Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

www.theguardian.com/uk-news/2017/jul/29/ten-cases-like-charlie-gards-heard-english-courts-this-year?CMP=Share_iOSApp_Other

The above is an interesting read. Most cases involving children are not party to the SM circus. Thank goodness.

There is a suggestion that Connie is going to set up a charity for research. I personally believe they should offer to return the money ( especially to the donor who had given their life savings, although what possessed them to donate that amount is beyond me!) as the donations were given on a base of hopes rather than facts.
If they don't return the money why not join forces with the other mitochondrial charity ( someone posted one called Lily?).
Unfortunately Charlie's name will live on regardless of a charity. We all (of a certain age) remember Victoria Climbie and Peter X, although Victoria's legacy was changes to the Children's Act, let's hope Charlie's is not to the detriment of the Act.

There is also a report in the Sun, that Connie wishes to pursue changes to the law- I hope not unless it's to make the law tighter with regards to SM interaction and to strengthen the laws of the child.

Re: FB I reported someone who made a death threat to FB the post was rapidly removed. In hindsight wish I had cut and pasted it and reported it to the police - it was truly offensive.

I have been careful to not put my personal opinions down on SM, although what I say in private when discussing it with friends/colleagues/family ( esp as one member works in family law) is another matter. luckily for me we are all of a similar mindset.

@MumIsRunningAMarathon I've obviously missed the comments against GOSH & the court. It's quite a fast moving thread with lots of comments. I'll revise my comment to say that the vast majority are thankfully offering messages of support. The people that are giving their ignorant "opinions" disgust me.

I've sat reading the court Judgements a bit more fully this evening. It's quite upsetting to know that the Ethics Committee at GOSH met to discuss Charlie having a tracheostomy in November and it was decided No, as his quality of life was so poor. .
There also shows a meeting between the parents and all of Charlie's Drs on 13th January, and it was marked as a significant meeting as it was decided that Charlie had very limited brain function, and showed no chance of any treatment helping him. Nucleosides had been discussed with the US Dr, a date was even initialled for Charlie to have a trachaestomy and go for the treatment, but further tests showed Charlie's outlook deemed so poor that it was felt it would prolong his suffering. The parents opened the crowd funding page 2 weeks after this date.

Some of it doesn't make for very savoury reading tbh, and if anything comes from this case, I think it would have to be much definite and swifter legal action to end a child's suffering and something to do with these crowd funding pages. The Judge noted that there had been some level of disagreement or confusion between the parents and Drs, as if nucleoside treatment had shown any chance of improvement, it would have been funded, and that this was "contrary to the view that may be formed by others in the context of the parents passionate and successful appeal to members of the public to provide funding for treatment in America". It was never about the cost. But still the public coughed up at least £1.3 million and that's what is accountable.

Unfortunately Maryz a huge amount of money is spent by the NHS on law suits and out of court settlements. Out of court settlements are not done because the NHS is in the wrong, often they are given because it would cost far more to go through court.
It is a concern and we do live in a litigious world, when I am writing notes, I always think would I be able to defend this in court, thats sad. Thankfully in my 27 years I have never received a complaint only compliments......

There is also a report in the Sun, that Connie wishes to pursue changes to the law- I hope not unless it's to make the law tighter with regards to SM interaction and to strengthen the laws of the child.

According to a family friend:

"They will be looking to campaign for changes to the legal and health system after their nightmare experience."
Presumably to give parents the "rights" to demand whatever they want regardless of how it impacts on their child's welfare? Can't see that happening.

The article is interesting in that it highlights that cases go through courts without all this media attention but yes Maryz you are right in that it is worrying that the users of SM may use vulnerable people for their own agenda.
Unfortunately everybody can't be saved, is this tide of hate going to mean that medical teams stop intubating just in case they can't then extubate without a media circus? It's hard enough in critical situations without that pressure.

To be fair Maryz, I am sure it won't come to that as the needs of the patient come first not what if's. Thankfully.
I am now returning as an observer rather than a participant. I have enjoyed reading the thread and I have learnt a lot, mainly from the personal stories told on here.Thank you to all ( even the snipers, as it showed how mature and reasoned the thread was that they were largely ignored).

There are plusses and minuses on both sides of the Atlantic as far as healthcare goes. But then, as with so many of us 'we only know what we read in the papers' (or on MN). I think the NHS appears to be wonderful, the idea that I can obtain all needed care at no cost (other than paying my taxes) makes me envious, but then I read on MN about 'post code lotteries' or long delays in obtaining needed appointments (mostly for specialists) due to backlogs which makes me happy that I can pick up a phone and call any doctor in the book until I find one with an opening. No referral needed, no hoops to jump through. But then, I have good insurance. So I guess it's 'no cost' vs 'instant access'. Too bad we can't take the best of both systems and make one great one.

But as others have said, the main problem with the US system is that the working poor 'fall through the cracks'. Too 'rich' for Medicaid, too poor for good insurance. This is what the ACA 'fixed'. My son benefited from it, my cousin still does. The ACA wasn't perfect, but it increased access to quality healthcare for millions.

I think a great many people are not only divorced from death but from reality these days.
Online algorithms reinforce their beliefs. Populism rejects 'experts'. Emotionalism and fake news, even lies, are common currency reinforced by MSM and others for their own nefarious ends.
I do think what was happened in this very sad case is symptomatic of the times just as Trump and Brexit are.
But yes it is putting many, many people such as the doctors at GOSH in extremely difficulty, and even unprecedented, situations and they have to learn new ways, new language, new perspective to deal with situations where the old ways are no longer effectual.
Still trying to sort out all this in my head but hopefully it makes a little bit of sense.

This is such an emotive situation, fuelled by so much (cynical?) media publication that to have an opinion contra to the media in general is becoming almost impossible.

How incredibly painful it is to have to watch a child fail to thrive and then die is without question.
Many parents experience this, yet accept the inevitable, and in doing so, go through a healthy grieving process of all that ensues: the death of a child goes against all that is in the natural order.

This situation is not that. In any way.

but then I read on MN about 'post code lotteries' or long delays in obtaining needed appointments (mostly for specialists) due to backlogs which makes me happy that I can pick up a phone and call any doctor in the book until I find one with an opening.

There's a zip code lottery in the US too with some states having much better choices and options and quality of healthcare than others

I think there's a misunderstanding in the US about how the NHS works, like we have to take what we're given, we don't. I changed my NHS consultant with 1 phonecall.

@JaneEyre70 there was a law/judge type on Radio 5 who said he felt the legal case had actually been concluded unusually quickly. I agree even quicker would have been better. The dragging it out stuff with appeals and trips back to court felt like it far too long for Charlie.

GOSH are the best at what they do. But professionalism aside- this case will only damage future cases. Awful outcome, lose lose.

The NHS can be surprisingly agile. When I asked, my GP referred me straight to a world class London clinic for my (unpleasant but non life threatening) condition; I was seen within 6 weeks and treated (day surgery) within 12 weeks. Had scans locally and took results to appointment.
It helped that I was well informed and had a GP who was willing to listen, though.

I think there's good planning when it comes to ventilating and you'd usually know in advance who is or isn't suitable for being ventilated. And everyone would be on the same page following meetings and discussions. But in some cases especially where the outcome isn't clear you might not have a great deal of time and have to ventilate. Perhaps in Charlie's case they didn't have time to discuss it much when he deteriorated or it wasn't clear how catastrophic his diagnosis was. Or his parents might have insisted pending the search for treatment.

I do think increasingly patients and HCp will refer to sm and the Internet for help / knowledge.
It does have benefits.

In the last week I have pointed out that my consultant is giving advice contrary to nice guidelines (now being reviewed as part if hospital policy)
And used nice guidelines to give weight for a friends referral for tests.

As people say these cases do happen from time to time - I remember those cases over can a parent decide if a Jehovah's Witness child can have a blood transfusion (not if the child is little, but if they are a teenager who have formed their own view then the teenager can refuse one even if they die - all seems about right to me there as to where we draw the lines). We all read about the parents who support chemo but not radiotherapy - they moved to Spain and their boy is doing fine after different treatment.

The issues of where parental consent is enough are never easy. I would tend to come down on the side of the parents having quite a bit of leaway and say as it is their child but not if the child is suffering very badly or its life will stop (once it is born - abortion is a whole other topic but in the same range of issues). However where parents expect the state to pay for treatment then they can't be wasting NHS resources and wanting a right of choice of any doctor across the UK and other things like that.

The NHS are quite good in letting you change specialists or getting the first to refer you to one who has a treatment you particularly want but there will always be differences around the UK.

Doctors have always had to make judgment calls in unclear cases. They do it all the time. My father was doing it as a doctor just after the NHS was set up - when is it worth continuing life. These are not wicked never happening choices. They are something that has to take place every single day of the year in every hospital. Medicine is an imprecise science. It is one reason it is worth having a living will saying what your choices might be if you end up unable to express them.

"It's quite upsetting to know that the Ethics Committee at GOSH met to discuss Charlie having a tracheostomy in November and it was decided No, as his quality of life was so poor." That in fact hugely comforts me that the NHS is really good, rather than makes me upset.

Been reading threads on and off heartbreaking for all involved - read this article this morning hope I am allowed to share it - I don't read tweets and was shocked at some of the emotive screen shots.

reaction.life/charlie-gard-facts/

The bbc has reported today a medical ethics professor from Oxford talking about the Drs making value judgements on the quality of life.
Interesting.
I've just had to have further major surgery as a dr made a value judgement on my quality if life earlier this year.