to all GN's living in France 4 year old boy missing

Guidance? Why then are consultants not allowed to prescribe breakthrough treatments which they know from trials on their own patients work better than anything before, because NICE says no?
NICE have had to do a U turn on at least one occasion that I know about because of an outcry from consultants, patients' groups and patients.

I accept that, pen, nevertheless it is hard for doctors to go against guidelines without being accused of malpractice in the event of an unfavourable outcome for the patient, or financial repercussions for the practice if they are seen as outliers in their prescribing profiles.
Guidelines too quickly become rules.

NICE do not ban anything (pedantic) They produce guidance based on current research on the efficacy of a treatment vs cost.

Rose I don't quite agree with your definition, but I certainly think it would be nice (pun intended) to know exactly how many, and which, therapies are currently banned or restricted by the NICE guidelines. Personally I have no idea.

ja My view, which is not a definition and my opinion only, is that gold standard is the tried and tested treatment used by health services and known to work in the main on many patients, but perhaps with unpleasant side effects.
Perhaps 'cutting edge' was not the exact term I meant to use; rather the term 'the newer treatments'. I would define these as treatments which are the result of years of research, have passed rigorous clinical trials with excellent results, have fewer side effects, but are not available because NICE has not passed them, or the LHA has deemed that they are too expensive.

rosequartz I do not think the end of the world is imminent. I think that most people don't think the end of the world is imminent. That sort of thing, not mainstream religious belief, is what I meant by a patently absurd belief.

As far as gold standard vs cutting edge is concerned, perhaps you would like to define the two. I would suggest that 'gold standard' has a solid evidence-base behind it, whereas cutting edge has some evidence, but not enough to make it 'gold standard'.
It follows that it is logical to try gold standard first, if there is more evidence to support its use. As soon as cutting edge has enough evidence to confirm its efficacy is equal to gold standard, it becomes gold standard and stops being cutting edge. Or, alternatively, the evidence shows that after all it is not as effective as the current gold standard, and it falls from use.

jen I meant that in the 18th century, leeches were in common use for numerous medical conditions, even though they were of no proven value. Now their use is largely discontinued, but as Galen has pointed out, there remain a few indications.
In the same way, as you say, Women's Rights was considered a completely barmy concept in the 18th century. Nowadays, in this country at any rate, far fewer people take that view.
My point was that it takes decades, or centuries, for opinion to change from unacceptable to acceptable and vice versa.

I heard a doctor from Southampton state that the 'gold standard treatment' was being offered for this little boy.

Gold standard treatment is not always the best and not usually cutting edge. I have had 'gold standard treatment' which was changed to a newer treatment by a consultant who presumably went against the NHS protocol to do so.

Precisely djen. It was a Jewish sect for a long time.

Do you mean like Christianity was for centuries, rose?

ja However, I do agree with her that if someone holds a patently absurd belief that is shared by very few others, religious or not, then that must cast some doubt about their ability to make rational decisions.

How do we know that they are not right and the rest of us wrong? We won't know until we die. Just because we think it is patently absurd does not mean that it could not be true.
A sect is called that until it grows and becomes a mainstream religion, then when it becomes huge beliefs begin to diverge and 'sects' begin again under that umbrella.

And she still married him?

Leeches still have a useful role today. My father successfully used them on a bride the night before her wedding to reduce the swelling of her eye. Caused by grooms fist in a premarital tiff

What do you mean, Jane? Was the use of leeches irrational? What do you mean, if you must persist in the analogy? I've only mentioned it once. Hardly persisting.
When I was in the Freeman hospital last year, the woman in the next bed to me had maggots to treat her leg. The doctors would do a ward round at breakfast and discuss her treatment in loud voices. She used to have terrible nightmares, even during the day, and was often screaming.

In the news today is a report that cancer services have been weakened by the NHS revamp. I wonder if that could have any bearing on what happenned in the Southampton case. The amount of money spent on cancer has been reduced by 0.2 billion pounds while the number of people being investigated has risen by 50% since 2009-10.

Social change which evolves over decades is not at all the same thing as the clinical decision-making process for a single patient, jen.
But if you must persist in the analogy, perhaps the use of leeches in the 18th century would be a better comparison.

That must put the whole of social change in the realms of irrationality, jane. Women's rights were considered patently absurd in the 1800s. Very few women even wanted those rights. It tended to be only the wealthy who wanted divorce, or could even afford it. Did that make it absurd or irrational?

No, they are not rational Rosequartz, they are based on faith, but that does not mean that people who hold those beliefs sincerely are not capable of rational thought, which is why I thought it would have been better if Joan Smith had not made those references to the Kings being JWs.

However, I do agree with her that if someone holds a patently absurd belief that is shared by very few others, religious or not, then that must cast some doubt about their ability to make rational decisions.

The only rational belief would be that a religion exists for the purpose of imposing control, by fear of retribution and hope for an unlikely 'afterlife'...

Could be ja! You never know!

Is any religion a rational belief if you really think about it?

jingl I think that the article would have been better without the reference to Jehovah's Witnesses. It was a cheap shot.
But that doesn't make the rest of it less valid.
My understanding is that the Kings belong to what has been described as a 'cult' within Jehovah's Witnesses which believes that the end of the world is imminent and that only 144000 souls will be 'saved'.
Would you say that was a rational belief?

This little boy may die or he may survive with brain damage. Whatever the outcome his parents will know that they have done their best for him.

They are motivated by love alone.

On another thread people are saying they would pay a ransom to save their son's life if he were in a hostage situation. Some say they would do anything to save their child even knowing it was wrong.

Perhaps that woman thinks the vote should be taken away from all Jehovas Witnesses. Logical line of thought.

I agree with whenim64's post. Leave them alone now. Pray for them if you can.

That article is diabolical. How dare that journalist suggest that Jehovas Witnesses are any less capable of rational thought when it comes to the care of their children, than anyone else! WTF has their religious beliefs got to do with it? (They've already agreed to blood transfusions anyway )

Stupid woman.

Thank you Bags, by 'balanced' I did mean balancing what had been previously written in the press, as Joan Smith set out at the beginning of the article.

I agree Penstemmon that probably none of us are in a position to make an informed judgement about the clinical choices and decisions that have been made.
However, the article did put things in a slightly different perspective in several ways.
Firstly, that the chances of Aysha's survival were greatly increased, if not dependent, on prompt follow-up treatment, which was jeopardised by the family's light to Spain;
Secondly, that the Southampton doctors did refer Ashya to the NHS Specialised Services Proton Clinical Reference Panel, and this panel confirmed the hospital's opinion that proton beam therapy was not suitable in Ashya's case;
And thirdly, the point made by NHS Choices that Proton Beam Therapy Clinics in other countries make perhaps dubious use of marketing techniques to attract patients without making it clear that there are only a small number of tumours for which it is suitable. We are all quick to condemn such marketing when it is used to promote some alternative, non evidenced-based therapy, but perhaps what is not recognised quite so readily is that the purveyors of mainstream, evidenced-based treatments have to make a return on their investments and a profit for their shareholders, and aren't always ethical in the way they do it.

Like everyone else, I do sincerely hope that Ashya doesn't die and has a reasonable quality of life. But it has saddened me to see so much ill-informed, unreasonable and bitter comment against the Southampton doctors in particular, and the medical profession in general.