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 ... ?

GOSH would have been capable of administering the nucleosides themselves. They did not need the involvement of a researcher but it is still normal practise to consult with others in their field which they did.
The drug has not even been tried on mice with Charlie's condition so an ethical decision had to be made. They were about to start therapy when Charlie's clinical condition deteriorated to the extent that they no longer felt that delivering treatment without hope of significant improvement was in his best interest.
I know we would all hope that something could be done but medicine is not there yet for this particular condition and in addition researchers are often remote from the patient and not best placed to assess what is best for a particular patient.
I have no wish to criticise Doctor Hinaro. I think he got drawn into this case but I don't believe he put himself in the best place to judge what was best for Charlie when he initially advocated treatment.
I agree with you want that it is perfectly understandable and indeed admirable that Charlie's parents fought for a different outcome but I truly believe that they were sadly misguided. I truly hope they find some peace and solace.

Oops cross-post with jingle and Maryz - slow typer.

Agree it would be nice to think Trump was offering to help out of compassion but sadly suspect his motives were to demonstrate that a social care package for health does not work

You are welcome Bore and yes you are right. Night all.

I don't doubt these parents were misguided. I think to prevent that from happening in the future in a case like this there needs to be a rush for the paperwork to be put in place for the doctor to come in and perform the evaluation in person. This researcher has said repeatedly that they could help but any reasonable person could see that was highly unlikely given the other evidence presented by the GOSH medical team.

I find the comments about medical here in the US for minors to be ignorant at best. A child such as CG would have medical expenses fully covered if the family didn't have the means to pay for it.

I know my ex boss who was a multimillionaire would fully fund treatment for children like this that wasn't covered by Medicaid. I was surprised just how many people donate on a case by case basis. If you pay medical bills directly and not just give cash to the family it's a write off for tax purposes.

It's a completely different system here and Obamacare care isn't working for so many people. Yes people have insurance but they can't afford to use it. Our insurance is $25k a year in premium and the baby was $6k in copays. First child five years ago was $100 in copays and our premium was $6k a year under the old system.

Want the US doctor could have come in person to evaluate Charlie, there was nothing stopping him from doing so except Charlie's condition deteriorated so it was agreed the treatment was inappropriate. I assume the reason the doctor didn't fly out was because the assessment would have been pointless. I noted that he didn't pursue getting the appropriate US approvals for treatment, so even if Charlie had been able to fly to the States it's not at all certain he would have been given the experimental treatment.

It's nice that you know someone very generous who would pay for a child's treatment but there are children who don't get optimal treatment or whose parents have to do massive fundraising or bankrupt themselves if they are not covered by insurance or Medicaid. The UK system has plenty of flaws, but the US one is also very imperfect. Obamacare might not be the solution but there are reasons why healthcare was such a massive campaign issue back in 2008 and reform so contentious now.

Foreign doctors can't just come to the U.K. and perform examinations/evaluations. The parents have a very good point that this started in January and it's now the latter half of July. It's an absolute disgrace the legal process took so long. There is a person who has been kept alive throughout that time via a ventilator.

Also, I really don't think the system here is that bad if you have a sick child. They do not deny treatment. The child qualifies for state coverage via Medicaid. There is also the option of the child getting Medicaid through qualification of social security. We have been able to get our son qualified for this so he will always get fully funded medical care which isn't dependent on parental income.

There is so much help available here for terminally sick DC it's quite amazing IMO. If they put half as much effort into their MH and drug addiction programs the results would be amazing.

The irony, in a way, is that GOSH are so up to date that Charlie's diagnosis was prompt. It's not like you can just do at standard blood test and rare genetic conditions will be flagged. Had his diagnosis not been swift then any consideration of experimental therapy would have been moot, as is deterioration would have occurred prior to a diagnosis being made. My understanding is that following the muscle biopsy a very specialised gene panel was performed which demonstrated the mutation. In order to diagnose rare conditions you need specialists to think to test for them first. In addition, a number of tests would have been performed to exclude other forms of muscular weakness.

Would all of those rare genetic and metabolic tests really have been covered by Medicaid in the US? Could they have been done simultaneously so as to expedite diagnosis or would have it been necessary to ensure that one condition was ruled out before the next was considered? Bearing in mind that he was ventilated while all these tests were being performed. He's had 9 months of intensive care in the UK plus thousands of dollars of investigative tests, not to mention the day to day blood tests required fro a severely unwell baby. If his parents moved to the US would there have been nothing out of pocket?

The legal process has been long because the family appealed (at UK and European levels) and then went back to court again claiming new evidence and asking for a new judgement. If they had accepted the first verdict Charlie would not have been on a ventilator for so many months.

It's an absolute disgrace the legal process took so long

I guess these threads have underlined a lot of sometimes really different perspectives and expectations. Becuase I was thinking how fast it had been. Especially considering the logistics of legal teams being engaged, getting up to speed, court time needing to be found ... and a whole host of other stuff I don't know about that the wheels of justice need in order to roll forward.

I can't see how where I live it could have been done in anything like that timeframe.

To illustrate, a father sought to have the feeding tube removed from his (adult) daughter (PVS post RTA) in 1999. The case concluded in 2009. And it was at least as high profile as the Gard case. With the then prime minister and the president at loggerheads with constitutional crises being threatened all over the place.

I think, obviously from an outside perspective, that Britian has looked really efficient and hare-like from the legal side of things.

To be honest I only worry about our NHS. The damage to the NHS from this case is going to have far reaching consequences. The NHS is being berated at every possible opportunity by ant NHS media and the Tory party are hell bent on privatising the NHS by the back door. We don't want privatisation. We want to keep our NHS but our government is systematically starving the NHS if funds in order to let it fail. I do not want a system like America, where 29 million people do not have ANY medical insurance and very soon that figure will be 49 million under Trump. What a disgraceful thing for the world leading and richest country to have so many people without secure medical treatment. Our NHS is the best in the world. This case and those that will follow whipped up by this case and the gutter press will topple a system that has made sure no one in this country fear dying because they have no insurance. In pursuing parental 'rights' there could come no NHS.

Hollyhocks thank you for that long and detailed post. I am in a difficult family law case (although thankfully, not as distressing as this one) and it is necessarily adversarial as, had we been able to resolve our differences in the best interests of the child, we would have done so. It is very hard to explain things to someone, who, for whatever reason, does not want to hear, even if you are the person who has been providing the great majority of the care. The court process is extremely stressful, and people do have opinions which reflect their own interests and are not necessarily helpful or objective.

I am heartened by the way in which the judge has handled this case, which seems reasoned and compassionate. The judge presiding on our case is similarly extremely incisive and balanced, although somewhat terrifying.

I feel so very sorry for everyone involved, the parents look exhausted and ill, and I can only imagine the stress they have been under. Whatever one may think of their reasoning, it is exhausting to keep advocating for your child, and the reason you keep going, is because you believe it to be the best thing to do. I went to court because I no longer believed I was able to make certain decisions without that level of guidance as to what to do. The judge has been scrupulously fair, but also clear that consensus needs to be reached on some points. I am trying, I keep trying, but it is exhausting.

I do not have anything but compassion and sympathy for everyone involved here.

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?

To a certain extent there is no point teaching critical thinking to kids and young adults only to propel into the world as adults, surrounded by a media that is determined to be as glib and click baity as humanly possible. Do as I say, not as we actually do once released from the classroom is never going to be all that successful an approach. Adults modelling preferred behavoirs and attitudes is essential to reinforce and remind what has been learned in the formative years.

Reinforcement of CT has to be an ongoing thing. I'm not exactly over educated (left school at 16 in the 80s with a rather pathetically small clutch of qualifications) and I struggle with concentration, distractability and a wholesale inability to cope with anything "boring".

What helped me realign my resposes to headlines and emotive topics of discussion was access to well written, entertaining and well explained articles in the main stream press. And boy do I miss Ben Goldacre now he has mostly retired from writing. He had a readability that gave me pause for thought, then a foundation. I've done my (imperfect) best to hang onto the foundation and build upon it.

If non-vaxxing, highly reactive, v. impulsive, over emotional, "so not in the top 10% intellectually", prone to CA style reactions and expression me was reachable, and held onto longer term, I don't think it is an impossible task to bring critical thinking back into fashion.

But it will have to be via mainstream communications, and it will have to be immaginative in order to compete for attention in a world where people are bombarded with headlines and content screaming "look at me! look at me !"

I've posted this link about raising awareness and understanding of the backfire effect before. But I think it is a prime example of how a very creative approach can penetrate in the way that more traditional approaches are perhaps no longer achieving.

Thank you online will now look at your link

I think you've already seen it Sostenuto

But I go back and look at it fairly regularly, and always find something I missed the previous reads. Mind you... my memory sucks

My own theory on why Dr H did not read the April judgement or Charlie's records.

He probably sees himself as a researcher, more involved in developing the drug than actually day to day clinical decisions. But he does have clinical background & is able to apply that knowledge too.
He presented evidence of his research to court on TK2. He said in April it is unlikely to help Charlie's brain but he would treat if they were in US if parents requested it & FDA approved. He never made that FDA application as he had never seen the patient.
Having 'raw data' from scans without the child in front of you doesn't help make clinical decisions- if it did then we just needed raiologists not clinical neurologists- different branches of medicine do different roles and hence in complicated cases like this MDT meetings are so crucial. Am sure if CG were To go to US he would have needed a team to assess & treat, not just Dr Hirano- and am sure they too would have warned parents it was futile. (But probably given him treatment if they insisted)
As for him signing that letter with experts in July I strongly suspect he was pressured to do that by the White House. (They needed a press story to distract people from what they are doing to their own health care system. I do not for one believe Trump actually had the child's best interest in his heart.)
He was truthful in the witness box, he said his data was for TK2 not Charlie's exact condition & it will only help with muscles mainly & he doesn't know what it would do for Brain as it's never been tried- he showed very little enthusiasm, it was almost like he was begging the judge 'please don't make me do this'
Like I say just my theory

A theory I totally agree with mommy

Isn't critical thinking really just common sense and the ability to ask questions? I am of average intelligence academically, but am a musician, amateur artist and read an awful lot. I read all of Dickens before I was ten. Did 3 A levels in the arts so am creative rather than academic. I get general gist but by asking questions I have learned a lot as I have on these threads but a lot of what I know is common sense which you cannot teach.

Want2bSupermum, Charlie was admitted to GOSH in October last year as an emergency with no diagnosis initially. By December, GOSH had already been discussing him with Hirano. I would say that was pretty top tier treatment.

He refused to come over after being offered the chance, then waded in with an open letter that GOSH were unaware of.

GOSH were left to deal with the backlash, financially and emotionally for the staff.

I have changed my mind about legal aid for cases like this but all the lawyers I think would disagree.

Surely this case is an example of the legal system almost being 'abused', wouldn't this have cost the tax payer millions with experts being flown in and barrister costs etc?

I am looking at this as a non legal person so probably have missed the point of why legal aid would have been a positive thing (and the judge mentioned this too).

www.theguardian.com/commentisfree/2017/jul/24/charlie-gard-tragic-respect-courts

I thought this was a decent explanation of why the courts sometimes have to get involved in cases like these. Also, I think it's a point well worth making that, if you were to give parents absolute power to make life or death decisions over their children, sometimes they would be on the side of turning off the ventilator against medical advice, which probably isn't what the pro-lifers have in mind.

I think one thing this case highlights is how much of the mud flung at our courts by the tabloids over the years has stuck. For me, the courts system isn't perfect but it's as near to an impartial arbiter of disputes as we're ever going to get in an imperfect world. However, a lot of rhetoric has been flung around in this case about "faceless bureaucrats", "out of touch judges in wigs" and courts as sinister emanations of state power. It's actually the culmination of years of propaganda, a lot of it from the Mail and Sun.

friendlysnake Agreed with legal aid having the potential to be abused in these cases.
Legal fees add up PDQ even in cases of divorce, never mind paying for expert opinions, flying specialists around the world.

Years ago, when one could get legal aid for representation in a divorce, a 'charge' was put on one's property if one owned one- legal aid was not ''free'' for home owners.

So someone renting could get ''free'' [to them] legal fees and not have to pay a penny back?
That could lead to really endless expensive litigation, as if one is paying oneself, one has to keep an eye on the bill.

It has been suggested from posts on CA that C&C are going to set up a foundation for other parents to be able to 'fight' [that adversarial word again] hospital decisions?
That seems an awful waste of money, and could fritter the donated money away in short order.

Did the people who donated for the potential 'treatment'want to fund future legal ''battles'' with the NHS?

Donating the money to a mitochondrial research charity, or something positive would be a better use of funds.
Hopefully CA have got it wrong.

Mommytomylittlestars

I do not for one believe Trump actually had the child's best interest in his heart

This /\ ....again, with feeling.

Truth.

Trump didn't care at all about Charlie.
He saw instead a chance to make himself look 'caring' and to use the case as a stick to beat 'socialised medicine' with.

Makes my blood boil.

No I believe that even in court statement by cy it was obvious they still blamed gosh. The fund will be to fight for parental rights bankrupting the NHS.

And I don't mean it to sound bad, but that fund should be used for further research so that treatment for Charlie's condition can become available, not to fight in court for experimental treatment of any sort that has not been tested properly.