While we were scouring the supermarket shelves for a loaf of bread last week and wondering whether it was practical to get to work on one of those new silver scooters, some people with rather more to worry about were draining jerry cans of petrol for a trip to Downing Street.

With the hauliers engaged on a much higher-profile protest, people with multiple sclerosis did not have a lot of hope of getting the newspapers, let alone Blair, to take any notice of their demo, but they went anyway. They handed in a petition with more than 100,000 signatures urging the government not to ban beta interferon and similar drugs from the NHS - the only medicines in existence which are thought to slow down the progress of a distressing and debilitating disease. That was last Thursday.

The day before, a campaign had been launched. Another invisible event. This was the People's Voice for Health, or PV4H. It is the brainchild of the Long-term Medical Conditions Alliance, an umbrella organisation for nine patient groups concerned with conditions from asthma to Parkinson's, breast cancer and, of course, MS.

What do they want? They want a patient-centred NHS. Doesn't everybody - and most of all the government? Wasn't that what the national plan was all about? Well yes and no. These people - the MS demonstrators and the PV4H campaigners - know the NHS better than anyone. They know the grimy wards and the hospital doctors who are curt from sleeplessness. They know the lousy food and the chairs for endless uncomfortable waiting outside consulting rooms. But they also know - often as well as the doctors - what can be done for them. Their long-term illness has become a lifetime study.

Through books, articles, discussion with other patients and the internet, they have winkled out every last bit of information they can. These people, the ones with long-term illnesses, are one-third of the population - the biggest users of the NHS - and they want to be taken seriously.

The national plan offers matrons and bedside TV. It proposes Pals - a patient advocate and liaison service - to help with complaints. None of this is to be sneezed at, the patients say, but they want more. They want doctors to talk to them, not at them. They want partnership in dealing with their disease, not patronage. But they want it not just from the GP and consultant on the ground, but from the policy-makers above them. It's not just about manners. It's also about treatment. MS patients are out there in the vanguard. They want beta interferon.

They are appalled that the National Institute for Clinical Excellence (NICE) is planning to recommend that the NHS drops it. They don't care that the scientific evidence shows the drug has only a marginal benefit in some patients. They are spitting mad that the NICE boffins did not invite them in to hear what they have to say about the improvements the drug makes in their quality of life.

What patients want is to be party to these decisions. The government ignores the MS sufferers at its peril, because there will be many more behind them. The pharmaceutical industry has read the runes. It wants to talk directly to patients through advertising - presently banned - about the new drugs it has to offer. The drug companies, anticipating that some of their new expensive medicines will be rationed, are looking to patient power.

Drug companies have been strategically funding patient groups for some time. Having denied for a long time that advertising direct to the consumer was on the agenda, the Association of the British Pharmaceutical Industry (ABPI) is now openly advocating "dialogue" on the subject.

It is illogical, says the ABPI, that manufacturers who know most about their drugs cannot tell the patient about them, particularly when there is stacks of stuff on the internet. There is a patient leaflet, of course, which does the job, but you only get that when you pick up your prescription from the chemist.

Do we really want to go down the US road, with seductive TV ads for the latest "must-have" medicine that we might be better off without? The fact is that few people would be interested in drug advertising, apart from the drug companies, if patients were treated like grown-ups.

They - we - need information about the medicines that are out there and those that are on the horizon. But we need it from an impartial source. What would be good would be a patient-oriented website put together by someone without the commercial interest and linked to NHS Direct.

NICE and the government have to listen, just as doctors must. Respect for the patient is critical now, or all the trumpeting of glorious change in the NHS will wither in a winter of discontent.