Great Ormond Streets position was outlined in court documents:

At the first hearing in Charlies case in March, GOSHs position was that every daythat 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 GOSHs view there has been no real change in Charlies responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judges finding, inApril, that since his brain became affected by RRM2B, Charlies 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.

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.

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 Charlies 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.

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,GOSHs 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 Professors 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 Charlies contemporaneous medical records or viewed Charlies brain imaging or read all of the second opinions about Charlies condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judges 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.

In the months ahead, all at GOSH will be giving careful thought to what they can learnfrom 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 Charlies parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.

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 familys 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 GOSHs research.

All of GOSHs 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.

Continue reading here:
US doctor who wanted to treat Charlie Gard had 'financial interest' says Great Ormond Street - Metro

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