[Closed] Charlie, the Pope and Donald Trump....

Trump jumps in because he stupidly thinks it's an indictment of the NHS, the Pope jumps in because he thinks his boss is in charge.

All in all, too many people with opinions and a market for them amongst their fans.

Yeh I don't get all this either, there must be loads of really sick kids (which is terrible for them and the parents) why is there such a media frenzy about this one in particular?

I believe they should be allowed to do whatever they want to "save" their child, but on the proviso that the cost is met out of their pockets or those who support them.

Which is where they are, more or less.

Trouble is, there is room for Quackery were you have cash, and someone else has a 'cure'

The mum was on tv over the weekend, talking how a medicine, taken orally, could fix their son, and they had to go to the US to get it.

Could they not post it to the UK? It would be eaiser on the child than a 10 hour flight. And if he responded then all's well.

I get the feeling they are being fed a line by people who know how desperate they are, but love the smell of wellwishers money on them.

the Pope jumps in because he thinks his boss is in charge.

Then his boss is a next-Tuesday if he allows babies to be born that have no chance of a natural life.

I think that medical science sometimes goes too far when it comes to extending life. I think the UK doctors and courts have it right in this case.

I think that medical science sometimes goes too far when it comes to extending life. I think the UK doctors and courts have it right in this case.

+1 (I think)

As a parent of two kids I can't begin to imagine how awful the last 6 months have been for them.
I also think the situation where trust between parents and doctors has broken down to such an extent that the child has been made a ward of court is so sad.
I don't know how I feel about the 'experimental' treatments being offered to them. Its fairly clear they can't offer a recovery, and the best they can hope for is a severely disabled person who'll need round the clock care for the rest of his life.
I believe the Doctors at GOSH are at the top of their game, and their opinions need to count for something.

I guess Charlie has a right to every opportunity that can be offered to him, and I honestly don't know how I'd feel/what I'd do in his parents position.
In some ways it feels like any further treatment now is too little too late?

I get the feeling they are being fed a line by people who know how desperate they are, but love the smell of wellwishers money on them

+1

I've got no answers, but my gut feel is they should let nature take its course.

I guess the parents want to be able to live the rest of their lives knowing/believing they did everything possible to give him life.

Edit. I know very little about the case and have no opinion on their actions. 😀

I guess the parents want to be able to live the rest of their lives knowing/believing they did everything possible to give him life.

+1 agreed.
However, I think Quality of life' should be considered.
FFWD 18 years, would a severely disabled Charlie thank them for it?

Such a difficult and horrible situation.

Really sad story and I would imagine put in the same position as a parent i would want to explore every opportunity to save my child. But there comes a time, and I would imagine they are past it now, where you need to take the lead of the caring professionals and do the right thing and let the poor wee fella go.

America is full of see you next Tuesdays. One of them is sadly the president who for this cruel and cynical political interference alone needs force feeding his own bollocks. Plenty more in 'fringe' medical or medical/religious groups who are either delusional about their own abilities or just plain pray on the vulnerability of desperate people for their cash. The pope - not very helpful. But then again he's the pope - being not very helpful is a speciality.

GOSH are in a tricky spot now - hold the line and get blamed when he dies. Let him go and get blamed for delaying his treatment when he dies (which seems inevitable) in the knowledge that they also prolonged suffering.

Sadly it a personal tragedy that just brings the nutters out to increase the misery and give false hope to some very unlucky people.

I guess the parents want to be able to live the rest of their lives knowing/believing they did everything possible to give him life.

The evidence for the treatment they have in mind is sketchy to say the least, and the chances of any quality of life are extremely small, given the existing brain damage.

But I'd agree with the parents, even to the extent of pointlessly prolonging life, as long as it did not divert scarce resources from another more treatable case and, most importantly of all, as long as the lad is not currently in tremendous pain, and likely to remain so even if the treatment is 'successful' in keeping him alive.

If this is the case (and GOSH believes it may well be), then I'm afraid IMO the parents wishes need to be overridden so his suffering can end.

Having recently been involved in the world of palliative care, I feel the parents need to face up to the sad realisation it's time. The numerous doctors involved will not have come to their decision lightly. I know one will always try and do as much as they can for a loved one, but they risk causing further distress, suffering and harm for nominal gains.

There is a time for hope, and clutching at any straws that one can, but eventually you have to accept you're torturing yourself, and the person in question, by not letting go.

Trouble is, there is room for Quackery were you have cash, and someone else has a 'cure'

This, it seems a week doesn't go by without someone trying to raise a huge sum of money to send someone abroad to get care that the NHS doesn't provide like it's some 2nd class service that kills people for the sake of 'computer says no'.

The truth behind these miracle cures is often that they're either experimental and untested, or more likely they offer a sub-10% chance of extending life for a few weeks or months and whoever is in charge of their care has agonised and considered their treatment for a long time and decided either the treatment offers almost no chance or success and doesn't warrant making the patient suffer it, or indeed it offers such a tiny chance of success it's not worth the massive cost of treatment.

I can’t blame the parents, but trying to make political mileage out of a dying child is sick.

[quote=freeagent ]FFWD 18 years, would a severely disabled Charlie thank them for it?

I'm not quite sure how he would ever be capable of even understanding what has happened, let alone responding in any way. "severely disabled" hardly goes far enough - and nobody is suggesting there is any chance of him ever recovering from his brain damage, which appears to preclude him ever sensing the outside world or moving under his own accord. His parents might want to prolong his life, but it's not really life as we know it.

The best thing for everybody - including his parents, or maybe even particularly his parents - surely has to be to let him go with as much dignity as possible.

From http://www.bbc.co.uk/news/health-40554462

GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.
By the time that decision was made, however, Charlie's condition had greatly worsened and the view was that his brain damage was too severe and irreversible for the treatment to help.

it seems the time for such therapy being useful has passed, and that GOSH did do what they could to provide it to him whilst it would have still been useful (but it was tricky because it hadn't been through the normal required testing process). Sometimes we just have to accept that modern medicine hasn't quite advanced enough to treat things.

Quality of life and whether the patient is experiencing pain are the big factors for me and I don't think you can solely leave it to the parent to decide how long to continue treatment as emotion can cloud the judgement over what's best for the child.

If pain is being experienced (and I think in this case that's not clear) then I think the medical profession should be able to over-rule the parents and step-in to ensure the parent's emotional state isn't causing undue suffering to the child.

As for experimental treatments, that's a trickier one. Surely best case end result has to be a factor but then who decides what a reasonable/minimal quality of life is? From what I've read on this case his quality of life wouldn't meet my own definition of reasonable but for others perhaps life is so precious that even having a machine breathing for you for the rest of your life (as well as being blind and so brain damaged you likely can't understand anything about your situation) is enough to warrant the treatment?

The involvement of Trump is an interesting one as he is quite clearly jumping on the bandwagon to get himself good press as this case is very much in the public eye. This man should be ignored as much as possible and is quite clearly a moron. This is the man who is taking away publicly funded healthcare from his own citizens but taking an interest in one public case in a different country.

What a colossal ****.

https://www.theguardian.com/uk-news/2017/jul/10/patrick-mahoney-us-pastor-campaigning-for-charlie-gard-has-history-of-publicity-stunts

aracer - Member

freeagent » FFWD 18 years, would a severely disabled Charlie thank them for it?

I'm not quite sure how he would ever be capable of even understanding what has happened, let alone responding in any way. "severely disabled" hardly goes far enough - and nobody is suggesting there is any chance of him ever recovering from his brain damage, which appears to preclude him ever sensing the outside world or moving under his own accord. His parents might want to prolong his life, but it's not really life as we know it.

The best thing for everybody - including his parents, or maybe even particularly his parents - surely has to be to let him go with as much dignity as possible.

Agreed.

The truth behind these miracle cures is often that they're either experimental and untested,

Indeed, in this case GOSH have gone back to court today to ask the judges to look again at the case based on evidence that is so untested that it hasn't even been published/peer reviewed yet.

[quote=FuzzyWuzzy ]From what I've read on this case his quality of life wouldn't meet my own definition of reasonable but for others perhaps life is so precious that even having a machine breathing for you for the rest of your life (as well as being blind and so brain damaged you likely can't understand anything about your situation) is enough to warrant the treatment?

I'm struggling to see that he has any quality of life at all other than existence - it's fundamentally no better than being in a permanent coma (arguably worse). I struggle to understand even parents clinging to this - it's not an existence I'd want for myself, and certainly not for my kids - I am a parent, and it would be heartbreaking, but the decision would be relatively easy if that was the future for one of mine.

I'm curious whether those other than his parents supporting him being kept alive understand the situation he is in, or whether they too just have strange standards (well completely different to mine) that value existence for its own sake.

If his parents had done to a dog what they are doing to their own child, they'd be in court for cruelty and neglect.

It must be very hard for them, but it is long past the time when they should have started putting their child's need to be out of pain and discomfort above their own needs and wants.

Pope/Trump and that American pastor are shameful in their use of this issue.

[quote=slackboy ]Indeed, in this case GOSH have gone back to court today to ask the judges to look again at the case based on evidence that is so untested that it hasn't even been published/peer reviewed yet.

and now the argument appears to be over whether such treatment would provide him with 10% chance of continued existence rather than the 0% chance they'd previously thought. It seems a funny thing to be arguing about in the circumstances.

Jamie - Member
What a colossal ****.

https://www.theguardian.com/uk-news/2017/jul/10/patrick-mahoney-us-pastor-campaigning-for-charlie-gard-has-history-of-publicity-stunts

I've nothing to add, other than the parents should definitely be avoiding associating themselves with reptiles like that fella.

I've nothing to add, other than the parents should definitely be avoiding associating themselves with reptiles like that fella.

The parents did not seem like the sharpest tools in the box though. Add desperation and probably exhaustion and they are easy prey for these throbbers.

I'm struggling to see that he has any quality of life at all other than existence - it's fundamentally no better than being in a permanent coma (arguably worse). I struggle to understand even parents clinging to this - it's not an existence I'd want for myself, and certainly not for my kids - I am a parent, and it would be heartbreaking, but the decision would be relatively easy if that was the future for one of mine.

I'm curious whether those other than his parents supporting him being kept alive understand the situation he is in, or whether they too just have strange standards (well completely different to mine) that value existence for its own sake.

Trouble is, there is room for Quackery were you have cash, and someone else has a 'cure'

Family friend paid £30k to take her teenage son with terminal cancer to a retreat in Indonesia where they claimed to cure cancer by getting him to spend hours every day jumping up and down. He was physically and emotionally knackered, she was utterly desperate.

He still died a few weeks later.

[quote=cheers_drive ]many American members, quite a few of them see the decision as the government / NHS playing god and it wouldn't happen in the US.

😯 I'm guessing they're ignoring the "playing god" due to lack of money which happens with medical treatment in the US?

I feel exactly the same, however I am part of a dad's group which has many American members, quite a few of them see the decision as the government / NHS playing god and it wouldn't happen in the US.

Nope it would be the insurance company instead. If you are lucky enough to have cover that is.

I'm curious whether those other than his parents supporting him being kept alive understand the situation he is in, or whether they too just have strange standards (well completely different to mine) that value existence for its own sake.

I might be being a little disingenuous here but I suspect quite a sizeable proportion supporting them do so in a spirit of post truth disregard for experts and the thought of a fairy tale walking talking happy ending 'defying science'. That being a little 'fighter' and given the chance to keep on 'fighting' and a few prayers is all that's needed.

I agree convert - Hollywood and TV sets a unrealistic expectation that this kid has a chance of a complete recovery if they can just find the right medication.

Reality is far sadder. 🙁

There was a paediatrician in the paper the other day. Said that the drug, even if it works, will only stabilise him and not fix anything.

Having spent over 100 days in a neonatal ICU with a very ill, very premature son, I can see how they may have got to the position they are in. Normal is a relative thing.

I think the courts decision is the right one, and I would hope in a few years with some distance and contemplation they will see that too.

Trump and the others can **** right off though. They aren't helping anyone but themselves.

Trump is well known for his love of children, definitely not just being manipulative, oh no!

Impressive sense and pathos on this thread. Nothing much to add apart from agreement with everyone here so far.

[quote=molgrips ]There was a paediatrician in the paper the other day. Said that the drug, even if it works, will only stabilise him and not fix anything.

That's exactly what it's saying in all the articles I'm reading. The damage is done, nobody at all (who knows anything), not even those offering the suggested treatment, is suggesting he will get any better than he currently is.

I also suspect convert is right - from what I've read I suspect the parents are included in the irrational hope of life beyond lying in a bed unable to sense and unable to move.

am i the only one who opened this thread expecting a joke..

..Prince Charles, Trump and the Pope are all in a plane.......

...kill, marry, snog

Nope it would be the insurance company instead.

Your insurance company in the US doesn't just hand out money. They have legal teams that fight tooth and nail to get out of having to pay out. In this case, they would press the doctors to prove the medical case for the treatment, which they would be unable to do for the same reasons as the British doctors. So they wouldn't pay out.

Plus their cover would be limited to less than the cost of this particular treatment, as I understand it.

It's worth watching the Louis Theroux documentary on end of life care in the USA (on Netflix if you didn't see it originally).
There seems to be a tendency to keep offering every possible treatment, even when the potential benefits are very questionable. I guess there's an obvious financial incentive if the patient can pay, but part of it also seemed to be about "consumer choice". One of the people he followed was effectively killed (after one day of treatment) by the last chance chemotherapy he elected to take, when it was offered by the doctor. It looked like he would have been better making the most of his last days with his family, instead of starting a treatment that had little or no chance of success.

Having recently been involved in the world of palliative care, I feel the parents need to face up to the sad realisation it's time. The numerous doctors involved will not have come to their decision lightly. I know one will always try and do as much as they can for a loved one, but they risk causing further distress, suffering and harm for nominal gains.

There is a time for hope, and clutching at any straws that one can, but eventually you have to accept you're torturing yourself, and the person in question, by not letting go.

Very well put Jamie and I completely agree with what you are saying. Then again I don't quite know how my mind would be operating under those circumstances. Really feel for the parents and the emotional turmoil that they must be going through. My son had some complications in his first eighteen months (nothing remotely liked this) and I wasn't very rational for some of that time.

Trump and his popeness can both do one though. They are both spotlighting this for their own reasons. There is nothing altruistic about it. They are providing false hope and that's not a very nice thing to do in my opinion

So glad I've never been in a situation like that, I hope I'd make what (I see today as) the right decision but I really can't put myself in their shoes. And that's why we sometimes have to have other people make the decisions, rather than the people who can't reasonably be asked to do it, and we have to do everything we can to make sure the people responsible, can.

OTOH,

aracer - Member

...kill, marry, snog

Trump, Pope, Charlie. I can't imagine a better punchline than having the Pope marry an atheist dude.

This is such a difficult case and I can't bein to imagine what the parents must be going through. If anything like this happened to babybgoode I don't know what I'd do but I think I'd trust the doctors judgement.

I too can't help feeling that there's those out there seeing $$$ signs. They know the parents have got £1m+ and they want a slice. I know this is terribly cynical but I just can't see how a powder that's sprinkled on food could have any major effect. Sounds too much like a YouTube miracle cute for cancer.

The problem we face today, and one we've not really faced before is that medical science, technology and intensive care can now keep alive pretty much anyone, no matter how ill, old, or damaged they maybe. As few as 10 to 15 years ago, that child would have been born, and then shortly afterwards, died. His parents could then morn, and move on with their lives.

But, today the child is kept alive by science so that people can argue over his (inevitably bleak) future. There's 7.4 Billion people on this planet, not only can't we save every single one, i don't actually think we should try imo. (where there is a pretty low probability of returning that person to both a reasonably quality of life, and where there dependency wouldn't be an untenable drain on the people who would have to look after (and finance) them for the rest of their life).

This is something i've considered in some detail, as my mother who is in a carehome, and has dementia. She has a reasonable quality of life, she's well looked after, well fed, but we have put in place, (as was her wishes in the Will she made whilst compos mentis), a do not resuscitate order, because we all feel that needlessly prolonging someones life beyond their "natural term" is not morally correct (and that natural term could be anything from 10min to 100years, depending on the circumstances).

Well said Maxtorque, we went through much the same with my grandma and grandad; the major difference was that my grandad had the opportunity to pass away while he still knew who he was, my grandma didn't. I understand why medicine doesn't want to make the call of when you should or shouldn't die... but it's something we can't put off forever, it'll have to be resolved sooner or later and once you realise that, it's hard not to think it should be sooner.

Entered this tread with some trepidation - such a relief to hear calm, considered and compassionate commentary.

Healthcare in the US is based on: "You can have anything you want, as long as you/someone pays for it" and all medical opinions in that environment should be viewed through that lens.

In the context of Charlie, it was interesting to watch this where the parents have a rather different perspective (and Rose appears to have a slightly higher quality of life than Charlie)

http://www.bbc.co.uk/news/av/health-40582032/mother-s-plea-for-daughter-s-right-to-die

http://www.bbc.co.uk/news/uk-england-40708343

Sad in a way, but my overwhelming feeling is thank goodness for that.

The mother looks very unwell poor woman. I hope both parents get the care and support that they need to cope with a heart breaking situation. The American specialist is just short of being a quack.

deeply sad situation and heart goes out to all involved, on both the personal and the care side of things all of whom I'm sure feel thay have Charile's best interests at heart.

Apologies if not the time but heartbreaking as it is I find these medical ethics issues fascinating. All the time this has been going on, they have referred to it as 'experimental' medical treatments that 'might' help him; when is it OK to experiment with a little boy's life? Where do we get to if we can't experiment - and in cases like this who decides?

OK if you're an adult and a doctor offers you an experimental drug or a trial procedure you can make informed consent, but for an early years illness? And tough as it is (and why I decided to post this even though I'm not sure how it will be received) - while the grief and stress it has had on the parents is evident, should the parents have a say at all? Are they too close to be objective, and should it be left to medical experts, judges and lawyers?

Every day i am just so grateful I have two healthy daughters. I don't know how I'd cope, with a case like this, or a Bradley Lowery.

[quote=theotherjonv ]And tough as it is (and why I decided to post this even though I'm not sure how it will be received) - while the grief and stress it has had on the parents is evident, should the parents have a say at all?

I think they should - legally and morally parents have the right to make lots of decisions affecting their children's lives - but it shouldn't be an overriding one. Quite how you balance that I'm not sure.

theotherjonv » And tough as it is (and why I decided to post this even though I'm not sure how it will be received) - while the grief and stress it has had on the parents is evident, should the parents have a say at all?
I think they should - legally and morally parents have the right to make lots of decisions affecting their children's lives - but it shouldn't be an overriding one. Quite how you balance that I'm not sure.

Sad, but at least it is now over. I really hope the parents don't now sue, as they seem to believe it is a delay in treatment (rather than the treatment not being an effective or ethical one) that led to Charlie's decline.

The statement from GOSH is utterly professional and utterly damning. See http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

Sad, but key, points for me:

At the first hearing in Charlie’s case in March, GOSH’s position was that every day
that passed was a day that was not in his best interests. That remains its view of his
welfare. Even now, Charlie shows physical responses to stressors that some of those
treating him interpret as pain and when two international experts assessed him last
week, they believed that they elicited a pain response. In GOSH’s view there has been
no real change in Charlie’s responsiveness since January. Its fear that his continued
existence has been painful to him has been compounded by the Judge’s finding, in
April, that since his brain became affected by RRM2B, Charlie’s has been an existence
devoid of all benefit and pleasure. If Charlie has had a relationship with the world
around him since his best interests were determined, it has been one of suffering.

In the months ahead, all at GOSH will be giving careful thought to what they can learn
from this bruising court case that might enrich the care it provides to its most vulnerable
patients and families. It is hoped that those who, like the Professor, have provided the
opinions that have so sustained Charlie’s parents, their hopes and thus this protracted
litigation with its many consequences, will also find much upon which to reflect.

[quote=CountZero ]One thing that made me angry tonight watching the news was a bunch of people shouting "justice for Charlie", who I don't think were helping matters one little bit, well-meaning, I'm sure, but just distracting from what was going on.

I agree - I doubt any of them have anything like a proper understanding of the situation. Not quite as bad as those sending threatening messages to the hospital staff or Charlie's parents, but from the same stock as them.

I can't have anything but sympathy for the parents though, as much as I might disagree with some of the decisions they've made.

Having read that statement, some quite damning comments if you read between the lines:

It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

The hospital does not treat its most vulnerable children simply because it can and on no account does it treat them purely because novel treatment furthers GOSH’s research.

It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.

Wow, that is quite damning. Hopefully there will be a lot of soul searching amongst the press and shame amongst the death threat morons. I have my doubts.

Either way, I hope the family have some closure and some peace in this awful situation.

I heard the father's statement in full on the radio on the way home. I'm sure like many, I'm a bit conflicted whenever I think about situations like this. I can swing one way and then the other. But cripes, I did feel a bit emotional listening to the guy. I remember spending a couple of weeks in Bristol Children's Hospital when our fella was ill between 7 and 9 weeks. I met some people in there whose kids had no realistic chance at a quality life beyond a few years. It was bloody heartbreaking listening to some of their stories. 🙁

I have great sympathy for the parents having had a child who was doomed from the moment he was born. That's just a terrible thing to happen.
I have less sympathy for the way they have conducted themselves in the court case: I understand their desperatiion, but that doesn't mean that you can just ignore reality & I don't thnk what they have done has been in the best interest of their child.. As for their supporters:

Outside court, Charlie's Army campaigners reacted angrily and chanted, "shame on you judge" and "shame on GOSH".

Falling to the ground, one female supporter said: "He had a chance and you took it away."

It's people investing so much of their soul into the latest tribal battle happening on twitter. What a world we live in.

[quote=imnotverygood ]I have less sympathy for the way they have conducted themselves in the court case: I understand their desperatiion, but that doesn't mean that you can just ignore reality & I don't thnk what they have done has been in the best interest of their child.

I'm going to give them a pass on that too - they clearly thought their actions were in his best interests. Clouded by emotion to think that maybe, but when you've got somebody who is supposedly an expert (or even the expert) in the field whispering to them can you blame them? The Professor doesn't get a pass.

The statement from GOSH appears to refute a lot of what they're saying, but I expect they will always believe that. Hopefully Charlie's Army (who will also always believe all of that) will fade away and find something else to get upset about.

like the Professor, have provided the
opinions that have so sustained Charlie’s parents, their hopes and thus this protracted
litigation with its many consequences, will also find much upon which to reflect.

Doubt it. Similar ilk will now be dripping poison into the parents ear about suing.

I'm not sure it was a genuine hope, so much as part of the take down, hence why I linked it with the other statements.

An example of how the legal system gives the opportunity for incredibly difficult decisions to be made fairly.

aracer - Member
imnotverygood » I have less sympathy for the way they have conducted themselves in the court case: I understand their desperatiion, but that doesn't mean that you can just ignore reality & I don't thnk what they have done has been in the best interest of their child.

I'm going to give them a pass on that too - they clearly thought their actions were in his best interests. Clouded by emotion to think that maybe, but when you've got somebody who is supposedly an expert (or even the expert) in the field whispering to them can you blame them? The Professor doesn't get a pass.

Quite. One has to question the value and ethics of shoving a camera/microphone in the face of a grieving parent. The expert opinions of the medics at GOSH should inform the choices here more than those of some clearly very distressed people. We seem to struggle with the concept that all opinions are valid, but not equally valid.
I think that, in time, the parents will be able to be able to see this whole debacle a bit more clearly - and at that point, sue the arse off "the professor"

This Professor Hirano sounds like a right bastard.

Like I said above molgrips a quack. The little boy has been without hope since the seizure last December, the muscle wastage is a mis-direct.

Whole tragic case lies with the false hope provided by dubious science professor in the US who is financially connected with the so called "treatment" that is unproven (and who is to say the few kids who's been claimed to have helped, wouldn't have made a recovery anyway, although it looks like some are still in a bad way, just not dead yet).

Apparently some stuff he wanted to try hasn't even been tested on mice let alone humans. GOSH had no choice but to refuse this as it comes totally under the banner of unethical and immoral in the medical world. In America it's probably more common because anyone waving a few million about will get someone happy to take the money and make promises.

All that would have happened is treatment would occur while stating that it's experimental and slim chance. "Oh, sorry, your kid didn't survive. Thanks for the £million though."

[i]I think they should - legally and morally parents have the right to make lots of decisions affecting their children's lives - but it shouldn't be an overriding one. Quite how you balance that I'm not sure[/i]

That's what the courts were doing - their role was to represent the child and see that decisions were in his best interest, informed by experts and listening to arguments on both sides. Once it gets to that point, the doctors aren't making decisions the courts are.

Another reason why it's damaging nonsense to say that any aspect of this case is somehow about the health system.

I don't think I've seen a thread on here so full of vigorous consensus...

i wonder if could someone help me with this, ideally using non emotive words.

If the kid was over 18 (ie an adult) would the court be able to stop the parents taking him to the US?

thanks in advance.

I assume you mean if the over 18 was not able to speak for themselvesYes I think

Firstly at over 18 the parents have no rights to control what is now an adult and the person would be a "vulnerable adult" could be then placed under a guardianship order if social work thought that it might not be in their best interests and the court would then make a decision based on the evidence. The guardian could be a parent but equally could be a court appointee

If the kid was over 18 (ie an adult) would the court be able to stop the parents taking him to the US?

If an adult wants to travel abroad to Dignitas, the law would have a strong view on it.

If an adult wants to submit himself to quackery, they are welcome to make a tit of themselves.

If someone wants to experiment on a desperately ill baby; there may be a responsible person who says "hold on a moment"

The kid in question was being kept alive by medical means. The parents had to have the assent of the doctors to travel. At which point they will have an opinion.

Rightly, it would seem.

right. so which point of law overides the parents wishes here? (sorry if i missed it earlier) presumably the doctors have a duty of care, how does this overide the parents wishes? is it only in cases such as these, or could they even stop you going to france to get a collar bone pinned, for example.

Whole tragic case lies with the false hope provided by dubious science professor in the US who is financially connected with the so called "treatment" that is unproven (and who is to say the few kids who's been claimed to have helped, wouldn't have made a recovery anyway, although it looks like some are still in a bad way, just not dead yet).

Having read some of the more expert commentary that has been well distilled for the layman (i.e. not social media), the treatment is somewhat effective for other types of mitochondrial disease. Charlie has a different type that the treatment is not suited for.

Moreover, in the UK we do not allow patients to have completely untested treatments used on them. As GOSH say:

The hospital does not treat its most vulnerable children simply because it can and on no account does it treat them purely because novel treatment furthers GOSH’s research.

The US has a "last resort" rule (can't remember the proper name) that would allow experimental treatment if there was nothing else but the dodgy Prof didn't at any point apply for FDA approval to get ready to give it to Charlie in the US so WTF was he planning on doing?

I don't think it's a case of jackbooting over the parents wishes; it's more managing their expectations so the best is done for the kid at all times.

When you have no hope, a bit of positive news must seem brilliant. I think the US doctor sold them a dream he had no way of delivering. The GOSH staff could see that.

The parents couldn't, through their desperation.

right. so which point of law overides the parents wishes here?

Medical treatment is given in line with the needs of the patient. Parental input is secondary and relies on an assumption that the parents are acting in the best interests of the child. Where doctors cease to believe that is the case, they go to court to get an objective determination of the child's best interests.

When a child is competent enough to decide their own best interests, the parent's views are also sidelined.

BMA briefing note at: https://www.bma.org.uk/advice/employment/ethics/children-and-young-people/parental-responsibility

the doctors have a duty of care,

could they even stop you going to france to get a collar bone pinned,

porter_jamie - Member

right. so which point of law overides the parents wishes here? (sorry if i missed it earlier) presumably the doctors have a duty of care, how does this overide the parents wishes? is it only in cases such as these, or could they even stop you going to france to get a collar bone pinned, for example.

the doctors duty is toward the patient - not the parents. If the doctors think there may be an issue in that the parents are not acting in the childs best interests they go to court to get the court to rule. The court will then look at the evidence and make a decision.

this is only in extreme cases like this - not for things where its a simple difference of choice of treatment

The US Right seem to have jumped on this too. Highlights everything wrong with the liberal left, socialism, state health-care and the EU Death Panel apparently.
http://www.breitbart.com/london/2017/07/24/breaking-attorney-charlie-gards-parents-withdraws-legal-bid-treat-infant/

Yep the US right needs to keep telling them how good their pay for what you can afford system is regardless of outcomes.

Speaking in court, the baby’s mother claimed her son was “not brain dead” and could have lived a normal life if he had been released for treatment abroad, which was prevented by doctors, lawyers and bureaucrats.

I can see why her and the doctors disagreed, then.

The US Right seem to have jumped on this too

They jumped on this quite a while back, not just today.

The problem is the medical evidence pointed in only one direction - the baby was badly brain damaged, blind and suffering pain.