Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

I do think that the email wording was in very poor taste and judgement, & too informal, despite clinical excellence and patient best interests. You can say that again.

Sounds as if it was the only one in thousands of emails and written notes though, on the positive side.

news.sky.com/story/sky-views-charlie-gard-was-exploited-10968310

I do wish that people would stop pretending that disability equals terminal illness. It not the same thing at all. (I don't mean people here; I'm just getting sick of seeing idiots, including journalists, talking as if the two things actualy equated.)

I do wish that people would stop pretending that disability equals terminal illness.

I do agree, but poor Charlie had a terminal illness (in the fact that no-one with his exact illness was every cured and all died in infancy), the disability he incurred during his short life was symptoms of the terminal illness.

th problems with mediation is if one party refuses then what do u do

u cant force people to sit down and talk

Regarding one email out of thousands of notes, I think the way the Drs communicate when they know and understand each other's position and expertise is different to how they would express themselves to a patient and their family. The email was not intended for the parents to see and was a sort of "shorthand" between experts. An unguarded moment but the judge gave little weight to it when compared to the evidence this Dr gave in court.

Doctors need to be able communicate honestly with each other, even if it's something the patient might not like to hear or read. That doctor might have said 'parents are being obstructive' rather than 'spanner in the works', but however it was worded, it was true, and a significant factor in the case, and thus something that other doctors needed to be made aware of.

BubblesBuddy, yes I agree. The parents and legal team clearly were given access to all communication and notes, I have no doubt that if there were others similar, they would have been publicised too.

Of course there will be direct communication that may sound brusque, most of the time the family would never need to or want to see these communications. Out of thousands of notes if that is the worst description and the only one then that is just the way it is. Not nice for them to hear of course.

I would say that the email was wrong, full stop. I have personal concerns about the rise of email as a parallel clinical record without the protections of usual clinical record, but every clinician knows or should know that if they are writing about a patient, they are writing into the clinical record and creating information the patient or their representative has a right to see. It was wrong to describe the parents and their views that way. I have no doubt that it was an effect rather than a cause of a fraught relationship, but it unfortunately shows that the GOSH team were not perfect or beyond criticism in all this.

I have on many occasions deleted the contents of an email before sending. It is one thing talking amongst colleagues but I am aware that as soon as it is 'in print' it is as good as my written notes. If I wouldn't write it in my notes it doesn't go in an email. (I'm a HCP)

If a doctor is prepared to document his/her description of the parents as being a spanner in the works, I hate to think how they were being treated face to face.

was this th specialist from newcastle that said that

Good job that the judge clarified that the comment was taken out of context.

Here's a fuller report that quotes the email: www.pressreader.com/uk/daily-mail/20170406/281569470579833

thanks monty it sounds bettr so to speak in context

it still doesnt warrant gosh being called murderers

Still, if it was the newcastle professor that said that, whatever the rights and wrongs, it wasn't Gosh that said it was it?

So basically "the hold up has been the exploration of alternative treatment , headed by the parents". That's a bit better than what I first took it as, directly calling the parents a "spanner". A bit cold and casual, but true.

Well yes, the issue's never been the accuracy of the comment has it? That doctor clearly needs some lessons on the implications of data protection laws, stat, but it's an appropriate description of the facts.

Ach, there is no defending that email other than to say that doctors/HCP are also people and while they are trained and understand that they very often do not see people at their best and that stress and fear often expresses itself in aggression or unhelpful behaviour, but they also get frustrated and to the end of their tether and use poor judgement in what they put in writing.
I shudder to think what the conversations behind closed doors are likely to have been like tbh and am grateful that nothing distressing was overheard or reported.
I am not making excuses for anybody's poor choice of words, but know fine well speaking for myself that sounding off sometimes helps me to then take a big breath and put my game face on again.

I am not defending, just explaining.

I welcome a wider discussion about end of life care/choices, quality of life assessment, who should decide what and I really, really do not what to use the suffering of one little boy who has now died and his parents' ongoing agony to go over it all, so just one more thing about Charlie: he had a vanishingly rare genetic disease that stopped his cells from generating the energy they need to run. The moment he was conceived he very sadly was destined to die. At now point did Charlie have a chance - so unfair, so cruel and in the natural order of things so wrong. In no way is his story comparable to childhood cancers, disability, chronic disease etc etc.

Pacific Such a wise post. Anyone would be lucky to have you as a GP.

Dodgy ground

I think the opposite. What you say to someone face to face is likely to be a lot more tactful than what you write about them to someone else in an informal email that you are not expecting them to read. Just think what you do in your own life.

I think the judge was right not to make an issue of it. Yes - it would have been hurtful to C&C to read, but no one anticipated that they would at that point. And the doctors were thinking of the best interests of Charlie. From their point of view, it's true that the parents were being obstructive.

I don't think C&C will ever come to terms with this. Connie has always said he wasn't in pain and that the doctors were wrong about the brain damage and blindness. Even a week before the end, there was a photo of her in the Mail, holding a toy in front of the baby's open eyes, 'proving' that he could see. It's easy to understand how important it was to them to feel that Charlie knew they were there and not as sick as the hospital made out. To admit in the future that they were wrong means they have to come to terms with the unthinkable idea that they prolonged his suffering.

To admit in the future that they were wrong means they have to come to terms with the unthinkable idea that they prolonged his suffering.
But it seems that that's exactly what happened.

Bearing in mind that being in denial about someone's prognosis can't be all that rare, what made C&C take it as far as they did? I know people have surmised that they were encouraged by Charlie's Army, but is it more than that? What made them go further and fight harder than other parents in a similar position?