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sleepwello'nights

Charlie Gard

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I'm puzzled why the doctors at Great Ormond Street Hospital won't let the babies parents take him to America for treatment. 

The parents have raised the funds to pay for the treatment so the financial cost is not the concern of the hospital, nor is it a question of scarce resources being used that will prevent other patients with a higher likelihood of successful treatment be affected. 

Should the doctors opinion override the parents wishes?

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Bare in mind a lot of DRs in the US spout total wank and pitch miracle cures when there is no proven treatment.

Ive found the whole episode depressing. Youve had loads of people inserting themselves into the siutation with no understanding of the illness.

Really fucking cured isnt he:

https://www.thesun.co.uk/news/3985264/charlie-gard-parents-boy-similar-condition-urge-doctors-travel-us-treatment/

 

 

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9 minutes ago, sleepwello'nights said:

I'm puzzled why the doctors at Great Ormond Street Hospital won't let the babies parents take him to America for treatment. 

The parents have raised the funds to pay for the treatment so the financial cost is not the concern of the hospital, nor is it a question of scarce resources being used that will prevent other patients with a higher likelihood of successful treatment be affected. 

Should the doctors opinion override the parents wishes?

It's a tragedy for the poor wee kid 

I think the court case and miracle meds from America are a result of the population believing all medical conditions can be cured / managed 

when this doesn't turn out to be the case a quick go on google will find some alternative, often charlatans as far as I can see (no idea if the treatment these parents want to try is any good) 

must be very hard for doctors, they are seen as the bad guys 

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I haven't really followed this closely, but made up my mind when that bloke in the US paraded his vegetable-child who had received the same "treatment" to the Mailonline journalists.

Just accept what is best for the child.

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8 minutes ago, Malthus said:

It's a tragedy for the poor wee kid 

I think the court case and miracle meds from America are a result of the population believing all medical conditions can be cured / managed 

when this doesn't turn out to be the case a quick go on google will find some alternative, often charlatans as far as I can see (no idea if the treatment these parents want to try is any good) 

must be very hard for doctors, they are seen as the bad guys 

Even if they can stop the degenerative disease, the damage already done means the kid would remain a on life support from now until he dies anyway. Very sad.

These kind of situations are always really awkward ethically. On the one hand i instinctively think the parents should have final say as they love their child and will be committed to their best interest, but on the other, I've read enough stories of parents who are halfwit herbalists or religious types "treating" very manageable conditions like diabetes with lavender oil or prayers with entirely foreseeable consequences.

Edited by Hail the Tripod

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18 minutes ago, sleepwello'nights said:

I'm puzzled why the doctors at Great Ormond Street Hospital won't let the babies parents take him to America for treatment. 

The parents have raised the funds to pay for the treatment so the financial cost is not the concern of the hospital, nor is it a question of scarce resources being used that will prevent other patients with a higher likelihood of successful treatment be affected. 

Should the doctors opinion override the parents wishes?

Just chucking my oar in, the parents have raised the funds but Great Ormond Street won't let him go on the grounds of not causing further suffering or summat like that. Its really high profile so the hospital will be very carefully considering their opinion/approach. I'd go with the hospital's view, the whole thing that America is some magical land where medical miracles happen and the UK is a backwards shiytehole medically is not true. The child is severely brain damaged if the best of the UK doctors have opined that best course is to let him slip away then maybe that is the best option.

Also too many fuckers have inserted themselves in this episode, it should be parents, hospital, courts that's it

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I don't have any great opinion on this case (apart from why have so many people latched on to the publicity ride?) But would add this.

This concerns the daughter of a good friend of mine who underwent surgery at GOSH

"We are sorry, Mr and Mrs XXX, but YYY's brain damage is so, so severe. You will need to accept that she will not be able to see or hear. She will effectively be one up from a vegetable, as you see her here now. We hope that with the right drug combination we might be able to make her comfortable - any questions?" - GOS (09/2000)

* Will she recognise us? No 

* Will she eat or drink? No 

* Will she walk or talk? No 

* Will she smile or react? No 

* Will she understand anything? No 

* Will her life be shortened? Yes 

The girl, whilst still wheelchair bound, is now a mentally near-normal 18 year old. True, she needs extensive care but can talk using her Ipad and communicate perfectly well.

The doctors, even the very best, are not always able to factor in just how much of a will to survive a child, and in this case her exceptional mum have. 
 

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The only reason I've been curious bout this case is, it's regularly been in the headlines and on the front pages for the last 6 weeks, yet doesnt seem to have incited the usual emotion/interest on reddit (sort of gives a bit of an insight into social media). Has the population got bored with /wised up to these stories and the media and press not realised?

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23 minutes ago, Cunning Plan said:

I don't have any great opinion on this case (apart from why have so many people latched on to the publicity ride?) But would add this.

This concerns the daughter of a good friend of mine who underwent surgery at GOSH

"We are sorry, Mr and Mrs XXX, but YYY's brain damage is so, so severe. You will need to accept that she will not be able to see or hear. She will effectively be one up from a vegetable, as you see her here now. We hope that with the right drug combination we might be able to make her comfortable - any questions?" - GOS (09/2000)

* Will she recognise us? No 

* Will she eat or drink? No 

* Will she walk or talk? No 

* Will she smile or react? No 

* Will she understand anything? No 

* Will her life be shortened? Yes 

The girl, whilst still wheelchair bound, is now a mentally near-normal 18 year old. True, she needs extensive care but can talk using her Ipad and communicate perfectly well.

The doctors, even the very best, are not always able to factor in just how much of a will to survive a child, and in this case her exceptional mum have. 
 

All due respect, they appear to have got ~50% of that diagnosis correct.

Medical diagnosis, esp. with the brain, is very hit and miss.

 

 

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1 minute ago, spygirl said:

All due respect, they appear to have got ~50% of that diagnosis correct.

Medical diagnosis, esp. with the brain, is very hit and miss.


 


 

Maybe. But they diagnosed a cabbage. They were 100% off in that respect.

The unsettling thing for me is that I have known her since birth and still find myself at times talking to the wheelchair or using simple language with her.


 

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What I think is sad is that I believe the parents feel they have lost control and don't have a voice as far as the hospital is concerned. They had said, apparently, that they wanted to take him home for one last night before his life support was switched off. I can't understand why the hospital can't make this a possibility. 

The important thing to remember is that he is their child and losing having any say is utterly soul destroying.

FTR, I don't think the parents should prolong his life but I do feel sad that they can't have a chance at trying something at a cost to them and no one else. 

7 hours ago, Cunning Plan said:

I don't have any great opinion on this case (apart from why have so many people latched on to the publicity ride?) But would add this.

This concerns the daughter of a good friend of mine who underwent surgery at GOSH

"We are sorry, Mr and Mrs XXX, but YYY's brain damage is so, so severe. You will need to accept that she will not be able to see or hear. She will effectively be one up from a vegetable, as you see her here now. We hope that with the right drug combination we might be able to make her comfortable - any questions?" - GOS (09/2000)

* Will she recognise us? No 

* Will she eat or drink? No 

* Will she walk or talk? No 

* Will she smile or react? No 

* Will she understand anything? No 

* Will her life be shortened? Yes 

The girl, whilst still wheelchair bound, is now a mentally near-normal 18 year old. True, she needs extensive care but can talk using her Ipad and communicate perfectly well.

The doctors, even the very best, are not always able to factor in just how much of a will to survive a child, and in this case her exceptional mum have. 
 

Who is covering the cost of this extensive care and what happens when her exceptional mum is no longer around to care for her?

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7 minutes ago, Battenberg said:

What I think is sad is that I believe the parents feel they have lost control and don't have a voice as far as the hospital is concerned. They had said, apparently, that they wanted to take him home for one last night before his life support was switched off. I can't understand why the hospital can't make this a possibility. 

The important thing to remember is that he is their child and losing having any say is utterly soul destroying.

FTR, I don't think the parents should prolong his life but I do feel sad that they can't have a chance at trying something at a cost to them and no one else. 

Who is covering the cost of this extensive care and what happens when her exceptional mum is no longer around to care for her?

There the odd nespaper feature of mums with young downes kids. You know, saying how cute and loving they are. And they are when they are young.

Sally slap th pony did a tv show recently. You know, dont abort your downs kid.

Niw downes isnt bkack and white, its got quite  a wide spectrum. Ive known some who are quite indendent.

But the problem omes when that cyte baby turns into a 20 stone lumbering confusion if hirmones. Ive heard of some parents almost battered to death by their child. Not something yiu want to be dealung with in your 60s.

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22 minutes ago, Battenberg said:

What I think is sad is that I believe the parents feel they have lost control and don't have a voice as far as the hospital is concerned. They had said, apparently, that they wanted to take him home for one last night before his life support was switched off. I can't understand why the hospital can't make this a possibility. 

The important thing to remember is that he is their child and losing having any say is utterly soul destroying.

FTR, I don't think the parents should prolong his life but I do feel sad that they can't have a chance at trying something at a cost to them and no one else. 

Who is covering the cost of this extensive care and what happens when her exceptional mum is no longer around to care for her?

Why would that matter?

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8 hours ago, Talking Monkey said:

................ too many fuckers have inserted themselves in this episode, it should be parents, hospital, courts that's it

Such an awful case for everyone involved. I think you've summed it up perfectly. The celebrity showboating going on is utterly depressing.

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24 minutes ago, Cunning Plan said:

Why would that matter?

Using the CG case as an example, if he went on for years in his current condition who takes care of him when the parents are no longer around and at what cost. That's the point I was trying to make but didn't succeed clearly. 

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54 minutes ago, Battenberg said:

What I think is sad is that I believe the parents feel they have lost control and don't have a voice as far as the hospital is concerned. They had said, apparently, that they wanted to take him home for one last night before his life support was switched off. I can't understand why the hospital can't make this a possibility. 

The important thing to remember is that he is their child and losing having any say is utterly soul destroying.

FTR, I don't think the parents should prolong his life but I do feel sad that they can't have a chance at trying something at a cost to them and no one else. 

Who is covering the cost of this extensive care and what happens when her exceptional mum is no longer around to care for her?

Quite. An old colleague of mine from Guildford had a child with a major disability. I'm not sure but I think the child lived in Great Ormond Street. Because of some amazing insurance she had obtained, the insurance company was on the hook for an unlimited sum. 

You might say that the insurance company is paying for it but you can be damn sure it's actually the insurer's other customers who are paying for it. 

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I think people remember the case of the cancer kid who's parents wanted to take him to Europe for proton beam therapy and the NHS took out extradition orders on them.

He is now cancer free.

I'm not saying this is in any way the same, but give a dog a bad name..

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7 minutes ago, Battenberg said:

Using the CG case as an example, if he went on for years in his current condition who takes care of him when the parents are no longer around and at what cost. That's the point I was trying to make but didn't succeed clearly. 

I think it is a fair point. The girl was actually normal until she was unfortunately starved of oxygen during an operation at GOSH. The irony is that her mum was part of the brains behind the Wishing Well Appeal.

The mum has continued to work and the daughter has attended special schools. Sadly the father died but was very well insured which has provided a degree of security for the daughter 

The mum's biggest worry is what happens when she is gone. 

But I do agree with you. The CG family may have raised the funds to get treatment that may keep the child alive. But not the millions required to support the child forever after.

It is not an easy decision and one that I hope I never have to make.

 

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When babies fail to sustain basic life functions they should be allowed to die. What I am uncomfortable with is the high-handed attitude of the doctors and judges. It is the parents who have authority here, not some mutually-masturbating jobsworths. They need to be persuading the parents, not riding roughshod over a family

Edited by Panther

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2 minutes ago, Panther said:

When babies fail to sustain basic life functions they should be allowed to die. What I am uncomfortable with is the high-handed attitude of the doctors and judges. It is the parents who have authority, not some mutually-masturbating jobsworths

 

 

 

Yes. Except it is the parents that want to keep the child alive and the doctors and judiciary that have taken the opposing view.

To add a counter argument, are you happy that judges step in and order blood transfusions for the children of Jehova's witnesses?

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2 minutes ago, Panther said:

When babies fail to sustain basic life functions they should be allowed to die. What I am uncomfortable with is the high-handed attitude of the doctors and judges. It is the parents who have authority, not some mutually-masturbating jobsworths

 

 

 

Well yes, but somebody has to say no to the parents eventually. Would you rather it was doctors and judges that did it or the screaming banshees on facebook?

We now have facebook running the country. Fucking hell.

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1 hour ago, Battenberg said:

What I think is sad is that I believe the parents feel they have lost control and don't have a voice as far as the hospital is concerned. They had said, apparently, that they wanted to take him home for one last night before his life support was switched off. I can't understand why the hospital can't make this a possibility. 

The important thing to remember is that he is their child and losing having any say is utterly soul destroying.

FTR, I don't think the parents should prolong his life but I do feel sad that they can't have a chance at trying something at a cost to them and no one else. 

Who is covering the cost of this extensive care and what happens when her exceptional mum is no longer around to care for her?

If the hospital fell for this ruse then the parents would try and skip the country

(like the jehovahs witnesses who fled to spain a few years ago) 

I'm afraid this is now about the parents insisting on imposing their will.

Any snake oil treatment being proposed is exactly that and hasn't even been tested on mice.

Edited by WorkingPoor

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2 minutes ago, Panther said:

When babies fail to sustain basic life functions they should be allowed to die. What I am uncomfortable with is the high-handed attitude of the doctors and judges. It is the parents who have authority, not some mutually-masturbating jobsworths

 

 

 

Not disagreeing with your main point but but are we sure that the judges and doctors are being high-handed mutually-masturbating jobsworths? Could they just be trying to do their best for their patient?

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