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