Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

News

See all MNHQ comments on this thread

Charlie Gard (16) Future implications arising from case

999 replies

Puzzledandpissedoff · 24/07/2017 19:43

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

OP posts:
NikiBabe · 25/07/2017 00:31

See I dont think he was being set up.

I think he wantes to go straight to human testing. As GOSHs position statement said unbeknownst to them he has a financial interest. Wouldnt it be nice to skip animal testing and go right to human and use all the data to further your research.

NatashaGurdin · 25/07/2017 00:35

Jux

However critical thinking is taught, it's not working, either. We need to think about that too. Or is the population just getting more stupid less able?

I think over the past year or so it has become clear that many people have not been taught critical thinking!

With regard to the cultural differences between here and the US (which I think Across has explained a bit about), I made the mistake of clicking on a US story about the case on FB and have spent most of the evening on and off along with a few others from the UK repeatedly explaining to Americans that the government has nothing to do with the judiciary in the UK and the government was not responsible for the outcome of this case.

They also do not seem to be able to get their heads around the fact of parental responsibilities rather than parental rights and they keep saying that either 'socialized medicine' or the cost of treatment is what caused this outcome. One of them even said that socialized medicine just dumps the elderly when they get old which was a very strange claim given that I think insurance companies would be more likely to do that.

They really do not seem to understand why the parents were not allowed to just take him to the US when GOSH said they didn't think the treatment would improve things and may in fact make things worse. Confused

TheFairyCaravan · 25/07/2017 00:36

I think it was cruel beyond words of Hirano to dangle that carrot without studying any of the scans, or Charlie's medical records or examining him.

False hope was given where there was very little or none, yet the masses, and C&C are angry at GOSH. That's so wrong.

HollyhocksAndAPompadour · 25/07/2017 00:37

I have been reading these threads with great interest on and off today, so a few thoughts before I go to bed. Sorry it's so long - I've been saving it up!

  1. The law on what constitutes the best interests of a child and how those best interests should be determined does not need changing. It's well-established for good reasons. (I am a lawyer, but not in family law which I last studied at university decades ago). For all that this has been an emotive case, it is worth noting that the courts did their job well, kindly and properly - in fact, just as you should expect they should.

Francis J was the epitome of a compassionate, but wise and balanced judge. However, for all that the legal representatives also did a good job, neither the judge nor justice was helped by the fact that the family was not permitted legal aid.

Speaking as someone who does about 100 hours of legal pro bono work a year, it is not suitable for complex cases of this type and it's not fair to expect people to rely on it. Non means-tested legal aid ought to be available, if only because it ensures consistent representation which helps the court. Lawyers are able to do more, and not in so much of a rush, which usually makes presentation of evidence better because they can think around the issues and anticipate questions. Less stress is placed on the parties because they won't worry what the lawyers can't do or that they're about to lose legal representation because the lawyers can't afford to do it any more. I hope that this is one thing that will change because of this case.

  1. Family law suffers from a lack of transparency - often for good reasons. Such disputes are not always suitable for public consumption, but in the absence of transparency, people believe the worst of the courts. The Transparency Project has written an excellent blog today on that subject: www.transparencyproject.org.uk/kindertotenlieder-and-the-limits-of-transparency/

From having been an advocate for greater transparency (within appropriate limits) in family court so that justice can be seen to be done - an important attribute of the Rule of Law - I now wonder whether this is possible to the extent that would be needed in cases like these. I don't think that the public, the courts, the hospital or, most of all, the family have been best-served by some of the publicity surrounding this case.

I am no longer much surprised at people's ignorance of how the courts work, or what their job is (and what it isn't) ,or even of what constitutes evidence versus what doesn't. People misunderstand all of these things, and over-estimate greatly their own understanding. Some of the comments from the press and the public on this case have been jaw-droppingly obtuse. Family law is not my speciality so I wouldn't dream of advancing an opinion on what the law should say (because I know that I simply don't understand enough), but I do understand civil litigation, so from what little I did know, I could tell that some of what was reported was wrong. I also know that the subtleties of any case are not repaid by the need to frame your piece as either "balanced" (whatever that is taken to mean) or by needing to find a winner. When a journalist comments on cases in my speciality, unsurprisingly they usually get quite a bit of it wrong (or at least not quite right) because frankly if you could understand the cases as well as me, and then explain the judgment in 250 words, it's amazing that I'm still making a living after 25 years in practice.

Unless public education and understanding of the courts and the issues that surround cases like these improves, less transparency may have to be the answer because, to be frank, people can't be trusted to behave well, and respectfully. Some seem apparently incapable of understanding that although a difference of opinion may be framed in adversarial terms as the court process demands (and for good reasons), it does not necessarily mean that one side is right or good, and the other wrong. It certainly does not mean that the dispute need be framed acrimoniously. And whilst mediation may be good for a number of things, you have to be in the right mindset to benefit from it to begin with, and in a case like this that may be asking too much of people under great personal pressure.

One of the reasons I have followed these threads is because the debate has been measured, proportionate, respectful and thoughtful, even though some opinions are very strongly held. You're all a tribute to MN. Abuse of the kind that is offered by some in other fora on social media seems however to be the norm and regarded as acceptable, or at least not unusual. If social media will not moderate itself, then the only way to avoid that is that people are not told this sort of thing or not enough to identify the parties concerned. No one has an unassailable right to all information, particularly if they cannot be trusted to remember that if you wouldn't say it to your neighbour's face, then perhaps you shouldn't say it at all.

I hope that all concerned in this sad case find peace. Good night.

NatashaGurdin · 25/07/2017 00:40

TheFairyCaravan

I think this blind anger being directed against GOSH is also the result of not being taught critical thinking, the masses seem to be pointed at whatever target is given to them and let off without asking a single question!

DorotheaBeale · 25/07/2017 00:43

I can't see that Dr Hinaro has at any time held out false hope.

From the first court judgment back in April:
Charlie’s information was conveyed to Dr. I electronically and the same day, 30th December 2016, Dr. I and Professor A spoke. This was an unofficial conversation and there is no record of it, but Professor A indicated that Dr. I agreed during this conversation that the therapy was unlikely to help Charlie’s severe neurological disease.

He said at the time of the first hearing:
I can understand the opinion that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.”

Having concluded that his treatment would not help Charlie, he probably didn't see any point in coming to see him. If he had come, it might have raised hopes that couldn't be fulfilled.

Maryz · 25/07/2017 00:44

This reply has been deleted

Message withdrawn at poster's request.

Maryz · 25/07/2017 00:47

This reply has been deleted

Message withdrawn at poster's request.

TheFairyCaravan · 25/07/2017 01:02

DorotheaBeale, he needs to tell the parents that, then. And say it publicly. Because their statement specifically says that he said there was "no brain damage" in January (and April) and that he's still willing to treat.

Exactly.

And why is he now saying there was no brain damage in April and January but back then he said treatment would be futiile?

There's a web of inconsistencies being spun here and it's going to get out of hand before long.

NatashaGurdin · 25/07/2017 01:17

Maryz

I wonder if it depends on whether he needs to work with GOSH in the future to further his work as to whether he will support their view publicly?

It seems to be a pretty small community of mito experts who all seem to know each other and who collaborate with each other doesn't it?

Jux · 25/07/2017 01:25

I think back in April he hadn't seen the scans. So he went into Court back then, just taking what he'd been told (by the parents, presumably) as Gospel truth. So he started off thinking he could do something (not much even then), but during cross examination he heard a bit more factual information and responded to that with the futile thing.

He wasn't interested enough to even read the ruling, let alone anything else. Why would he bother, he's busy and this is irrelevant to him.

I would have expected him to delve a little more deeply before agreeing to appear in Court again though, I don't think that's too much to expect from a professional of any sort, unless he was under pressure from unnamed external sources.

SomeDyke · 25/07/2017 01:26

As regards Hirano, apart from his dodgy grasp of statistics (common to a lot of researchers), he sounds just like a typical researcher (like me) makes statements which are technically correct but liable to be either incomprehensible or misunderstood by others. So saying X and Y show no evdence of brain damage could be factually correct, but unless you ask supplementary questions like if there were would you expect to see it? then you might end with the i cannot say or you'd have to ask an expert or i don't know or some number greater than zero........It just is how some researchers talk. Talking so you will not be misunderstood by ordinary folk, or patients, that is a totally different skill. AFAIK we don't know what was the first contact Hirano had with the parents or what was said..........I don't think Hirano is totally responsible for someone elses false belief, even if he didn't help to clarify it. And the coauthor of his treatment plan has managed to stay out of it and never even got to appear..............

What duty of care do doctors have to people who contact them, from outside their own country? We might know what the GMC would say here, but a US doctor is a different matter. Although he wasn't exactly a model of clarity, I will admit.

DorotheaBeale · 25/07/2017 01:26

DorotheaBeale, he needs to tell the parents that, then. And say it publicly.

Well, I assume he's limited in what he can say publicly due to confidentiality, the same as all the other doctors.

why is he now saying there was no brain damage in April and January but back then he said treatment would be futiile?

We don't know what he is actually saying, we only know what the parents say he has said. And given that they still don't seem to realise that no-one had any treatment to offer that could have made Charlie into a normal healthy boy, I have to question how good their understanding actually is.

Jux · 25/07/2017 01:33

One thing which could change for the better would be ensuring that medics are all aware of and understand how medicine is practised in each others' countries, especially when the patient is a minor. I have no idea whether DrH understood the completely different stance we have here to the stance they have there. At least when this sort of thing is happening.

That may be an excuse I'm making for him, mind.

Want2bSupermum · 25/07/2017 01:34

I don't understand why people got upset with Trump. What he did was commendable for once. What he was doing was opening the door to the family moving here. They would have qualified for assistance and their child treated on Medicaid (which is free) once the cash they raised ran out. Trump could have said nothing. Instead he gave the OK for this family to have a long term medical plan should they be able to bring him over.

I don't like Trump and think he is terrible but I do think he has someone on his team, probably his wife, who did the right thing. You do not come to this country with a sick child and no medical coverage.

This case is so very sad. There are no winners in any case like this. Certain aspects of this case have shocked me. Namely I am very surprised that GOSH isn't working in parallel with more researchers. These specialist centers are dealing with very rare cases and I'm just really surprised there isn't a better link between the clinicians and research teams. With these rare cases you must think global and have a process in place that enables researchers to come to the country to do evaluations in person. I would have thought that with this case being diagnosed, details were not passed to research teams.

I do live in the US and here in the NYC area we are linked with research teams for autism based on DS being diagnosed. They collect data on him and request to do various testing on him for research purposes.

Maryz · 25/07/2017 01:50

This reply has been deleted

Message withdrawn at poster's request.

Maryz · 25/07/2017 01:57

This reply has been deleted

Message withdrawn at poster's request.

NikiBabe · 25/07/2017 02:09

If they want proof that for profit healthcare kills they need only look in their own back yard.

ScarlettSahara · 25/07/2017 02:13

Want GOSH's position statement for 24th July is available online and lays out the medical case very clearly and compassionately.

The doctors working at GOSH are very emminent in their field with specialised experience in mitochondrial disorders and will definitely consult other researchers and clinicians in their field (as confirmed in their statement).

There was sadly never any real hope for this little boy. He very quickly developed severe encephalopathy (brain damage) as well as organ and muscle damage which could not have been prevented.

He was thought to have some experience of pain but would never develop the ability to experience any joy from life. The doctors and nurses caring for Charlie would have made a clinical judgement based on their own observartions from extended periods with Charlie as well as the results of scans and EEG's.

The GOSH team have been compassionate and not neglectful. It is sad that relations with the parents broke down but given the false hope that they (understandably) clung to I fear that this was inevitable. This court action was never about money or incompetence it was sadly very different views about what would be in Charlie's best interests.

The GOSH team will be very heavy-hearted that the relationship soured and there will I am sure be a clinical review to see if they could have managed anything better.

Maybe in 5/10 years time advances will have been made such that patients with this mito disorder can be treated. Sadly for all involved that time has not yet come.

jinglejanglejobs · 25/07/2017 02:19

Maryz, it wasn't Trump for once. He's been off tweeting about 'Crooked Hillary', Obamacare and visiting boy scouts.

BoreOfWhabylon · 25/07/2017 02:32

I hope what I am about to say doesn't sound insensitive but it occurs to me that a post mortem examination, if one is performed, should reveal whether or not any brain damage is present. Can any medics confirm?

ScarlettSahara · 25/07/2017 02:40

I think a post-mortem would just create more distress and not add anything Bore. Scans have shown no structural damage to the brain- it is the neuronal pathways due to lack of functioning mitochondria that is the problem.
Similarly the latest MRI scan showed muscle tissue had been replaced with fat so no hope of breathing independently sadly.

Want2bSupermum · 25/07/2017 02:47

I read their statement on July 24th. What I do not understand is why the doctors at GOSH didn't start working with this researcher much earlier because it's clear to me that is what the parents wanted and I do think parents should have the right to request the specialists at GOSH do this. I think that process of specialists in the research field coming into the UK for cases such as this needs to be looked at. I think it should have been possible, at the request of the parents, for updated medical information to have been provided to the researchers and a temporary license put in place much faster for these researchers to have performed an in person examination of the patient before this even went to court.

I'm very fortunate to not have a dying child. Having a disabled child makes it much easier for me to have a whole lot more empathy for a parent who is fighting for their child. Until you have been in the position of having to fight for life altering treatments and therapies it's not always easy to see where parents are coming from.

I'm the last person to like Trump but he did the right thing for this family. I'd love to see this sort of offer extended to the Afghan and Iraqi children who have been left with life ending disabilities.

BoreOfWhabylon · 25/07/2017 02:49

Thanks Scarlett. I guess a pm wouldn't be required anyway, since there is no doubt about the diagnosis.

jinglejanglejobs · 25/07/2017 02:53

Want2bSupermum GOSH did. They were looking at it, discussed it with Hirano, applied for ethical approval, but then Charlie took a sudden turn for the worst with a big episode of seizure activity and displayed the contraindication that all doctors involved (including Hirano) agreed on - severe epileptic encephalopathy.

Trump didn't do this out of the good of his heart. He's currently attempting to get rid of Obamacare.