Charlie Gard

[Eisegerwind]

11 hours ago, Orraloon said:

Some very big advances in medical practice have come on the back of experimental treatments on people who were thought to be untreatable by any other methods. Some of those experiments, carried out decades ago, would by today's standards be thought of as "cruel" or "inhumane". A lot of those experiments just wouldn't be allowed to happen today. But they have undoubtedly helped in the treatment of future generations of people. This new technique might not help this particular child (or maybe it will?) but what they learn might help in the treatment of others in the future.

On the other hand, one thing the planet is not short of, is babies. About one third of a million of new ones are born every day. About 7 million children die every year from illnesses which should be regarded as "preventable". Of course we don't see the wee faces of those 7 million children plastered across the front pages of our newspapers every day. To me, the main point of this case is why does our main stream media focus so much on this one individual child when they could be doing so much more to help millions of others?

Not that I'm miffed that my excellent post was rubbished. Fair enough the second paragraph, I could've googled as well. Got any specifics on the first paragraph.I would imagine that all sorts of experimental treatments are going on today that could be regarded as 'cruel' or 'inhumane'. Guess it all depends on your definition of cruel or inhumane, giving people a placebo drug to compare with an active drug might fall into that category but hey stuff happens.

[Orraloon]

11 hours ago, Eisegerwind said:

Not that I'm miffed that my excellent post was rubbished. Fair enough the second paragraph, I could've googled as well. Got any specifics on the first paragraph.I would imagine that all sorts of experimental treatments are going on today that could be regarded as 'cruel' or 'inhumane'. Guess it all depends on your definition of cruel or inhumane, giving people a placebo drug to compare with an active drug might fall into that category but hey stuff happens.

Stuff like the once fairly routine use of lobotomies and loads Psychological experiments. Michael Mosley did a program about it for the BBC a while back. I think it was called "The Brain"? You could try googling it, if you can be bothered.

[Mindimoo]

His parents have given up any further legal challenge.

[scot scotland scottish]

Utterly heartbreaking

[RenfrewBlue]

On 15/07/2017 at 2:44 PM, Orraloon said:

Some very big advances in medical practice have come on the back of experimental treatments on people who were thought to be untreatable by any other methods. Some of those experiments, carried out decades ago, would by today's standards be thought of as "cruel" or "inhumane". A lot of those experiments just wouldn't be allowed to happen today. But they have undoubtedly helped in the treatment of future generations of people. This new technique might not help this particular child (or maybe it will?) but what they learn might help in the treatment of others in the future.

On the other hand, one thing the planet is not short of, is babies. About one third of a million of new ones are born every day. About 7 million children die every year from illnesses which should be regarded as "preventable". Of course we don't see the wee faces of those 7 million children plastered across the front pages of our newspapers every day. To me, the main point of this case is why does our main stream media focus so much on this one individual child when they could be doing so much more to help millions of others?

I think you'll find that a lot of the children that die every year are the wrong colour for our media to care about. 

It's far easier to sell papers off the back of a child that looks like your own. 

The media will pick this story clean and will be happy to spin it out far beyond when this poor wee mite is gone. 

It's a terrible thing to decide to try and extend the boys life or let him go. I've not been following it in detail,  as I'm not good at remaining emotionally detached when it's innocent children suffering, but if they did extend his life what quality would it be? 

Can he experience joy and love or is he perpetually suffering? It hurts to think about it so God knows how his parents feel. 

How can anyone decide what's right. No matter what you do the doubts afterwards would eat you alive. 

I hope his parents are getting the right support and have good friends and family backing them up. They're going to need them. 

Especially when the tabloid vultures start to pick the story clean. 

[thplinth]

Reminds of this previous example... Had the parents arrested remember.

https://www.thesun.co.uk/news/2859927/ashya-king-cancer-free-and-back-at-school-after-proton-beam-therapy-brain-tumour-treatment-row-with-nhs/

I personally think the hospital is well out of order here. The boy should have been treated before he degenerated to the point it would be a waste of time. The treatment would not have hurt him so why not try it. He was a not a 'sick child being experimented on' he was a dying child with a chance at a new treatment. I would go off my nut if I was the parent here. Doctors in the UK are way overreaching their authority in these cases.  

It is the arrogance of Doctors, they think they know best. Why on earth not let them go 7 months ago or whenever. Are they frightened they would be proved wrong? 

Edited July 26, 2017 by thplinth

[Parklife]

Yeah, years spent at uni and then working in medicine and these Dr's think they know medicine better than two folk who've never studied medicine in their life. The cheek of them!! 

[scot scotland scottish]

8 minutes ago, thplinth said:

Reminds of this previous example... Had the parents arrested remember.

https://www.thesun.co.uk/news/2859927/ashya-king-cancer-free-and-back-at-school-after-proton-beam-therapy-brain-tumour-treatment-row-with-nhs/

I personally think the hospital is well out of order here. The boy should have been treated before he degenerated to the point it would be a waste of time. The treatment would not have hurt him so why not try it. He was a not a 'sick child being experimented on' he was a dying child with a chance at a new treatment. I would go off my nut if I was the parent here. Doctors in the UK are way overreaching their authority in these cases.  

It is the arrogance of Doctors, they think they know best. Why on earth not let them go 7 months ago or whenever. Are they frightened they would be proved wrong? 

Spot on - I agree with every word.

Also seems that if anyone dare's to say a bad word against Great Ormond Street, they get battened down with a stick that has air of 'don't question this Great British Institution'

[thplinth]

26 minutes ago, Parklife said:

Yeah, years spent at uni and then working in medicine and these Dr's think they know medicine better than two folk who've never studied medicine in their life. The cheek of them!! 

Did the Doctor in the US who is very well respected I understand not go to University then. Great point but.

[Orraloon]

Doctors have to make decisions like this every day of the week. They are bound to get some wrong. I don't know if this is one of those occasions or not. No doubt there will be some sort of investigation and even then folk will still be arguing about it. I wouldn't want to be a doctor who had to decide who gets treated and who doesn't. I think that being arrogant possibly helps them to be capable of making these decisions? It might even be part of the selection procedure, which would explain why such a high level of consultants, in particular, seem to have a very high level of arrogance.

[Parklife]

32 minutes ago, thplinth said:

Did the Doctor in the US who is very well respected I understand not go to University then. Great point but.

The Dr who had never examined Charlie Gard until last week (when he advised the parents that the treatment would not now be worthwhile), nor seen all his medical records and who also had never carried out his experimental treatment on anyone with Charlie's condition? That Dr? Or are you referring to a different one? 

[aaid]

5 minutes ago, Parklife said:

The Dr who had never examined Charlie Gard until last week (when he advised the parents that the treatment would not now be worthwhile), nor seen all his medical records and who also had never carried out his experimental treatment on anyone with Charlie's condition? That Dr? Or are you referring to a different one? 

And the one who has a financial intertest in the treatment he was proposing. 

[thplinth]

10 minutes ago, Parklife said:

The Dr who had never examined Charlie Gard until last week (when he advised the parents that the treatment would not now be worthwhile), nor seen all his medical records and who also had never carried out his experimental treatment on anyone with Charlie's condition? That Dr? Or are you referring to a different one? 

Do you mean the professor of neurology at Columbia University and specialist in mitochondrial diseases? (Charlie Gard has a rare genetic condition known as mitochondrial DNA depletion syndrome.) Is it that guy you mean? Is it? Is it?

http://columbianeurology.org/profile/mhirano

Edited July 26, 2017 by thplinth

[Parklife]

1 hour ago, thplinth said:

Do you mean the professor of neurology at Columbia University and specialist in mitochondrial diseases? (Charlie Gard has a rare genetic condition known as mitochondrial DNA depletion syndrome.) Is it that guy you mean? Is it? Is it?

http://columbianeurology.org/profile/mhirano

Yeah, that's the guy who'd never examined Charlie Gard and had never seen his medical records. I'd value the medical opinion of the mitochondrial specialists who'd examined the poor boy and his medical records, over the opinion of someone who never had. 

Each to their own though. 

[thplinth]

Ahh yes the statements issued by GOSH to try to rubbish the guy or rather the statements issued by the top line super expensive PR firm GOSH have hired. Money well diverted from saving kids I am sure...Only here is what he says himself...

Quote

Dr Hirano said: ‘I became involved in Charlie’s case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie’s condition.

‘As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition.

‘Unfortunately, an MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment.’

 

Hmmm does seem like GOSH's PR firm are trying to spin this. He has apparently treated 16 other kids successfully. If the kid had been allowed to go straight away he would have treated him. Instead while GOSH fought the parents in court the kid degenerated to the point the treatment was pointless. 

Trying to undermine this doctor is quite telling here I think.

This was about the parents being allowed to take their kid to america to try this treatment when it still had a chance of working versus being told by a doctor, no we have decided all hope is gone and he must just slowly die while you watch. They wasted the baby's chance away burning his precious time in the courts. I feel the same disgust as the parents do. This is not going to do GOSH any favours whatsoever in the long run. 
 

[thplinth]

Not examining the kid is another bit of GOSH spin. 

That is not how it works, the specialist doctor does not fly to the UK to examine one patient. The patient goes to them to their clinic for tests and then they decide a course of treatment if any. Think about it... they have tonnes of lab equipment and specialist machines not to mention all the people who work there. The kid needed to go to him. So what stopped that happening.

I think the Dr only flew over in the end to testify at the court case and then he saw the scan results and said it is now too late. Bet you the reason he never saw anything sooner was the same reason the kid was never allowed to visit the clinic. 

Why are GOSH trying to rubbish the guy and make him sound like he is in it for the money. It is clearly not the case. 

Edited July 26, 2017 by thplinth

[Eisegerwind]

3 hours ago, Parklife said:

Yeah, years spent at uni and then working in medicine and these Dr's think they know medicine better than two folk who've never studied medicine in their life. The cheek of them!! 

 

3 hours ago, Parklife said:

Yeah, years spent at uni and then working in medicine and these Dr's think they know medicine better than two folk who've never studied medicine in their life. The cheek of them!! 

I wouldn't be so quick to dismiss the opinions of these 'folk'. Some of them will have spent literally minutes googling michrothingy deletion.

[Parklife]

I never mentioned money. 

I said i trusted the judgement of a specialist who had examined the boy and his medical records, over a specialist who had not. That's no spin, simply facts. 

You appear to have no trust or faith in the specialists at GOSH, yet lots of faith on this specialist. Why is that? The specialists who knew most about Charlie Gard and his condition felt the treatment would have done no good and only have increased and extended his suffering. Why is it you appear to think they are wrong?

@thplinth

[JasMc1973]

53 minutes ago, thplinth said:

Ahh yes the statements issued by GOSH to try to rubbish the guy or rather the statements issued by the top line super expensive PR firm GOSH have hired. Money well diverted from saving kids I am sure...Only here is what he says himself...

Hmmm does seem like GOSH's PR firm are trying to spin this. He has apparently treated 16 other kids successfully. If the kid had been allowed to go straight away he would have treated him. Instead while GOSH fought the parents in court the kid degenerated to the point the treatment was pointless. 

Trying to undermine this doctor is quite telling here I think.

This was about the parents being allowed to take their kid to america to try this treatment when it still had a chance of working versus being told by a doctor, no we have decided all hope is gone and he must just slowly die while you watch. They wasted the baby's chance away burning his precious time in the courts. I feel the same disgust as the parents do. This is not going to do GOSH any favours whatsoever in the long run. 
 

Yes he has treated 16 kids but not with this experimental treatment, not even tested on a lab rat.... the bairn had his first seizure in december and was likely beyond saving then..

Just sick of the media coverage...let the family mourn in peace... 

[RenfrewBlue]

4 hours ago, Parklife said:

I never mentioned money. 

I said i trusted the judgement of a specialist who had examined the boy and his medical records, over a specialist who had not. That's no spin, simply facts. 

You appear to have no trust or faith in the specialists at GOSH, yet lots of faith on this specialist. Why is that? The specialists who knew most about Charlie Gard and his condition felt the treatment would have done no good and only have increased and extended his suffering. Why is it you appear to think they are wrong?

@thplinth

I'm surprised you had to ask that last question Parky. Thplinth knows best, you know that. 

I agree with yourself on this and wonder why folk think GOSH would do anything but try and help this boy. 

As to those that think running a completely untried procedure on a wee boy is sensible, other than his desperate parents is beyond me. 

I have no idea what this wee boy is suffering and I hope never to find out, I just wish the scummy media wasn't dragging it all out in their shiterags. 

[G-Man]

https://en.m.wikipedia.org/wiki/Ashya_King_case

It made me think of this case and all the conflicting stories that came and still come from it. 

[phart]

My mate would be dead if he followed the advice of the NHS.

The simple fact is the NHS isn't expert in everything, some types of tumour or cancer are 1 in a million of cancers. No one in Britain has ever worked on some types of tumour, however in America where specialization is rampant, you have folk who only work on these type of tumours.

They told my mate if they operated they would kill him.

When he decided to go against them, they essentially took the medical equivalent of a huff. I'd have to speak to him again to get exact specifics, the NHS has been great with my gran so just don't want to put stuff that might not be 100% accurate, but loads of petty weird stuff.

He got the operation done in an American University hospital and was able to come home 2 weeks later.

 

 

Edited July 27, 2017 by phart

[phart]

The NHS in England is crazy, so much money involved. I remember reading a piece about whistle-blowers in Private Eye.

" On 4 May 2004, the PCT asked Dr Brambleby to give a statement to the media but to check with the SHA press officer, who was briefed and ready for the call. He said he had read all the “libellous” correspondence, had briefed the Secretary of State (John Reid), and warned Dr Brambleby that unless he dropped the whole matter he would end up “like Dr David Kelly who was found dead in the woods with his wrist slashed.” Complaints about that threat to NAO and SHA fell on deaf ears. "

https://en.wikipedia.org/wiki/Peter_Brambleby

http://www.drphilhammond.com/blog/tag/dr-peter-brambleby/

[phart]

On 26/07/2017 at 0:16 PM, aaid said:

And the one who has a financial intertest in the treatment he was proposing. 

There's a financial interest not to go ahead with the treatment on budgets across the whole UK and NI.

We should be applying the same doubt across all available scenarios not just cherry picking based on our biases.

We're discussing science after all. Let's show some respect and think better.

 

[phart]

If the end result is death, then trying anything short of death is worthwhile.

Every process had to be done on someone who had never had it done before or by a doctor who had never done it before.

Name one medical treatment that wasn't at this stage at some point? There isn't one.

Following some of the implied logic above we'd never have any surgical procedures.