National Institute for Clinical Excellence in America?

This is what worries me ......

National Public Radio Story (July 21, 2009): 'Comparative Effectiveness' In Health Care Debated

The story mentions the NICE in the UK.  I don't know how accurate the story is, but it concerns me that someone could one day decide that ABX is not sufficiently effective in MS.

1) How do you feel after listening to the story?

2) How does the National Institute for Clinical Excellence work?

3) Do you think ABX-CAP could be threatened by this?

4) How do CPn'ers in the UK deal with the healthcare system, specifically regarding prescriptions and insurance.

For me the story seems to have a slant, but I figured this was a good place for a truth check.  Ken

 

 

2) How does the National Institute for Clinical Excellence work?

They basically get to decide how public healthcare is run in this country. E.g. "NICE" (or NASTY as I like to call them) decide that the only legitimate treatments for ME/CFS are CBT & Graded exercise. Therefore effectively if you are unfortunate enough to have ME/CFS you won't get publicly funded treatment. You might say "whats the big deal? Just go private like we do in the US". The problem is that because of the NHS the private sector in the UK is tiny (people don't like to pay for healthcare twice). So in effect NICE get to decide what kind of medicine is practiced country wide. If they don't like your disease, tough luck.

4) How do CPni'ers in the UK deal with the healthcare system, specifically regarding prescriptions and insurance

Everything is private. Paid for out of pocket. Not many people have healthcare insurace here, and I'm not sure how useful it would be anyway since they would be reluctant to pay for anything the NHS didn't approve of.

3) Do you think ABXi-CAPi could be threatened by this?

I think its a major threat to freedom to practice the kind of medicine you and your doc want to practice, rather than what the government thinks you should practice. Remember the government's main priority is saving money. Your priority is to be healthy. Those two priorities are fundamentally incompatible.

 

Hunter: Don't think - experiment

I'll post what I already answered to your question on ThisisMS:

NICE is not the way to go, though I'm not sure about Gregg's costings! Some people get far more than £40,000 spent on them each year.

There is nobody in charge here who thinks that abx are useful for MS and as for stents, they are useful for arterial blockage, but that's it. Things change, though, and if both were shown positively to be useful, with tons of double blind trial and so forth, they would get the OK.

Having said that, there is nothing to stop a GP prescribing abx for MS, if they so wish and theoretically they could send a patient for testing for CCSVI. The trouble is, too many believe that what NICE says goes, which is untrue.

Also, if someone has private insurance in addition the National Insurance, NICE rulings don't apply. 

To which I will add that nobody stops David from treating MS patients or AW from treating chronic fatigue people.  The only thing is that people mostly have to get private prescriptions, but with MS your local GP will often give an NHS prescription.

I think that as far as any changes in the US system, most doctors laugh at CAP to start off with.  Those who don't will be able to carry on prescribing, just Like David and AW can here.   Your healthcare system is never going to be completely socialized, any more than ours is.  It isn't even in Russia or China now, but maybe it is in North Korea, I don't know...............Sarah  

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Garcia, my (NHS) GP prescribes the abx for me and for all I know would organise CCSVI for me should I show him the research and ask for it. He is not a by-numbers doctor and I know that he has gone "off-label" for other patients with other conditions. So it's just the luck of the draw, GP's either have faith in their own abilities, or stay within the NICE safety net. I am also pleased to say that he is an examiner for new GPs and a tutor, so there is hope for a new generation of GPs to widen their horizons.

My reason for posting this is to say that our brand of "socialised medicine" is not the straightjacket that it is sometimes represented to be - as Sarah has confirmed. 

speedbird

Maybe we are often bambozzled by the presentations we get through the media.  How well did "Sicko" present healthcare in the UK?  Sometimes I wonder what the rest of the world thinks of the US.  I have the funny feeling we appear to be a dog-eat-dog society conditioned to hunt and gather 24-hours a day.  Ken

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

> I have the funny feeling we appear to be a dog-eat-dog society conditioned to hunt and gather 24-hours a day. 

Do you mean to suggest we're not?

Sorry I can't write more but there's only an hour of daylight left and these roots and berries don't pick themselves.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

You are right about the bamboozling and many people in this country feel as many Americans do about the NHS, partly because familiarity breeds contempt.

My feelings about the USA are certainly not as you suspect, but one thing that I find very odd is that there seems to be a lack of a family doctor who you can just phone up and make an appointment for the next day, or even later on the same day if needed.  Also, how easy is it to get this doctor to make a house visit in the case of sick babies or the elderly and infirm?  I know you can go to ER, but that is only something we have to do in the case of an accident or emergency.  I have only been twice:once when I needed the knuckle of my thumb repairing and once when I tore the ligament in my knee............Sarah  

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Some doctors in the US are quite busy, and hard to get appointments with, but the primary care doctor I go to is not hard to get a next-day appointment with; I've often gotten a next-day appointment even for things that are not at all urgent. (This is not the doctor who is prescribing antibiotics for me; he isn't even interested in the antibiotic protocol.)

In some places, quick access has been found to be enough of a problem that "urgent care clinics" have been set up, which people can go to when their doctors are too busy, and they have some problem falling short of an emergency. My insurance company also provides a telephone number for urgent care, that supposedly gives advice on where to go and who to see for an urgent problem; but I've never had to use it.

House visits, though, pretty much went out with the invention of the car.

When I was a kid, I saw the same doctor all the time.  I try to stick with one doctor now, but I am lucky to have a golden health plan.  I know other's do not.  House visit?  What's that?  You have to be feeling really bad to go to the ER.  Not because you get mistreated, but because you have to wait and wait and you need to know you'll be there for hours on end.  We have a good friend who is an ER Doctor, he's a great guy and really cares about his work.  But, that don't change my opinion, it's a real investment to go to the ER here.  Ken

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be