Charlie Gard 10

[user1498911470]

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"

Starting now as 9 will fill up quickly.

I know I mentioned this on a previous thread, but it is wrong to draw conclusions about how a patient will react to a treatment when you only have results from 10 patients - that would be the case if it was the same disease, but this is a different one (different mutation, different organs affected).

In my smallest ever study - a feasibility study to see if it was worth going on to apply for money for a bigger one - we had results from 50 patients. That was the smallest number we could get away with recruiting that would give our results statistical significance.

At a very simplistic level -

In this study one patient in 10 came off the ventilator so 10% success rate is being quoted.

For that 10% to be a significant result you would need 500-1000 patients recruited and then you would have 50-1000 patients coming off the ventilator.

Outcome is also an issue. In research we have a primary outcome (e.g. In this study it seems that was patients needing LESS time on a ventilator). There are also always secondary outcomes such as eg improvement in reflexes, increased responsiveness.

So you could be in a position where your patient is the lucky one who can spend less time on the ventilator. But that doesn't mean your patient is responsive or that their reflexes have improved - because you are only reporting the primary outcome.

Finally, before I shut up (promise) there is an issue around sustainability of the improvement seen in the patient. As this seems to be a fairly recent set of reports, I would hazard a guess that there has not yet been a long period of follow up. These are changes that you need to be sustainable throughout the lifespan of the patient - it is entirely possible that a new medication can bring a sudden and dramatic improvement, but it can't be sustained, or may lead to added unforeseen complications.

For people interested in this (and I admit it is a fascinating area) look up adverse events and suspected, unexpected serious adverse reactions (SUSAR). Everyone at GOSH will know these because they will all be GCP trained and they will all know about Northwick Park.

Oh my, so now they are trying to get rid of the gaurdian.

*I keep seeing questions on Children's guardians and why Charlie has one.

So as a former social worker I thought I would try to give some general info:

Firstly, practically EVERY case in court involving children (and some cases concerning vulnerable adults) is appointed a guardian. Even in custody battles and divorce cases. The guardian being appointed has nothing to do with parental responsibility. They are appointed by the court as an impartial third party to argue the voice of the child but NOT the parents (and in this case NOT GOSH)

They are to interview everyone involved and form an Independent assessment which they then present to court via their barrister. They work for CAFCASS (children and family court advisory and support service) and are experienced social workers. You can look them up if you want more info.

The fact Charlie has a guardian isn't on its own, a bad thing, it's actually perfectly standard procedure. What is a bad is if the guardian is unhelpful, obstructive and entirely biased and non supportive of the parents! It seems the guardian appointed in Charlie's case is exactly that!

Hope this helps explain it.*

They do have end of life care in the USA...

It's more Judaism in my experience that says treat everything as aggressively as possible while life endures. Look at what happened to Ariel Sharon. What Catholicism and AFAIK evangelical Christianity/pro life Christians is absolutely against is the removal of artificial nutrition and hydration, as in the Terri Schiavo and Tony Blandford cases. Turning off life support is not so contentious as far as I know, hence the Pope's tweets which were in fact quite subtle.

ArgyMargy - shit, you're right.

Yeah, a LONG time ago. Sorry. Ignore me.

Zeezeek I would appreciate more info please. Your posts are brilliant! I learn so much!

Zeezeek I would appreciate more info please. Your posts are brilliant! I learn so much!

ZeeZeek finding your posts so useful to better understand this, thank you.

Zeezeek how can we ignore that we are intrigued!

Don't you just hate it when people think aloud and then don't tell you what its about?

Trailed back to see what I missed. Thought zeezeek had great reveal or something just for a bit of excitement (sigh).

Hello, everyone. I, like many others, have been following from early on (thread 3) and would like to thank all of you for such an interesting read! This case has numerous layers and points of debate. I'm a mom, in the medical field, a psych major and an American. I have enjoyed following such an intelligent thread and you have given me many points to consider. As you have stated, Jus, this thread has highlighted so many of the differences between British and American law and has given me a deeper understanding of the case. I couldn't agree more with the collective view on here of this sad and tragic case. My heart breaks for all involved. I must say, that I am also amazed at the CA mentality. It does make for an interesting study.

@Zeezeek don't shut up please! Your posts are very informative and make the scientific data easier to understand even for me

muckypup. You have no evidence to say that the guardian is unhelpful in this case and they do, of course, have a barrister advocating for their position. The Guardian represents Charlie. NOT the parents. The parents have a separate barrister. After being involved for many months, the Guardian agreed with GOSH. Every Court in the land and the EU court has agreed with GOSH. Therefore there is no justification whatsoever so say the Guardian is obstructive. They agree with GOSH and not the parents. As the court representatives of Charlie, stating what they believe is in the best interests of Charlie is their duty and their right. They must advocate for Charlie and what they believe to be best for him.

Looks like the Family might be briefing against Butler Cole
www.telegraph.co.uk/news/2017/07/16/charlie-gards-parents-angry-babys-lawyeris-head-charity-backs/?WT.mc_id=tmgliveapp_androidshare_null

Please carry on informing us zeezeek. Poor Charlie's case raises so many difficult questions, and the technical aspects (e.g. how trials are conducted) is a very important one.

Bubbles I think you have misread muckypuppy, she is saying CA don't approve of the guardian

BubblesBuddy - I think muckypup is quoting what's been written elsewhere, possibly on the CA facebook page.

Yes. That's been around for a while. It makes no difference to anything. Barristers take on a while raft of cases and work. It does not make a jot of difference to her advocating for the Guardian. The family didn't appoint her so it's none of their business.

Onepartcranberry, interesting study for the pych wards????? lmao

BubblesBuddy, sorry it was taken from Charlies army, must have had a space inbetween the asterisk so it diddnt come out in bold,sorry.

So the next thing is they're going to play his fight song outside Court..whatever song that is. Sure that will go down well.

Katie Gollop QC (counsel for GOSH) has been exchanging tweets with a woman called Helen who has been in a similar situation as Connie Yates and Chris Gard. Her daughter, Rumer, was expected to die before or at birth, but instead lived a few months because her parents insisted upon active treatment, rather than palliative care.

Helen, and her partner, Chris, have been writing a blog about their daughter's life, Rumer's Rainbow and have been tweeting on the Charlie Gard case from a position sympathetic to C&C, but in a much more readable and cogent way than CA does.

I've only read two posts, but I found them insightful and thought-provoking.

The first (which KGQC highlighted on Twitter) called "The Myth of Irrational Parents" was written in response to Zoe Williams' article in the Guardian last week, on which posters in earlier threads had commented.

The second, "On Winning", addresses the strained relationship that can emerge between doctors and parents of a very ill baby when there remain profound disagreements about medical choices and appropriate treatment goals.

www.rumersrainbow.co.uk/2017/07/myth-of-irrational-parent.html

www.rumersrainbow.co.uk/2016/06/on-winning.html#more.

I don't Sos, sorry. However, if anyone is interested in GCP guidelines that we have to work with see this https://www.ich.org/fileadmin/PublicWebbSite/ICHProducts/Guidelines/Efficacy/E6/E66R1_Guideline.pdf

Northwick Park was the phase I trial that went wrong - wasn't that the one that the programme a PP mentioned? The lesson of that trial is seered into the brain of everyone involved in clinical research, especially when they are testing a CTIMP - clinical trial investigative medical product.

It is a sad fact that we often learn more from our mistakes than our successes in research. Northwick Park is one, thalidomide another.

Often with drugs there are some reactions or side effects that we expect to see, however, sometimes we see an unexpected reaction and this can potentially be life threatening. The question is always whether the drug caused this reaction.

The drug cocktail that is being proposed for Charlie isn't a new drug, so not a CTIMP, and it is already being used on patients and one side effect has been identified - diarrhoea. However, what we can't say and don't know is whether it could potentially cause different, possibly more severe or traumatic side effects in a different cohort of patients. It is unlikely, but our experiences when it goes wrong tells us that sometimes the unlikely happens.

That is why we have rigorous testing for drug safety.

I worry that this is all being rushed and done in a slap dash manner and that the parents are unable to give informed consent for their child because they have become blinkered and won't hear anything negative.

Meanwhile over on CA -

More "look at the monument lit up all blue for Charlie" posts. I know there have been some UK monuments lit for their cause, but yet again, this is an easily google-able stock photo from 2015 when many world monuments were lit blue for autism awareness.

This post has over 200 likes. Is it a troll making these up? Are they having a laugh or are they that deluded that they think this is real? Laura Gard re-posted a similar image of Christ the Redeemer (in Rio) last week. It's the same type of stock photo linked to the 2015 autism event. I find this to be worrisome - if they believe these monuments really are being lit up for their cause then there is no reason for them to question anything at all.

The family don't accept that Charlie needs a guardian because they think they should be representing him in court. Basically they think they own Charlie and should have the right to do what they like with him.

They just don't understand that in law, their child has rights of his own separate from them, which is why he needs a guardian and his own barrister to represent him.