Charlie Gard- State decides or parents?

Axl

Nothing dickish about either ^^^

I think they'll only get some closure when they realise that he didn't die due to life support being withdrawn, he died due to an inherited illness.  That's the point they seem to be almost deliberately ignoring.

GOSH and the judge bent over backwards to do everything they could IMO and I find it pretty crass when people suggest otherwise.  Thoughts with everyone involved and hopefully someone can get through to them, sooner rather than later for their sake.

krish

I think the media should be thoroughly ashamed of themselves (the whole fudgeing lot of them, not just the Murdoch outlets) for the circus they created and indulged. As well as feeling sadness for Charlie, I am upset for GOSH, upon whom the media allowed a smear job to flourish, playing no small part in stirring up threats to its staff. Children are sick and dying everywhere, does the media only care if there's a juicy story?

They are paediatric clinicians who've provided the best care and treatment for sick and terminally ill children for over 160 years. I have business with them via the Institute of Child Health (ICH), GOSH's research wing on the same site, a world class medical research facility focussed on child health, so I get a little taste of their scope and passion.

Toko Black

It comes to a point where even the most adamant users of 'so called experts', 'bias' and SJW/Alt-right advocates should really be self contemplating about exactly where this is all leading when they have helped turn what should have been a quiet family tragedy into a abhorant political circus that served no one that deserved help or compassion.
One of if not the most respected childrens hospitals in the world, their hard working, dedicated and compassionate staff have all come under question and their reputations tarnished by this, never mind the cruel and cold use of the ephemeral life of a poor little boy just to score political points.

Cliff

I agree with that. The good doctors have come into question, and I hope its through no fault of their own.
One good thing that has come out of this, is that we have seen the law and family courts working. Usually this is done behind closed doors.

By the way, don't comfort yourself by thinking its some kind of far right conspiracy. Just like Brexit, when you don't see an point of view it is easy to label the other side .e.g.

Many people, like myself, thought this was exactly what was missing...

Toko Black

I don't think it's a conspiracy, it's quite clear that a considerable amount of politicised pro-life, anti-state, anti-social health care groups got involved in the case from a media, social network and campaign perspective as they are want to do especially States side.
US pro-life groups actually flew in to campaign and protest outside GOSH and at the Courts.

and many people like myself thought this was exactly what was being missed - that there was compassion from the doctors, nurses and GOSH, but that they had to contend with trial by social media, soundbites and tweets by Donald Trump, while their only communication with the press and public was via restrictive official press releases, having to abide by the law, codes of conduct and professionalism in what information is said and how it is said.

Unlucky Alf

Like the ashya king case, it's a story about parents ignoring professional medical advice getting twisted into a story about heroic parents defying a heartless medical bureaucracy. It's also significant to note that the Charlie Gard parents managed to get a PR representative working for them to sell stories to the tabloids.

Cliff

Well I wouldn't quite phrase it like that. Its not necessarily ignoring advice.
There often differing views from doctors. But as things stand, if you as a parent chose alternative treatment which is against the advice of the NHS, you will very quickly find yourself breaking the law. The King parents were subject to an International arrest warrant and thrown into a Spanish jail.
The offence 'Neglect'.

Luckily the Kings saw the signs that the hospital were about to detain Aysha and had the sense and to take him out of Southampton to receive Proton Therapy abroad. He is now at school and doing OK.
Remember the doctors at Southampton said the  treatment they could give would be very dangerous and could leave him with serious brain damage. The didn't have the Proton therapy machines then but were prepared to make Aysha stay in that hospital anyway.

In my opinion, we have to move away from this idea that you as parents, have no say and if you do, the state can take you child away, a judge will decide, and there might be charges against you. e.g. Neglect, cruelty, unnecessary suffering etc.

You asked me a question a few posts back which was centred on whether I thought the doctors advice was sound. In the Charlie case it probably was, and as I am not the parents, I would go along with it.
However, if I was the parent and in the King, case a reputable doctor in Prague said there was hope by using Proton Therapy, then I should be allowed to make that decision and take my child there.

What is 100% wrong is that it becomes a legal case if you go against the NHS doctor and chose the advice from another doctor or hospital.

Of course in the Aysha King case the decision of the parents has been vindicated. But it could have been very different.

tapzilla2k

In the Aysha King case the parents got lucky that the treatment worked and they took a risk by fleeing the country. If the treatment hadn't worked, I suspect the parents might have ended up in Prison. Also we have to hope that Aysha King's cancer stays in remission, that's the thing with cancer we don't fully understand it. There won't be a cure for cancer, so much as individualised treatments tailored to our genetics and immune systems (as that seems to be the way things are headed).  

We either follow strict Medical Ethics for deciding treatment options or we don't and suffer the consequences. I'm sure those who work in the medical field can probably inform us more about how risky experimental treatments can be and how some are no more than theoretical treatments being sold as miracle cures by charlatans looking to make a quick buck. Snake oil in other words.

Unlucky Alf

See, even you're repeating the 'desperate parents v heartless doctors' line. Ashya King had a brain tumour that was successfully removed at Southampton hospital. The standard follow up treatment for the type of tumour he had is chemotherapy and/or radiotherapy to the brain and spine, as the cancer cells can spread quite far. The parents did some research and heard about proton beam therapy. The NHS did in fact have PB machines at the time, which are used for treating types of cancer that tend to remain localised, and which they therefore felt wouldn't be the best form of treatment in Ashya's case. They told this to the parents who disagreed, and while discussion was still going on, the parents took ashya and went to Spain. A manhunt was launched as the hospital didn't know where the family had gone and he needed regular medical attention.

It should also be noted that you need 5 years without remission to be declared cancer free, so it's a considerable bit of jumping the gun to say that Ashya is cured.

tapzilla2k

Here is the salient piece about Charlie Gard from one of the judgements -
There are unfortunately no treatment options for this yet, the so called treatment on offer sounds more like a theoretical one the more I read about it. You do need to conduct experiments before you even get to a human trial stage, let alone giving it as a therapy. It's dangerous, unethical and bonkers not to follow established medical testing and clinical trial rules.  
The Parents were strung along on false hopes for other purposes. Mostly in the US to attack "socialised medicine" given the Republicans are struggling to repeal the ACA and likely don't want Americans to start looking into non insurance model health care systems from other parts of the world.