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.

he had a significant number of emails from random people asking if he could assist in Charlie being taken home. I asked what the significant number was and he said stopped counting at 250.

OMG!

Sureky thats harassment?

I did see in CA a comment from someone who said they had tweeted various people ab would tweet them every hour until they replied.

I know they think they're helping but it's getting out of hand.

And as for taking the walk of the block of flats to get the equipment in? What on earth? And then what? Instantly rebuild it again? How long does thdf take? Is Charlie just expected be exposed to the outside weather conditions during this time? And then, when the equipment needs to come out they're just going to rip the wall off again?

Can these people really not see how absolutely ridiculous all this is?

I guess as well C and C will have seen/heard of other children who gone home to die - I am thinking of perhaps Bradley Lowery and the photos of him on his parents bed surrounded by his siblings and friends. And they will bet hinking 'FOR FUCKS SAKE WE CANT EVEN HAVE THAT'. I feel for them so much, it's such a cruel hand they have been dealt.

So am I right in thinking that transferring him anywhere at all would involve removing the current tube in his lungs and putting a new one in? Or not? Because surely that would be horrible in itself?

If a solicitor made that comment about reclaiming costs from the NHS, that's pretty astonishing. To do that, they would have to establish that the NHS has a duty to provide round the clock care in a terminally ill patient's home for as long as that patient wants, even if that care requires them to supply a team of highly specialist medical staff who will then be unavailable to work with seriously ill patients at the original hospital. They would also have to show that the NHS has a duty to do that even though it is completely against the law. If the solicitor seriously wants to run that claim for free, good luck to him or her.

..... cant they employ private doctors and nurses to do the move home?

It's not the move home that's the issue, that can be done and has been offered, the issue is that the parents want him to be ventilated in their house for a whole week before life support is withdrawn. GOSH has said it just isn't possible and C&C and the CA won't accept that.

I did see in CA a comment from someone who said they had tweeted various people ab would tweet them every hour until they replied.

Lovely. So they are harassing palliative care professionals who may well at this moment be looking after terminally ill children. Words fail me.

Yes CA are just pathetic. And you can see it's not out of love for Charlie they are doing it. It's so that Joanna Bloggs could get her 5 minutes of attention if it was the doctor or nurse that she contacted that ended up facilitating Charlie going home. Imagine, she might even get a mention from Chris or Connie! They would have her to be grateful to forever more.

Of course, it's not going to happen anyway.

Thank you to the poster who mentioned the Radio London programme. I managed to find a stream online. The discussion has been interesting so far.

Is this just another stalling tactic to get Charlie to his birthday?!

Page 11 in the Tines today discussing the case in detail along with fertility treatments for mito in parents (which was mentioned as being inappropriate for discussion on here yesterday )

So am I right in thinking that transferring him anywhere at all would involve removing the current tube in his lungs and putting a new one in? Or not? Because surely that would be horrible in itself?

Highly, highly unlikely. Most equipment is standard across the Country so children can easily be transferred to one ventilator to another just by quickly taking the tubing off one ventilator and attaching it to another.

In my 6 years of seeing children transferred between ventilator systems I have never seen one have to have whole new airway equipment inserted to allow it to happen.

That's just my experience though - I can't say for definite it's not the case for Charlie.

www.thetimes.co.uk/edition/news/promising-treatments-for-mitochondrial-disease-in-pipeline-say-scientists-r0h70gpjn

You can access a few articles for free, btw.

LovelyBath Will read it, there are many other inherited 'recessive' conditions..like CF
Parents cannot possibly know in advance their genetic heritage, but if it is known, then it is surely sensible to know what to do to prevent the same condition occurring [but don't want to risk a deleted thread]

Dunno about anyone else, but I'm getting sick of reading the word "just" re this case!!

Tbh I'm not entirely sure why this is even still being discussed on here or anywhere else. The baby is meant to be being allowed to die, the judge has stated on the BBC news article that it's highly unlikely they will be allowed to take him home. Anyone can become a keyboard warrier and claim they're going to say/do this and that. Surely by discussing it further you're just giving airtime to people who shouldn't be given any consideration what so ever?

these Charly's army types don't actually carry any weight or influence, so why give them any platform at all?

For anyone new to the thread, if you'd like to read the hospital's position statement regarding the issue of taking Charlie home vs hospice or hospital, please see the PDF link in this page :

www.gosh.nhs.uk/news/latest-press-releases/latest-position-statement-gosh-patient-charlie-gard

LovelyBath The Times article greyed out..will read it in copy of physical paper. [looks like it will be fascinating]

As for the potential ethical issues coming from this case, IMO nothing will or should change. To accept the word of medics as gospel is a dangerous road to go down. There was no doubt that in this instance allowing Charlie to die was the right decision, however we cannot simply accept that the medics are always correct and the parents misguided. Remember Charlotte Wyatt? Medics argued for her to be given a DNR as her lungs were not expected to mature and she was not expected to survive. Afaik she is still alive some eight or nine years later.... and although in foster care, is not in hospital......

IMO every case needs to be examined on its own merits, one should not dictate outcomes for all....

Dunno about anyone else, but I'm getting sick of reading the word "just" re this case!!

''JUSTisce ?

A little thought/common sense goes a long way
Knocking down walls is not practical.
Maybe people on CA who suggest this are remembering rare cases where walls were demolished to get baryatric patients out of their homes.
Hassling the bejazus out of busy HCP's is not on either.

This is horrific.

I feel so desperately sorry for the parents but they have to stop fighting everything and let him go. I wish they had someone who could convince them to let go.

so c and c live in a flat?

and people ar suggesting taking the wall down

how stupid can u gt

They cannot let go because they believe that their child should have received treatment and should be a normal baby now.
They do not believe he has irreversible brain damage and they think that nucleoside bypass therapy could have cured him completely.
There has been a massive disconnect between medical evidence and their interpretation of that.
This is why they cannot let go. To their minds, an enormous injustice has taken place. They do not want mediation. They do not want a hospice. For reasons best known to themselves, they want to have their final wish which is to spend a week at home with him and they will fight tooth and claw to try and make it happen.

The thread has moved on a bit, but thanks to those posters who answered my Q above about parents suing or recouping costs from the NHS.

Someone suggested setting up a hospice style room in the hospital. Lovely idea but on a practical level again probably not possible - for one rarely do hospitals have a room which is big enough, enough power supply, light enough just sat empty. It would also require extra staffing.

And of course although finances shouldn't play too much of a part in these things realistically it has to and if that was offered for one it would need to be available as an option for anyone.

I thought mumsnet was about support, not judging parents

There's a parent, who has not been described in the most glowing terms as a parent, who has had his "soon to be" family's pre-becoming a blended family" parental positions and opinions splashed all over the Daily Mail becuase of a thread here. At no point can I see where he consented to any of that.

A certain over-tanned parent regularly gets the piss taken out of his attitudes and statements about how he feels about his children on here. He gets judgement by the barrowload.

Parents (male and female) both in and not in the media, get their parenting choices, attitudes and positionsulled apart and closely examined here. Sometimes in a context where "quite a leap" is being made on the sparsest of information with the most negative possible interpretation is applied.

So I don't think the "it's about support not judgement" line washes really.

I do not blame MNHQ for being cautious about this thread. It is centred on a high profile case involving people with significant resources at their disposal and a willingness to go to court if they believe it to be necessary.

MNHQ has every right, and a large wodge of responsibilities towards its employees, to protect its brand and its resources from potential backlash and financial harm.

But we need to stop with the fiction that the site is about a cast iron, firm line about supporting parents. Because on any given day it is the site's content demonstrates that "support, not judgement" is something that is not dished out, defended, expected and ordered with a universally consistent hand.

Which is just as well really. Because if support yes, judgement no - based on status as a parent were the rule..... this place would be deserted within a week.