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"

But even they the gosh team would need to get ethical permission before starting?

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).

Thank you.

It's just so hard because we know that to give the best care we can we need to have good relationships with the parents and when it all breaks down it becomes very unpleasant and ultimately it is only the child who suffers in some way.

There's nothing worse than sitting in handover in the morning when the patients are being allocated and you are given the child with the 'difficult parents' - it makes you feel so disheartened so I can't even imagine how the PICU nurses feel as they walk into work each morning at the prospect of having to deal with C&C.

Usually though difficult parents will still have a favourite nurse (for whatever reason) and so where possible that specific nurse will be allocated to that child to try and keep things as harmonious as possible.

I suppose another grey area will be how long do you trial the treatment? Now I think I've read 3 months but exactly what measure of improvement will be needed to justify continuation? Is ANY improvement enough? Or just lack of deterioration? What if the parents disagree and wish to continue? What if GOSH and US doctor disagree with level of improvement?What if US Doctor wants to change regime? So many unknown variables and outcomes and potential problems if treatment does get approved, literally no black and white areas at all..

For as long as he is alive he will need it won't he?

True.

Scratch my previous post. Didn't think it through.

No but he will presumably need a licence to practice in the U.K.

I have tried doing it but I dont know how to take a screen shot, on Charlies army, there is a screen shot of cathrine glennfoster and she is sying somethings on the internet which is going big in 24 hours with a strange emjoi, they are all worried about this on Ca.

Sirzy - short answer is yes because it would come under medical research.

This 10% chance of improvement is measured by the amount of time the trial patients reliance on a ventilator to breathe. 1 was completely weaned off the ventilator and the other 4 used it less.
So basically he has a 10% chance of not needing a ventilator 24hours a day.

There's nothing worse than sitting in handover in the morning when the patients are being allocated and you are given the child with the 'difficult parents' - it makes you feel so disheartened so I can't even imagine how the PICU nurses feel as they walk into work each morning at the prospect of having to deal with C&C

This. Evey paeds nurse in the country knows this. The family you have to take it in turns to care for, the family you tread on eggshells around, the family you dread coming in. It wouldn't surprise me if they were this family. I really feel for the picu staff.

I guess I'm hoping this debate will contribute long-term to a better understanding between both sides. It seems obvious to me that C&C are deluded and have lost sight of the fact that people in medicine are basically loving human beings doing a phenomenally difficult job. I understand that it's their grief that has driven them mad, but it's being exacerbated and encouraged by so many elements, who won't know how to support them when Charlie dies (won't even want to, in many cases). It's so desperately sad. By the way, my own credentials are that I'm a retired psychotherapist, so the psychological angle I find deeply interesting - I don't mean that in a cold way, I mean it's only through complex understanding (not black and white, as you say) that we can see how to help people who are caught up in emotions that are destroying them.

Cathrine also teetwed Charlie missed his last shot 2 weeks ago, so does that mean the doc has been from America???

loris post and the one she has quoted has reassured me - we have had nurses requesting to be allocated to DS when he is in so obviously I am not too much of a pain in the arse!

Would Charlie need removed from the ventilator for an MRI?

Dd2 had some sort of brain scan in her incubator at a few days old, I think she was breathing herself by then but it's all so woolly it was such a scary time. Would that be a different sort of scan and would it not show brain growth anyway even if not the detai of structure of an MRI?

I remember looking at the copyright situation when putting photos online.
Any copyright is difficult to enforce because the internet is worldwide and laws differ in different countries.
FB is also worldwide but does seem to do some 'policing'.
I have heard of photos of naked children and breast feeding being removed. Possibly because they can be seen as 'indecent' which they may feel is something more likely to be persued than threats.
Not saying I am right. Just a thought.

mucky

Is it this tweet ?

Can I ask why we can be sure these parents are needlessly difficult?

As a parent of a child who has had ops and interventions it is my job to advocate for my child and that does not always mean agreeing with staff. I am always polite and constructive, but I don't think hcp always welcome alternative views.

Don't we need to respect parents' rights to take a different view from medical staff?

Especially as the US expert is quoting a 1/10 chance and saying Charlie may not be in terrible pain, iirc?

The vast majority of medical staff in every hospital in the U.K. are doing an amazing job, but mistakes do happen.

I'm on the CA page on facebook, I expect to be thrown off there any minute because I'm daring to contradict their skewed version of the truth

Sorry that is confusing.
Just using copyright as an example as to how laws can be difficult to enforce online.

Online, yes thanks thats the one, and shes gone back off to her own country saying she will return, its all very strange.

Who is Catherine Glenn foster?

Sirzy

A pro life lawyer from the states who has been involved with the parents.

Anne, what we need to remember is nobody has been able to quantify what this 10% chance is actually of. Certainly not of any significant improvement and sadly not the picture of a little boy cycle a bike which seems to be the target of some.

This isn't just the parents not agreeing with one doctor either, that would be understandable but this is the parents disagreeing with many medics from all the top hospitals in the country. They are clinging onto this one treatment which is basically turning him into a guinea pig which very little evidence to suggest it will improve his quality of life which has to be the key thing?

loris post and the one she has quoted has reassured me - we have had nurses requesting to be allocated to DS when he is in so obviously I am not too much of a pain in the arse!

We have our favourites too! Even though we're not supposed to.

Thanks online!

mucky

No idea what she is going to reveal, but I can immagine that choice of emoji did not fill CA with joy.

Which might be the point. The story she's referring to might not all that big a deal, but the tweet stirs up interest in reading it when it comes out.