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.

Pertinent section of that Times article (Thanks for posting Lovely):

"The world community is getting together. I think we’ll see something emerging soon.” It won’t be a cure, and it won’t help all sufferers, but he says it will be a start. “I would be very surprised if we don’t get a licensed treatment of some sort in the next five years.”

If this is accurate (and I feel it is based on the source), it really confirms that there was never any hope of a "cure" for Charlie.

Wannabe I completely agree that medical professionals shouldn't be treated as infallible all-knowing beings. I've had my share of encounters with them where they have not wanted to admit they're wrong or that their knowledge is limited. I think in this case though the hospital have shown their reasons for the course of action they've taken. This is why the court process has been the right thing to do, however sad that it has to come to that - reasonable and independent judgement has been applied looking at all the evidence.

It's not the move home that's the issue, that can be done and has been offered

I admit to being confused about this. GOSH have made quite clear in their latest statement that they don't consider a "move to home" to be a possibility, which reflects the judge's remark that either GOSH or a hospice are the only possibilities for end of life care

Please can someone therefore clarify for me why it's still being posted that GOSH have offered a transfer home?

MN is about supporting parents, but support comes in lots of forms. There are numerous threads where the poster is roundly attacked (not leaving a DV relationship - by leaving your kids in that situation, you're as bad as he is - that sort of thing) BUT as support to help the poster open her eyes and realise the potential harm she is doing to her kids.

This.

As I understand it GOSH (sadly, because it sees the most complex children medically) is used to providing end of life care. They have various options on-site, plus relationships with hospices. Presumably all of those are open to C&C, who have refused (as per GOSH statement) to discuss it with GOSH or mediators.

Not that I support this idea and the issues GOSH have will still exists however whilst they concentrate on knocking walls down, if money isn't an issue I'm surprised they haven't thought about renting a more suitable property.

Please can someone therefore clarify for me why it's still being posted that GOSH have offered a transfer home?

It was my understanding they had offered he could go home but only if they agreed to life support being withdrawn within a short time frame of being there - I think they said 6 hours. That way he can remain on the smaller, portable, ventilation equipment which can be accommodated.

I know there has since been talk about the issue of stairs since then but I'm not sure how valid that is if I'm honest. I'm sure I read somewhere that they live on a ground floor flat anyway? I don't know.

I'm sure if you can find the Tweets from yesterday's court case it was mentioned in there about the possibility of being allowed home. Don't quote me on that though

if money isn't an issue I'm surprised they haven't thought about renting a more suitable property.

Who knows, you could be on to something!! Maybe they'll say to the Judge today that that's why they want to do?

Scrumptious but then it wouldn't be 'home' and that is what they want. The hospice would be the best compromise and I hope they can come to terms with it.

If they're on the second floor, are we "just" knocking door the entrance wall, or "just" knocking down their living room wall - assume then we're "just" using the cherry picker again too?

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

An excellent point, very well made

...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

And is this, perhaps, is the reason why the "rules" don't appear to be consistently applied? As I've mentioned before, MN is a business which is very much dependent on the attention/clicks it gets - which is why I'll be surprised if the thread is deleted this afternoon, at a time when the visits to the site are likely to be massive

wannabe I think everyone has defended the parents rights to take this to court, and I'm sure people agree with the judge that legal aid should have been available to them to facilitate it. Maybe that might be a positive thing that comes out of this, that legal aid becomes accessible to people in C&C's position.

A portable ventilator like the sort that would take him to a hospice was a possibility but the sort that would be needed for a week at home (which is what the parents wanted) is not. I imagine GOSH offered the former in the early days but being moved and quickly being extubated was rejected.

Thank you everyone who has been so informative on this subject. I'm hiding this thread now as what I considered a perfectly reasonable post was deleted and not just deleted but deemed worthy of a temporary ban. As I don't think what I said was wrong I could fall foul of MNHQ imo perverse ruling.
If you do move this thread to somewhere more relaxed about backing GOSH could someone PM me the link.
Thanks again to all those who've shared technical knowledge and personal experience.

And as a child with special needs (thankfully nowhere near this scale), yes, I disagree with various suggestions for her care at times. That's usually when a generalist (e.g. mainstream school teacher) is insisting that their 20 years of teaching means that they know best, and refuse to read any of the excellent LA-produced leaflets and booklets about how a formerly LAC may need a slightly different approach.

By all means disagree when you have to - a parent SHOULD - but know the limits of your own knowledge as well.

My heart went out to CY as she left court yesterday as nobody can, or ever could, give her what she wanted- for her baby boy to survive and to thrive. It feels like GOSH has become a symbol of Charlie's condition and that all the time they are fighting against GOSH they are fighting for him.

I've posted on and off on these threads but read them all. My child had survived cancer by the time he was 12 months old and I've experienced a close family member have to withdraw life support for 4 very young children and seek treatment in America for a fifth. Whilst I've not been in C&C's precise position I still have a first hand in experience of what they are going through and have to remind myself of this every day before I judge them too harshly.

I am extremely interested in the role of both traditional media and social media in disease and treatment, particularly how it can work for and against parents in achieving raised awareness, support or fundraising and in the near future I think a serious debate needs to be had about this.

On Charlie being taken home:

From GOSH's position statement, issued yesterday:

Charlie's parents want him to be with them and ventilated at home for several days before receiving palliative care. Above all, GOSH wants to fulfil that last wish and has considered it very carefully. The key obstacle, and one which the hospital cannot see a way around, is the reality of the invasive ventilation that Charlie requires.

So far as GOSH is aware, invasive ventilation is only provided in a hospital setting. It requires air to be forced into the lungs. For reasons that are obvious, that process and the correct, safe positioning of the tube have to be monitored by an ITU trained nurse at all times, with an ITU doctor on call and close at hand. Those resources cannot be provided by GOSH to Charlie at his parents' home. GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door. There are then stairs to negotiate and corners to turn. The physical lay-out of the route between the ambulance on the pavement and their home would require Charlie to be taken off the ventilator and provided with only "hand-bagging" until he was inside.

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

Someone mentioned a while back about the status that would be applied to being the one to find the doctors or nurses that would be able to facilitate the move home. The same would apply to the builders. This is a very interesting phenomenon in our culture currently. Daily we see viral threads or videos of people doing good things and that is commendable but also the 15 minutes of fame associated with this that doesn't always feel that authentic.

wedonotsow
Yes you imagine GOSH wouldn't be keen to keep him. My hospital appeared to be non obstructive. In fact they said she could go home, as long as I met certain conditions. Which as soon as I met, they changed.
You would have thought they wanted the bed back.

I imagine the parents want something they feel they have achieved even if it is A small goal.

I was just browsing Twitter and came across a video posted by Update News. I found it under the hashtag #CharliesArmy.

There was a candle lit vigil outside the High Court. In the video, both the Pastor and Catherine Glenn Foster blame GOSH for wasting time and ultimately causing Charlie's death.

Can GOSH sue or do they just have to accept people slating them and their reputation going down the pan?

Well again just a bit of social context really.

We have just had a visit from our lovely allocated police support person (I don't mind as he is really really handsome ) because as a result of this case and the misinformation that is circulated our threat rate has risen. i.e. some loons have made credible threats against us (me and my colleagues). Yet these are the same folk that have managed to track down my colleagues telephone no (see earlier post) and demand that he assist Charlie go home.

Someone said they did not see the relevance of the thread now but it is having unforeseen consequences that should studied and analysed in the future. Lessons can and should be learned for the future. If unchecked then research will suffer in the long run. Research is not an instant cure a problem and solve all situation. Each piece of research is a fine thread which is interwoven with other fine threads leading to a breadth of knowledge.

Oops have to go security sweep complete so we can get back to work.

CA are going to blame Charlie's death on GOSH. Even now as of today they are saying if "gosh and the courts hadn't wasted time, Charlie could have had treatment" "gosh want Charlie to die there because they don't want a post mortem carried out as it will show what they did to Charlie"

DH just means a side room with a change of personnel. As my posts say, it is about changing the environment and personnel to remove the negative connotations. It's common for patients to be referred to him when relationships have broken down with their own HCP for lots of reasons. Often he is carrying out exactly the same treatment but a change of environment (and that can just be a change of surgery rather than a totally different building) and a change of personnel totally changes the dynamics of the situation

He is - of course - not advocating creating a hospice at GOSH but looking at it from a clinical perspective and trying to work out why the parents want a transfer. It seems to be to escape PICU and the personnel there. Not the fabric of GOSH. So the existing infrastructure should be utilised to do that. Seems sensible and definitely in Charlie's best interests to be moved down a hall or a floor

The role if the media us interesting. When reading the statement "the ventilator cannot fit through the front door" taken at face value means the parents look irrational as clearly taking down walls is unreasonable. I don't recall ventilators being so huge as not being able to fit through a door.

Certainly people do go home and ventilators must fit through doors in that instance.

Interesting point made up thread about treatment for Charlie's particular mito may be ready in about 5 years time. I said this many threads ago. This was the really sad bit about Charlie's case. Only 16 in the whole world with Charlie's type of mito. So very rare. But, to be fair, research, including breeding the 'right: mice. I.e. mice with same mito as Charlie's would take about 2 years. Then the lab tests on those mice and then the replications before it can be licensed etc , at least 3 years.
So although a similar treatment, ( not for Charlie's type of mito) is available now it is still in its infancy. If it is believed it can cross bb barrier then great! But still no good for Charlie as there is no evidence as yet it can cross that barrier.
But it will be within that time frame of 5 years or so. Too young in its development and too late for Charlie who does not have 5 years. Tragic but unavoidable. He could not be helped at this time.

Yet these are the same folk that have managed to track down my colleagues telephone no (see earlier post) and demand that he assist Charlie go home

Bloody hell.

Just when you think there is nothing left that a case could surprise you with...