Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

Hospices tend to be small and not really geared up for huge amounts of visitors..least of all noisy ones [like CA]. They do have to think of their other 'patients' also in their care.

I'm a nurse derxa and there isn't a chance I'd want to go to the home of this baby given the family's obvious mistrust of the medical staff, would you?

derxa you won't be flamed here, this is a place of reasoned discussion. I'm interested to know why you agree with C&C despite all the assertions from medical professionals (both at GOSH and those commenting on these threads) that what they want just isn't possible.

Can you imagine how other families with relatives in hospices would feel knowing this was rolling into town? Horrific for any involved

Charlie seems to matter not a jot in this, it is concerning that the parents are still being humoured and given a saintly image because of their child.

When does anyone get to be firm with them and stop it?

A lovely local hospice nearby never refers to people staying for respite/pain management as 'patients' but 'family'

I read somewhere (think it was the Daily Mail article) that the parents would pay for private drs / nurse to provide the at home care.

Exactly what I was thinking - would highly trained HCPs with an in-depth knowledge of Charlie's needs even be available to just drop everything & spend 10 days or more at the Gard's home? I'd guess not. There are still some things in life that money can't buy. No-one worth having is going to drop their other patients for the duration, even if the money offered seems generous.

It has just got so out of control hasn't it?

Specialist PICU nurses and palliative care nurses don't generally work in the private sector. All the money in the world doesn't buy you that even in London. Two nurses are needed to check drugs and infusions. Staff to cover breaks. Rest areas. All without the security and comfort of a hospital or hospice with doctors on hand if handed. And the lack of trust.

Charlie's home is GOSH
he has been there for the whole of 2017
the one remaining sense he is likely to have is smell
GOSH smells familiar
and they want to take him away from it

selfish, selfish, selfish

I saw the comments on Twitter about removing windows and using cherry pickers - because it's just that simple to do, and so incredibly dignified!

So it's the logistics of ventilation and nursing him at home that prevents them from taking him to their home is it? I don't understand why they would need permission otherwise full stop

My mum was in a hospice shortly before she died and it was a wonderful peaceful place, can you imagine what it would be like if for all the other people there if Charlie was admitted to one? Poor little mite but poor them too.

teainbed is correct, I can't think of any apart from specialist retrieval teams.
Plus you would need security.

Santa good point..anyone experienced in terminal care would be very busy, and wouldn't drop their current patients, not even for thousands £.
Money is not driving factor.

I would imagine that there is some fairly frantic discussion going on right now, will they adjourn until tomorrow I wonder?

There not a chance in hell that GOSH could allow their employees to go to Charlie's home. That's an employment tribunal claim/personal injury action waiting to happen. WHat an own goal by Charlie's Army

Tillymintsmama - the previous order stated that Charlie must not be moved from GOSH without consent from the judge.

Officeshoes..yes, Hospices are peaceful..very lovely places in the atmosphere of calming reassurance. CA turning up mob handed would be ghastly.

'life at all/any cost' doesnt, and shouldnt, IMO apply to a tiny baby, simply because he has no choice. My best friend's daughter died aged 19 from glioblastoma (particularly horrible form of brain cancer). She MAY have chosen life with multiple disabilities over death; but she had 19 years of formative experience and, had treatment been available, could have made that choice as an adult. What does Charlie have? nothing except death, which IMO is his best option, or just a miserable existence on a ventilator, deaf/blind, no movement, nothing to bring joy to HIM. I have really lost all sympathy with the parents.

Money has never been a factor has it, some things are beyond that. I don't think all the £'s in the world would persuade many nursing staff to get involved in this in the family home.

Does it ever happen I wonder? In RL I was going to say! That sorts of sums up how this all feels, farcical

Well as a registered nurse there isn't a hope in hell that I'd even consider taking this on no matter how much money they offered. I value my wellbeing and my registration too much. I imagine that the vast majority of my fellow RNs feel the same.

Much as I respect the judge's desire to deal with this via mediation and not make a mandatory order, where we are at now is that he needs to do it. Mediation is optimimum and does deliver better outcomes, but part of that is because by its very nature, for mediation to work the parties have to be in a better place than these parties are now. Ie, it's not just the mediation itself but the things that are in place to allow it to work. If those things aren't there, you can't replicate the same positive outcomes just by forcing mediation.

He's right that this is all very unsatisfactory, but an order is still needed.

From previous posters on these threads who have worked with specialist retrieval teams who bring children home on vents:

I'm sure I seem to remember that those teams extubate fairly quickly after arriving home with the child? Not least because they cover large areas and have other families to help. Providing ICU level palliative care of a ventilated child at home for some days seems a very different thing to this?

Agree the judge needs to be firm, they are stalling for time now so obvious