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 ... ?

I assume they are lying to themselves, in the kindest possible way. They are deluded about what his chances were. I'm sure I'd be the same, wanting to cling to every small hope

Sorry, that should have been 'NHS staff' not 'hospital staff' - they don't all work in hospitals, of course.

Somebody actually responsible for patients - could be a doctor, a dentist, a nurse practitioner, speech and language therapist, a number of other professionals. But someone having direct patient contact and making responsible decisions about patients - rather than someone based in a laboratory or dealing say in theory or education only. Or gone into management and no longer seeing patients directly.

Thanks.

Thank you for the thread. The GOSH statement is very moving.

I hope there's a peaceful evening for all concerned at the hospital tonight. Family and staff.

@CaveMum

Thank you for that information.

I hope the parents/family manage to have peaceful quiet time with their beloved child. Without any shouting from outside the hospital or whatever, you know what I mean.

It is going to be awful for them, all things considered. My thoughts are with them, and any other family going through similar at the moment, or in the past for that matter.

Their grief is still extremely raw. Understandably they are angry and who wouldn't rage against the world at the loss of a child.

I hope this backlash against the hospital ends soon. What they've done is put the interest of Charlie first and went the route they felt nessescary. There are no winners here!

It would be nice if C & C started a foundation to help the parents of terminally ill children with counseling, ombudsmen, legal help (in understanding the law), and specialist hospice nurses who are always so wonderful at explaining a patient's condition in layman's terms. This could be a legacy that they can be so proud of and that would truly honour Charlie's memory.

I wish them peace and Charlie a swift and peaceful passage. I feel as if I've learnt a lesson in empathy and understanding towards someone who may be acting in a way that I might feel contrary to what would be best. I may strongly disagree with them, but I can do so with empathy and kindness. And I hope to God that I am never in their situation.

Was he pushed into this by Trump, though? If so, that's another massive advantage our 'socilised health care' has over their's.

After reading GOSH's statement I see why the parents are deluded though. Dr Hinro told them he could save their baby. And that's all they wanted to hear and so just hung to that and the belief if he had the treatment he would be ok.

And then even when those around disagreed they chose to ignore as an expert was saying, no I can give this treatment that will work.

That is all they probably heard.

And then with CA and family and friends telling them the same it spirals.

I think even now even if Dr Hinro released a statement (which he won't as only honest thing he can say is he was very very wrong) they would say he's been forced to.

They deeply still believe that Charlie should have the treatment and if he could go tomorrow to America and have it he could improve.

They obviously accept that the muscle loss is there but the brain damage I don't think they do.

I think the whole 'he loves watching an iPad" is to be blamed on pastor man too.

So sad but I don't think time will help them. Unless they've people around them gently telling them the reality. Same with the reasons gosh didn't give treatment earlier.

Part of me completely gets with the parents have behaved as they have. Regardless if I think it's acceptable / right. I can understand it and I think judging them for it is not going to help.

(Just to say though that the anger towards gosh is so so wrong but I guess they need to blame someone)

@Hudler

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

As a clinician myself totally agree. It takes years of training to make a judgement based on 'the whole picture' .
I have just been catching up after a day of work. Very very sad for those poor parents-they have been very brave in the end- to stand there and read that statement out loud.
Hope they are left alone to grieve & slowly very slowly heal. Hope they will at some point realise there was never a 'missed opportunity' for Charlie- atleast not at this point in time.

I've been following this since April when the first case was heard. One thing I'm not clear on- was Dr Hirano the only expert who was saying that it might have a positive effect? Were all of their hopes based on his views? You know, the same views which in turn were based on second hand reports, a prolonged failure to visit and examine the patient, outdated MRIs/ECGs, omission in reading the previous judicial decisions, and a financial interest in the treatment?

It seems like he was pretty much going through the motions like "¯\(ツ)/¯ I'll treat him if you have the money. Oh you want me to do a video link to some court case? I guess that's ok".

Whether he is therapeutic or researched focused or whatever, not researching or carrying out critical analysis like that is just poor. Yes C&C have been let down, but not by GOSH.

I have not commented on this case up till now but what has struck me tonight was the parents statement saying they thought the lack of treatment has now made it too late to save their baby boy. They seem to believe that if treatment had started months ago their baby boy would have been a healthy toddler

As a bereaved mum who knows if someone had done their job properly my eldest son would be here , I can tell you this is just the saddest thought.

It would have been kinder to the parents to not express that sentiment to them.
The saddest phrase in the world is if only .. bad enough to live without your son but its so much harder when its compounded with if someone had just done this

I really hope the parents will eventually find the strength to get through this and find some peace in their life.

One thing I'm not clear on- was Dr Hirano the only expert who was saying that it might have a positive effect?

He was the main one whispering in the parents' ears. 7 people including him signed a letter saying it might have an effect. Not all of these were clinicians, the italian was head of a lab rather than a doctor according to his linkedin. That was what spurred the case coming back.

I seriously hope Columbia University has taken notice of his conduct in this case.

i dnt unrstand still how its in anyway gosh fault if noone was willing to treat him back in jan

i know and undrstand they need to blame somone but theyre aiming it at the wrong place

Also can somone explain the law in regards to slander-can i accuse a hospital of anythng i like with no comeback

They haven't been let down by anyone. Their son has suffered catastrophic consequences to his health as a result of a disease that is not treatable as yet.

Incredibly sad.

The only consequences have been the backlash against GOSH and the staff working there. The parents were critical themselves of these threats.

jinglejanglejobs you are right, that letter was sent to the parents as well as GOSH, I cannot see how his conduct in this can be excused.

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 agree wholeheartedly. The fact those Dr's speculated the way they did was shameful.

I don't want to drag this out because, while I think it is the right result, the end result today is terribly sad for all involved, and to be honest I feel a little weird about still commenting on it. However, I am confused about something today and I would love it if someone could clarify if I've heard right.

C&C said very clearly that both the Italian and US docs were still offering to treat Charlie.

Someone (one of the lawyers in court or GOSH in their statement) said that US doc had said that treatment wouldn't work and agrees that charlie shouldn't be treated and removed his offer of treatment.

Someone's out and out lying - right?

Shit, I didn't mean to do that! Report report report!!!

They deeply still believe that Charlie should have the treatment and if he could go tomorrow to America and have it he could improve

Yes. And it speaks volumes about the calibre of everyone involved with Charlie at GOSH that they're taking this very firmly on the chin. I have nothing but the utmost respect and admiration for them.

Craic as far as I can tell, Hirano was saying initially he didn't think it would work but in the USA (which is not a signatory to the UN Rights of the Child) he would give it anyway if the parents said so and could pay as their legal system is different.

As time passed he got more data on the patients with the muscle only disorder which is where he came up with his 'new' stats from and became keener to treat - still without having seen Charlie.

The doctor in Rome was willing to treat Charlie but more or less everyone except C&C was discounting him as an expert as he had just joined because he works at the Pope's hospital.

You then have the '7 doctors' who said the treatment might work. But most of them weren't clinicians (as defined above). And none had seen Charlie or his medical records. Most weren't doctors but scientists commenting that they thought the nucleosides did have a chance of crossing the blood brain barrier - they made it clear in the letter they didn't know Charlie's individual circumstances but wanted to draw attention to their expertise in this bit of science in case the treatment was being ruled out because it was thought it didn't cross the blood brain barrier. As it turns out, it wasn't

So the 7 doctors letter, I think goes back to GOSH's point. They treat people, not scans or lab results. People are much more complex.

So, Dr Hirano and unnamed Italian doctor are saying they would still have treated him off c&c wanted them to?