Charlie Gard 18

[cjt110]

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.

@JoshuaRozenberg
2m
Gard: Court now adjourned to await arrival of the family’s specialist doctor.

I've asked for my post referring to the date to be removed as am fairly sure the relevant tweet has been deleted and I don't want to cause trouble if it's not meant to be reported on.

Would the poster who's copied part of my post please request that their post is also removed just in case?

So they want to buy a new ventilator (I am sure they are plug and play?) hope it works perfectly first time and set up an intensive care unit in a hospice (who haven't yet agreed to this). It will be run by a retired doctor and some volunteer nurses, some of which would have to live on site 24/7 for a week. No one seems to know if this is legal or if those volunteering would be insured. The hospice would probably have to hire security and facilitate an enormous circus (potentially helping bath a ventilated baby), would any other family in the UK get that? And after all that who knows if the ventilator would actually get switched off without a return to court and who knows who will be sued.

That's a great blog justforthis.

It makes me so sad that MNHQ have adopted similar deletion of dissenting voices. This will be a wider problem for society going forward than just CA.

Exactly, smilingmind. People will always take your money.

I have a friend who is a hospice doctor. She works on a rota with two others so there is always someone there. But she's dealing with more common reasons for needing hospice care - cancer mostly. Even then they regularly call in the specialists. A "normal" hospice doctor would not have experience of this sort of condition.

is this just going to be more delays, more checks, more adjournments, the hospice turns round and says no can do, the ventilator firm has delivery problems and so on and so on............

Yup

Bbc reporter has said that the doctor presently travelling to the court has said he can provide an intensive care team in a hospice.

Delurking in a quiet period, to say I have appreciated having this and the earlier threads as a place to observe a wide ranging discussion of the many issues the Charlie Gard case throws up.
Justforthis thanks for blog link - that is exactly the kind of topic I'm interested in hearing about

How things are at the moment, I cannot envisage C&C allowing the life support to be removed when the time comes. I just can't see it.
I really would not be surprised to see this back in court again.

The lovely staff at the children's hospice I used made it quite clear that there were strict limits on how long you could stay thete, due to demands for places.

Enjoyed your blog post Justforthis

Is court still adjourned?

Oh dear, Chris Gard is now tweeting on CGF's thread

Please tell me you're joking ...??

set up an intensive care unit in a hospice (who haven't yet agreed to this but they will agree won't they, as it seems C&C ARE getting their way at every turn, everyone is bending over backwards to give this family what they want, but I doubt this level of 'generosity' would be offered to others in a similar situation. And I've never know so many medical experts appear at the 11th hour.

If someone is capable of feeling a ''tickle'' then they can surely be capable of feeling painful stimuli. I read that CY said Charlie was not in any pain as his heart rate was stable.
But chronic pain one just gets used to?

Rhodiolia Yes.

Forgive my ignorance but what is CGF?

Is this doctor and his team NHS or private ? I just wonder how these people can suddenly make themselves available if they are working elsewhere .

Presumably this means that they haven't fallen out with every individual there. But want to get away from the institution

I'm sorry but that's bollocks
The family have allowed CA posts to stand saying that the actual unit staff (i.e. his nurses) were compliant in overdosing him and faking his symptoms and tests.
If they weren't directing their anger at all the staff at that point then NO WAY IN HELL would they have let posts implicating their childs nurses stand like that

There is no rhyme or reason, they're lashing out left right and centre and I do not believe they've stayed amicable with the nursing staff throughout this!

I've been out and will have to go back to catch up.

What has been on my mind all morning though is this. Never mind the practicalities of being able to ventilate Charlie in a different environment. It has been established for months now, months, that Charlie's is suffering, and more recently that he can still experience pain.

Never mind the location, why do his parents want to make him suffer for another week?

Place marking

I know he knows no different but I'm sad that Charlie could be potentially moved to a strange place and cared for by people that are potentially strangers.

I can't explain why, but that bothers me. I think we would all like to pass in a place that is comfortable to us, even if we aren't aware at our time of passing.

"The lovely staff at the children's hospice I used made it quite clear that there were strict limits on how long you could stay thete, due to demands for places."

Presumably that was respite rather than terminal care

I am starting to feel angry on behalf of other families at the hospital/hospice who are probably going through equally traumatic times and have to contend with this crazy mess.

Sky links.... Seems to be 2 (the latter one has only just appeared...)

news.sky.com/story/live-parents-learn-if-charlie-gard-can-go-home-10962631

news.sky.com/story/live-judge-considers-charlie-gards-future-10959647

Hi all,

Reminding everyone that we'll remove posts that break Talk Guidelines, and because this thread concerns an ongoing court case, please do also refrain from speculating about any elements of the case that aren't already in the public domain.

Do also remember that Mumsnet is primarily a source of support for parents; Charlie's parents are real people dealing with a horrendous situation - please do keep that in mind when you post. Thanks all, MNHQ.