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 ... ?

Online your link in blue above is superb :)

theoatmeal.com/comics/believe

Thanks for that easily digestible, funny in places piece.
Loved the cartoons.

Sostenuento Hopefully the money will be used for more positive things like research into this treatment..using it as a tool to bash the NHS decisions seems a sad waste of resources.

Sadly the '' Potential to be a normal little boy'' soundbite has been picked up by the media.

Even the Estopian's son who is considered a success is far from being a 'normal' little boy, and he isn't as severely affected as Charlie.

Jolly glad that Pastor Mudhoney wasn't given airtime yesterday.

GOSH is the best children's hospital in the world. I don't agree with the statement of the family yesterday and its suggestion had the baby had the treatment (which probably would not have worked anyway) it would have worked or been best for the boy and that now it is too late.

The parents are not taking a right to life stance are they as they now are accepting the boy should die. A right to lifer would keep him going whatever so presumably they are now at loggerheads with many of their supporters, the Pope and many others.

Haven't read this thread today but just coming to add my thoughts and I suppose vent a bit. If I read one more comment from an American about how Charlie has been let down by our 'socialised medicine' I will scream.
We have family living in America who are definitely 'right of centre' in their politics. They have shared and liked some amazingly offensive and ignorant stuff on this over the past few days. So much of it from prolife politicians and public leaders. I haven't commented on any FB links on this subject because of my professional role but never have I felt more protective towards our NHS. I am actually raging. I didn't think it was possible to dislike Trump and all that he stands for more but obviously I was wrong.

I'd love to hear the legal perspective IF Charlie had been (hypothetically) a dual citizen (as in, American AND British). Would his parents have had the right to remove him from GOSH?

RMC, i think the only positive contribution that Trump has made is the introduction of the Right to Try bill. If you're unfamiliar, it's a bill that allows patients/guardians access to unapproved (by the FDA) and experimental medications and treatment if their diagnosis is terminal. Because... why wouldn't you want to TRY if there's a chance?

In America it seems to go the other way round with hospitals going to court to stop parents removing children from treatment because their particular invisible friend doesn't like transfusions.

We have not seen any position statement from Charlie's guardian yet have we?

Pumpkin that sounds fucking horrendous.
I mean, have the right to try on your OWN body, not experiment on your kids. What happens if they're made worse? Presumably parents can't then sue, can they. Bet the scientists love it

PumpkinSpiceEverything that sounds dreadful to me, especially on children who can't give informed consent.

Pumpkin- no. It was posturing.

Had Charlie been a US citizen, that would have enabled US right-wingers to put more pressure on our institutions ('they're killing a US citizen' etc and probably loony threats to send in the seals) but would not have meant the English court did not have jurisdiction. Once there was an order in place for GOSH to move to palliative care, the parties were bound by that.

Not to mention that whoever moved Charlie would need the assistance of GOSH to do so (at least in getting him transferred to non-GOSH equipment) and they were subject to a court order too.

The 'citizenship' thing struck me as pretty cynical really. Definitely not a genuine attempt to help the situation. All I could see through this whole thing was two fragile people hurting themselves over and over again in their desperation. That fools like Donald Trump encouraged them to keep doing so is shameful.

Not as a comment on this case, but PumpkinSpice you might not want to TRY everything if the chances of "success" were very very low, the "success" caused terrible ongoing suffering and the treatment was intolerable.

Very few people would choose to put themselves, or their child through that, I'd hazard.

It's not a lack of compassion to think that sometimes choosing not to try everything is a positive choice. Indeed, sometimes it's absolutely compassionate to make the difficult decision to withdraw or withhold treatment that might harm a patient.

We already have that, pumpkin, they're called early phase clinical trials. Many terminal cancer patients in the uk and us access experimental treatments via such trials. They are tightly regulated, however, to avoid incidents such as the one at Northwick Park where several men ended up in comas after taking a new drug as part of a trial. There is also a strong ethical code for running trials which centres on ensuring that the proposed benefits outweigh the risks and that patients have given full consent with proper knowledge of what will happen to them if they take part. This code was established after the Nuremberg trials of the nazi doctors, incidentally.

There is a lot of discussion in the trials world about balancing the need to speed up the trials process whilst ensuring the safety of patients. I don't think "right to try" is the best approach to this in the long run though, as it will potentially help a very small number of people where trials can benefit whole populations. The Wikipedia page on this makes for very interesting reading, thanks for highlighting!

I never understood why hirano didn't come over sooner. It's a lot easier for him to hop on a plane than charlie.
The reporting annoys me as gosh we're willing to do the treatment before his seizures. But it's just reported as gosh didn't think it would work.

It's all just so so sad.

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.

I don't understand why you keep saying this, Want2Be. There has been an open invitation to Dr Hirano in place since December, but he didn't come over till the judge specifically asked him to in July. Were GOSH supposed to go over there and kidnap him?

I'm not sure a fund in his name is a good idea...c&c repeatedly called one of the worlds leading hospitals 'evil'

I think they should donate it to gosh

Pumpkin that sounds fucking horrendous.
I mean, have the right to try on your OWN body, not experiment on your kids. What happens if they're made worse? Presumably parents can't then sue, can they. Bet the scientists love it

Scientists won't love it.

Taking your drug into humans before you've done due process can wreck the drugs chances before it's even started. It can also bugger up your data, clinical trials are carefully measured, regulated and compared. By just giving it out the data is worthless, was it the drug, coincidence? Was the liver failure that killed them a drug side effect or due to the disease?

It also drastically reduces your pool of patients for the clinical trials, so it may necer get out of "right to try" phase.

Re legal aid: it would have helped in this case, because the family would have had an experienced firm of solicitors in place from the start and would probably have stuck with them all the way through, and I suspect some aspects would have been dealt with differently - for example, an experienced lawyer would probably have aimed to get Dr Hirano over and insisted on him seeing the notes much earlier, because it was such an obvious weakness in their case; they would probably also have been advised to agree to scans much earlier. I know the current lawyers might have advised on all that, but the difference with legal aid is that the lawyers are obliged to report back to the Legal Aid Agency if clients are refusing to follow their advice, and legal aid may well be withdrawn. All of that would have injected rather more realism. Essentially there was just no need for the latest batch of hearings if those basic steps had been taken.

As for the notion that people in rented property can merrily run up thousands of pounds worth of bills on legal aid with impunity, that is certainly not the case. If the case involved any sort of financial claim, there would have been a charge on the property being preserved or recovered so legal aid would be repaid. For a case like this with no financial claim, legal aid is still very tightly controlled: usually it is only granted for specified stages of a case and/or to a specified financial limit, so if that needs to be increased or the case continued there will have to be very good justification given. You just won't get legal aid unless there is a decent chance of success. And at the end of the case, the lawyers will have to justify literally every minute of time spent, and are still paid at a rate which is a fraction of what they can charge privately.

Rache11, not sure of the accuracy but one of the admin has been commenting on various SM sites to say that it will be used to set up a foundation to help other parents fight the NHS in similar situations.

Which is bloody awful if true.

Right to try sounds great in theory but look at the whole host of ethical issues and complications we have unearthed in the space of a few posts. What we really need is a western cultural shift in our attitudes to medicine and ultimately death. We seem to be setting our HCP up to fail. As a society, both here and in the US, we have this belief that anything can be fixed and when it can't there is a tremendous backlash. Doctors etc aren't Gods, they are human beings and they also make mistakes. We have come so far in a short space of time in medical advances and that is, certainly good thing. But it also brings with it a whole heap of ethical issues and we need to remind ourselves that however much we prolong life we can't ultimately cheat death.

Thanks Ceto

You just won't get legal aid unless there is a decent chance of success

Do you think that they wouldn't have got legal aid now? Because to me as a layperson, I can't see how any of it could be justified, having seen the full statements.

I am not sure that it would be a good use of public money, but I am torn between that and a parents right to seek judgement from the court.

I thought the judge bringing legal aid into it raised a very very good point and I'm pleased someone's mentioned it.

i dont think legal aid would have been given to an appeal

and i agree if its given to anyone an evryone whos to stop hundrds of people bringing more of these cases to court

There is an article online today saying they are still in discussions with GOSH over taking Charlie home. The parents obviously want to take him home, GOSH aren't in agreement and that the Judge may be asked to rule if the two sides can't agree. I really hope that isn't true, it would awful beyond words if this went back to court

I am just trying to get my head round public money paying to bring experts over from America when there was never any chance of the treatment working.

Surely that should not happen?