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 ... ?

Thank you for the thread.

I hope you don't mind if I post some of the beginnings from the other post, just as it gave some clarity on what is/ isn't appropriate.

*Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Timeline so far

August 4, 2016 Charlie born 8lb 3oz to Connie Yates and Chris Gard.

October 2016 Tests reveal mitochondrial depletion syndrome.
Believed to be only 16th sufferer in the world of rare strain.

Autumn 2016 Miss Yates finds specialist in US testing nucleoside therapy, but it has never been tried on Charlie’s rare type.

January Gosh doctors say drug would be futile because of irreversible brain damage. Parents contact US doctor.

March Gosh asks High Court to let Charlie die. Mr Justice Francis gives parents a month to make case for treatment. Daily Mail readers help raise £197,000 in days to help fly Charlie to US.

April Doctors say he is likely to be in pain. Judge rules Gosh should let him die.

May Court of Appeal upholds ruling. Parents appeal to Supreme Court.

June Supreme Court rejects appeal. On June 27, European judges back decision. Gosh gives parents more time with Charlie. Pope Francis intervenes, followed by Donald Trump on July 3.

July 7 Seven scientists hand Gosh fresh evidence showing higher survival chances.

July 10 Mr Justice Francis gives parents 48 hours to produce new evidence in case.

July 13 US specialist Dr Michio Hirano invited to London by High Court

July 17 Dr Hirano examines Charlie.

July 21 Court told scan results ‘very sad’.

Today, 24 July, High Court due to rule on the case, ten days before Charlie’s birthday.*

Of course I don't mind, Flower ... I'd have done it myself except that I wanted to get this one started before the last one ran out

And apologies for calling it (15) when it should have read (16); the threads have zipped by so fast that I lost count

Sorry, I didn't realise the other one wasn't full.

I've just realised it was page 39, not 40.

I'll post when that one is full. Apologies.

I would be interested to know whether in future cases, social media will be banned from use alongside. I understand that this might affect fundraising though, which might be detrimental to a very genuine cause.

Flower - could you re-post the link to the GOSH fundraising page ?

Redshoe in case Flower doesn't see your post when she returns after the last thread fills, the link to GOSH fundraising is here:

www.gosh.org/special-1?gclid=EAIaIQobChMI1-mD38ui1QIVqbztCh0_cQe5EAAYASAAEgL-cfD_BwE

Thank you. I'm feeling fatigued, sad and angry about what has happened in this case. I'll be glad to be part of what will be an important continuing discussion (even if I personally don't have anything of importance to add!).

You might like to know that my OH and his workmates have been discussing the case and referring to these threads for accurate information, so we have done at least a little good here

I would be interested to know how many hits the threads are getting, I have heard that lots of people have been following them from RL.

Thank you to OP.

Home from work and catching up on this.

As a clinician, I think a hopefully important implication will be Judge Francis' statement about making comments or promises about patients you haven't examined.

I am not eminent enough to have ever been involved in court cases but if I was, I really would not have gone about it like Prof Hirano. The GOSH position statement from today I think is very telling.

If your whole professional life revolves around one very rare thing, and then a case comes along it, that's possibly a once in a lifetime opportunity for you, as a clinician you would be itching to go an see that case. In this event, GOSH invited Prof Hirano to see Charlie in January. Charlie's parents thought GOSH were crap and Prof Hirano was the golden ticket.

And yet, he just sat in the USA making odd promises, not reading the cases notes or scans which he could easily have had access to, coming up with stats that as a researcher he should have known had no validity, and not even reading the court judgement. FFS, even Mumsnetters have done that!

Medical research at that level is a very small world and highly international. It would not have been a big deal for him to get on a plane and come over to GOSH and see Charlie at any point from January onwards. I'm mystified why he didn't and why he did so little research about him specifically but still made promises about him.

In the end, he only seems to have come when pushed to by Judge Francis, a man who has showed the wisdom of Solomon.

My suspicion is that although he is a medical doctor, he is largely laborotory based rather than patient based.

As GOSH said in their statement, they don't treat scans, they treat people. I think this is something poor Connie and Charlie have found very difficult being self-taught. Sometimes scans tell you nothing at all. You have to look at the evidence of the person in front of you and if they are not getting better, this tells you all you need to know, even if the scans and test are normal or unchanged.

Hulder, thank you, this is exactly what I think too.

I am not trying to be goady or cause controversy but have been really stunned that people have described him as a scapegoat and defending him.

That's how I saw it, apologies, not sure how to phrase it without sounding confrontational.

Such a sad sad situation. To many false promises and hope from people.
I hope the parents come to term with things and eventually let go of the blame.

Also hope they're given the space needed to come to terms and grieve as family rather with so many on social media. It's like in a way he became public property with so many expressing their own sadness over it and making things about them rather then remembering the important person in this and what it's all about. Not silly protests and look what we've done blah blah.

The social media side has played such a part in this and hope they can back away from it.

I suppose the next thing is how long before life support is withdrawn and palliative care commences.

I am sorry if that comes across as insensitive, but it could be an issue. Child's birthday is coming up, and the mob might start baying.

Who decides? I don't recall any direction of the court today, does anyone else.

Brilliantly put, Hulder - and especially valuable coming from another clinician

I especially agree about how telling today's statement from GOSH is; from people who've always written with the greatest care, they could hardly have made their views clearer if they'd hired a skywriter to do it

soda In Connie's statement she said that he would not see his first birthday, so I'm guessing it will happen very soon.

The privacy of the parents should obviously be respected. i wish that the parent statement had also asked everyone to respect the privacy and wellbeing of the staff, patients and relatives at GOSH. Maybe they have said it somewhere else, I only read the statement. I worry that the protests and vitriol against GOSH might continue.

Have just read the full Great Ormond Street statement. Very well explained, this is what the media should be reporting.

Can someone explain to me what a clinician is? I live in the UK.

I'm nervous of posting on here as there are so many threads I will probably say the wrong thing but this was inevitable and I'm so sad it has taken this long. His parents must have so much additional pain over the usual pain of watching their baby dying and the gosh staff will be feeling attacked and bruised. And in the middle of it all is a tiny little boy who never had a chance. So sad, and there are no winners, but pain and loss all round :(

Hirano's an absolute melt.

The man's an exceptionally qualified neurologist. So much so, he has a professorship at Columbia, a massively respected university. It's an Ivy league fgs.

But he panicked as soon as he was asked how much pain he thought Charlie may be in, what level of brain function he has, whether he's got brain damage or brain dysfunction... apparently he didn't think he was qualified enough for those and wanted another neurologist to do it Pretty sure that as an attending neurologist you should be able to make a stab at those questions, even if you say you'd like a second opinion or that you're only speculating!

Absolute timewasting farce of a man.

The vitriol is continuing against GOSH unfortunately, I have seen more threats and abuse on twitter and their FB page.

Can someone explain to me what a clinician is? I live in the UK.

Someone who is qualified to work with patients and does so in a clinical situation (eg a hospital). Doctors are clinicians. Nurses are clinicians. Dieticians, physiotherapists, occupational therapists etc are clinicians.

I am so sad for this family. I worry though that they may continue tying themselves up in further legal action.
I am not clear about how often scans etc have been done or how much the parents have permitted.
Their statement today seems to suggest they feel Charlie would have had the chance of a normal life of the treatment has been given sooner. I may have misunderstood that though.

I so hope they throw themselves into this foundation which could support other families in their situation rather than tearing themselves apart with any future legal stuff.

I hope they find some peace

Clinician = medical professional. To distinctive them from hospital staff who do other important jobs but aren't doctors, nurses etc.

Excellent post hulder

I shed a tear when I followed JRs tweets and the conclusion unfolded. I was at work and my colleague also had a moment.

I do not think any attempt to sue GOSH will be successful as the timeline speaks for itself.

I cried watching CG outside of court, their grief us so deep they cannot see they have been led on by Hirano.

Big respect to staff and patients at GOSH. And sadness for C&C. Poor little baby Charlie