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Charlie Gard

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Comments

  • I don't know the full merits of this case. But I totally understand the parents frustration and determination in seeking treatment outside the NHS. Too often in the NHS, life and death decisions are a matter of finances, cost effectiveness and statistics, rather than offering a very slim, but potentially life saving treatment.
    This was the situation with my sister who had breast cancer. The new and very expensive monoclonal antibody drug, Herceptin (14,000 pounds per infusion back in 2001) was withheld from her. We fought for months, in fact my wife had to ring the lab pretending to be her doctor, in order to finally get her results which proved she was a prime candidate for the drug. These results were deliberately withheld from us for months.
    After confronting her Consultant with these results, we finally managed to get her the drug, and initially the results were incredible, such that the doctors couldn't believe what they were seeing. They had practically written her death certificate weeks before. She even managed to get out of her bed and to the gym to start trying to rebuild her strength.
    Sadly, it was too late, the cancer had spread too far whilst we were fighting for the treatment, and she only lived another couple of months. She wasn't a baby, but 41 is no age and she deserved the best possible chance of survival.
    This experience left my wife and I (with 20 years NHS experience between us) feeling bitter and cheated, and hastened our departure from our employment in the NHS and the UK.
    If more people questioned their treatment and that of their loved ones, seek second opinions, or go private if they can afford to do so, rather than taking for gospel everything they are told in the NHS, they may well live longer healthier lives.

  • A terminally ill child is just that. The parents were deceived by unscrupulous quacks and ambulance-chasers looking for easy money and publicity, and the campaign was hijacked by a hate group with ulterior motives that had nothing to do with the welfare of the child. Instead of the parents spending what precious little time they have left with their child, they have been dragged through a horrible, demeaning exercise at the expense of what is best for them and their child.

    And until we fix the system so that the welfare of the patient is put first this won't be the last undignified campaign we see of this sort.
  • Fiiish said:



    And until we fix the system so that the welfare of the patient is put first this won't be the last undignified campaign we see of this sort.

    Err, that is the system. It was the main reason for the legal argument in this case - see the statement from GOSH's barrister posted above...


    6. As to the disagreements, one is a difference of opinion about the risks, benefits and
    ethics of providing four compound nucleoside treatment for Charlie after a time when
    his brain had become profoundly affected by his genetic disease. The other has been a
    more fundamental and unbridgeable divide of principle.

    7. Charlie’s parents fundamentally believe that they alone have the right to decide what
    treatment Charlie has and does not have. They do not believe that Great Ormond Street
    should have had the right to apply to the Court for an independent, objective decision
    to be made. They do not believe that there is any role for a Judge or a court. They
    believe that only they can and should speak for Charlie and they have said many times
    that they feel they have been stripped of their rights as parents.

    8. GOSH holds and is bound by different principles. A world where only parents speak
    and decide for children and where children have no separate identity or rights and no
    court to hear and protect them is far from the world in which GOSH treats its child
    patients.

    9. Throughout this court process, Charlie has been represented by his Cafcass Guardian
    who has visited him in hospital, spoken to Charlie’s parents, nurses and doctors and
    written reports that ensure that as much as is possible for a desperately unwell baby,
    Charlies own viewpoint is articulated and given weight. When asked what happens to
    the role of the Guardian if their belief that only they have the right to decide on Charlie’s
    treatment is correct, Charlie’s parents answer that he does not need a Guardian because
    they will speak for him.

    10. GOSH believes in its core that every patient is his or her own, unique and special person
    and that it owes a duty of care to each. The hospital’s mission statement is “The child
    first and always” and the hospital does not treat any child differently or as less of an
    individual because of the severity of illness or disability or because of infancy. If
    anything, special care is given to discover and work out with parents what is best for
    very vulnerable patients who cannot speak for themselves.

    11. This is not just Great Ormond Street’s core belief, it is its duty. The GMC’s Guidance
    “0-18 years: guidance for all doctors” emphasises two matters in particular. The first
    is treating children as individuals and acting in the child’s best interests. The second is,
    if it is necessary to do so, putting the child first. Paragraph 4 of the Guidance says:
    “When treating children and young people, doctors must also consider parents and
    others close to them but their patient must be the doctor’s first concern.”
  • edited July 2017
    Jints said:

    Fiiish said:



    And until we fix the system so that the welfare of the patient is put first this won't be the last undignified campaign we see of this sort.

    Err, that is the system. It was the main reason for the legal argument in this case - see the statement from GOSH's barrister posted above...


    6. As to the disagreements, one is a difference of opinion about the risks, benefits and
    ethics of providing four compound nucleoside treatment for Charlie after a time when
    his brain had become profoundly affected by his genetic disease. The other has been a
    more fundamental and unbridgeable divide of principle.

    7. Charlie’s parents fundamentally believe that they alone have the right to decide what
    treatment Charlie has and does not have. They do not believe that Great Ormond Street
    should have had the right to apply to the Court for an independent, objective decision
    to be made. They do not believe that there is any role for a Judge or a court. They
    believe that only they can and should speak for Charlie and they have said many times
    that they feel they have been stripped of their rights as parents.

    8. GOSH holds and is bound by different principles. A world where only parents speak
    and decide for children and where children have no separate identity or rights and no
    court to hear and protect them is far from the world in which GOSH treats its child
    patients.

    9. Throughout this court process, Charlie has been represented by his Cafcass Guardian
    who has visited him in hospital, spoken to Charlie’s parents, nurses and doctors and
    written reports that ensure that as much as is possible for a desperately unwell baby,
    Charlies own viewpoint is articulated and given weight. When asked what happens to
    the role of the Guardian if their belief that only they have the right to decide on Charlie’s
    treatment is correct, Charlie’s parents answer that he does not need a Guardian because
    they will speak for him.

    10. GOSH believes in its core that every patient is his or her own, unique and special person
    and that it owes a duty of care to each. The hospital’s mission statement is “The child
    first and always” and the hospital does not treat any child differently or as less of an
    individual because of the severity of illness or disability or because of infancy. If
    anything, special care is given to discover and work out with parents what is best for
    very vulnerable patients who cannot speak for themselves.

    11. This is not just Great Ormond Street’s core belief, it is its duty. The GMC’s Guidance
    “0-18 years: guidance for all doctors” emphasises two matters in particular. The first
    is treating children as individuals and acting in the child’s best interests. The second is,
    if it is necessary to do so, putting the child first. Paragraph 4 of the Guidance says:
    “When treating children and young people, doctors must also consider parents and
    others close to them but their patient must be the doctor’s first concern.”
    Yet the public have been subjected to a horrible spectacle that has been largely pushed along by people making false promises to the parents to encourage them to take the legal battle as far as it has. Some part of the system must be fundamentally flawed to allow this to have come so far. In what way is that in the interests of the child's and the parents' dignity?
  • The case has been going on for 4 months, it went through the high court, court of appeal, supreme court and European Court of Human Rights. The outside influences have been involved only since the beginning of this month after the ECHR decided not to intervene. The parents drove this legal case forward, nobody else. If you want to prevent something like this happening, you would have to ban any judicial challenges to decisions by the state.

  • Jints said:

    The case has been going on for 4 months, it went through the high court, court of appeal, supreme court and European Court of Human Rights. The outside influences have been involved only since the beginning of this month after the ECHR decided not to intervene. The parents drove this legal case forward, nobody else. If you want to prevent something like this happening, you would have to ban any judicial challenges to decisions by the state.

    I'm only going by from what I've read. The parents were given false hope by a doctor who convinced them he could save their child and their legal fight was driven forward on this hope (as all the other medical evidence pointed towards that the child would not recover). The evidence has been put forward that the doctor was not acting scrupulously. I am not saying GOSH or other doctors should be given carte blanche to decide who lives and dies without legal challenge, I'm just lamenting a system where a tragic case like this can be hijacked by less than salubrious sorts.
  • I just hope the poor mite will not suffer for too much longer. Absolutely tragic.
  • Fiiish said:

    Jints said:

    Fiiish said:



    And until we fix the system so that the welfare of the patient is put first this won't be the last undignified campaign we see of this sort.

    Err, that is the system. It was the main reason for the legal argument in this case - see the statement from GOSH's barrister posted above...


    6. As to the disagreements, one is a difference of opinion about the risks, benefits and
    ethics of providing four compound nucleoside treatment for Charlie after a time when
    his brain had become profoundly affected by his genetic disease. The other has been a
    more fundamental and unbridgeable divide of principle.

    7. Charlie’s parents fundamentally believe that they alone have the right to decide what
    treatment Charlie has and does not have. They do not believe that Great Ormond Street
    should have had the right to apply to the Court for an independent, objective decision
    to be made. They do not believe that there is any role for a Judge or a court. They
    believe that only they can and should speak for Charlie and they have said many times
    that they feel they have been stripped of their rights as parents.

    8. GOSH holds and is bound by different principles. A world where only parents speak
    and decide for children and where children have no separate identity or rights and no
    court to hear and protect them is far from the world in which GOSH treats its child
    patients.

    9. Throughout this court process, Charlie has been represented by his Cafcass Guardian
    who has visited him in hospital, spoken to Charlie’s parents, nurses and doctors and
    written reports that ensure that as much as is possible for a desperately unwell baby,
    Charlies own viewpoint is articulated and given weight. When asked what happens to
    the role of the Guardian if their belief that only they have the right to decide on Charlie’s
    treatment is correct, Charlie’s parents answer that he does not need a Guardian because
    they will speak for him.

    10. GOSH believes in its core that every patient is his or her own, unique and special person
    and that it owes a duty of care to each. The hospital’s mission statement is “The child
    first and always” and the hospital does not treat any child differently or as less of an
    individual because of the severity of illness or disability or because of infancy. If
    anything, special care is given to discover and work out with parents what is best for
    very vulnerable patients who cannot speak for themselves.

    11. This is not just Great Ormond Street’s core belief, it is its duty. The GMC’s Guidance
    “0-18 years: guidance for all doctors” emphasises two matters in particular. The first
    is treating children as individuals and acting in the child’s best interests. The second is,
    if it is necessary to do so, putting the child first. Paragraph 4 of the Guidance says:
    “When treating children and young people, doctors must also consider parents and
    others close to them but their patient must be the doctor’s first concern.”
    Yet the public have been subjected to a horrible spectacle that has been largely pushed along by people making false promises to the parents to encourage them to take the legal battle as far as it has. Some part of the system must be fundamentally flawed to allow this to have come so far. In what way is that in the interests of the child's and the parents' dignity?
    I read above that the child had some form of guardian from Cafcass. But I have not seen (perhaps I've missed it) that there was a Guardian ad litem appointed by the Court to represent the rights of the child. Perhaps they are one and the same? However it is clear that the parents were delusional and should not have been in a position to be able to extend the unnecessary suffering of this unfortunate baby. They have not covered themselves with glory on this one have they? They certainly are not best placed to make the best decisions. The fact that they didn't understand this point only underscores it.
    I would add that they appeared to have got an easy ride from UK media. Perhaps understandably. But that has only gone a long way towards worsening the antagonism and threats made to staff at GOSH by the ignorant,religious fruitcakes and the downright mad. It has all been most unedifying.
  • Rizzo said:

    I just hope the poor mite will not suffer for too much longer. Absolutely tragic.

    Now they are disputing how and where he should be allowed to die.

    All very sad and bitter.

    I suspect we won't hear the last of this even after Charlie does pass away.


    http://www.bbc.co.uk/news/uk-england-london-40716292
  • Rizzo said:

    I just hope the poor mite will not suffer for too much longer. Absolutely tragic.

    Now they are disputing how and where he should be allowed to die.

    All very sad and bitter.

    I suspect we won't hear the last of this even after Charlie does pass away.


    http://www.bbc.co.uk/news/uk-england-london-40716292
    I'm guessing the parents would want to have time with Charlie away from the hospital as they feel anger towards them. I've felt sympathy towards the parents but am now thinking that wanting to take Charlie home is about what they want rather than what is best for their son.

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  • edited July 2017
    .
  • edited July 2017
    .
  • cafcfan said:

    Fiiish said:

    Jints said:

    Fiiish said:



    And until we fix the system so that the welfare of the patient is put first this won't be the last undignified campaign we see of this sort.

    Err, that is the system. It was the main reason for the legal argument in this case - see the statement from GOSH's barrister posted above...


    6. As to the disagreements, one is a difference of opinion about the risks, benefits and
    ethics of providing four compound nucleoside treatment for Charlie after a time when
    his brain had become profoundly affected by his genetic disease. The other has been a
    more fundamental and unbridgeable divide of principle.

    7. Charlie’s parents fundamentally believe that they alone have the right to decide what
    treatment Charlie has and does not have. They do not believe that Great Ormond Street
    should have had the right to apply to the Court for an independent, objective decision
    to be made. They do not believe that there is any role for a Judge or a court. They
    believe that only they can and should speak for Charlie and they have said many times
    that they feel they have been stripped of their rights as parents.

    8. GOSH holds and is bound by different principles. A world where only parents speak
    and decide for children and where children have no separate identity or rights and no
    court to hear and protect them is far from the world in which GOSH treats its child
    patients.

    9. Throughout this court process, Charlie has been represented by his Cafcass Guardian
    who has visited him in hospital, spoken to Charlie’s parents, nurses and doctors and
    written reports that ensure that as much as is possible for a desperately unwell baby,
    Charlies own viewpoint is articulated and given weight. When asked what happens to
    the role of the Guardian if their belief that only they have the right to decide on Charlie’s
    treatment is correct, Charlie’s parents answer that he does not need a Guardian because
    they will speak for him.

    10. GOSH believes in its core that every patient is his or her own, unique and special person
    and that it owes a duty of care to each. The hospital’s mission statement is “The child
    first and always” and the hospital does not treat any child differently or as less of an
    individual because of the severity of illness or disability or because of infancy. If
    anything, special care is given to discover and work out with parents what is best for
    very vulnerable patients who cannot speak for themselves.

    11. This is not just Great Ormond Street’s core belief, it is its duty. The GMC’s Guidance
    “0-18 years: guidance for all doctors” emphasises two matters in particular. The first
    is treating children as individuals and acting in the child’s best interests. The second is,
    if it is necessary to do so, putting the child first. Paragraph 4 of the Guidance says:
    “When treating children and young people, doctors must also consider parents and
    others close to them but their patient must be the doctor’s first concern.”
    Yet the public have been subjected to a horrible spectacle that has been largely pushed along by people making false promises to the parents to encourage them to take the legal battle as far as it has. Some part of the system must be fundamentally flawed to allow this to have come so far. In what way is that in the interests of the child's and the parents' dignity?
    I read above that the child had some form of guardian from Cafcass. But I have not seen (perhaps I've missed it) that there was a Guardian ad litem appointed by the Court to represent the rights of the child. Perhaps they are one and the same? However it is clear that the parents were delusional and should not have been in a position to be able to extend the unnecessary suffering of this unfortunate baby. They have not covered themselves with glory on this one have they? They certainly are not best placed to make the best decisions. The fact that they didn't understand this point only underscores it.
    I would add that they appeared to have got an easy ride from UK media. Perhaps understandably. But that has only gone a long way towards worsening the antagonism and threats made to staff at GOSH by the ignorant,religious fruitcakes and the downright mad. It has all been most unedifying.
    Completely unfair on the parents. They have been taken advantage of many parties including the U.K. Media.

    It would be impossible for a parent to remain objective in this situation, and this is why the case has ended the way it has. They have been emboldened by irresponsible parties that include the pope and POTUS who have added their thoughts despite knowing nothing more about the case than the average British punter. The system has worked, albeit in the full glare of the media.

    All too easy to sit on the sidelines and judge the motives and actions of two grief stricken people that clearly want the best for their child, despite appearing to be wrong about their view.

    GOSH have dealt with the whole situation in an exemplary way despite what I am sure was incredible pressure.
    Not completely unfair at all in my opinion. They have not been best placed to be involved in the decision-making at all, as has been all too clearly, and sadly, demonstrated. Which is why I said that the Court should have appointed a Guardian Ad Litem to act in the best interests of the child and in the parents' stead. The parents should not have been in a position to drag out this dreadful situation as much as they have. Indeed, we now have the unedifying situation of then demanding that the poor lamb goes home to die. The hospital have explained that Charlie's condition requires air to be forced into his lungs.As far as the hospital was aware invasive ventilation can only be provided in a hospital setting. Indeed the ventilation equipment would not be able to fit through the parents front door! Yet still they bang on about wanting him to die at home. They want what they want with no apparent consideration for what is best for the child at all.

    If parents of a fit child had (wanted to) treat their children in this way, they would have been taken into care! It's like they see the poor kid as some form of possession rather than a human life. I don't see how you can say they want the best for their child when they have clearly demonstrated that they do not.
  • edited July 2017
    .
  • I'm afraid to say that I'm losing both patience with and sympathy for the parents. Instead of doing what is best for Charlie they seem hell bent on doing what is best for them.
  • edited July 2017
    Interesting input from a mediator on the BBC regards entrenched positions and trying to break that down, like a culture of the fight creeps in. I've definitely found myself losing patience with them, but then I reflect and I just refuse to believe that they believe their motivation is any thing other than fundamentally good, even though they are wrong.

    I guess it comes down to psychology and not really a discussion for me on a football forum.
  • Why isn't it?
  • Why isn't it?

    Fair enough. Edited.
  • What on earth do you think their motive is then?

    I really have only one theory as to what their motives are. That is that there may be some religious doctrine at play. But that's just speculation. Do you think they want what's best for the child?
  • cafcfan said:

    What on earth do you think their motive is then?

    I really have only one theory as to what their motives are. That is that there may be some religious doctrine at play. But that's just speculation. Do you think they want what's best for the child?
    I do, I just think they are completely wrong on what that is.
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  • cafcfan said:

    What on earth do you think their motive is then?

    I really have only one theory as to what their motives are. That is that there may be some religious doctrine at play. But that's just speculation. Do you think they want what's best for the child?
    I think they believe they do.

    I also think they are vulnerable and have been taken advantage of.

    I don't believe what they believe is in the child's best interest, however.
  • I think they do. I think religion comes into it, but more likely the religion of others. They are in a difficult position, in many ways their son looks like any other baby and he was a normal baby when he was born. It must be difficult to come to terms with and then somebody who hasn't examined Charlie gives them hope - and pro lifers jump in.

    Anger can be fuelled by grief and we should not condemn them. But little Charlie should be viewed in this as an independant human being and not the property of his parents. As a parent, you do not own your kids, you are their guardians. This is the important principal in all this. The doctors are doing what is best for Charlie.
  • Fiiish said:

    Jints said:

    The case has been going on for 4 months, it went through the high court, court of appeal, supreme court and European Court of Human Rights. The outside influences have been involved only since the beginning of this month after the ECHR decided not to intervene. The parents drove this legal case forward, nobody else. If you want to prevent something like this happening, you would have to ban any judicial challenges to decisions by the state.

    I'm only going by from what I've read. The parents were given false hope by a doctor who convinced them he could save their child and their legal fight was driven forward on this hope (as all the other medical evidence pointed towards that the child would not recover). The evidence has been put forward that the doctor was not acting scrupulously. I am not saying GOSH or other doctors should be given carte blanche to decide who lives and dies without legal challenge, I'm just lamenting a system where a tragic case like this can be hijacked by less than salubrious sorts.
    Funny how Trump stuck his oar in at this point.

    Probably got links to the medical company somewhere down the line.
  • cafcfan said:

    What on earth do you think their motive is then?

    I really have only one theory as to what their motives are. That is that there may be some religious doctrine at play. But that's just speculation. Do you think they want what's best for the child?
    I think they believe they do.

    I also think they are vulnerable and have been taken advantage of.

    I don't believe what they believe is in the child's best interest, however.
    agree entirely

  • edited July 2017

    Fiiish said:

    Jints said:

    The case has been going on for 4 months, it went through the high court, court of appeal, supreme court and European Court of Human Rights. The outside influences have been involved only since the beginning of this month after the ECHR decided not to intervene. The parents drove this legal case forward, nobody else. If you want to prevent something like this happening, you would have to ban any judicial challenges to decisions by the state.

    I'm only going by from what I've read. The parents were given false hope by a doctor who convinced them he could save their child and their legal fight was driven forward on this hope (as all the other medical evidence pointed towards that the child would not recover). The evidence has been put forward that the doctor was not acting scrupulously. I am not saying GOSH or other doctors should be given carte blanche to decide who lives and dies without legal challenge, I'm just lamenting a system where a tragic case like this can be hijacked by less than salubrious sorts.
    Funny how Trump stuck his oar in at this point.

    Probably got links to the medical company somewhere down the line.
    He ceratinly doesn't seem to care enough to do anything about the disgusting infant mortality rate of the US, mostly driven about how it cares for its poor. It is significantly worse than Cuba!
  • edited July 2017
    Let's not make this about Trump.

    Far more importantly is how this poor baby gets to finally rest. For me GOSH using the line ''it's impractical'' is evident that it is maybe more difficult of a thing to do than being the wrong thing.



    Before the treatment (at a much earlier stage of progression) may have been able to save the child, because of the many delays, this was not the case and the family had the option to take Charlie home to die, they have finally realised this was their best option.

    Brutally once again delays have caused another issue for the family, where before they could have taken him home to die, now they can't.

    It is truly sad to see what this American doctor has put them through. He should have come clean sooner and said that it's unlikely that his treatment would do a thing, especially without seeing all the paperwork himself.

  • cafcfan said:

    What on earth do you think their motive is then?

    I really have only one theory as to what their motives are. That is that there may be some religious doctrine at play. But that's just speculation. Do you think they want what's best for the child?
    I think they believe they do.

    I also think they are vulnerable and have been taken advantage of.

    I don't believe what they believe is in the child's best interest, however.
    Couldn't agree more. Any parent would be vulnerable in a situation like this.
  • How is our beloved tabloid press covering this? I noticed a Sun front page with more than a hint of vicarious grief-porn and whipping-up of the bulldog spirit. Is it time to SHUT DOWN the SHAMBLES that is the NHS?
  • Dazzler21 said:

    Let's not make this about Trump.

    Far more importantly is how this poor baby gets to finally rest. For me GOSH using the line ''it's impractical'' is evident that it is maybe more difficult of a thing to do than being the wrong thing.

    Before the treatment (at a much earlier stage of progression) may have been able to save the child, because of the many delays, this was not the case and the family had the option to take Charlie home to die, they have finally realised this was their best option.

    Brutally once again delays have caused another issue for the family, where before they could have taken him home to die, now they can't.

    It's not the delays that have meant they can't take him home to die, it's the fact that they can't get the ventilator through the damn door into their house! That's why GOSH are recommending hospice care, so they can get away from the hospital but still have appropriate palliative care for him.
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