Advocacy is not a zero-sum game

 

Sir, – We want to thank Prof Des O’Neill for his enjoyably rich and thought-provoking article about, among other things, the ethics of advocacy (“It doesn’t matter when you got your brain injury – all care should be fit for purpose”, Health + Family, September 12th). Nobody should, and nor do we, contest the assertion made in the headline of his piece.

As a rehabilitation service for those with acquired brain injury, we support and advocate for our clients of all ages and all diagnoses, which includes stroke.

We would, however, like to address any implication that there was ageism inherent in a recent piece of research conducted in conjunction with Headway clients, “Adding Insult to Brain Injury”. This piece of research, as with all research projects, was designed with a specific focus in response to a specific research question; what is the experience of those aged under 65 with acquired brain injury inappropriately placed in nursing homes?

The participants in the study told their stories and described their experiences. For some, living with older adults, some of whom had dementia, was not a positive rehabilitative experience.

It is not our role to censor or edit our participants’ narratives but to do our best to highlight them.

Prof O’ Neill hints at the hazards inherent in what he refers to the “division and parsing” of human suffering by advocacy which can be used to further the aims of one disadvantaged group over another.

We do not believe advocacy is a zero-sum game and that one cause’s “success”, whether measured in terms of car parking for cancer patients or appropriate care for younger brain-injured adults, necessitates the failure of an equally worthy cause elsewhere.

Although we welcome the opportunity for critical reflection on the purpose of research and policy based advocacy for which he calls and its role in influencing healthcare in Ireland, more welcome still would be policy and practice interventions that address the needs of some of our most vulnerable citizens in an appropriate way.

In the absence of significant progress, we will continue to press for improvement in the lot of everyone, young and old, affected by acquired brain injury in Ireland. – Yours, etc,

Dr MARCIA WARD,

Senior Clinical

Neuropsychologist,

Headway,

Kenny Group House,

Cork.