Charlie Gard

Sadly I suspect another court case will be on the cards. This time they will be suing GOSH for not allowing him to go to the USA sooner.

Such a shame for all concerned. Poor baby boy.

So sad, poor little boy.
You may be right gillybob.
Also how many more cases will we now see where people hold such entrenched views they won't listen to or accept expert opinion? How can the hospital itself deal better with such issues?

Will the American doctor be given access to the babies medical record and be honest in his appraisal of when his treatment could have helped? Total honesty is needed on all sides. This is a tragic situation caused by the moral dilemmas our lives now face.

I think they seemed to have reached the assumption that if he had been allowed to go to the USA sooner then his chances could have/would have been better. Not sure if this is as a result of the American doctors report/evaluation though.

Brave parents. I applaud them for everything they have done and hope they can find some peace. I also hope Charlie can die in their arms with no more publicity until it is over. I look at my healthy grandbabies and weep for the random cruelty of life.

Hasn't there always been a lot of litigation [is that the right word?]with regards health care in America. I seem to remember being told a long time ago that there were more caesarians because hospitals were afraid of being sued.

What concerns me a lot is that I know that the news media actively go out of their way to look for stories such as this one. Not sure of how much influence that has had on decisions made by the parents in this case .

....and probably coming to a hospital near you Tegan (sadly).

I can't believe the way some of the staff at GOS have been treated.

Have just seen a headline that Charlie's parents are now ready to let him go now. I haven't gone into as yet.

Yes, that was known earlier, Smithy, hence the recent posts on here.

There is a statement online from GOSH regarding the timeline for the treatment. GOSH had originally decided to treat Charlie themselves with the new treatment unfortunately the believed that the seizures he suffered from Christmas onwards made it unsuitable. The US doctor, Dr Hirano, was invited by GOSH to assess Charlie back in January - but he declined to come until last week when the court requested he examine Charlie. The GOSH statement seems quite critical that Dr Hirano has continued to offer the parents (false) hope without actually examining the baby or looking at his records. It seems that the court ordered scans and tests that were done last week have shown that he cannot be helped.
www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

Such a sad situation for the parents and I hope that they can be left alone to grieve now.

Thanks Cold. Makes for sad reading, doesn't it? Maybe the people so critical of GOSH will back off now?

Every member of Charlie's army should have to read this statement, particularly those who sent death threats to GOSH.

I'm afraid it won't end there. Many of them won't read it, and will continue with their hate campaign. It's all so pointless and sad...

Thanks for the link, Cold, that statement is the real truth that was needed.
One sentence resonates with me, "GOSH treats patients not scans." The hospital's own clinical findings were surely far more convincing than some professor's long distance assessment of the case, (although it doesn't sound as though he had much of the diagnostic evidence at his finger tips anyway).
Let those who know what they are talking about have the final say and be believed.

I thought it was disgraceful to see Charlie's Army on the News tonight, wailing and gnashing their teeth when they strike me as just being "rent-a-mob". They mostly have no idea what they are talking about and it seems to me that many of them have just jumped on the bandwagon. How dare they be more emotional and upset than the poor parents when the father was trying to read out a statement!

I read that Prince Harry found it very hard when his mother had just died and he saw people who had never met her crying in the street when he was just numb with pain and shock. He just couldn't understand it, and Charlie's Army seem the same to me.

My heart goes out to the GOSH staff and other parents of ill children who are having to run the gauntlet of this gang every time they enter the building, and put up with dreadful treatment and a hate campaign.

I read online - not sure if it's true - that the American doctor had a financial interest in the drugs he was trying to promote for little Charlie.

It says so in the GOSH statement Sparklefizz. What a moving account. Especially worrying was the part about medical experts believing that some of Charlie's responses showed he felt pain. I hope Charlie's parents continue to believe that he didn't, it would be very difficult for them if at any point they came to think they had kept him alive and in pain.

It is probably very cynical of me to doubt his motives for originally considering taking on the case, but it is a very rare condition, and the Professor may not get many babies on which to test (and publicise) his drugs, which have been used on someone with a similar condition but not this specific one.

However, it took him from January to July to actually come over to see his prospective patient, and in between he does not seem to have familiarised himself with his notes.

Thanks Cold for posting the link to the Court Statementbbybthe barrister representing GOSH. It's thorough, sensitive, compassionate to Charlie and his parents. Why can't our media summarise this accurately.

I'm very concerned about the emotive words used by Charlie's father in his statement.

I do think feelings will be inflamed even further now and 'Charlie's Army' is certainly not going to go away quietly.

I think he just meant that the money raised will go to Charlies foundation for research .I certainly didn't think he was threatening retribution by saying his sons spirit would live on and help others

No, I wasn't referring to the monetary aspect, paddyann. I meant the part where he said it was now 'too late' for any treatment to help Charlie.

Sadly with a case like this I think it is always likely to be too late. No one is going to want to use an untried treatment on a baby while there is still hope that tested therapies may help. Once you've passed that point there is little hope for the new treatment either.

How very distressing for everyone; and especially for this or little boy who is suffering in the middle of this circus.

It really does not sound as though this US professor has acted ethically - raising parents' hopes on the basis of no evidence examined. It sounds as though he is an academic rather than a clinician, who has to weigh up the science against the needs of real patients.

I am very sad to hear that he had a financial interest in this experimental treatment.

I am afraid that Charlie's Army represents a lethal combination of ignorance and the magnetic attraction of the media spotlight. Unspeakably shocking.