Refining a Clinical Care Protocol for MND


I love neurologists – they talk my sort of scientific language. But some of them are complete prats when it comes to Clinical Care.

It’s as if they were indoctrinated at Medical School with only three strands of dogma: ALS is an untreatable terminal disease; there are no fixed rules regarding prognosis; clinical care is solely about managing symptoms. And that’s it. Many of them seem to have turned off at this point in their postgraduate lecture and never re-engaged their brains on the subject of MND Clinical Care ever since.

At least, that’s the kindest explanation I can construct as to why such otherwise-highly-intelligent-and-educated professionals can sometimes be so mindbogglingly wrong about the concept of refining a Clinical Care Protocol for MND.

Basically, they insist that it can’t be done.

I think they possibly turn off a bit as soon as they’ve finally got the notoriously difficult diagnosis. After all, “ALS is an untreatable terminal disease” so, once they’ve pronounced their verdict they maybe feel there’s nothing especially clever left for them to contribute. OK, in that case, as their attention drifts can those of us on the receiving end of the diagnosis at least follow a carefully-refined Clinical Care Protocol that’s been optimised based on decades of Neurologists’ experience?

No. We can’t.

“There are no fixed rules regarding prognosis,” they intone, remembering the mantra of their Teaching Hospital. If I continue to look dubious, they attempt to clarify their logic by arguing that in an unknowable future it is impossible to follow any pre-determined strategy (which is, in practice, all that a Clinical Care Protocol is). Instead, returning to their Professor’s dogma: “Clinical care is solely about managing symptoms,” when, and if, they appear. Pure logic.

Except they’re out of date. The fundamental assumption underpinning their logic was unsound even twenty years ago. These days, it’s completely invalid.

The point is, Management Science has moved on leaps and bounds in the interim. Outside the medical arena, business executives in the 1990s demanded ways to cope in an increasingly turbulent economy. And techniques such as Scenario Planning came to the rescue.

In essence, the solution that CEOs around the world all grabbed was to come up with a number of reasonable scenarios for how strands of the future might unfold. While you still have plenty of time, you also think through how you could best respond to each of those scenarios if they ever happened. And finally, you make a note of how you’d know if any of those scenarios actually was starting to come true.

That’s it. You now have a strategy for dealing with an unknowable future.

All the top corporations have been using variants of this approach for decades. It works. Very well. It would work equally well as a way of refining a Clinical Care Protocol for MND.

It’s just that very few Neurologists ever went to Business School.

Fortunately, for many years I was a Business School professor. So, as part of my Radical DisABILITY research, I’m going to have a go at documenting at least a draft-outline Clinical Care Protocol. Of course, it will only represent my limited thinking on the subject. And, as such, you should not treat it as anything other than a working hypothesis. But maybe in due course it will stimulate some of the Neurologists out there to devise something useful.

Or even take a course at Business School.