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Original poster

Charlie Gard 14

999 replies

GabsAlot · 22/07/2017 20:49

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

OP posts:
Thread gallery
7
11122aa · 23/07/2017 19:38

i throught MNHQ said no screenshots.

Sostenueto · 23/07/2017 19:40

Right off for a bit to charge phone and have 40 winks. See you all later. Be good, and if you can't be good, be careful! Remember we don't want to be deleted!

LogicalPsycho · 23/07/2017 19:42

Fancythat69 and 11122aa I haven't commented since I think Thread 9, I wasn't aware of that.
Will request MNHQ delete my post.

It wasn't sent to me, it's on a thread within GOSH's Facebook page at the moment. Apologies.

RitaMills · 23/07/2017 19:44

Surely screenshots are fine? As long as they don't contain any judgement of the parents. It seem to just be any posts with a hint of judgement that are being deleted.

MrGrumpy01 · 23/07/2017 19:45

MN often/has always taken a dim view of screen shoting from FB. I know on another long running topic on MN screenshots were totally forbidden despite being on public FB pages. Just best not to do it if we want threads to continue.

Shamoo · 23/07/2017 19:48

This reply has been deleted

Message withdrawn at poster's request.

Panda81 · 23/07/2017 19:49

Can anyone help me understand why patient confidentiality still has to be upheld once there is a court case? Surely once it reaches court then it's imperative all relevant information is able to be provided on both sides, not just what the parents agree to.

For example, I've seen posts the past two weeks where it's become apparent C&C have refused MRIs and EEGs the last few months, but as this was never explained by GOSH (due to confidentiality) it makes it look like GOSH can't provide the evidence, but of course GOSH can't say why? I know they have been ordered to the scans in the past week and we will hear more in the coming days but that is one example where patient confidentiality appears to have hindered the entire case, which is pretty critical when the debate is largely about how much brain damage Charlie may have.

Hope that makes sense. I just wonder what else GOSH may not be able to include that is relevant to the case, due to patient confidentiality.

NellieBuff · 23/07/2017 19:49

Hello folks I am back. I have been following the thread and many thanks for those you have posted some really interesting thoughts, links and articles.

I would hate for this thread to be deleted and I think that MNHQ are having a really tough time moderating this thread. I get the impression that posts are also being reported as breaking the guidelines and they are struggling to keep up.

So fair play to MNHQ - I send Flowers to MNHQ for actually doing a cracking job and to everyone else on here Flowers and Cake and Wine

Writerwannabe83 · 23/07/2017 19:58

I've just seen a post on the CA FB page requesting supporters to attend Court tomorrow as it's the last chance they have to "influence the Judge".

I know some members genuinely believe they can have an impact on Charlie's fate and that their belief comes from a good place but I really think they should allow C&C some privacy tomorrow and Tuesday.

If the ruling doesn't go in favour of C&C I doubt they will want to walk out of Court and be faced with an Army, balloons and banners Sad

(are we allowed to talk about CA posts as long as we don't screenshot?)

MontyPythonsFlyingFuck · 23/07/2017 19:58

Seems to me that the main thing is not to post anything which is harsh or hurtful about Charlie's parents. As the OP for the last few threads says, at the heart of this is a very sick baby and his desperate parents. I feel that by using social media very successfully to raise money and awareness, they have unleashed all sorts of things that they can't control, may not be aware of, and under normal circumstances would certainly not want.

Original poster
GabsAlot · 23/07/2017 20:03

i think th ss was fine it just showed aproof of somthing somone asked about earlier

all the relevant names were blanked out

OP posts:
Writerwannabe83 · 23/07/2017 20:08

Seems to me that the main thing is not to post anything which is harsh or hurtful about Charlie's parents.

I don't think anyone has done on this thread (though I admittedly have seen it on previous threads) and mainly I think we've all said how much we sympathise with them. I think things have gotten so out of hand for them that they don't know what to say or do anymore and can't be blamed for any of their behaviours that perhaps we struggle to understand. They're parents who are about to lose their son in the most upsetting of circumstances so I think they can be excused for any seemingly irrational behaviours. People may not agree with how they are behaving but I think we can all understand why they're doing it. If it was me in their position I can't imagine what I would do or how I would behave in order to try and save my son's life Sad

What they're going through is dreadful and as a group I think we all feel genuine sympathy for them for a variety of reasons.

Part of me really hopes there is some evidence that would show attempting treatment is worthwhile because I can't bring myself to think about how C&C will be feeling if they are told L.S will be withdrawn. It's too upsetting to contemplate what a truly awful outcome that will be for them even if it's deemed to be the right one for Charlie. My heart really does go out to them Flowers

StiffyByng · 23/07/2017 20:10

I'm glad someone has picked up on the existing relationships between the doctors involved. Hirano is one of a smallish group of specialists worldwide. He worked on the issue of three parent families, which was a big bit of work by Doug Turnbull (head UK mito honcho) in Newcastle. He will absolutely already know the metabolic doctors involved already although less so the other specialists. I would imagine their meeting last week was not confrontational at all. They are professionals on an equal footing.

I can't imagine how stressful and miserable this must be for the medical staff and other parents. It's unthinkable.

I remain as concerned for the welfare of Charlie's parents as ever. This whole episode has been such a chilling insight into the harnessing (or not) of social media, and the manipulation of what we like to think of as reliable news sources, and they are caught at the centre of it at an incredibly vulnerable time. Our family would not have coped without trust in the medical professionals because they were the real only source of understanding. However unfair and horrible it all was, they held our hands through it. Being adrift from that would have been so difficult.

TheWeeWitch · 23/07/2017 20:14

Story here from The Guardian, posted this evening -

amp.theguardian.com/uk-news/2017/jul/23/charlie-gards-parents-condemn-abuse-hospital-staff-legal-case

NorthernLurker · 23/07/2017 20:18

I think there needs to be some ownership of the consequences of actions on all sides.

friendlysnakehere · 23/07/2017 20:23

I have been pondering tonight about to what extent we excuse parental behaviour in very stressful situations and also to what extent when parents think that they are doing the best for their child.

Writerwannabe83 · 23/07/2017 20:30

Maybe I'm too forgiving after 13 years of being a Children's Nurse and working alongside many families whose child has either died or we've had to tell them their child can't be saved. I've been involved in some absolutely heart breaking and tragic circumstances and deaths and I find it very, very hard to judge parents and family members on how they react to the situation. There surely can't be anything worse than losing your child and as a rule we make allowances for most things the families say or do that others may view as unacceptable.

I think as part of our profession we accept that grief, anger and fear will make people sometimes behave irrationally, especially when it comes to families being scared for their children.

reallyanotherone · 23/07/2017 20:31

Yes. Gosh have been called liars and murderers. Accused of conspiracy to kill. "Putting down" children. Driven by CA.

People are worried now about seeking treatment at a world class childrens hospital. How many children may die or be affected by hesitation to accept a referal there, or insist on another hospital with less expertise. I've seen posts advising parents to not only turn down GOSH referrals that they've been waiting years for, but to think about refusing nhs care altogether.

There should be penalties for such behaviour. Slander, libel etc. If it were a business it would have had the case in court months ago.

friendlysnakehere · 23/07/2017 20:33

I suppose I have been upset by some of the parents of patients currently at GOSH who have posted on the hospital FB page, some of them seem very distressed about it all and it has impacted them.

Mommytomylittlestars · 23/07/2017 20:33

@Panda81

Can anyone help me understand why patient confidentiality still has to be upheld once there is a court case? Surely once it reaches court then it's imperative all relevant information is able to be provided on both sides, not just what the parents agree to.

GMC sets out very specific guidance about upholding patient confidentiality and all clincians & institutions are bound by these rules. As such this is done to protect the right of the patients - when you go to a doctor or a nurse you often give very personal & sensitive information you may not want anyone to know & you expect them to keep it confidential - it helps maintain trust in profession.
There are certain very specific situations when this can be broken- an example would be if a Doctor finds a minor 14 yr old girl who is pregnant & tells you the father is her 40 year old uncle - in this case you can break the confidentiality to involve social services/ police if required. However if say a 16 year old is pregnant with her 16 yr old boyfriend and she doesn't want the doctor to tell her Mum , then her wish will have to be upheld if she seems competent.
When patients go slagging GP's , hospital's to media and the doctor's version is different they are not allowed to reciprocate with full details as this is not fully professional.
Ofcourse in Charlie's case , like in a court hearing the hospital can release all records as requested to their lawyers/ to the judge (only as much as data as necessary & relevant to the case) but they are not allowed to reciprocate & react to every media statement the patient/parents make. Hence GOSH have been very careful and have released the information only which was already in the public domain due to court case- I wonder wether at some point C&C were asked if they wanted reporting restrictions and they probably declined it as they have always been very public about their fight.
The topic of scans came up in the recent hearing as the parents disputed the head size measurement- the scans had no clincal or diagnostic value to help Charlie but sounds like GOSH offered it to aid decision making. I have no idea why parents declined the offer before- but my guess is they were probably worried it might undermine their case.

BubblesBuddy · 23/07/2017 20:35

I think it is interesting that C and C could not let the comment from GOSH go without saying "what about us?". Every single thing GOSH says or does is criticised by them or by those representing them. I think it's a shame they just cannot let anything go. It does show the depth of the rift. I think most commentators have been extremely caring and supportive of C and C. It was their decision to go to social media and, as we all know, that unleashes every demon out there. I feel the staff at GOSH did not do that and they need protecting from something they have no control over and did not participate in. The father has stoked comments about GOSH staff and clearly thinks they are untruthful and evil. I support the efforts of GOSH to support their staff in this situation and the other parents in the hospital.

BubblesBuddy · 23/07/2017 20:37

The judge ordered the scans and the length of time they would be done. C and C agreed to 30 mins but it was fine over a much longer period then that to get more detailed results. These were referred to in court on Friday.

BubblesBuddy · 23/07/2017 20:38

done over a much longer period....

NellieBuff · 23/07/2017 20:38

friendlysnakehere - I have been wondering this to. I do wonder if it depends on the support system you have and perhaps previous experiences and the actual personalities of folk. Anyone put under enough stress will begin to act in ways that they wouldn't normally so maybe this is when you need a separate support system in place.

I have often thought it is a pity that Charlie's parents did not take up the offer of counselling but perhaps they may accept it now. They may find it helpful in coping with an extremely stressful and heart breaking situation.