Charlie Gard Case 5

[LovelyBath77]

A new thread to follow on from the others about this case.

smilingmind

I agree with the principle of financial support for parents but I'm cautious about starting up another campaign. Not saying we shouldn't but I know there are already a number of charities that have this within their remit. I think the real problem may be that parents don't know about them, aren't told (many are small and may be localised) and there may be particular criteria to meet (e.g. cancer). I also agree that there should be clarity and simplicity around benefits for people in these very sad situations. Perhaps PICUs/NICUs could have lay staff who specialise in this aspect and whose role is to proactively support parents who need it.

Absolutely it should be something provided by the benefits system, but sadly that looks unlikely under the curreny Government.

I suppose what you would do is start small, so just one or two hospitals. Ask the hospital to let parents know there is a fund available and details for them to get in touch.

I guess you then need to set a payment amount? Something like £20 per day per parent to pay for meals, or a larger one-off amount to help with bills.

If it's a success you can roll it out to other hospitals.

I'm just typing the first thing that comes into my head so forgive me if it sounds daft!

Think a campaign is a great idea. Would certainly want to know more and get behind it. Hopefully if might be something good to come out of this situation.
Re: riots. CA have been pretty feeble in their efforts to generate physical supporters so far. I imagine the call to riot would be met with a lot of ' Gd 4 u Huns. Wd b their if I cd!'
Blondiej I think there has been a lot of balanced reporting in the mainstream media, much of which has been shared on here. Tabloids, not so much. But mainstream media and tabloids are not the same.

It's a difficult one; my DS had a long NICU stay (nearly 100 days).

I also have a colleague whose pre-teen had a life-changing accident & was in hospital 100 miles away for 6 months.

There's no doubt that you incur extra costs - hospital parking being one of them - and your pay runs out.

We fundraised for Ronald McDonald House, who supported my colleague.

And most NICU's will have charitable donation funds. My DP has gone on the charity board of our NICU & distributing funds to support patients.

Redglitter, funny that, they have been protesting and barely anyone has been turning up, they tried bombarding socail media lastnight, it did not work, I think theres a lot of keyboard warriors, not many actully prepared to actually do anything rather than spout drivel.

Maybe we should all think about doing something for our local PICU's as a start?

Here's a list of all the PICUs in Great Britain (I Googled so assume it is accurate):

Addenbrooke’s Hospital, Cambridge
Alder Hey Children's Hospital, Liverpool
Birmingham Children's Hospital
Bristol Royal Hospital for Children
Evelina Children’s Hospital, London
Freeman Hospital, Newcastle
Glenfield Hospital, Leicester
Great North Children’s Hospital, Newcastle
Great Ormond Street Hospital, London
John Radcliffe Hospital, Oxford
James Cook University Hospital, Middlesborough
King's College Hospital, London
Leeds General Infirmary
Leicester Children's Hospital
Nottingham Children's Hospital
Royal Belfast Hospital for Sick Children
Royal Brompton Hospital, London
Royal Hospital for Sick Children, Edinburgh
Royal Hospital for Children, Glasgow
Royal Manchester Children’s Hospital
Sheffield Children's Hospital
Southampton General Hospital
St George’s Hospital, London
St. Mary's Hospital, London
University Hospital of North Staffordshire, Stoke on Trent
University Hospital of Wales, Cardiff

There's "Connie's most impassioned interview yet" in the DM this morning. In which she says how she wrote a letter to the Pope Despite saying she has never followed any religion. Yet look how important it was to the family to allow some pastor from America to come over, have his picture taken with Charlie, have his assistant take her picture with Charlie....

Guys is it annoying if I post joshua rozenberg's live tweets here during the hearing, or helpful? Just aware not everyone is on twitter

I feel sorry for the abuse Dr Ranj is getting on twitter. Being told 'you're just a tv doctor go back to CBeebies'. He's an actual real life children's doctor and works on intensive care FFS!

I would appreciate that Lapin.

Only twenty six units - that surprised me.

Thanks for posting the statement from Paglia.

Will anyone care two hoots about any demonstrations by CA? They seem to have discredited themselves entirely. If they've had any effect whatsoever on this case it seems to be to have been negative for the family, in terms of losing wider support, not positive.

I really hope all protesters are kept right away from the entrance to GOSH for the next few days, to minimize the extra anguish they're causing other parents at the hospital. I hope the police have the power to move them on to a place where they can't cause more harm.

Yes please Lapin from me too - it would be very helpful.

Please do lapin!!

Just caught up with the the thread. Thoughts are with LonelyMummy and your little girl!

I like the idea of a campaign, I'm in.

I hope the outcome for Charlie today is the best one for him. Poor baby.

We're going to need a new thread before the hearing, I suggest we fill this one as quickly as possible as people will keep posting here if there is space.

Yes @ShatnersWig heres the quote:

'It was amazing,’ says Connie, who has never followed any religion. ‘It gave us hope Charlie was meant to live — I joked about this being the start of our miracle.'

So she's taken up religion in the last week, then? I get that people turn to faith in bad times, but the cynic in me wonders if all the posturing with the American pastor and the pope was a bit of a means to an end. Sorry if this sounds harsh.

Ok I will literally post them up with no comment so they're clean.
Good idea to start a new thread but please do it close to 10.30 as possible so there are not pages of discussion before the hearing itself

I hope the right decision for Charlie is made today. My thoughts are with Connie & Chris as I can't imagine how difficult today will be for them.

LonelyMummy

There is support to a degree but its patchy.
Social workers can give emergency funds to families on low income for help with food and travel.
The family fund and joseph rowntree will help.
Some units have a cardiac liaison nurse that can help families access extra financial help as part of their remit,
Breasfeeding mums are allowed vouchers which entitle them to free meals from the hospital canteen/restaurant

Whats missing is a focal point or one person who's job it is to signpost parents to ways they can get help or who could access charitable funds to allocate to parents.
If the parents dont know about ways they can access help or dont ask for that help I suppose the assumption is that they are managing.

I'm going to be out till after lunch. My son's school is having a garden party. Will try catch up now and again via my phone. Can see CA imploding today - from their sofas of course.

Will be very surprised if any credible evidence has been submitted. In the nicest way, I hope the poor child is at peace soon.

With regard to the Christian point of view, which has been well explained by Online I have sadly been in meetings where people knew exactly what God's will was - it's just that he seemed to be saying different things to different people. The far right have their pro life agenda, but are largely informed by Charlie's parents, so in their eyes he can see, watch videos, respond to tickles etc, where as those taking a wider view, informed by medical staff see a little boy with no quality of life, kept alive by machines.
To me the kindest thing is to let Charlie go. As a baby he has a free pass to heaven. In Christian terms what could be better than that?
So again today I will pray for the judge, who needs the wisdom of Solomon, for the parents, for the strength to accept what lies ahead, and for Charlie, that he may rest in peace.
And thank you to everyone on here for a great thread.
And prayers for Lonely mummy who really should be Lovely mummy as someone else said, and all the others on these threads who have shared their stories.
And a final prayer for the staff at GOSH. I can't see how they can fail to love Charlie, having looked after him for so long, and whatever today brings will be hard for them.

lapin - perhaps you could start a new thread (regardless of if this one is full or not) just before the trial starts which you could title "Charlie's Hearing" or something similar. That way there's a dedicated thread to it and as you started the thread all your posts will be highlighted so it might make it easier to see all the Tweet updates you put up as opposed to them getting lost amongst other people's posts?

Just an idea....

On the army page

http://www.duden.de//*mediaia_/full/B/Beatmungsgeraet-201020596459.jpgg The Brave of the demonstrants go in , get the baby , get him out and flee from UK.They will euthanise the human rights and the democracy today. More people want that he lives than people there woh want him to see dying.

Most PICU/NICU/Children's hospitals have some sort of fund that families can access. The bigger names eg. GOSH tend to have more charity funding than others.

Signposting the existing support and fundraising to put money into existing support mechanisms might be more beneficial than creating a new charity as parents trying at access that money down the line would presumably face another admin. burden.

I work in a children's hospital - the money is accessed via the chaplaincy team but ward staff know this and contact them if parents are in need. In other places I've worked it has been the role of the liaison health visitors role.

I know how expensive it is having a child in hospital - even medical friends and colleagues have found it hard going. As a HCP I have come across many families where jobs have been lost, sick pay ceased etc (despite the fact that the stress of their child's illness is making the parents ill too). Unfortunately it is often those less able to withstand an interruption to cashflow that suffer the most.

The Ronald McDonald Houses and equivalent do sterling work (some parent accommodation is run by other national charities eg. Sick Children's Trust or indicidual hospital charities eg. COSMIC).
My perception is that accommodation for parents with babies in NICU is generally less organized and that there is less of it.