Charlie Gard

[Digby]

Yes, but I suspect everyone struggles to blame the parents much. The piece of sputum from the US who rocked up promising much, but delivering nothing but dissension deserves much opprobrium. The crazies sending death threats deserve prosecution, and the loons protesting outside the hospital harassing some of the excellent staff deserve ridicule.

[belgarion]

Yes, but I suspect everyone struggles to blame the parents much. The piece of sputum from the US who rocked up promising much, but delivering nothing but dissension deserves much opprobrium. The crazies sending death threats deserve prosecution, and the loons protesting outside the hospital harassing some of the excellent staff deserve ridicule.

And prosecution

[Sandydragon]

Yes, but I suspect everyone struggles to blame the parents much. The piece of sputum from the US who rocked up promising much, but delivering nothing but dissension deserves much opprobrium. The crazies sending death threats deserve prosecution, and the loons protesting outside the hospital harassing some of the excellent staff deserve ridicule.

Its a position no parent wants to be in and its impossible not to feel huge sympathy for them. For their sakes, its probably better to get this over with sooner rather than later.

[Sandydragon]

Yes, but I suspect everyone struggles to blame the parents much. The piece of sputum from the US who rocked up promising much, but delivering nothing but dissension deserves much opprobrium. The crazies sending death threats deserve prosecution, and the loons protesting outside the hospital harassing some of the excellent staff deserve ridicule.

And prosecution

Yes.

[SerjeantWildgoose]

Yes, but I suspect everyone struggles to blame the parents much. The piece of sputum from the US who rocked up promising much, but delivering nothing but dissension deserves much opprobrium. The crazies sending death threats deserve prosecution, and the loons protesting outside the hospital harassing some of the excellent staff deserve ridicule.

Its a position no parent wants to be in and its impossible not to feel huge sympathy for them. For their sakes, its probably better to get this over with sooner rather than later.

I have got to the point now where my sympathy for the parents is becoming somewhat worn and I get the impression that their actions are increasingly self-serving and counter to the best interests of their baby.

Having finally conceded that there is no miracle therapy and that the GOSH doctors were right all along they sought to have Charlie moved to their home to die. When doctors advised that his paliative care could not be provided in their home they agreed to have him moved to a hospice, but wanted him to be kept on life support for several days to allow them to spend time with him. The medical team have advised that it is in Charlie's best interest to move him to the hospice and begin the paliative end of life path immediately.

This poor child can have no understanding of his situation and for all we know is living through agonising discomfort. Why can they not let him go and draw some comfort from their having released him from all of this?

[Eugene Wrayburn]

They've bloody well made me agree wholeheartedly with Melanie Phillips. Does the cruelty know no bounds?

[Sandydragon]

They've bloody well made me agree wholeheartedly with Melanie Phillips. Does the cruelty know no bounds?

I avoid her column, but I can guess.

[WaspInWales]

It's a good piece to be fair.

I suppose just like a broken clock, she can be right now and then.

I checked out the American Thinker website she referenced on her blog and wow, just wow.

[SerjeantWildgoose]

It's a good piece to be fair.

I suppose just like a broken clock, she can be right now and then.

I checked out the American Thinker website she referenced on her blog and wow, just wow.

She bought me a pint once. We were both delegates at a Chatham House debate, which was chaired by Keith Hellawell, Blair's Drug Tsar. I was running the MoD's compulsory drug testing team at the time and was invited along to argue that drug testing and zero tollerance can have an effect. This was the apparent case as we were, and still are I think, Europe's largest compulsory drug tester of employees and have maintained a sub-1% positive rate that compares with rates that exceeded 10% in the general population and 25% in some safety critical industries (Such as RailTrack!!!).

Phillips thought I was the dog's cock as on the surface our programme appeared to play directly into her slightly-right-of-Himler view that deterrence and punishment were the bedrock of any programme to tackle public nuisance. Over the course of the next few days, in which she displayed all of her prejudices in their full technicolour repugnance, she came to realise that our programme also included a massive degree of discretion on the part of commanding officers and we were developing an effective rehabilitation scheme.

I started with having Phillips buy me a pint over lunch and Simon Jenkins buying me one over dinner.

[SerjeantWildgoose]

If you get the chance today, check out the front page of the Dail Mail print edition. I am out having a brew and the bloke opposite is reading it.

Top of the fold is a new picture of Charlie with a quote from the parents saying that they've been denied their last wish to take him home.

Below the fold is a massive headline referring to Grenfell. All it says is 'MANSLAUGHTER'.

The headline and picture take up about 2/3 of the page and are in such stark juxtaposition that it would be easy to judge that the one refers to the other.

The Mail is a repulsive mouthpiece, but I hope to feck that even they wouldn't stoop this low by design!

[Sandydragon]

If you get the chance today, check out the front page of the Dail Mail print edition. I am out having a brew and the bloke opposite is reading it.

Top of the fold is a new picture of Charlie with a quote from the parents saying that they've been denied their last wish to take him home.

Below the fold is a massive headline referring to Grenfell. All it says is 'MANSLAUGHTER'.

The headline and picture take up about 2/3 of the page and are in such stark juxtaposition that it would be easy to judge that the one refers to the other.

The Mail is a repulsive mouthpiece, but I hope to feck that even they wouldn't stoop this low by design!

Yeah. They can legally argue that its 2 separate articles and unrelated. But.... it is the Daily Mail!

[OptimisticJock]

So it's your fucking fault blokes watched me pish?!

[SerjeantWildgoose]

So it's your fucking fault blokes watched me pish?!

You're a Jock. If it came out clean, probability is that you paid someone to piss for you.

[cashead]

So it's your fucking fault blokes watched me pish?!

I hope you got paid, at least.

[SerjeantWildgoose]

The Black Watch were notorious for their wet work.

[canta_brian]

Patient advocacy is a wonderful thing, and especially powerful when driven by families ...

It is when it is informed, but I can't help but feel that in this case the parents were acting out of the most basic of instincts and against all of the informed opinion. That is not to say that I attach any blame to them; I do not. I do blame those who sought to make political or commercial mileage out of their incomprehensible suffering and in the process gave them false hope and perhaps led to a prolongation of the suffering of their child.

My missus and I were talking about this issue earlier. We both agree, with our 14 month old son, that we would do anything to look after him and , heaven forbid, that we find ourselves in the same position as Charlie Gards parents, we would also be desperate for a solution.

The problem with experimental cures is that they often aren't widely known or have low likelihood of success. Sometimes the kindest thing to do is let nature take its course rather than prolong life artificially, and anyone who tries to manipulate the parent switch false hope is despicable. I do recall a case from a year or two ago where parent s took their child abroad to get treatment denied to them in the NHS and managed to get their son cured. In that case, the authorities looked high handed and just plain wrong, but that perception can't overshadow every case.

A horrible position to be in and a difficult one also for doctors and the judges involved.

As for abuse via social media, it's a total disgrace. I've just been reading a report about MPs getting death threats via social media and it's something that needs to be dealt with. We wouldn't tolerate a face to face death threat, the pathetic cowards who do so via social media deserve punishment.

Did you mean the Ashya King case? Even that was not all it seemed.

http://www.independent.co.uk/voices/com ... 16486.html

A British boy is dying of a brain tumour. His distressed parents discover a life-saving treatment, available only in another country. Heartless doctors refuse to refer the child to the foreign clinic. Instead, they insist on going ahead with conventional treatment which, the parents fear, will turn him into a "vegetable". The distraught parents seize their son from the hospital and take him abroad. The UK authorities overreact wildly, issuing an international alert for the family. The parents are found in Spain and arrested, causing an outcry and interventions from leading politicians.

This sequence of events has been widely reported in the past week. It is what a great many people believe about the controversy over five-year-old Ashya King, who is currently in a hospital in Malaga. Many of them have signed internet petitions or written furious blogs, citing the case as an example of the authoritarian state or the arrogance of doctors. The problem is that the story I've outlined simply isn't true, starting with this basic fact: Ashya isn't dying. Despite headlines using the hugely emotive phrase, he isn't "terminally ill".

In fact, his chances of surviving five years are between 70 and 80 per cent, as long as he receives prompt chemotherapy followed by radiotherapy. His tumour, which is called a medulloblastoma, was removed at a major teaching hospital, Southampton General, just over six weeks ago. To maximise his chances of recovery, chemotherapy should have started within four to six weeks of surgery. It didn't, because his parents fell out with doctors in Southampton. The treatment they want is available at a private clinic in Prague, but that isn't where they headed when they left the UK. They actually returned to the south of Spain, where they have a holiday home, and where they were staying when Ashya first showed symptoms earlier in the summer.

Obviously, the diagnosis of a brain tumour in a young child is devastating for any family, and no one doubts that Brett and Naghemeh King want the best for their son. But it is possible, despite being an eventuality discounted by most of the people making inflammatory comments, that even the most loving parents will sometimes make bad decisions in moments of extreme stress.

In this instance, the Kings did their own research on the internet and read about a form of radiotherapy known as proton beam treatment, which isn't available in the UK.

There is no general ban on referring NHS patients to have this treatment, although it is very expensive; around 400 patients, most of them children, have been sent abroad to undergo it since 2008. In suitable cases, the NHS will pay for the family's travel and accommodation as well as the treatment. But proton beam radiotherapy is recommended in only a tiny proportion of cancers – around 1 per cent, according to Cancer Research UK.

Ashya's doctors insist they took a clinical (not financial) decision that it would not be better for him than conventional radiotherapy. Because his parents disagreed, the doctors referred his case to a body called the NHS Specialised Services Proton Clinical Reference Panel. The panel confirmed the hospital's opinion that Ashya was not a suitable candidate, but even then his doctors in Southampton went on talking to the parents to try to establish what they would be happy with. The Kings suggested they would be able to fund the treatment themselves, by selling their holiday home, and discussions continued until just before they took him to Spain nine days ago.

Since they appeared in Spain, members of the family have made emotional videos and press statements denouncing the behaviour of doctors in the UK. Ironically, when Ashya first became ill, the Kings brought him back to England to be treated by the NHS. Now they've changed their minds, but it is worth remembering that they are desperate for good news. Last week, NHS Choices issued a clear warning about the marketing of "emerging" treatments, stating unequivocally that "some overseas clinics providing proton beam therapy heavily market their services to parents who are understandably desperate to get treatment for their children". The statement added that it is "not clear whether all children treated privately abroad are treated appropriately".

[Sandydragon]

Thanks CB, it was the King case I had in mind. The background you've just provided is really interesting and puts things in a different light, even though the public perception is still that the NHS and other authorities were uncaring and authoritarian.

I'd suggest that the public in general have lest trust in authorities and institutions than they used to have and with the ability to self research on the internet now bringing information to light that previously wouldn't be available, suddenly people are looking for alternatives. Its suddenly a very easy story to believe and people naturally have sympathy for parents in that situation, at least at first.

[OptimisticJock]

I'd suggest that the public in general have lest trust in authorities and institutions than they used to have and with the ability to self research on the internet now bringing information to light that previously wouldn't be available, suddenly people are looking for alternatives. Its suddenly a very easy story to believe and people naturally have sympathy for parents in that situation, at least at first.

The problem with this is is not very often the correct information they're getting or it's taken out of context. They're not using the correct sites.

[Sandydragon]

I'd suggest that the public in general have lest trust in authorities and institutions than they used to have and with the ability to self research on the internet now bringing information to light that previously wouldn't be available, suddenly people are looking for alternatives. Its suddenly a very easy story to believe and people naturally have sympathy for parents in that situation, at least at first.

The problem with this is is not very often the correct information they're getting or it's taken out of context. They're not using the correct sites.

Parents in that situation probably aren't critiquing the information they find too much, they need hope and the website offers it. The basic problem with the internet is that all information looks the same. The most qualified and competent health practitioner's website looks no more convincing than a quack's.

[morepork]

I'd suggest that the public in general have lest trust in authorities and institutions than they used to have and with the ability to self research on the internet now bringing information to light that previously wouldn't be available, suddenly people are looking for alternatives. Its suddenly a very easy story to believe and people naturally have sympathy for parents in that situation, at least at first.

The problem with this is is not very often the correct information they're getting or it's taken out of context. They're not using the correct sites.

This is so true. There are dozens of miracle "treatments" in Russia and China that involve autologous, or even heterologous adipose "stem cell" transplants that have absolutely no basis in empirical observation. I don't know what the UK equivalent of the FDA is, but here, in USandA, the issue of ethics and accountability by physicians and industry alike is one that is part of every curriculum from high school biology on upwards (usually using thalidomide as an historical example). There needs to be a greater degree of scientific literacy from school upwards, and I don't mean being able to build an MRI, I mean a thorough and practical understanding of the ethics of claims of efficacy and quality control and safety.

Sandy, "The most qualified and competent health practitioner's website looks no more convincing than a quack's" is not accurate. People that like cute dolphins don't buy tuna that doesn't say that cute dolphin-killing practices were not used. If a quack claims efficacy without a valid formal approval through a centralised regulatory body, the consequences for making such claims should be severe. See Mr. (formerly Dr. ) Wakefield for example.

[Sandydragon]

I'd suggest that the public in general have lest trust in authorities and institutions than they used to have and with the ability to self research on the internet now bringing information to light that previously wouldn't be available, suddenly people are looking for alternatives. Its suddenly a very easy story to believe and people naturally have sympathy for parents in that situation, at least at first.

The problem with this is is not very often the correct information they're getting or it's taken out of context. They're not using the correct sites.

This is so true. There are dozens of miracle "treatments" in Russia and China that involve autologous, or even heterologous adipose "stem cell" transplants that have absolutely no basis in empirical observation. I don't know what the UK equivalent of the FDA is, but here, in USandA, the issue of ethics and accountability by physicians and industry alike is one that is part of every curriculum from high school biology on upwards (usually using thalidomide as an historical example). There needs to be a greater degree of scientific literacy from school upwards, and I don't mean being able to build an MRI, I mean a thorough and practical understanding of the ethics of claims of efficacy and quality control and safety.

Sandy, "The most qualified and competent health practitioner's website looks no more convincing than a quack's" is not accurate. People that like cute dolphins don't buy tuna that doesn't say that cute dolphin-killing practices were not used. If a quack claims efficacy without a valid formal approval through a centralised regulatory body, the consequences for making such claims should be severe. See Mr. (formerly Dr. ) Wakefield for example.

I'm not disputing the impact. My point is that a webpage belonging to a genuine expert can be very similar to one provided by a quack unless the searche has some background knowledge to compare against.

If they were tv ads the quack would be regulated, but not on the internet.

[morepork]

The problem with this is is not very often the correct information they're getting or it's taken out of context. They're not using the correct sites.

This is so true. There are dozens of miracle "treatments" in Russia and China that involve autologous, or even heterologous adipose "stem cell" transplants that have absolutely no basis in empirical observation. I don't know what the UK equivalent of the FDA is, but here, in USandA, the issue of ethics and accountability by physicians and industry alike is one that is part of every curriculum from high school biology on upwards (usually using thalidomide as an historical example). There needs to be a greater degree of scientific literacy from school upwards, and I don't mean being able to build an MRI, I mean a thorough and practical understanding of the ethics of claims of efficacy and quality control and safety.

Sandy, "The most qualified and competent health practitioner's website looks no more convincing than a quack's" is not accurate. People that like cute dolphins don't buy tuna that doesn't say that cute dolphin-killing practices were not used. If a quack claims efficacy without a valid formal approval through a centralised regulatory body, the consequences for making such claims should be severe. See Mr. (formerly Dr. ) Wakefield for example.

I'm not disputing the impact. My point is that a webpage belonging to a genuine expert can be very similar to one provided by a quack unless the searche has some background knowledge to compare against.

If they were tv ads the quack would be regulated, but not on the internet.

"Geniune experts" are mandated by law to divulge conflicts of interest. Again, Wakefield. Claims of treatment and diagnosis are held up to intense informed scrutiny. If they are not validly accurate, the hammer comes down on them. This includes the internet. http://www.npr.org/sections/health-shot ... conditions

[Sandydragon]

In what country MP? How does the hammer come down in countries with less stringent safeguards?

[Sandydragon]

In the case of Wakefield it took six years to discredit him. How many MMR vaccinations weren't performed as a result?

It's also not difficult to find ads for bogus treatments online. The FDA are currently talking about false treatments for cancer that can be bought on the net. Not that well regulated really.

[Eugene Wrayburn]

In the case of Wakefield it took six years to discredit him. How many MMR vaccinations weren't performed as a result?

It's also not difficult to find ads for bogus treatments online. The FDA are currently talking about false treatments for cancer that can be bought on the net. Not that well regulated really.

If you are buying cancer treatment in the net without supervision of an actual doctor then you can't be surprised at quackery.