Charlie Gard 12

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

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:

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

That was to WeeWitch on the looking at a toy

It was in response to a question by Seema Malhotra who is Chris and Connie's local Mp and is (at least) nominally supporting them)

Am I wrong in remembering that Judge Francis said

"Protesting outside a children's hospital will help no-one"

You'd think that they would have a rethink about that event?

I did not know that TM had stopped Govt ministers from tweeting- Very sensible I think.
I do not support JH at all, just think discrediting NHS helps his agenda and that was why he was quiet.

I read "Theresa May did comment" as "TM has commented on the CA page on FB"!! Doh.

TM commenting on CA page on FB
Made me chuckle imagining that

I honestly think that the UK (and yes, even a lot of the Government) are passionate about the NHS. It's in our bones as a nation.

I think when we see people criticising it from abroad (and from idiots online) without any deep knowledge we feel as if someone has insulated our family.

It's - well I can complain about my sister but if someone else bitches about her I'd have my hackles up!

Does anyone have a link to the parents' legal position statement - ie the equivalent to the GOSH one linked in the opening post of this thread? (I have asked a couple of times before on the earlier threads but they are so fast moving).

Would be interested to read that as this thread is overwhelmingly supportive of the GOSH position and would like to understand better the parents' position - ie other than as reported here via CA sources.

Thanks!

mitomum Glad you feel you and your son have had good treatment from the staff at GOSH.

It is probably the GOSH bashing by Charlie's Circus that began to turn public opinion in [UK at any rate] away from their 'cause'.

On CA facebook page today :
''*My wish for the day:

That one day, Justice Nicholas Francis will look at a smiling little boy, either across a room or staring out from a newspaper. Then, smile right back and say to himself "Thank God I made that decision to change my mind on 25 July 2017 and let this child live. It was the right decision".*

Judges do not [or should not] allow themselves to be swayed by public opinion..or sentimental appeals like the above quote.

After all, there are just as many members of the public who think palliative care is the best for Charlie..They are not making facebook appeals to the Judge though.

I did not know that TM had stopped Govt ministers from tweeting- Very sensible I think.

I don't think there's been any official policy announcement, I'm just going by the fact that since she took over there's been much less of it.

As well as being undignified, it contributes to the lazy journalism discussed above; journalists don't need to do proper research if they can just fill up space quoting tweets. Even the BBC has done this on their website.

Aridane, I haven't seen any such document. But paragraph 7 of the GOSH statement (which IMO goes out of its way to put both sides of the argument) reads:

Charlie’s parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have. They do not believe that Great Ormond Street should have had the right to apply to the Court for an independent, objective decision to be made. They do not believe that there is any role for a Judge or a court. They believe that only they can and should speak for Charlie and they have said many times that they feel they have been stripped of their rights as parents.

To me, that does seem to set out what they actually believe. They have neither contradicted nor criticised anything in that statement, as far as I know.

Jeremy Hunt does still tweet, both governmental messages and some personal political messaging.

So if Charlie passes away at GOSH I think he would then post a tweet. I hate the Man so not entirely sure why I am defending him.

Aridane I haven't seen anything written down but from what I gather they are of the view that they as Charlie's parents have absolute rights over him and are outraged that Charlie has a guardian to speak for him in court. They haven't taken on board that in UK law, parents have responsibilities not rights, and children have rights of their own.

I don't think it's acutally that uncommon for grieving relatives to accuse the nhs of murder, sadly.

I mentioned on a previous thread about a baby with edwards syndrome where the parents refused to believe the diagnosis, then when the baby died while they were in court trying to argue the palliative decision all hell let loose.

This was back in 2000, i think. I've just had a quick google and the aunt is still ranting online, despite being struck off from her professional job (in the nhs) and being bound by courts to stop discussing online, naming doctors etc.

As far as i can tell after getting the body released they shipped it to their country of origin for a 2nd pm to "prove" the murder, but the baby was still in storage as of 2007, when they were seeking to repatriate back to the uk for yet another pm.

There are obviously huge issues at play here. I wonder if eventually this refusal to accept natural death will be a recognised mh condition.

Just catching up.

@Rhodiolia thanks for the update on Lonely - good to hear they might be home soon!

@Sostenueto so sorry to hear you are having a bad time right now

That picture of the Judge is just appalling

I feel for current patients at GOSH who have to walk past any protests. It's all hard enough without worrying about getting through the doors.

I can't believe this is still all ongoing.

What I don't understand about the people who think GOSH is in a conspiracy to kill Charlie is how they account for the fact that they haven't done so already. CY said he had been brought back from the brink several times last week - it would have been easy for someone so inclined simply to stop short of bringing him back; it would also have been very easy for them to give less treatment over the last 8 months or to introduce an infection. I suppose CA will say that that is due to parental vigilance or something, but the most vigilant parent in the world couldn't do anything effective if any mad doctor seriously wanted to kill him.

I feel Judge Nicholas Francis will not be too insulted at being called Peter. Also, Family Court judges do not wear wigs in court. Like many people, I am getting increasingly annoyed at the slurs on our judiciary, our laws, our NHS and everything we stand for. The Judge, we can have confidence, will do what is right for Charlie.

The Court judgements (3 in this country so far) can be read in full, and they sum up the position of Charlie's parents. It is not necessary for each person involved in a case to put out a position statement. Their Barrister advocated for them in court and also the Guardian did not put out a position statement either, to my knowledge. Again the Guardian was represented by a Barrister. GOSH is slightly different as they brought the case to court and they are a national, publicly funded, institution which has duties and responsibilities.

Ceto - Sadly, you are making the error of thinking these people on CA are "normal" and have views that are rational and thought through. We know they have none of these qualities. There is no need to take everything they say at face value. A lot of it is just rubbish and we should treat it as such.

Rights and wrongs aside, I keep thinking how hard this time must be for C&C. I mean they honestly do not seem to believe that his brain is irreparably damaged and they do believe there is hope.
But they are now in some hellish limbo...waiting....and waiting....they don't know if they will be allowed to go to the US for treatment, or to Italy, or whether this might be their last week with their beloved little boy. This must be a truly awful place to be stuck in. I imagine that they can't sleep, can't eat properly, they must feel absolutely shattered with the mental exhaustion of it all. I really hope that they find peace. In my heart of hearts I believe the Judge will do the right thing and not allow treatment, but I cannot see the parents accepting that decision. It would be heart breaking to be court if/when that verdict is passed as I do believe C&C will kick up an enormous fuss.
Very sad.

When C and C spoke about "almost losing him" I took it to mean the times a couple of weeks ago when GOSH had planned to take him off the ventilator but reconsidered to give them more time. Although I know pp have said it is possible to die on a ventilator this seems the more likely meaning than him needing to be resuscitated?

Delurking to express my horror at that picture Tramp shared!

Does anybody know what would have happened to Charlie had he been born in the US? Because surely, only the very wealthiest of individuals would have been able to pay for the sort of care he's had here. Do parents have to take out insurance for their children prior to their birth, just in case? What if Charlie didn't have insurance? And if he did, and was being treated at massive cost to some insurance company, you could surely never trust that the decision to withdraw life-prolonging therapy was being made on the basis of the patient's best interest, as opposed to the insurance company's financial interest.

I shudder at the thought that this sad, sad case is being spun into evidence that a public health service is Bad and Wrong, when it is clearly proof of the reverse.

I think it's wrong to lump all members of CA into a single "type" quite frankly.

In my experience of looking on there there are broadly the following "types":

• those with a political agenda. Trying to discredit socialised Heath Care and involvement of the courts. A lot of these - though not all - are not British and fundamentally mis-understand due process in the UK.

• the blue heart Brigade. Happy to posts lots of emotive messages of love and support but not engaging in any really meaningful way.

• the "fight club". Those that want him treated at all costs, yet seem to have very little understanding of his condition. Tend to post quite inflammatory comments that lack any credibility. They do a good job of fanning the flames but rarely add anything rational or meaningful. They very much seem to revel in the campaign and often seek to out do each other in the type of outlandish accusations they can make.

• the pro-lifers, for religious or other reasons feel strongly that treatment should continue and that it's unethical to remove it.

• the parents know best stalwarts. Fundamentally fail to grasp that Charlie's rights as a individual should be protected by anyone other than his parents. Ergo if C&C say treatment is the right thing - it is, because they and no one else know what's right for their son. Don't really know much about the condition or treatment but that doesn't matter. The parents do and they should be backed come hell or high water.

• the skeptics, yes there are some. They ask basic intelligent questions and do disagree with many of the wild assertions being made. They tend not to last long on the page because they either get booted off pretty quickly or leave of their own accord.

C and C did not need to be in this current position though with allthe dilemmas and false dawns. They could have worked with GOSH as the vast majorty of parents do.