Charlie Gard 9

[muckypup73]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

I wonder the oppose writer - that he won't want to take on a high-profile, "hopeless" case, in case it goes badly& will affect his credibility & possibly funding.

I am confident the expert Doctors will reach a sensible conclusion, based on all the available evidence.

I will be honest and say I feel conflicted about all of this. If the treatment is beneficial for Charlie then yes I think he should receive it and I fully support the parents right to take this back to court.
I do wonder how the relationship between the parents and GOSH disintegrated to such a level, that they believe GOSH could interfere with the American expert. This sits uneasy with me. They seem absolutely convinced that that is a possibility.
I suppose despair could drive us all to this point. But I do find myself wondering what the truth is.
On the other hand the statement from GOSH is very clear and indeed moving, it clearly states they believe that poor Charlie is beyond help now. GOSH help so many very ill children that I find it absurd they are being accused of willfully obstructing this child's recovery.
Told you I was conflicted.

Do any of .ca understand that the 'American Dr' can't just pop over here, examine Charlie and prescribe the 'oral medicine'. (In the fevered imaginations of ca this would probably be via a bottle, or possibly a tippee cup).

There is the whole ethical issue of using an unlicensed medicine. And, no, .ca, it can't be rushed through. It doesn't work like that.

@GabsAlot she didn't come back lol. Someone asked where they could find all the notes from the court so I gave them to link to the tweets, at least someone wants to inform themselves without just jumping in & calling hospital doctors murderers

Gabs that was exactly my worry as well, in sure I read only 16 people have ever been identified with this particular type of mitochondrial disease; it would be unlikely to have another patient with the same type willing to take part in a trial I imagine.

11122aa painter and decorator. Sorry - nothing wrong with that as an occupation - but I laughed out loud - just sums up how completely unqualified people think they know whats best for charlie.

A side issue in the grand scheme of things but I think I'd be pissed off, as one of those GOSH doctors for everyone to be clamouring for an "expert" from the US to come over to tell me how to do my job. Is GOSH not crammed full of experts already, ffs? You know, what with being one of the leading children's hospitals in the world?

I do wonder how the relationship between the parents and GOSH disintegrated to such a level, that they believe GOSH could interfere with the American expert. This sits uneasy with me. They seem absolutely convinced that that is a possibility

Believe me - it is very, very easy for parents to turn against the medical team and for relationships to break down. Speaking from experience parents will turn on the nurses/doctors as soon as something is said that they either don't agree with or they don't want to hear. It happens all the time. Working in paediatrics is like walking on eggshells sometimes because you know that all it takes is one wrong word and what was once a really good relationship with the family can change in a second. Once parents feel you are no longer their ally the shutters go down and their trust in you has gone. I've heard parents accuse nurses and doctors of all sorts (including lying and fabricating medical results etc), it goes on all the time, especially with long term patients.

I can easily see how things have gotten so bad between the parents and GOSH - I see it all the time at work and that's over things far less significant than what C&C are having to deal with.

I'm genuinely surprised at all the posts to the effect that "the judge is making sure no more cases can be brought". I'd love to be wrong, but am really struggling to believe this

Surely one problem with making endless concessions to parents in C&C's tragic circumstances is that they can begin to be seen as a right ... in other words "they did it before so why not now - and this time we really have got new evidence"?

It couldn't be clearer that the poor parents are never going to agree to the removal of Charlie's life support; four court judgements and ceaseless professional advice has made no difference at all and it's hard to believe that anything ever will

If this is so, and if it's true that they'd have no case to bring if GOSH simply went ahead with the removal, is there really any point in dragging things out? Wouldn't it be better to put Charlie first and action the multiple court decisions without further delay?

I have not commented before, but have been reading all along and following on Twitter.

With the MRI... given that Charlie would have to be manually ventilated during the procedure and relations with the medical teams are so strained, it might be that the parents are fearful that if he is removed from the ventilator for the procedure he may never be put back on it again? Or they genuinely do not see the need for a potentially difficult procedure when the simpler tape measure option (that HVs do after all use, so is therefore a recognised technique) is available. Perhaps they do not appreciate the difference.

I think the MDT meeting on Mon will be extremely hard for all involved. If the American expert on reviewing Charlie and all the records/data in person concludes that treatment is futile, I am afraid it seems most likely to me that the family will see this as him being corrupted in some way by GOSH -even, and perhaps especially if the mother finds the discussions in the meeting traumatic.

Quite understandably given all that has happened, their way of thinking is not the same as the majority on this thread. So how they react may be less predictable. Just look at how CA are interpreting everything quite differently than most here. The two groups are looking at all issue through very different lenses. The main point in common, is that all feel they have Charlie's best interests at heart.

I remain concerned as to how on earth the child could have a dignified and 'good' death if the ultimate conclusion is for treatment to be withdrawn. I also fear for how the parents will bear all that they will have to no matter what the outcome.

Agreed wannabe. Sometimes parents are just angry and frustrated and they lash out because you're not giving them the answers they want to hear. A lot of people have very black and white thinking, but medicine isn't black and white.

Writerwannabe83 I find your posts very helpful and insightful as to the dynamics between patients and medical staff, thank you. You seem to have the capacity to present and understand both sides (I know you're a medic).

thanks to everyone who posted from the twitter feeds yesterday. I m finding the media reports so one sided I've stopped reading them.

I've never been near GOSH.
Neither of my kids has ever broken a bone that needed plaster.
So why do I read these threads ?

Because I've learned a LOT
both about medical ethics and dilemmas
about the problems other parents face and how they cope with having to use GOSH and its ilk
and because the ethics of "end of life care" are incredibly important in a world where medicine can but maybe should not

And I shall keep hitting the "report" button on CA for ten minutes a day until FB start monitoring it themselves.

I think that's where the Gards have been let down by their legal advice. Their refusal to 'allow' a scan/EEG will have an impact on anything this dr is able to recommend.

But we don't know that this is on legal advice, do we? I strongly suspect it's the other way round.

Might take some time to be allowed to practice here:

To apply for a post in the UK, you will need to have at least two years’ experience post-qualification , a detailed CV, full registration and a licence to practice with the UK’s medical authorities – the GMC. If you don’t already hold GMC registration and a licence to practice then please have a look at this website for more information: www.gmc-uk.org. There is a section under “Registration and Licensing”. Then click on the“Before you apply” section listed in the left hand column. This gives detailed information on the clinical and language requirements needed. Unfortunately, we can only put you forward once you’ve completed your registration.

When you have made your online application, we will email you a list of documents that you need to send to us. The list will say what specific documents we need based on the information you gave us in your application. And we will also need translations of all documents that are not in English.

You will need to get some documents from authorities in the country where you graduated, and some documents from authorities in the country where you currently work. We know this can take a long time, so we suggest that you ask for these from the relevant authorities as soon as possible. We will keep your application open for 90 days from the date you apply. If you do not complete it within 90 days, we will close it and let you know.

You can find information in our applying for registration section.

He won't be applying for a post in the UK though, will he?

Is there no time sensitive mechanism to allow a well respected medic from abroad to come over and short-term participate in the care of a patient in which s/he has particular expertise ?

I have 5 messages from Facebook saying that the posts I reported do not breach their community standards.
Well they clearly are in breach of the law. That was made abundantly clear at the hearing on Thursday.
So when is Mark Zuckerberg going to ensure his social media empire abides by the law?

"since November when they first blocked him from having treatment "

skint can you point me to a link where this information comes from because it's not aligned with the facts given in court.

The court information states quite clearly that Charlie's diagnosis wasn't even confirmed until mid-November. It also states that it was 'late December' the first time the US doctor was contacted.

The treatment was authorised on 9th January. But before it could begin, Charlie started to have seizures. On the 13th January consultants informed Charlie's parents that he had sever epileptic encephalopothy . That is when they were informed that the treatment would be 'futile'.

If the court information is incorrect, please link to correct information, I'm sure that many of us would be interested to read it.

Link to judgment. Scroll down for 'Full Judgment'.
Pertinent points are 57, 75, 79, 82, 83.

www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

HV may use a tape measure to measure heads in healthy, typically developing babies because it gives a rough guide that things are developing "normally" however it doesn't give an accurate measurement and certainly not in a case where there is obviously oedema.

I shouldn't imagine it is easy for their legal team Ceto
Did anyone have an answer as to why Chris Gard is not going to the medical meeting? Is it possible he just said he didn't want to be there?

Online my understanding is this will never be a short term treatment. For as long as he is alive he will need it won't he?

The guy from Columbia NY is coming over for a meeting to review a patient.
He'll be doing no more than he would at a professional conference.
If
and its a very big if
he thinks the treatment is worth doing, he'll hand the stuff to the GOSH doctors to try

there is zilch chance of him being flown to the US as he'd most likely die on the plane

lightlove
Did anyone have an answer as to why Chris Gard is not going to the medical meeting?
From what I picked up, the medics wanted neither - because both parents keep shouting out - but accepted Connie as she is calmer and more likely to obey the independent bod rather than be told to leave the room.