doesnt end up there

He won't. I think it is a hospital in Rome with connections to the Vatican that is being proposed. But because I am aware that individual hospitals can have policies Britons might not expect, and because there's a Catholic perception of suffering that doesn't necessarily fit with other people's expectations... I think it is an area where some clarity would be useful. If things move in that direction of course.

New thread here for when this one fills up.

Rafals fair point. You would imagine he(?) would have done some preparatory work though.

lovely He was only asked to provide an opinion. Given the information (or lack of) that he was provided with, he could generate an opinion. Perhaps thats why?

belmontian, I find that hard to belive, I had a brother that had severe cerebal palsy, svere brain damage, deaf, blind, incontintent, had to eat liquidised food,had to have suction, was on a tonne of meds, and bloody hell he felt pain, he would scream for hours and hours, the trouble with Charlie is he cannot cry to tell them he is in pain, can you imagine living like that? in a dark world where you cant see or hear, cant move, and possibley in agony? and not being able to tell anyone about it?

I don't believe it for a second either. I cannot imagine any situation barring an absolute life/death emergency situation perhaps on an aeroplane where a doctor would insert a tracheostomy with any form of anaesthesia. That would be incredibly painful.

Poor wee Charlie :-( The picture that the parents use of him is not recent at all and I was really shocked to see the most recent one of him. He seems like he is very close to the end, regardless of life support.

without any form of anaesthetic

The court seems to be highlighting the difference between US and UK medical treatment.
In the US it seems that, as 'commercial interests' are involved, treatment with very little chance of any significant improvement may be used if it adds to research in finding better treatment for the condition. Of course this treatment, untried as it is, may produce better than hoped for results.
The UK could be called much more conservative as doctors will not, and will not be allowed to, have research interests in mind. Therefore the treatment they give has usually had to be rigorously tested and the possibility of meaningful improvement considered before it is used.
Makes the judge's decision much harder, even though ultimately he has to come down on the side of what is best for Charlie, quite possibly the US and UK will never agree on what that is.

Interesting the Princess Diana Online Syndrome (sorry if I quoted that incorrectly). I was thinking last night about when public emotional hysteria became common. Some years ago I was writing about Victorian traditions of death and brought in the public reactions to Diana's death.
Still doesn't explain why though. Possibly an interesting subject for further debate.

And yes children with disabilities are not easy as I am sure so many of you know. I have a DGS living with me who is so little disabled that compared to children like Charlie he would be considered NT. It is hard, unrelenting work and makes bringing up my other 7 children seem like a breeze.

0nline there's no relevance in talking about Italian hospitals' pain relief protocols. No-one should be surprised that different hospitals have different protocols but we're not talking about someone in labour or undergoing an ingrowing toenail removal. Pain relief is, as others have said, a key part of treatment in the UK. Frankly your post reads a bit like a CA one - which is a shame because your earlier post this morning was very thought-provoking.

That is interesting about the US. It explains why with the adhesions from surgery, I have in US they keep getting more ops for it, despite more ops causing more adhesions, they still do it, hoping to 'cure' it. They have insurance, so people will do it. I did wonder why, as they won't here on the NHS. I'm glad, in a way. we don't have that. For some people, they get more and more hoping each time it will help. And they usually end up worse.

7. GOSH holds and is bound by different principles. A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients. 
 Point 7 from the GOSH statement really struck a chord... Heartbreaking, but so true... just because we have a child, it doesn't always make us well equipped to make the right decision for THEM! Of course every single one of us can understand why Charlie's parents are doing this, they are doing it because they love and adore that little baby boy. It doesn't make it the best thing for Charlie though.

New thread going guys www.mumsnet.com/Talk/am_i_being_unreasonable/2979394-Charlie-Gard-8?

I thought that statement was beautifully written. I don't know if it was written by Katie Gollop, but given that earlier statements from the hospital itself have been equally well-expressed, I suspect that their own comms team is a very good one and had a hand in it.