Charlie Gard

Author
Discussion

The Surveyor

7,576 posts

236 months

Monday 24th July 2017
quotequote all
SydneyBridge said:
I cannot see how any Med Neg' claim could be made as a result of this

..... -either way they could not win
They have a decent fighting fund to bring a claim and they will have 'advisors' encouraging them to do so. Whether such a claim has any chance of success is another matter.

Blue Cat

976 posts

185 months

Monday 24th July 2017
quotequote all
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...


bitchstewie

50,767 posts

209 months

Monday 24th July 2017
quotequote all
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Similarly I'd also suggest everyone listens to the fathers latest statement.

Words fail me as to how the bloke managed to do that.

amusingduck

9,396 posts

135 months

Monday 24th July 2017
quotequote all
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Wow.

It was at this point that I lost all respect for the parents -

GOSH said:
At the first hearing in Charlie’s case in March, GOSH’s position was that every day
that passed was a day that was not in his best interests. That remains its view of his
welfare. Even now, Charlie shows physical responses to stressors that some of those
treating him interpret as pain and when two international experts assessed him last
week, they believed that they elicited a pain response. In GOSH’s view there has been
no real change in Charlie’s responsiveness since January. Its fear that his continued
existence has been painful to him has been compounded by the Judge’s finding, in
April, that since his brain became affected by RRM2B, Charlie’s has been an existence
devoid of all benefit and pleasure. If Charlie has had a relationship with the world
around him since his best interests were determined, it has been one of suffering.
Disgraceful.

V8LM

5,166 posts

208 months

Monday 24th July 2017
quotequote all
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Unbelievable.

Statement said:
On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie

andymadmak

14,482 posts

269 months

Monday 24th July 2017
quotequote all
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Indeed a sobering read.

This piece stands out for me

GOSH statement said:
In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case that might enrich the care it provides to its most vulnerable patients and families. It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.
Taken in the context of the statement as a whole, that's about as damning a statement as I have ever seen from one set of medical professionals about one of their colleagues.

Dan_1981

17,351 posts

198 months

Monday 24th July 2017
quotequote all
bhstewie said:
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Similarly I'd also suggest everyone listens to the fathers latest statement.

Words fail me as to how the bloke managed to do that.
As much as I disagree with the parents actions and stance, I have no idea how he managed to make that speech.

The legal guy and security guy stood behind him looked very moved.

Not sure I could have done it.


kev1974

4,029 posts

128 months

Monday 24th July 2017
quotequote all
FN2TypeR said:
Sky News:

Charlie Gard's father says "had Charlie been given treatment sooner he would have had the potential to be a normal, healthy boy"

Mercy, I appreciate that the truth in this situation is a difficult thing to come to terms with, but still, he's not willing to accept it at all is he?
Poor Charlie is at least deaf and blind as it is, so he's never going to be a "normal" boy.

FN2TypeR

7,091 posts

92 months

Monday 24th July 2017
quotequote all
Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie

Say no more

wobert

5,010 posts

221 months

Monday 24th July 2017
quotequote all
V8LM said:
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Unbelievable.

Statement said:
On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie
So on the basis of the GOSH statement, how can the father's statement be so wide of the mark, when no examination took place until last week, nor review of the child's records, scans or second opinions?

Sa Calobra

37,006 posts

210 months

Monday 24th July 2017
quotequote all
The parents just said in their press talk that if Charlie had had the treatment sooner he would have been a 'normal healthy young boy'.

With this in mind I can't see them not taking further legal action for compensation.

Their legal team provided their services to the family for free. I wonder what their costs will be.

Slaav

4,240 posts

209 months

Monday 24th July 2017
quotequote all
andymadmak said:
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Indeed a sobering read.

This piece stands out for me

GOSH statement said:
In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case that might enrich the care it provides to its most vulnerable patients and families. It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.
Taken in the context of the statement as a whole, that's about as damning a statement as I have ever seen from one set of medical professionals about one of their colleagues.
Indeed; that is one hell of a damning statement and due to being such an internationally renowned and high profile case, just means it is even more powerful!

I started losing all faith in the Hirano(?) character when it was confirmed that he was invited across back at the start of the year but not only declined to do so, didn't even read the notes or take a particular interest in the case? One would think that in such rare cases, every leading expert or knowledge base would do everything they could to read all supporting material and treat it as one community - 'our' fears that this was a monetary decision on the US part may well be correct I fear.




anonymous-user

53 months

Monday 24th July 2017
quotequote all
A damning statement indeed. It makes for very somber reading.


Wiccan of Darkness

1,837 posts

82 months

Monday 24th July 2017
quotequote all
GloverMart said:
Wiccan - for goodness sake, can't you get hold of the father and explain it to him as well as you've done it for us on here?
Miracles I do all the time; the impossible takes a little longer.

Had a very disturbing email from a fellow PH'er who has been linking this forum on social media and emailed me to express the exasperation they suffered when social media, not liking what they were seeing, simply hounded the poster. Herein lies a serious point, in that the social media warriors have been on some moral high ground crusade.

I'm reading the position statement by GOSH released today and it makes for sobering reading. As statements go, it is one of the most professionally damning I have ever read. The link is below, but in short the statement details the treatment options, the inevitable outcome and the fact that Professor Hirano had not even bothered to view the medical notes, nor view the patient until 18th July.

Today, in court, Professor Hirano revealed he had a vested financial interest in the treatment which highlights the complete lunacy of the capitalist healthcare system.

The link to the statement

file:///C:/Users/user/Downloads/Great%20Ormond%20S... (hope it works)

Meanwhile, I hear Chris Gard has stated that had treatment begun earlier, Charlie would have had the chance to grow to be a perfectly normal, healthy boy.

Wiccan of Darkness

1,837 posts

82 months

Monday 24th July 2017
quotequote all
Urgh, the link does not work. I have copied and pasted the position statement instead.

Katie Gollop QC on behalf of GOSH said:
1. The hearts of all at GOSH go out to Connie Yates and Chris Gard. Over the weekend,
they communicated their desire to spend all the time they can with Charlie whilst
working with the hospital to formulate the best possible plan for his end of life care.
The agony, desolation and bravery of their decision command GOSH’s utmost respect
and humble all who work there. Whilst GOSH has striven to work with them
throughout, Charlie’s needs have taken priority. It is greatly hoped that in the days
ahead, it will be possible to extend to his parents the same quality of care with which
Charlie has been provided and to concentrate on the family as a whole.

2. Charlie’s parents have fought long and hard for what they have been led to believe was
a treatment that would give him a chance to be the Charlie he was before the effects of
his illness became evident. Since nucleoside treatment (“NBT”) is not invasive when
added to food and there is no evidence that it has caused significant damage to the TK2
deficient patients to whom it has been administered, they have, rightly and urgently,
sought to know: Why not give Charlie that chance? What does he have to lose? They
feel now, and perhaps will feel for some long time to come, that if only GOSH had
treated Charlie months ago, they would have been spared the impossible decision they
make now.

3. These deeply affecting questions deserve answers. From the moment of his diagnosis
at GOSH, Charlie’s prognosis was known to be bleak. The early infantile onset of his
extraordinarily rare disease, his generalised myopathy and the respiratory failure which
left him dependent on a ventilator, were all factors indicating that his life’s span was
likely to be very limited indeed. Despite the sombre prognosis, GOSH’s mitochondrial
expert contacted counterparts across the world, including Professor Hirano, to explore
the possibility of experimental treatment, NBT.

4. No animal or human with Charlie’s condition, RRM2B deficiency (“RRM2B”), has
been treated with NBT and therefore an application to the Rapid Response Clinical
Ethics Committee was prepared in January. NBT was and is a possible treatment for
GOSH patients suffering with TK2 deficiency (“TK2”), a similar genetic disorder, but
there is a crucial difference between the two conditions. TK2 affects muscle (and is
treated with 2 compounds) whereas RRM2B affects muscle, other organs and brain
(and would be treated with 4 compounds – see GOSH’s Position Statement of 13 July,
paragraph 18).

5. Charlie started having seizures before Christmas, those being a recognised
complication of infantile onset RRM2B. Shortly before the planned ethics committee
application, he suffered increased seizure frequency and likely severe epileptic
encephalopathy. The entire treating team (acknowledged by the mitochondrial centres
in New York and Rome to be their equal) formed the view that Charlie had suffered
irreversible neurological damage and that as a result, any chance that NBT might have
had of benefitting Charlie had departed. That sad conclusion led to the best interests
application made in February and decided by the High Court on 11 April 2017.

6. Charlie’s parents believe that his brain was not damaged, that it was normal on MRI
scan in January and that treatment could have been effective at that time during the
months that followed. There remains no agreement on these issues. GOSH treats
patients and not scans. All aspects of the clinical picture and all of Charlie’s
observations indicated that his brain was irreversibly damaged and that NBT was futile.
Those were the Judge’s findings in April, upheld on appeal in May and on further
appeal in June. As the weeks have passed, the unstoppable effects of Charlie’s
aggressive, progressive, depletive disorder have become plainer to see.

7. At the first hearing in Charlie’s case in March, GOSH’s position was that every day
that passed was a day that was not in his best interests. That remains its view of his
welfare. Even now, Charlie shows physical responses to stressors that some of those
treating him interpret as pain and when two international experts assessed him last
week, they believed that they elicited a pain response. In GOSH’s view there has been
no real change in Charlie’s responsiveness since January. Its fear that his continued
existence has been painful to him has been compounded by the Judge’s finding, in
April, that since his brain became affected by RRM2B, Charlie’s has been an existence
devoid of all benefit and pleasure. If Charlie has had a relationship with the world
around him since his best interests were determined, it has been one of suffering.

8. Throughout, his parents’ hopes have been sustained by advice received from overseas.
Mitochondrial disorders comprise a specialised and small international field. The
experts in that field meet, collaborate and exchange ideas on a very regular basis and it
is that valued collaboration that allows progress to be made and patients to be provided
with the best possible care. Professor Hirano (“the Professor”), whose laboratory
research has an international reputation, is very well known to the experts at GOSH and
he communicated with them about NBT treatment for Charlie at the very end of
December. In January, GOSH invited the Professor to come and see Charlie. That
invitation remained open at all times but was not taken up until 18 July after being
extended, once again, this time by the Court.

9. In the months between January and July, the Professor provided written and oral
evidence for the best interests hearing in April and, after the Court decided that NBT
was not in Charlie’s best interests, he went on to provide further written evidence for
the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the
letter indicating that he had new information that changed the picture for Charlie, that
brought this case back before the High Court.

10. When the hospital was informed that the Professor had new laboratory findings causing
him to believe NBT would be more beneficial to Charlie than he had previously opined,
GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.
It was, therefore, with increasing surprise and disappointment that the hospital listened
to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he
not visited the hospital to examine Charlie but in addition, he had not read Charlie’s
contemporaneous medical records or viewed Charlie’s brain imaging or read all of the
second opinions about Charlie’s condition (obtained from experts all of whom had
taken the opportunity to examine him and consider his records) or even read the Judge’s
decision made on 11 April. Further, GOSH was concerned to hear the Professor state,
for the first time, whilst in the witness box, that he retains a financial interest in some
of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the
information obtained since 13 July gives no cause for optimism. Rather, it confirms that
whilst NBT may well assist others in the future, it cannot and could not have assisted
Charlie.

11. In the months ahead, all at GOSH will be giving careful thought to what they can learn
from this bruising court case that might enrich the care it provides to its most vulnerable
patients and families. It is hoped that those who, like the Professor, have provided the
opinions that have so sustained Charlie’s parents, their hopes and thus this protracted
litigation with its many consequences, will also find much upon which to reflect.

12. GOSH is a tertiary referral centre and a centre of research excellence. It celebrates and
enthuses about gene therapy and experimental treatment of all types. But it also believes
in its patients as people. The hospital strives to work with children and parents to strike
a balance of treatment benefits and burdens that combines evidence and compassion.
Where that balance falls ethically in favour of pioneering treatment, GOSH shares each
family’s excitement at the journey that follows. GOSH believes that novel therapies are
best provided in the context of formal clinical trials. The hospital does not treat its most
vulnerable children simply because it can and on no account does it treat them purely
because novel treatment furthers GOSH’s research.

13. For its part, GOSH rededicates itself to working with each child and each child’s family
to discern, as best as the art of medicine and the most modern advances in science allow,
the treatment options most consistent with the best interests of each. That is the
hospital’s duty of care and each child, whether treated at GOSH or elsewhere, deserves
no less.

14. The Judge has said that were his view heeded, mediation would be compulsory. Those
words will not be forgotten by GOSH and more will be done in that regard. If and when
mediation is not wholly successful, it is right that the Court and not any doctor, team or
organisation determines a child’s best interests. The Court’s difficult task in this case
would have been close to impossible were it not for the able and tireless pro bono
assistance provided to Charlie’s parents by two teams of solicitors and barristers. GOSH
wishes to thank them all. GOSH also wishes to thank Mr. Justice Francis for his
decision making and for hearing and guiding the parties with such sensitivity and
wisdom.

15. All of GOSH’s thoughts go with Charlie and his mother and father - the hospital wishes
each of them peace in their hearts at the end of this day and each day to come.

KATIE GOLLOP QC
24 July 2017
Serjeants’ Inn Chambers
Later tonight I'll go through this statement, condense it and explain quite how scathing this really is.

GloverMart

11,773 posts

214 months

Monday 24th July 2017
quotequote all
Wiccan of Darkness said:
GloverMart said:
Wiccan - for goodness sake, can't you get hold of the father and explain it to him as well as you've done it for us on here?
Miracles I do all the time; the impossible takes a little longer.

Had a very disturbing email from a fellow PH'er who has been linking this forum on social media and emailed me to express the exasperation they suffered when social media, not liking what they were seeing, simply hounded the poster. Herein lies a serious point, in that the social media warriors have been on some moral high ground crusade.

I'm reading the position statement by GOSH released today and it makes for sobering reading. As statements go, it is one of the most professionally damning I have ever read. The link is below, but in short the statement details the treatment options, the inevitable outcome and the fact that Professor Hirano had not even bothered to view the medical notes, nor view the patient until 18th July.

Today, in court, Professor Hirano revealed he had a vested financial interest in the treatment which highlights the complete lunacy of the capitalist healthcare system.

The link to the statement

file:///C:/Users/user/Downloads/Great%20Ormond%20S... (hope it works)

Meanwhile, I hear Chris Gard has stated that had treatment begun earlier, Charlie would have had the chance to grow to be a perfectly normal, healthy boy.
Thanks again, Wiccan. You don;t fancy bringing your unique brand of common sense, factual based comments over to some of the football threads, do you?

Oh, hang on, I've just read the first line of your last post again.... hehe

Seriously though, I can only read a few comments on the Charlie Gard's Fight Facebook page before getting increasingly annoyed at the naivety, ignorance and sheer lying that goes on there. Can't see many anti=parent posts on there which tends to confirm what you said; there was some on there the other day, not exactly anti-parent but more balanced opinion, shall we say, but they were soon let loose to the dogs. Guess they don't bother commenting on there any more.


Murph7355

37,649 posts

255 months

Monday 24th July 2017
quotequote all
Wiccan of Darkness said:
Later tonight I'll go through this statement, condense it and explain quite how scathing this really is.
I'm not sure anyone who can read could see 8, 9 and 10 as anything other than a damning indictment of the professionalism and ulterior motives of Professor Hirano.

He should be struck off if that stuff is true, and I strongly suspect it will be 100% on the money.

It would not surprise me in the slightest if the father's latest statement ref earlier treatment doesn't stem from conversations with Hirano.

Vizsla

922 posts

123 months

Monday 24th July 2017
quotequote all
Wiccan of Darkness said:
Meanwhile, I hear Chris Gard has stated that had treatment begun earlier, Charlie would have had the chance to grow to be a perfectly normal, healthy boy.
There are times when the expression "words fail me" is desperately, painfully, hopelessly, inadequate. frown

Henners

12,230 posts

193 months

Monday 24th July 2017
quotequote all
Vizsla said:
Wiccan of Darkness said:
Meanwhile, I hear Chris Gard has stated that had treatment begun earlier, Charlie would have had the chance to grow to be a perfectly normal, healthy boy.
There are times when the expression "words fail me" is desperately, painfully, hopelessly, inadequate. frown
The headlines from Sky News don't really help:



Writing as though the parents had been denied something worthwhile.

TheSnitch

2,342 posts

153 months

Monday 24th July 2017
quotequote all
andymadmak said:
Blue Cat said:
Everyone should be forced to read the latest GOSH statement before they make a comment and very interesting remarks about the American Doctor

http://www.gosh.nhs.uk/news/latest-press-releases/...
Indeed a sobering read.

This piece stands out for me

GOSH statement said:
In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case that might enrich the care it provides to its most vulnerable patients and families. It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.
Taken in the context of the statement as a whole, that's about as damning a statement as I have ever seen from one set of medical professionals about one of their colleagues.
I think what is also very damning is that these experts are a very close-knit group; they collaborate on research, they sit together on various panels and advisory boards, they regularly present at the same conferences and symposia. Therefore, they tend to be closer than those working in more general fields. The entire incident will reverberate for some time, in my opinion