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 ... ?

This is an APPALLING disconnect between his parents and his medical team and needs to be rectified or GOSH will have a damaged reputation and his parents will never have closure. Never.

100% agree on both points - and both are equally very sad outcomes.

its disgusting how gosh has been damned by the media without any proof

so i can stand up an say gosh tried to kill me an id be believed just lik that?

Again chipping in without reading full thread, so apologies if this is off at a tangent or has already been said. Just standing in queue at the petrol station and saw this was the lead in the Mail. Beautiful picture of Charlie which they say 'was taken before he became ill'. NO - Charlie was born ill. This picture shows him pre symptomatic. This is a basic but important difference. This is why many people aren't getting this, right here; inaccurate, sloppy and emotive reporting.

Just catching up on the events of yesterday and this thread. I'm glad that the parents made the decision they did and I hope they can eventually come to terms with it and Charlie is soon at peace.

I'm pretty angry about some of the stuff I'm reading, particularly from Americans. There seems to be a narrative that Charlie is some kind of refugee in a second rate hospital who just needed America (world police) to swoop in and rescue him. The US system has some of the worst outcomes and mortality rates in the developed world, how about they put their own house in order before they start on our system.

I'm also trying to be mindful of the pain the parents were in but I'm saddened that the refusal of two people to accept their son's prognosis has been allowed to cause so much damage to our NHS. I also think that their statement yesterday was designed to cause maximum damage and set up a lawsuit.

One other thought- anyone who is found to have slandered or made threats to hospitals or their staff, or who choses to create and donate to any 'sue the NHS' funds, should be stripped of their rights to access it. If our system is so terrible, go buy some private health insurance.

So now the narrative is that Charlie was never brain damaged, was a perfect candidate for treatment, could have been a normal boy, and it is purely inaction on the part of GOSH and the Courts that has led to his deterioration.
This is an APPALLING disconnect between his parents and his medical team and needs to be rectified or GOSH will have a damaged reputation and his parents will never have closure. Never.

"Charlie is not brain damaged" has been the parents' narrative for months. As I can't believe GOSH and all the other second opinions got this wrong, I almost feel this will have to come back to court in the form of a lawsuit, so that this is thrashed out and made clear once and for all.

Nobody ever said Charlie would be a normal boy; that was just the parents' wishful thinking after seeing other children, with a different less severe condition, who were on the nucleosides therapy treatment and who C & C perceived were now "normal". The trouble is the media pick up this sort of thing and run with it. It is all very sad.

hre here stitch its disgusting

and i agrree about serivces shouldnt be used

rmc-also agree he was born with this he dint just becom ill

Can I ask really silly question, (I've looked though the thread and can't see an answer)

If in January Gosh thought and evidenced that Charlie was brain damaged why did the judge give them a month to raise the money? I'm sure it's not that simple but it's seems that s where the false hope was promised

Media reports have been disgraceful more or less across the board, including the so-called 'quality' broadsheets. I found myself commenting to Dh in genuine amazement yesterday when the BBC's 6 o'clock news was scrupulously even-handed in its reporting - that's how bad it is.

Can I also say how much I've valued these threads for their wisdom, level-headedness and serious debate of the issues. I don't think there could have been anywhere else covering this highly sensitive and heartbreaking topic with such intelligence.

I would have serious concerns over the safety of any staff accompanying him off hospital grounds.

With an unprecendentedly high litigeous situation where every single thing you do in a professional role in this situation is going to be scrutinised and very likely to be used in evidence against you by already very angry parents, where there is clear gearing up for a criminal negligence case, where those parents share almost everything with the media including publishing videos on newspapers, where professionals are being named and sent death threats......... where would you find a professional to say yep, I'll do that for them?

As a manager you couldn't ask staff to put themselves in this position and you would be stupid to put yourself in that position. Unfortunately choices in behaviour and actions comes with consequences, and it isn't only the users of the nhs that have rights.

No from me to stripping anyone of NHS services. The NHS is for those ordinarily resident in the UK, not for those who are quiet and compliant. It can be like pulling teeth to get anyone to complain as it is because they are afraid of treatment consequences, imagine if they had good reason to fear being chucked into the street.

i miss the bbc news were they fair? good to hear if thy were

There's one thing that stands out surprisingly - the Daily Mail comments online are overwhelmingly pro GOSH and all army type posts have way more dislikes than likes

I wonder why

Have just read that sadly another little boy in a similar situation has died today. Harry was also in nicu then picu and had a fb group and were preparing to go to court etc as Drs had said he was terribly ill and nothing more could be done. I don't know if his parents changed their minds and agreed to agree to withdrawal of treatment yesterday or if he had further complications. Very sad for the family and I really hope they have good support round them. They have already had to issue a plea to stop people sending private messages and to give them space.

I agree daily mail reports haven't been too bad. Which is something I never thought I'd say.

Nightmancometh.. The only experience I have of Legal Aid was a divorce many years ago.
However I totally understand that lawyers shouldn't be expected to work for free.
'Equality of arms'..the adversarial term again, but understand a lay person representing themselves could easily do themselves no favours at all.
Thanks for explaining.

If in January Gosh thought and evidenced that Charlie was brain damaged why did the judge give them a month to raise the money?

I didn't realise he had?? When was that?

I thought the money was just raised following the Court Case in April when the potential treatment in America became raised?

Just saw the BBC report on the BBC News Channel. They did read out parts of the GOSH statement which made a nice change.

What I am very about is the release of a "new" picture of Charlie which is blatantly from last year as a) he looks like a small baby not an almost 1 year old and b) he's not on a ventilator.

Connie is on fb comments on her friends page last night saying that the Gosh statement isn't true.

I accept I'm risking a deletion for this. But I really think her time would all be better spent with Charlie now.

I think GOSH is a real source of pride- established decades before the NHS it's looked after the nation's children without so much as a blot on its reputation previously and is a world leader in many respects. Even the most ardent DM readers will defend that, especially so when the detractors are from outside the US. You know, "we can slag things off because it's our country/taxes, but we'll defend it to the hilt if someone else criticises it".

Buttery muffin
I stopped myself earlier from posting something of similar ilk.

It's possible that someone else is running the account for her. I'm going to assume so.

Butterymuffin, I am surprised that she is on Facebook at all too be honest, her child is dying.

butterymuffin I wrote and deleted similar. Would be nice if a family member gently removed the phone and encouraged them to spend the last of their time on their precious ds. If they feel the need to prove the Gosh statement is allegedly lies then there is time in the future for that. I really hope they are allowed and encouraged to ignore the media/fb just now as they won't get this time back. So very sad for them.

Re the brain damage - despite claims to be "an expert" CY is not medically trained and can not possibly correctly interpret EEGs MRIs etc. If she has given the scans/ tests to people who are qualified to read them then she still needs to ask the right questions. There was a statement from the family about the early MRI not showing "structural" brain damage so if they have given the scans to a dr and asked does this show structural damage the answer may well have been no but if they had asked does this full set of tests/notrs show impairment in brain function or signs of cellular deterioration the answer may well have been very different. I've seen someone (not sure if it was C&C, family or just a random) state Charlie is not brain dead but GOSH haven't claimed he was they have said brain damage not brain death so again if they have asked another Dr is he brain dead they would get a no response but this is because they are mixing the terms brain death and brain damage.

I've seen the reports from people talking about how good the treatment is at GOSH. I'm talking specifically about people who have faced the end of life discussions with the hospital. They are very quiet voices which those facing the same, really need to hear.