Guardian Prize Crossword 29,577 Saturday...
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Spanner In The Works
The parents of little Charlie Gard have been exploring avenues for possible alternative treatments in the U.S in a bid to improve their childs condition.Meanwhile the doctors at Great Ormond Street have been advising that the life support mechanisms should be turned off to enable the child to die with dignity.Whilst given the childs condition this may be the kindest decision, for doctors to e mail one another calling parents a spanner in the works is disgraceful.Apparently this Doctor cannot be named for legal reasons,what a pity.Cases like this one highlight the problems people have with putting their trust in Hospital doctors who have a feeling that they are God.
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I fully understand the parents need and that they want to save their child. To have him close and as well as he can be.
But what they are proposing will not give him a good life. He is (unfortunately) so damaged that any help he may get will only make his life seem more.... I don't know what the right word is that doesn't come across as insulting or uncaring so won't try.
However the Drs are only human and say things that perhaps are not very compassionate so knowing patient notes can be viewed by parents etc should be more guarded but they are the ones with knowledge and understand what he is going through and what he will go through if allowed to live, with or without treatment.
I would not like to be the one making this decision but in all honesty I would say let him go. Let him slip away with his parents by his side holding his hand singing him a lullaby.
But what they are proposing will not give him a good life. He is (unfortunately) so damaged that any help he may get will only make his life seem more.... I don't know what the right word is that doesn't come across as insulting or uncaring so won't try.
However the Drs are only human and say things that perhaps are not very compassionate so knowing patient notes can be viewed by parents etc should be more guarded but they are the ones with knowledge and understand what he is going through and what he will go through if allowed to live, with or without treatment.
I would not like to be the one making this decision but in all honesty I would say let him go. Let him slip away with his parents by his side holding his hand singing him a lullaby.
bednobs, I found this.
http://
http://
a doctor should not refer to patients or parents as "pains in the arris" or other insulting terms
the case is about futile treatment
the americans are quite willing to supply futile treatment ( treatment that you know doesnt work ) if you have the money
having a mitochondrial disease is not compatible with life
we hear about the millions raised for these children
but not the outcomes - usually death later on which is not news
[ "millions wasted on futile treatment" is NOT news and doesnt sell newspapers]
Here is one from ..... 1992
http://
Laura died after a second or third transplant ...
and critics said that five children were deprived of life
by using the organs in a futile case
intestingal transplant doesnt work by the way
"Optimised home parenteral nutrition is still, after 35 years of progress, the "gold standard "for benign but chronic intestinal failure. ... most patients died within days or months after Intestine transplantation."
I can hardly believe it was 25 y ago ....
the case is about futile treatment
the americans are quite willing to supply futile treatment ( treatment that you know doesnt work ) if you have the money
having a mitochondrial disease is not compatible with life
we hear about the millions raised for these children
but not the outcomes - usually death later on which is not news
[ "millions wasted on futile treatment" is NOT news and doesnt sell newspapers]
Here is one from ..... 1992
http://
Laura died after a second or third transplant ...
and critics said that five children were deprived of life
by using the organs in a futile case
intestingal transplant doesnt work by the way
"Optimised home parenteral nutrition is still, after 35 years of progress, the "gold standard "for benign but chronic intestinal failure. ... most patients died within days or months after Intestine transplantation."
I can hardly believe it was 25 y ago ....
How long will it be before doctors learn that they cannot say or write what they like about patients? I was a student 40+ years ago and we were shocked then to see things like “This ugly child and her demanding mother” in letters from consultants to GP’s How difficult can it be to be polite? I agree with grumpy, it does nothing for doctor patient relationships generally and makes doctors look like a bunch of arrogant arrises.
".The fact is that many Hospital Doctors think that they are God and their actions and words often reflect this."
Really? I haven't found that.
If you are really ill, then just hope that the DR treating you thinks he IS God.
P.P as you know, there is more to medicine than treating the illness, one has to treat the "situation" which when children are concerned, then the feelings of the parents must be considered however remote they seem to the doctor. Second opinions should always be available and valued. Remember the little boy from Southampton who had a brain tumour with treatment available in the U. S and Europe , but not in the UK, they had to kidnap their son and take him to ? Czechoslovakia for treatment.........he is now doing well.
Really? I haven't found that.
If you are really ill, then just hope that the DR treating you thinks he IS God.
P.P as you know, there is more to medicine than treating the illness, one has to treat the "situation" which when children are concerned, then the feelings of the parents must be considered however remote they seem to the doctor. Second opinions should always be available and valued. Remember the little boy from Southampton who had a brain tumour with treatment available in the U. S and Europe , but not in the UK, they had to kidnap their son and take him to ? Czechoslovakia for treatment.........he is now doing well.
They should not be rude or write in an insulting manner. Notes are available to the patient.
Some Drs and consultants can be very condescending.
My consultant for my stomach was Given god like status by the nurses. I didn't have a clue who he was but the nurse verily fawned over him and even mentioned god in her reverence of him. He's been on the telly as well, they all ask him for opinion she gushed and I was really lucky to be having him do my surgery.
Turns out he doesn't listen. Didn't take a blind bit of notice when I said it had gone wrong because... appointment after appointment I kept saying the same thing. Even telling him exactly what the problem was because it had happened previously. What did he do? He told his team to discharge me and sent me to see a psychiatrist. Turned out I was right. I only got a half hearted apology after I sat in front of him and more or less told him exactly how I felt.
However getting back to the topic.
Never say (or write) anything that you are not prepared to say to them in person or are ready for the backlash should it get out. I've actually learnt that the hard way
:(
Some Drs and consultants can be very condescending.
My consultant for my stomach was Given god like status by the nurses. I didn't have a clue who he was but the nurse verily fawned over him and even mentioned god in her reverence of him. He's been on the telly as well, they all ask him for opinion she gushed and I was really lucky to be having him do my surgery.
Turns out he doesn't listen. Didn't take a blind bit of notice when I said it had gone wrong because... appointment after appointment I kept saying the same thing. Even telling him exactly what the problem was because it had happened previously. What did he do? He told his team to discharge me and sent me to see a psychiatrist. Turned out I was right. I only got a half hearted apology after I sat in front of him and more or less told him exactly how I felt.
However getting back to the topic.
Never say (or write) anything that you are not prepared to say to them in person or are ready for the backlash should it get out. I've actually learnt that the hard way
:(
Does this clumsy inelegant man not realise it is a parents job to try to safeguard their child? It may indeed be true that treatment in the States won't work (but then it's never been tried on a human before- so this little boy would be the world's first to undergo it)- that in itself is worrying but he faces certain death otherwise and is generally I believe not held to be in pain, so where is the harm? If he doesn't have it he dies. If it fails he dies. If it succeeds he may live and have a good quality of life and in any event medicine will learn something from him for others who suffer in the future.
I dislike the culture of attempting to remove parental responsibility from parents who don't agree with Drs prognosis about terminally or very ill children, and the whole situation has been clumsily handled. They are absolutely right to seek out alternatives as Sqad identified parents are often right and have a greater motivation for covering all ground and Drs should not be using the court of protection in this way, nor should they refer to parents doing a very good job as 'spanners in the works'. Processing someone's child through to their death because it's efficient and accepted is always going to provoke them to try all avenues, and I just hope that now the court is involved they will be allowed to without further hinderance.
I dislike the culture of attempting to remove parental responsibility from parents who don't agree with Drs prognosis about terminally or very ill children, and the whole situation has been clumsily handled. They are absolutely right to seek out alternatives as Sqad identified parents are often right and have a greater motivation for covering all ground and Drs should not be using the court of protection in this way, nor should they refer to parents doing a very good job as 'spanners in the works'. Processing someone's child through to their death because it's efficient and accepted is always going to provoke them to try all avenues, and I just hope that now the court is involved they will be allowed to without further hinderance.
me either bedknobs....but I have found the god complex more in surgeons and particularly in orthopaedic surgeons....and don’t get me started on medical students....We would be asked to provide them with opportunities to see community work and would go to a lot of trouble to do so only to find that around 50% of them just didn’t turn up....seriously the excuses given were “There’s a rugby match” "I am never in college on a monday morning/friday afternoon" and similar stuff. In the end we refused to be a part of the program unless the college could guarantee that the students would appear and we were told “oh we can’t do that"
i sincerely hope they get their wish and take the child to the US. What can they lose in the long term, the child is very sick, we know that, but if there is a treatment that could be of some help to the poor parents and child then i think they should go.
as to doctors i have come across some good ones and some bad, one asked me what was i still doing in the hospital, before my op for pancreatitis - he was the consultant, a tall authoritarian bloke with his nose in the air. I kindly explained that i caught a infection whilst in hospital that was why my surgery was delayed
pompous ass.
as to doctors i have come across some good ones and some bad, one asked me what was i still doing in the hospital, before my op for pancreatitis - he was the consultant, a tall authoritarian bloke with his nose in the air. I kindly explained that i caught a infection whilst in hospital that was why my surgery was delayed
pompous ass.
// they had to kidnap their son and take him to ? Czechoslovakia for treatment.........he is now doing well.// S
Great minds big boy - I thought of that kid when I was writing
his parents say he is now doing well.... at least he is still alive.
Since he had inoperable neuroblastoma - doing well is a turn of phrase
I havent seen any accounts of the oral testimony
and I suspect without any evidence at all that what has happened is that the parents have said - "we have a million for treatment - and your contribution GOS is to get him over there ! without charge on the fund"
and GOS have basically said - no there are much better things we can do with that amount of transport money ....
otherwise I dont see why they dont say - fine take him away, just sign here ......
the law itself is relatively clear
you have to act in the child's best interests
and there is no duty to supply futile treatment ....
Great minds big boy - I thought of that kid when I was writing
his parents say he is now doing well.... at least he is still alive.
Since he had inoperable neuroblastoma - doing well is a turn of phrase
I havent seen any accounts of the oral testimony
and I suspect without any evidence at all that what has happened is that the parents have said - "we have a million for treatment - and your contribution GOS is to get him over there ! without charge on the fund"
and GOS have basically said - no there are much better things we can do with that amount of transport money ....
otherwise I dont see why they dont say - fine take him away, just sign here ......
the law itself is relatively clear
you have to act in the child's best interests
and there is no duty to supply futile treatment ....
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