Charlie Gard 9

[muckypup73]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

What I would like to tell the American pastor and his ilk is that if Charlie had been born in America he would have died long ago. His parents are of modest means, a carer and a postman, and if they could afford health insurance it would probably wouldn't run to keeping him alive on a ventilator for months.
Our so called socialised medicine is what has kept him alive in the first place.
I know other people have said this, but the American (some Americans, not all) perception of our system is just so wrong.
Just had to have a rant, sorry.

Lovelybath I wouldn't be surprised if the parents had to sign a waiver if treatment was to go ahead. It's experimental after all and I would assume it is standard to not allow lawsuits unless in extreme circumstances, otherwise surely no research would ever be carried out?

Lovelybath I think that's where the Gards have been let down by their legal advice. Their refusal to 'allow' a scan/EEG will have an impact on anything this dr is able to recommend. He goes into court and has to say that he is making his assessments based on old scans/Eegs and I can't imagine that being a positive for the Gards.
I do wonder if they'll change their mind over the weekend.

Should say have 'again' been let down by their legal advice.

If my child who was responsive, who lived with me and who I cared for myself was ill then I would expect doctors to respect my mother's instincts and opinions. If they did not do so I would consult further doctors until I was satisfied.
Sadly this is not the case with Charlie. He cannot respond to anyone, all his care has to be done by medical professionals and only they, with their expertise, can diagnose and assess his condition.
The NHS is severely underfunded. Thus some non life threatening treatments may be deemed not essential and may not be available or there may be a long wait for them. Mistakes may occasionally be made by overstretched and exhausted doctors but not at ITU level.
My experience of ITU is of dedicated, dare I say it heroic, world class doctors and state of the art equipment.
Again I know from experience that they consult with other specialists in the UK and overseas. If an alternative treatment is proposed it will be considered at case conferences and used if it is felt to be in the patient's best interests.
I do not believe that Charlie would have received better, or more humane, treatment anywhere else in the world..

Just reading about duty of care and the Bolam test in medical negligence.

*Negligence test- To determine negligence, a three-stage test must be satisfied.

A person is owed a duty of care.
A breach if that duty of care is established.
As a direct result of that breach, legally recognized harm has been caused.

It was argued that if a doctor acted in accordance with a practice that was considered acceptable by a responsible body of doctors that was sufficient and the claimant must show that no reasonable doctor acting in the same circumstances would have acted in that way. The ‘Bolam standard’ (by which the alleged negligent practice is compared with that of a doctor's peers) is subject to criticism and heavily dependent on expert evidence for either side which may be in conflict; however, this is the same test as for other professional groups where negligence is under consideration (e.g. engineers). It has been argued that the presence of a body of opinion that supports a doctor's actions is in favour of the medical profession, handing responsibility for determining negligence back on to those same professionals. Support from eminent professionals for a course of action arguably makes it easier to defend claims of a breach of duty*

Therefore, if this doc choose to treat when the other experts involved all say this is not in Charlie's best interests, would that not meaning he is going against a recognised body of opinion? Or would that be different on this case as his condition is so rare?

Any thoughts welcome.

PS the article I read is here for anyone interested

academic.oup.com/bjaed/article/11/4/124/266921/Duty-of-care-and-medical-negligence

I suppose the ongoing continued pain and suffering could be considered harm?

@Lightlovelife that was a very good rant. I agree.

Maryz the comments are surprisingly supportive of the Drs position.

Just picking up on something raised by Sostenueto earlier about the doc coming over to see Charlie etc. Would it not leave hi open to allegations of negligence if he were to treat him either with scans showing extent of damage, or with no up to date info on his condition?

I don't believe the US doctor can actually treat Charlie. As he has said, he's not licensed to practise in the UK. The most he can do is give an opinion/make recommendations. The purpose of him coming to London is to see Charlie, see the most up to date information on his condition and confer with other specialists. Then he'll make recommendations based on that.

Thanks Cavemum, yes i can imagine that may be the case (a waiver)

On the subject of Kalanithi, I would also recommend his book When Breath becomes Air

That is an excellent article @CaveMum - I have experienced similar when working alongside neurology and neurosurgery. A patient has a catastrophic bleed or blood clot or stroke and is 'saved' by heroic surgery or intervention but for what quality of life? Very difficult.

I am not that surprised by the Loose women poll. If You Gov or one of the other polling companies did a poll I suspect we would see a slimish Majority supporting the charlie's army line.

Connie needs to be in that meeting because gosh are planning to bribe hirano into refusing treatment...

They are utterly, totally barking. I may sign up and suggest they all boycott the nhs and get private health insurance...

I am totally suitable for the 'in spite of me club'.

This is where the Medical Ethics Committee would normally step in. Use of an experimental medical procedure (including use of any drugs) particularly in the very early stages of that research would have to be run past the Ethics Committee (and that can take months) - this case is so out the norm I am not sure how they would wish to proceed.

The parents would have to sign numerous legal waivers as would Charlie's Guardian and given that this is American Research which is undertaken to a different set of criteria than that used in Europe we are now in unknown territory.

But a Medical Ethics expert might be able to throw more light on he situation.

Their ego's have got to be driven down a notch, because conventional medicine means first do no harm! Keeping a baby on a ventilator all this time, while they battle to prove their right, is totally doing harm on every conceivable level.....

Irony hits again...

Sorry - I just realised that the thread had moved on ....... oops sorry folks

Thread 9? This is getting obsessive and the "Hi guys..." greeting really grated. Some people might like to take a moment to think about what you are actually doing here. It feels intrusive, now.

...about what they are actually doing here.

I think if only one doctor amongst a group of 7 or 8 others is prepared to experiment on Charlie then he himself should be the one to administer the treatment.

As medical professionals we are accountable for what we do. In normal cases, if a U.K. doctor gives the experimental treatment against his own will and some harm comes to Charlie then it's not enough for him to say, "Well the American doctor told me to do it." That doctor has to take the responsibility of he himself being the person who gave the drug that caused harm.

I don't know if the fact a Judge has effectively ordered the UK doctor to administer the treatments means he would have a 'get out clause' but I genuinely think that if the American Doctor is the only one who is prepared to carry out the treatment then he himself should do it and deal with the consequences and if that means Charlie has to go to America then so be it.

Haven't fully caught up with the thread but there are a couple have points raised that don't seem to have been answered thus far.

1. The "7 doctors" - these are not all medical doctors. Some are research scientists and have no qualifications/experience in assessing patients, so there is no point in their coming to see Charlie. We do know that, of the 7, Dr Hirano and an Italian doctor are coming. We don't know who else will be there.
2. Sostonueto wrote that it is Charlie's mitochondria that are at fault. As I understand it, this is not so. There is nothing wrong with his mitochondria but they can't work properly because they need a specific enzyme in order to function. The RRM2B gene codes for the production of this enzyme. Charlie has a mutation of the RRM2B gene. He has inherited the mutation from both his parents, if just one parent carried the mutated gene then Charlie would not have the disease.

Good explanation here