Charlie Gard 17 re started

[muckypup73]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

We have already in the past asked to get these threads moved to "In the news" from AIBU to help with the situation mentioned.

The great thing we have all learned on our journey on these threads is that love is not a possession. Just because you love someone it does not mean you possess that person. And when you class someone you love as your possession it leads to cases like this.

lovely I agree.

I disagree with the approach that being a parent puts anyone beyond criticism - but then I'm the mother of a child who had to be removed from her birth parents for child protection reasons and we live with the damage that's done her every day of our lives. Most of us are 'good enough' parents and can only benefit from support, but when anyone is significantly wrong to the extent they are hurting their child I think we should be allowed to express that.

However.

I think, having read the court tweets and GOSH statement etc the situation is that Charlie's on-going needs can only be met in PICU. No other PICU unit will take him (understandably). If he is moved the move will be handled by a specialist team who will remove the ventilator when they leave, and Charlie will die shortly after.

His parents' home is unsuitable - practically and probably for reasons of the safety of staff and Charlie in an unregulated environment.

There is a hospice willing to accept Charlie and support his family through that process. They cannot keep that offer open indefinitely as there are other children and families who need that support.

The other option would be to stay at GOSH.

C&C want to have 'days' with him wherever he is moved i.e. a PICU is set up especially for them to spend an unspecified number of days with him away from GOSH.

lovelybath Yes, The case has affected my dreams too, in not a good way.
Luckily hospices nowadays [here at least] try to support home nursing wherever possible.
Home care, if one has a good support nursing team network, is preferable to hospitals for many.

I think the NHS can be wonderful and supportive for so many, but on the subject of what to do when treatment is over, some people do find that there can be little ongoing support. I mean for conditions where they just can't do anymore. There was an interesting article on this in the Times a few months back, with a consultant commenting on how then patients do try and fundraise for treatment abroad- this was for cancer - and how it would be good if we could change things so patients, if they wanted, could use the finds to participate in research trials here, in the UK instead, to have that as an option. The other thing I found helpful was I did a care plan with GP and consultants to move forward, with things I could do at home and what to do in an emergency. Or advance directives, that kind of thing. It can really help to feel you have some control, if not of the illness but what happens in different situations. I am not criticising the NHS< they have limited funds and it can be very hard too for consultants to say 'There's no cure, no more we can do, sorry'.

Lovely In the news comes up on active, the other area of the site doesn't but I would not expect MN to tolerate this thread there.

I am disgusted at the Mail CG received, the sender should be prosecuted. I am slightly uncomfortable with the whole thing including senders details being published online. It's only whipping up CA with one person even suggesting the sender must be linked to GOSH.

I feel sad for the parents, I hope I'm never in their position but I do think that taking Charlie home is not in his best interests I do understand why the parents want to but I agree with the poster who said I think by getting him home this is just another way to get the ball further down the road.

Can't see how you could take a wall in a block of flats down. Honestly.

I think it's an excellent point well made that Charlie's parents have knkynjust started to come to terms with the fact that their little one is in the terminal stage now

The more I think about it, the hospital is the best place for everyone to be with an order clearly specifying when treatment is to be withdrawn and a detailed treatment plan appended with time table (not to be divulged to the public). Really, we need to get to a stage now where anyone interfacing with Charlie and his parents are able to state that they are following a court order now and this is mandated treatment in respect of every single aspect of his care

feeling
Yes the reason I posted was that most people cannot imagine hospital staff to be anything other than compassionate and caring. The picture in their heads is one of nurturing staff surrounding parents holding baby.
In our case that was not so and that's why I think a different place is best in this case.

Yes i see, but I think it got moved from AIBU as people occasionally popped up to say- yes, you are and have a go which derailed things, to prevent that you see.

sos I completely agree.

The original AIBU was not about the parents, I should mention, but that the 'supporters' and media were not being helpful to this case. I'm suprised it has gone into so many threads, however think overall it has been pretty measured and compassionate to the parents. But yesterday there was a bit of a reaction to the stuff about taking him home, which resulted in the thread being pulled.

I also think that there should be a change of HCPs too in terms of the final days. It makes no difference to Charlie as he is unaware but it could take some of the heat out of the situation

Risks of claims are much mitigated when medics are following a court mandated treatment plan. Whilst it would be very disruptive, I do think it would be in everyone's best interests if this could be facilitated for a few days

gobblin do you not think that it's best to go to another place for care, e.g. The hospice as the relationship has broken down with the hospital?
The tension that the parents feel will be tramsmitted to their baby especially if they are allowed to hold him , nor might there be a private area.

I agree goblin a change of staff would be beneficial.

From a JR tweet yesterday:
Gollop QC: it's unfair to say we have put obstacles in the way of the parents. Judge: I agree. GOSH doing everything it can.

twitter.com/JoshuaRozenberg/status/889886556336648192

Head sorry that you had a bad experience.
I think in this case, I can't see why GOSH would want to keep them there, they've asked other hospitals to take him and none will. They suggested hospice, parents agreed second best option, but then refusing as want days not hours.
I think the issue is that the parents cannot accept that they will not be able to spend longer than hours with him, outside of an ICU, and no one is able? Willing? To offer and ICU setting outside of GOSH, for a myriad of reasons.
I'm sure hospitals can/are obstructive to people, but I just can't see it being the case here, even the judge objected to the idea of GOSH obstructing, said they are doing all they can

X post Allington

I don't agree with Charlie going 'home', the logistics are too complex.

I think a hospice would be best but the parents cannot expect a week, or even days, with him. If it was possible, then 24 hours in the hospice before removing from vent would give the parents some time with Charlie away from GOSH.

Re the troll post...a comment on CA said that the account was faked.
Maybe the IP address can be traced though. Looks like a very angry trollpost..ghastly .Wish I'd not read it.

I still think we should be gentle in our criticism, its a terrible situation for the family and in their eyes they have not been able to do anything for their son since this all started - despite all their efforts with fundraising and the courts. So they want to i guess at least have some control over his last few hours / days. I think that is perfectly understandable.

so I fully agree with the policy of this forum - all those who think its censorship - this is their website we are merely guests.

I'm actually very annoyed about the stance MNHQ is taking by deleting the last thread. These have been interesting threads with expert contributions (and I include bereaved/PICU-graduate parents in that as experts).

MN is about supporting parents, but support comes in lots of forms. There are numerous threads where the poster is roundly attacked (not leaving a DV relationship - by leaving your kids in that situation, you're as bad as he is - that sort of thing) BUT as support to help the poster open her eyes and realise the potential harm she is doing to her kids.

Whilst I don't think for a moment the parents in this case come onto MN, why is it automatically being assumed we are being unsupportive of them if we are saying we think what they are doing is unhelpful/harmful/just plain wrong? Many, like me, are unsupportive of their behaviour, that doesn't mean we're unsupportive of the agony they are in - which is agony many of us have shared before.

Support comes in lots of different ways - sometimes saying give your fucking head a wobble is better 'support' to that poster (or to someone else in a similar position who might be reading).

I think it is a question of 'able' not 'willing'. There aren't ICU beds just lying empty. What the parents want could compromise the care and welfare of other patients and is neither realistic nor fair.