Can "Our" Society Re-focus Its Efforts?

Discussion in 'Dementia-related news and campaigns' started by Petrus, Aug 11, 2007.

  1. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    When I worked in business at a senior level, the loss of an argument - especially an external loss - would immediately cause us to review our strategies and priorities. I hope this will happen within the Alzheimer's Society following Friday's deserved loss in the High Court on the NICE appeal.

    In the past 9 months I have tried on three occasions to engage the CE (or one of his staff) in three strategic topics. I have not even received a reply.

    1. When the campaign against NICE started we were asked to lobby our MP. I asked for factual data that I could use (I was new to Alzheimer's since my wife had been diagnosed only recently with early and rapid on-set AD). From my business experience, including voluntary work I do in retirement with UNICEF, I knew that a celebrity-based, emotional lobbying would have little or no effect.
    2. Given I got no reply (nor was there data on the web site), I did literature research to understand the situation better. I then asked for a response to the NICE question regarding the few people in the test panels who respond very positively to cognition enhancers. This is crucial since the balance of the panel show no meaningful difference vs. control (in plain language, the medication does no measurable good except for these few; frankly, cost is not the issue, rather it is effectiveness). Clearly it makes sense to use the medication for these few who show the strong, positive response and to apply resources in other areas for the rest of the sufferers.
    3. I asked why the society is funding dietary research (e.g. the Mediterranean diet). Interpreting such research is extremely challenging (research speak for "impossible"; it is like looking for a needle in a haystack when you do not know what a needle even looks like). Such approaches are fashionable in certain circles, but they do not pass muster as quality, scientific research. If there are (micro-) nutrients that have a significant impact on AD, the way to look for them is via mechanistic studies.

    I hope we will see the Society re-focusing its resources and energy in four areas:
    1. In determining who really benefits from cognition enhancers and why. It can then be argued (and strongly) that such people should get the medication. I do not understand why, apparently, the pharmaceutical companies making cognition-enhancers have not already done this research.
    2. On the trigger(s) of the disease. Short of some serendipity, this is the route to finding universal and truly effective medication - be it prevention, cure or alleviation of symptoms.
    3. On effective and consistent diagnosis and practical, caring support for sufferers. The National Audit Office Report and the NICE Guidelines on Care show how variable are these foundational aspects across the country (NAO Report) and how little is known (as opposed to guessed) about what constitutes effective, practical, caring support (NICE Guidelines). It is noteworthy that the recent Society document in this area simply asks the questions; it gives no answers nor any thought as to how answers might be found and then used.
    4. On effective support to carers (both professional and family).

    For those interested, I have provided considerable detail on what I argue needs to be done under points 3 & 4 above in a post (#18) on the thread "Documentary - Barbara & Malcolm".

    I do not claim that these thoughts are correct in every detail not that they are comprehensive (improvements would be much appreciated). I do claim that this is what sufferers and carers deserve from the Society claiming to represent them.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I asked Petrus whether he would mind my moving his post to a thread of its own, away from the political thread in this area where he originally posted it.

    The content is not so much political as organisational - the Alzheimer's Society organisation, and how its activities appear to carers to fit the needs of caring.
     
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    New Philanthropy Capital

    I was alerted to the following (and associated links) recently. For 'NSPCC', read 'AS' ......

    My simple take on this is that charities necessarily have to raise awareness - but should hard-raised funds be channelled into campaiging at all? There is a huge overlap, but huge distinction, between the two ......

    Put very simply, the question I asked myself this week, "At £2.50 per day how many sufferers could AS fund drugs for in lieu of diverting money to campaigns?"

    I don't know the answer - nor even if it's the 'right' question .... but thank Petrus for raising a hugely important point and to Brucie for highlighting it further ........

    Karen, x


    http://society.guardian.co.uk/children/comment/0,,2138645,00.html
     

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