It doesn’t mat­ter when you got your brain in­jury – all care should be fit for pur­pose

The Irish Times - Tuesday - Health - - Health Back Page - Des O’Neill

As­tand-out ex­pe­ri­ence of the sum­mer hol­i­days was a stand-up pad­dle board “sur­fari” up the Cloghane es­tu­ary on the Din­gle penin­sula in Co Kerry. Al­though I had thought my­self fa­mil­iar with the beau­ti­ful moun­tain and marine land­scape, the ex­pe­ri­ence granted me rad­i­cally new and stim­u­lat­ing per­spec­tives, adding enor­mously to the ex­pe­ri­ence and plea­sure.

This re­minded me of the power of the med­i­cal hu­man­i­ties in my ev­ery­day work, where ex­plor­ing well­be­ing, ill­ness and the health sys­tem through film, mu­sic and lit­er­a­ture al­lows us to chal­lenge and re­visit ac­cepted con­ven­tions.

An ex­am­ple for me was how a clas­sic of Vic­to­rian lit­er­a­ture il­lu­mi­nated the po­ten­tial down­sides and chal­lenges of ad­vo­cacy when re­flect­ing on two re­cent re­ports on nurs­ing homes.

Surely ad­vo­cacy is a good and no­ble en­ter­prise, the epit­ome of moth­er­hood and ap­ple pie, I hear you say?

Aside from a num­ber of mis­spending scan­dals by ad­vo­cacy or­gan­i­sa­tions and set against the back­ground of the bizarre mul­ti­plic­ity of health char­i­ties in Ire­land (be­tween 48 and 252 for sui­cide alone, ac­cord­ing to one re­port), each with their own ad­min­is­tra­tive and other costs, ad­vo­cacy that is not care­fully moored and con­tex­tu­alised may go awry and be harm­ful.

In An­thony Trol­lope’s de­light­ful The War­den a prig­gish young sur­geon starts a cam­paign of in­dig­na­tion against what he per­ceives to be un­fair priv­i­lege at­tached to the post that his fu­ture fa­ther-in-law will as­sume on re­tire­ment as the war­den of an almshouse.

Pru­dence and in­sight

With gen­tle if sly hu­mour Trol­lope dis­sects how all play­ers in the novel lost out from this un­think­ing if well-mean­ing cam­paign, where right­eous­ness was not bal­anced by sen­si­tiv­ity, pru­dence and in­sight into the op­ti­mal mo­ti­va­tors for change.

These fac­tors res­onated in this first story, a re­search study car­ried out with Head­way on res­i­den­tial care for peo­ple with ac­quired brain in­jury, en­ti­tled Adding In­sult to Brain In­jury. A key mes­sage re­layed was de­cry­ing that those so af­fected should be in nurs­ing homes with older peo­ple.

Af­ter only a mo­ment’s re­flec­tion it seems there are trou­bling el­e­ments to this train of thought. These in­clude ageism and a tol­er­ance of low­ered ex­pec­ta­tions of what we de­mand of res­i­den­tial care for older peo­ple, most of whom also have ac­quired brain in­jury through stroke or de­men­tia. Surely we should be mak­ing com­mon cause for res­i­den­tial care which is sup­port­ive, do­mes­tic in scale and fos­ter­ing of in­de­pen­dence for res­i­dents at all ages?

The im­por­tant mes­sages of how these el­e­ments are still de­fi­cient in very many Ir­ish nurs­ing homes got lost in an ageist dis­course. Such di­vi­sion and pars­ing of hu­man suf­fer­ing by age and con­di­tion can be a real haz­ard of ad­vo­cacy, as ex­em­pli­fied also by the Ir­ish Cancer So­ci­ety’s call for free park­ing in hos­pi­tals for pa­tients with cancer rather than join­ing with other ad­vo­cacy groups to look for this for all pa­tients based on need.

Crit­i­cal re­flec­tion

Equally, a re­fer­ral by Sage, an ad­vo­cacy or­gan­i­sa­tion for older peo­ple, of treat­ment of older Ir­ish peo­ple to the UN Com­mit­tee Against Tor­ture gave op­por­tu­nity for crit­i­cal re­flec­tion.

On the one hand one might cheer the dra­matic, if fleet­ing, rais­ing of public at­ten­tion to the lack of clar­ity and sup­ports re­lat­ing to de­pri­va­tion of lib­erty, one of the most chal­leng­ing as­pects of care of those with sig­nif­i­cant de­men­tia. How­ever, the fo­cus of the Sage sub­mis­sion on leg­isla­tive mea­sures may de­flect at­ten­tion from the mul­ti­plic­ity of changes needed to min­imise or elim­i­nate un­nec­es­sary de­pri­va­tion of lib­erty.

For a con­di­tion as com­mon as de­men­tia these in­clude up-skilling of a wide range of staff in geron­to­log­i­cal skills, ap­pro­pri­ate re­ha­bil­i­ta­tion and man­age­ment, trans­par­ent ac­cess to ad­e­quate com­mu­nity ser­vices, and so­phis­ti­cated spe­cial­ist as­sess­ment.

It also re­quires the nur­tur­ing of a broader sense of iden­ti­fi­ca­tion by the gen­eral pop­u­la­tion with their own present and fu­ture vul­ner­a­bil­ity, and of the value and ur­gency of im­ple­ment­ing this frame­work of care and sup­port.

Will the sig­nals emit­ted by re­fer­ral of the mat­ter to the UN Com­mit­tee Against Tor­ture aug­ment or hin­der this process? So, lever­ag­ing the in­sights in Trol­lope’s nov­els we should learn to use the small but im­por­tant aca­demic lit­er­a­ture on the com­plex­ity of ad­vo­cacy to man­age change ef­fec­tively.

This should fuel more crit­i­cal re­flec­tion, dis­cus­sion, and re­search into how we un­der­take and an­a­lyse public ad­vo­cacy. It should also prompt us to ask whether our ad­vo­cacy is un­wit­tingly skew­ing the pro­vi­sion of health­care and re­in­forc­ing ex­ist­ing gaps in the health ser­vices, a re­minder of Os­car Wilde’s epi­gram that the truth is rarely pure, and never sim­ple.

‘‘ Di­vi­sion and pars­ing of hu­man suf­fer­ing by age and con­di­tion can be a real haz­ard of ad­vo­cacy

The fo­cus of the Sage sub­mis­sion on leg­isla­tive mea­sures may de­flect at­ten­tion from the mul­ti­plic­ity of changes needed to min­imise or elim­i­nate un­nec­es­sary de­pri­va­tion of lib­erty

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