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AIBU?

Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

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"

OP posts:
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SerfTerf · 16/07/2017 00:15

Was it Any Answers @BoreOfWhabylon ?

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Ceto · 16/07/2017 00:16

It seems only too clear that Laura Gard is enjoying what she does.

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BoreOfWhabylon · 16/07/2017 00:36

Yes Serf it was the last call.

You're right , affection it does indeed sum up GOSH's position.

I keep thinking about the call, just can't get that poor woman out of my head.

Someone has posted a transcript on the new thread.

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redshoeblueshoe · 16/07/2017 01:02

yikes is there a new thread, please can some one link x

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Jux · 16/07/2017 01:08

mucky I wouldn't put anything past that fright of a woman. That'll probably get me deleted. Sorry to bring down the tone.

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NellieBuff · 16/07/2017 07:20

I don't think any parent of any sick child owes any hospital or staff member gratitude. Staff are doing their jobs, no doubt very well and are paid for that.

Sorry - I know the post has moved on but Anne do you actually believe that. I am not picking a fight but I am curious as to why you would think thank.

My DH regularly gives up his weekend (as mentioned on other threads on other topics) to go in and take the pressure of his colleagues and this allows patients to be treated and sent home quicker. It allows means that some patients can have their unplanned surgery over the weekend and they do not have to wait until the "regular" weekday slots.

He is not a saint by any means and is not the only one (I am just using him as an example as I know him and on occasions love him Smile) but I would hate to think that his patients think like you do.

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AnneofGreenGablesAgain · 16/07/2017 07:39

Nellie, your dh sounds lovely and like he is doing an amazing job.

I have given gifts to hospital staff myself to thank them for everything they have done. I have been hugely grateful for the kindness and expertise of hospital staff.

But yes I really do think it. It is a job. Parents of very ill children are under no obligation to say thank you and buy gifts, or to be grateful. We shouldn't demand that of them. Especially where there is a genuine difference of opinion about care pathways.

We should remain polite and civil in all our dealings with medical staff of course, particularly where we don't agree with what they do. But gratitude is not essential.

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CaveMum · 16/07/2017 07:58
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PanickedMum · 16/07/2017 08:02

My DD is currently in a wonderful hospital awaiting serious brain surgery either today or tomorrow. I was shocked to discover that it is now routine to do this type of surgery 7 days a week.

I am grateful every minute of every day to the people who are there looking after her. I'm grateful and thankful that they care for her, that the took the time to become knowledgeable enough to do so, that they keep learning and advancing their techniques so that they can save her life, again. There are no words to describe how grateful I am.

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CaveMum · 16/07/2017 08:03
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CaveMum · 16/07/2017 08:03
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CaveMum · 16/07/2017 08:03
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CaveMum · 16/07/2017 08:04
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CaveMum · 16/07/2017 08:04
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AnneofGreenGablesAgain · 16/07/2017 08:12

This interesting post looks at medics' own views on expecting gratitude from patients:

wwwf.imperial.ac.uk/blog/giskinday/2016/07/09/doctors-views-on-gratitude/

As I understand it there was discomfort about the idea of a moral obligation on patients to feel gratitude and agreement that patients needn't feel gratitude to individual hcp. The consensus was that we should all feel grateful to have the NHS.

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rabbitnothare · 16/07/2017 08:17

AnneofGreenGablesAgain that was a very short, sweet and not particularly informative piece of opinion.

I don't think anyone has said it should be 'demanded' of patients, it was contradicting your statement that no one should feel grateful.

See how things get twisted? I often think that the sort of person who doesn't think that they should ever thank HCP is the type to shout that their taxes pay the wages.

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sashh · 16/07/2017 08:23

. Sostonueto wrote that it is Charlie's mitochondria that are at fault. As I understand it, this is not so. There is nothing wrong with his mitochondria but they can't work properly because they need a specific enzyme in order to function. The RRM2B gene codes for the production of this enzyme. Charlie has a mutation of the RRM2B gene. He has inherited the mutation from both his parents, if just one parent carried the mutated gene then Charlie would not have the disease.

I was going to start an explanation about this, but I couldn't make it clear so I took to youtube.

Links to a couple of youtube videos - the first one I show to students as an easy reminder of what is inside the cell.

The second one explains the function of the mitochondria - it's a bit more scientific so (in the least patronising way possible) if you don't understand the terms then when you see the pictures a 'chain' of blobs, each differently coloured 'blob' is a different substance and if it wasn't there the 'chain' would not exist and therefore the function performed by it would not exist.

The third one is beautiful, it has no explanations but you can see how much is going on in a single mitochondrion.





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CaveMum · 16/07/2017 08:55
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CaveMum · 16/07/2017 08:55
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CaveMum · 16/07/2017 08:55
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CaveMum · 16/07/2017 08:55
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