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

Latest proposed revision of the bill. Is it disappearing up its own backside?
www.stopthesaatchibill.co.uk/the-fourth-draft-of-the-medical-innovation-bill/

murky waters durhamjen - murky statistical waters in fact.

Just been to my GP and I am to be taken off one drug and put on another more modern one. However, I have to come off the original one very slowly, otherwise the original problem could be worse.
If I had to pay for my prescriptions, it would cost over £50 per month.
One government think tank is thinking of it!

The statins thing was within a month, Jess, because GPs said no. It would not have been cost effective.

Its the nature of science isn't it durhamjen - they make decision on the basis of the best available scientific evidence and then someone publishes a new study and they have to amend their guidance. Knowledge accumulates and it is hard for medicine to keep pace sometimes.
There is much controversy about mass medication as a preventative measure and it takes years for any study to deliver results.

Nice cannot make up their minds anyway. This about statins.
www.pulsetoday.co.uk/clinical/therapy-areas/cardiovascular/we-dont-want-millions-more-patients-on-statins-says-nice/20007859.article

Agreement from me for JessM's post.
The drugs I mentioned in my previous post, that are giving me so much benefit, are biological treatments. The list of possible side effects runs to pages, but I had good support from my consultant, GP and specialist nurse in reaching what I feel has been the right decision for me. I feel very lucky to have what is an expensive treatment, funded by the NHS.

Rosequartz I agree there are a few new drugs that are revolutionary - mostly monoclonal antibodies (not really drugs but biological molecules) . Have you read Ben Goldacre's books which are very clear and informative on the way drugs come to market and the flaws in the system.
The Saatchi bill is really aimed at cancer or other terminal patients who have run out of other options. I agree 999 doctors out of a thousand would not behave in a maverick manner. But there is a tiny minority, some of them in private practice that are unscrupulous and could use the Saatchi to protect them as they work outside the NHS.
Also with great slabs of the NHS being contracted out to the tune of £billions some of you will find yourselves referred to private contractors for major issues and they need tight controls, not ones that are more lax.

Many of the new drugs are trailed on patients, who decide that taking part in a trial may benefit their own health, and that of others.

I was prescribed a gold standard drug, which worked wonderfully for a year. I developed side effects, "rare, but well documented, in 1 in 100,000 patients". It took a year for the side effects to clear up, at which point I moved on to an older gold standard treatment, that had been in use for 20 years. 18 months on, it's working well, no side effects.

I wouldn't want to risk taking a new drug, that had not been approved by Nice. I don't have cancer though, maybe if I did, I'd feel differently.

Thanks for the info Jess, I was reassured, perhaps wrongly, by Lord Winston now agreeing to the bill after more changes were made. I've tended to read more of why Lord Saatchi is motivated, the loss of his beloved wife, than the technicalities of the bill itself.

Sorry, should have said that all of the drugs will have passed clinical trials.

I was disagreeing with your earlier post, Jess. Had not seen the second one.

Sorry, but I have to disagree Jessm.

Some of the breakthrough new drugs can people alive and in reasonably good health for years. The short time limits which are reported in the media about new drugs keeping people alive are because they are reporting on the latest drugs which have only been used for a relatively short time. They are expensive but probably cost-effective compared to many hospital stays and the fact that people may be well enough to return to work, care for DGC to enable their DC to return to work etc.
I don't think doctors will try whatever 'takes their fancy' - personally I think they are better than that. They will take note and confer with colleagues on the best drugs available for their patients, many of which have passed the clinical trials and are available abroad but not here.
Some of the newer drugs can restore people to reasonable health and do not have the horrible side effects of cheaper 'gold standard' drugs. I do not agree that they are only 'marginally better'. Many of them are a real breakthrough and completely change the way some diseases are treated - far and away for the better.

penguinpaperback Lord Saatchi is a PR expert with a lot of influential friends in the press etc. But not a medical expert or an expert in the law relating to medicine.
He keeps getting the bill revised because experts in medical law etc etc point our the major flaws. It is perfectly possible for doctors involved in bona fide research to try out experimental techniques at present - as long as their hospital ethics committee agree. This kind of research is called "translational" or "bench to bedside". Typically a researcher might have something that is working well in the lab and a patient who has already had all possible conventional treatment and is fully informed. Isn't that just what Lord S wants? If he wants more than that he immediately strays into very murky waters where you open the doors to individual doctors trying anything they fancy without there being any checks or balances. What he is asking for is a law that says a doctor can try anything they fancy without risk of being prosecuted for negligence. Very worrying.

Jing just try clearing out your cookies.

Oh thanks for the info, will remember that.

Sorry to go off-subject.

It's a shame. It's a good straightforward newspaper. Perhaps I will relent and pay up.

You can read all the news you want to, but they limit the number of articles to 20 a month. After that a curtain comes down and they offer you a free month's trial with £5 monthly after that. (I took up the offer of the free trial but, of course, forgot to cancel it in time. ) (cancelled now)

It's like a semi-paywall. Grrr!

Hi jings Telegraph is free isn't it? If not I owe them some money.

I can't read that article because I have reached the end of my "20 free articles a month". And I'm not paying £5. Hate the Telegraph. And not for it's content.

Short article about the Saatchi bill, by Lord Saatchi.
www.telegraph.co.uk/health/11054104/If-it-works-for-Ebola-it-can-work-for-cancer.html

I'm hoping there are or there will be sufficient safeguards against quacks Jess as I can see many good things in the Saatchi bill. I signed up for those email updates following it's progress.

There are very few brilliant new drugs these days. Much of the argument about expensive new ones centres on ones that do not cure but keep people with specific diseases alive for a little longer. The drug companies have to demonstrate not that they have an effect but they are measurably better than the current best treatment i.e. the gold standard. They tend to recruit charities to help them promote their new treatment. there was something on the radio last week about this - big donations made to various health charities but in return the charities end up campaigning that everyone should have access to the latest expensive, and maybe only marginally better, drug.
It's important that there is a research-based "gold standard" in diseases like cancer. Otherwise we would be back to a situation where each consultant had their pet ideas about what worked e.g. what kind of combination of chemotherapy and radiotherapy works best on a specific cancer.
Lord Saatchi is trying to push a bill through parliament (the equivalent of a private members bill in the Lords) that will give carte blanche to doctors who want to deviate from the gold standard and try anything that takes their fancy. There are grave fears that this will be (quite literally) a get out of jail free card for doctors who deviate irresponsibly from tried and tested profiles. And quacks working privately.

You are right. It is the research that costs the money and they need to recoup that and more to fund further research.

However, if the expensive drug keeps people alive and in reasonable health for longer, they will need less hospital treatment and could go back to work if they are able, which costs the State less in the long run.

Money rose money! If medicine A costs £20 and will definitely cure 100 people and medicine B costs £20 and might cure 1 and you only have £20 what do you do?? You have to provide guidelines to help the front line workers make the decisions.

We have all come to expect cures /medicines etc. for everything and rightly or wrongly have become more demanding, health wise, as a society.

That is the difficulty, the catch 22 with the NHS. It is an excellent principle, medical care free at the point of delivery & I support that NHS principle to the hilt but how to preserve it I don't know!

Medical technology/science /pharmaceuticals has developed so many treatments and is big business and that costs money!