[Dysphagia] Response

[eripley at yahoo.com (Irene Campbell-Taylor)]

Lisa,

I undertook to answer your message in more detail but I hardly know where to begin. I have been a contributing member of this list for several years. If you go back in the archives to my earliest messages, when my e-mail ID was ICTTOR, you will see just how long. Initially, I assumed that everyone understood that the stomach and esophagus are essential components of the whole functional unit of swallowing and referred to GI impairments as part of my responses to questions. I was savaged by many list members who insisted that ?We don?t need to know about the esophagus? and/or ?That?s not our area.?. I am glad to note that this attitude has changed. I can only hope that attitudes about other ?givens? re swallowing will also change. This hope is the only thing that keeps me banging my head against what seems, at times, to be not just a brick, but a solid concrete wall.

I fear that, in your questions, you have done what I beg people never to do and that is interpret what they hear or read through the filter of their preconceived notions. The issue of whether or not aspiration is harmful can never be answered by a simple ?Yes? or ?No?. As I have repeatedly said, it must NOT be taken in isolation but as part of a Combination, a mathematical construct that goes as follows:

Aspiration of what X how much X over how long a period X the patient?s resistance to infection, the last item being possibly, the most important. This gives 4! or 1x2x3x4 or 24 possible basic conditions per patient. Add all comorbidities, medications, age, gender etc. and it becomes apparent (I hope) that it is not a simple situation.

If you check messages over the past few years, you will see that I have not said that thickeners should NEVER be used. I have, in fact, indicated that I recommend thickening under certain conditions ? although not with commercial thickeners. I know very well that I will never be supported by Novartis, Mead Johnson et al for seminars or workshops. Not everyone is as willing to shoot the cash cow in the interest of education and patient care. What other reason could I possibly have for consistently drawing attention to what is known and published as opposed to what is believed and promulgated? It certainly isn?t money or prestige or popularity.

Recently, I posted a message that said that I don?t care if you thicken everything in sight as long as you make sure that the patient receives enough water. This is the important point. Patients aspirate thickened fluids, as has been proven, but even that, most of the time, doesn?t matter ? it?s the lack of water that thickeners cause that does the damage. I would point out here, that I have never made a statement of fact without backing it up with, at the very least, a reference, usually an abstract and sometimes an entire article. 

Your comment about my withholding information continues to baffle me. I have met some members of your list of ?experts? at conferences such as ASHA, DRS etc. They expressed to me amazement that I give away so much information for free, and that they never would.

You know nothing about me, my background, education or experience. Those members of this list who have read my C.V. will, I believe, agree that it is unusually broad in scope. I hold five degrees, in related fields and my publications are, almost exclusively, in medical journals such as the Journal of the American Geriatrics Society, Annals of Neurology, NEJM etc. as well as Dysphagia.

In 1987, I together with a medical colleague, published the first article (as far as I know) that said one should not use tube feeding in terminally ill elderly patients but continue with ?careful spoon feeding.? I was savaged for that one as well. Recently, Finucane et al, published an article saying exactly the same thing, although they did not have the grace to cite me, but did use the above phrase as well as some others contained in the 1987 article. I live in hope that there will be a paradigm shift in swallowing disorders of the same magnitude.

I would be more than pleased to debate any or all of your panel of ?experts?, singly or collectively, in public on any issue of their choosing, at any time and in any place. I think you could sell tickets for that one.

In the meantime, please re-read my various messages with an open mind and see what I have actually said, not what the perception is.

Sincerely,

Irene Campbell-Taylor.



Dr I Campbell-Taylor
Clinical Neuroscientist
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