Charlie Gard 14

[GabsAlot]

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:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

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

Barristers could be doing a lot of pro bono work!

I'm not sure if they would want to when they consider not just how long this case has (for want of a better word) dragged on for but also how many back office hours this would have taken.

It is astonishing how many people think parents have rights over their children.

As I already said until this case I hadn't really considered it. And I am pretty well educated but it just wasn't something I had kind of put together. I don't recall ever being told this, so I can presume that is the same for the general population.

Rights of parents over children is unlikely to be told to you. It only comes to the fore in rare disputes like this. Parents take responsibility but the child has rights.

I didn't really think many barristers would want the pro bono work. However this case does highlight a need to look again at legal aid. The parents were denied it I believe.

I don't think it will become more common. I think the judge is looking to close as many loopholes as poss to reduce the number of times it happens.

I am torn on the legal aid aspect, on one hand I cannot understand why they were denied it, on the other, was it denied because of a low chance of success?

Because this case would run in to millions wouldn't it? On legal aid?

I think some NR parents have discovered that they don't have rights to see their children, but their children have rights to see them. If you're aware of that then it is fairly clear that parental rights are a fgment of the parents' imagination!

Not every person ever needs to know the former, though.

You have to meet certain financial conditions to qualify for legal aid. Maybe this was the reason they didn't get it?

The criteria for legal aid has also been tightened up significantly in recent years.

I agree that the Children Act is something to be proud of. Any dilution of the rights of the child would be a retrograde step and would undermine the safeguarding of vulnerable children. Parents are not always the best people to makes decisions on complex matters such as medical treatment despite their good intentions. It is a pity mediation could not have taken place but I think matters had deteriorated to such an extent that I doubt whether this could be even attempted. It is normal in court cases for barristers to try and reach some areas of common ground but in this case I can't see that happening. I think C and C are so focused upon the Nucleoside Therapy and so want it to work that they cannot consider any other solution. Even the consultant they appointed to evaluate Charlie agreed with the medics at GOSH.

I also think they should stay off social media it can't be good for them to read all the posts from people who do not agree with their stance. They need to conserve their energy for the court case and its outcome as well as years to come. I see Connie has commented on an article in the Daily Heil/Fair/Malice where most people support the GOSH position. I think they feel the need to justify themselves and fight all opposition from wherever it comes. I am genuinely concerned about their health.

Gross monthly income needs to be below a about £2500 iirc. As a postman Chris will be on about £24k (maybe more with London weighting) and Connie worked too. I wonder though if they have had to take unpaid leave of absence from work to deal with this, in which case they may have been eligible for legal aid. Interesting question.

Ellie56 yes possibly, I was wondering if it was the type of case too.

Found a link, looks like it could be a combination of both.

www.gov.uk/legal-aid/overview

There is a great worry in the judiciary at the number of people having to be litigants in person, i.e. advocate for themselves. It is taking too much time and is not satisfactory in terms of justice being done. Many judges believe lack of legal aid is compromising the outcomes of trials etc.

I wish someone close to them starts preparing them in case the Judge rules towards palliative care again. Will help a little.
It breaks my heart to know that the family had already said their goodbyes & were preparing to let him go before the Italian & American contingent waded in & raised their hope after it had already been crushed several times.

The protest is going ahead outside the law courts
Article in Daily Mail

Going back to Aysha King, my memory is the parents objected to chemo and wanted proton beam rather than standard radiotherapy. The doctors at Southampton said he needed chemo first and that his disease was so extensive that he would need so much proton beam it had no advantages over standard radiotherapy.

So eventually he goes to Prague - largely because he was in a foreign country and by this point there was an outcry and the DoH couldn't do anything else.

And in Prague - he has chemo first and so much proton beam that, yes it would have been the equivalent of the treatment he would have had in Southampton.

So the fact he is thriving now tells us nothing at all about the parents being right. He has basically had the treatment he was recommended in the first place. He hasn't made it to 5 years either so we can''t make any judgements about his survival.

And finally it means nothing at all about a child with mitochondrial disease.

Friendly iirc the court judgement from April, GOSH's position and the court's position was that the treatment could potentially involve pain and suffering for Charlie with no hope of any real benefit.

There was a very good post a few threads back talking about the difference between 10% clinical success - the pressure on Charlie's ventilator being able to be turned down a little for example - and functional success in terms of Charlie gaining more vision or usable movement.

The childrens act as it is was in response to the victoria climbie enquiry. Undoing it would be a major step backwards.

I think i read the US is the only country not signed up to the United Nations rights of the child convention?

I work in safeguarding. Parents definitely do not always know best.

I've just been on FB arguing that very point with someone who was saying 10% chance of him being cured. All the journalists who've lazily perpetuated that myth should be shot. Or sent back to school.

Maryz agree the so called protest looks very small and apart from pastorwanker () they all look as though they would rather be somewhere else.

Not very 'christian' comments underneath the posts on Patrick Mahoney's page either.
I would comment but only his religious friends can do that on his settings.

Ashya clearly isn't the same as Charlie in terms of prognosis or condition. It does bear similarity in terms of parents defying medical advice with some public and media support and, in that case, the way the hospital handled communications to the press was poor, which I think has contributed to a lack of trust. And in many people's minds (and media portrayals) cancer = terminal. So i think it is an obvious reference point for many.

Total side issue but as a parent of a child 4.5 years in remission I know that in childhood cancer they don't typically use 5 years in remission as a catch all marker in the way they do for adults. Hopefully he will continue to thrive either way. That's not a possible outcome in this case it seems though.