Charlie Gard 17 re started

[muckypup73]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

GOSH wouldn't have a claim in damages in the U.K. as Hirano doesnt owe the institution a duty of care and, arguably, would argue that he was not properly briefed by the parents/their legal team before he attended court etc.

I have banged on and on and on about this on the other threads but this is absolutely a case in point as to why the parents should have had legal aid. BArrusters and solicitors cannot give the same care and attention to pro bono cases - nor should they have to. It's not our jobs to fill in the gaps for free as Michael Gove was repeatedly told when he said it was when he was justice secretary

Hi yes that was me about the chances of another child, and I'll find the link again.

en.wikipedia.org/wiki/Mitochondrial_DNA_depletion_syndrome

there was also a link to article about prenatal testing,. I'll try and find it as well.

www.ncbi.nlm.nih.gov/pmc/articles/PMC4200441/

I'm actually appalled the last thread got deleted - although to be fair I didnt get to the end. This is such an important discussion; Charlie is (or should be) at the centre of everything, but his parents' actions are IMO questionable.

As Ive said on these threads before, I had to withdraw my child from life sustaining treatment and it was of course horrendous and tore about everything in my life that had any value and I had guilt for years over whether I could have done more. But my child was so very ill that they required a ventilator, I think it was an oscillating one at that point, and they had a great big stack of infusions and were so oedematous very suddenly and before that intubation had been in a hell of a lot of pain, and it was not at all the sort of situation that would have worked with a bath and a week at home. I wanted to take my child home more than anything and the urge to just do it was huge but in retrospect it wouldn't have been the right thing for them due to their medical needs and lack of awareness with sedation and ongoing ventilation at that stage. I sympathise with C&C of course but I don't subscribe to the 'all parents who love their child' would do this narrative, I think it makes it harder for parents to be taken as rational level headed intelligent people when this sort of thing happens because sadly between 5 and 6 thousand children die each year in the UK and this is unprecedented but it's already hard enough tackling communications issues and information sharing with family especially around death and dying, and I think it should be spoken about more openly with family without a fear and reluctance about the reaction. I really fear Charlie's best interests and voice were lost a long time ago in this protracted battle. I know that GOSH do what they can about place of death where possible. I know there would be a number of very good reasons why he can't go home and it would not be in his best interests to do so. I hope that Francis J rules (although he certainly shouldnt have to - this should not have been a court issue) that CG can die in a hospice, although again I am not sure that this is in his best interests - it's for the parents and about their hatred of GOSH.

I know I had a post deleted on an earlier thread. When I questioned the logic and argued my case it was reinstated, but I think MNHQ is having a hard time keeping these threads monitored,

If I am honest I found some of the posts on the deleted thread very very parent blaming (I'm thinking of two posters in particular) but that said individual posts could have just been deleted.

I know that one or two posters are gunning for me and I have had a few nasty emails sent to my work (obviously they had made the connection on here) but they are amateurs compared to the real loons that threaten us in my place of employment,

No other reason but to argue?
ODFOD

Thank-you sodablackcurrant

Then this thread may be left to stand ...

It would also be left to stand if people who didn't want to be part of the thread just left us to it instead of reporting us. It just comes across as very childish.

If they had a clinical neg claim would be done on no-win, no fee presumably? I can;t see there is a case though.

Sostenuto, my understanding of the "few hours" issue is that a hospice is not licensed or equipped to provide ITU care, and that therefore the protocol is that the medical team who transfer the patient stay with them for a couple of hours, and then extubate and leave the family in the care of the hospice who will make arrangements for them to spend time with the patient's body - as long as necessary.

I think sometimes it gets reported because people don't like the idea of people discussing it, rather than the individual posts. Could be wrong though.

Thanks soda.
for Rosenburg tweets link.

Secondly, any posts that have criticised the parents have been removed by the mods. I guess on mumsnet, free speech is greatly encouraged especially if it bashes men and pistonheads but criticising parents is a big no-no. One of the mumsnet mods has posted that any posts criticising the parents will be removed

From piston heads

They were objecting to hospice I thought because they are only allowed a few hours there, not overnight? (Can't work out why only a few hours?).

Because hospices don't have the facilities or specialist staff to provide the type of care Charlie would need for longer than that.

The latest GOSH position statement sets out the reasons. Statement quoted in full here:

news.sky.com/story/charlie-gard-great-ormond-street-on-the-key-obstacle-stopping-him-going-home-to-die-10961542
.

I don't understand why we aren't allowed to disagree with the parents.

GOSH don't agree with them. And as the judge has said today that Charlie must stay in hospital or go to a hospices he doesn't agree with then either.

But on MN we aren't allowed to disagree with them

There is only this one thread to monitor as far as I am aware though?

leghoul hugs and for you, cannot imagine how painful it must have been to make that decision.

To be fair, I can see why some people might have found some of the posts on the previous thread to be a bit much. Yes, they were just people's reactions, but they were expressed in pretty strong terms.

Im sad the other thread went as the posts were very informative

It's a shame that the previous thread was deleted but personally I did feel that towards the end, some of the posts weren't really in the spirit of the previous threads. Most comments were measured, fair and informative but there were some that I thought were unnecessary and uncalled for. It's a shame that they couldn't be deleted individually but at least we have the opportunity to discuss the situation further hopefully in a calm and measured way.

Having read the GOSH position statement today, I think the Vincent McAviney tweet regarding GOSH being able to offer 4 days at home must have been a typo. It's clear that GOSH don't believe there's any realistic possibility of Charlie being able to go home at all, not really even for a few hours. The comments regarding having to negotiate stairs and corners in the home were very telling - I would have thought it would be obvious that moving Charlie in such a way would massively increase the risk of him passing during transfer, particularly as it states that he would have to be hand ventilated for a short period? Is hand ventilation a common thing if a patient is transferred?

If I missed the compensation issue, on a legal note I cannot see how they would succeed., It would be a 'loss of a chance' case but there'd need to be more than 50% chance of something succeeding in the first place (from what I remember, dusty brain) - they cannot prove causation. He's been incredibly unwell due to his cruel disease not the delay in treating him.

leghoul
Sympathy to you and yours.

NellieBuff, Nellie that is so wrongon so many levels x where on earth have they got your email addy from???

Does anybody ever bash pistonheads on MN?

I was on Twitter during court hearing and the amount of people tweeting why can't Charlie go home? Honestly it was like being in a parallel world! They were reading tweets that specified some of the obstacles for the home option but still posting why can't he?
I think they better hurry up and start teaching critical thinking or how to comprehend a sentence.