SECOND OPINION:We need to tackle disabilities head on with positivity, writes DES O'NEILL
DURING THE election campaign, I was struck by how a number of senior candidates spoke about health in terms of protecting cancer and cardiac services. That they neglected to mention protecting services for stroke and dementia, the two most significant causes of acquired disability in adulthood, was notable and tells us much about the Irish people and their attitudes to illness.
For politicians are not only intelligent, but also have their finger on the nation’s pulse: if the politicians thought we believed that these services were high priority, then they would have promoted them as well.
It is not that we are an uncaring race: in all likelihood, our attachment to cancer and cardiac services arises from a combination of a cautious optimism about treatment prospects, and a sense of our collective vulnerability.
This was not always the case – Susan Sontag wrote her celebrated Illness as Metaphor in response to the poorly-developed nature of cancer services in the early 1980s. As a result of her advocacy, and that of many others, the tide has turned for this illness, and the Irish have invested heavily in cancer (and cardiac) services over the past two decades.
Yet despite clear advances in care at many levels for diseases of the brain, we still have some way to go before we demand the same support from our politicians for services for those with illnesses such as stroke, dementia and epilepsy.
National Brain Awareness Week affords us an opportunity to reflect on why this is the case, to showcase the advances that have occurred, and highlight what we might achieve if we can recalibrate our sights to a more positive approach to illness and the nervous system.
And changes there have been: while in no way detracting from the gravity of the illnesses, everything from stroke units, dementia training for nurses to biological agents for multiple sclerosis combine to give cautious new hope for illnesses of the brain.
Perhaps professionals and advocacy groups need also to ask themselves whether their presentation of their case to date has afforded an opportunity for the public to identify with these conditions in a constructive way, and engendered a sense of “that could be me, and my life could be better with better services”.
Do we have any parallel for the public profile of those affected with cancer who spread positive messages, such as those portrayed by Lance Armstrong for cancer, whether in popular magazines or films such as Dodgeball?
The use of champions with brain illness, as pioneered by the Irish Heart Foundation Council on Stroke, has been a helpful step on this path, demonstrating ongoing vitality and contribution by those with stroke. This was exemplified by Prof Terry Dolan, continuing to write after his stroke, and giving a message of both positivity and of the need to develop very underdeveloped services.
For the professionals (and very many professionals are involved with the Neurological Alliance of Ireland – geriatricians, old age psychiatrists, neurologists, nurses and therapists), we need to find ways to spread the good news (of the many advances) along with the bad news (the under-funding and neglect of services which prevent those with diseases of the brain reaching their full potential).
We need to ally with the patient groups, and welcome the enrichening of the field by the different approaches of many disciplines.
Developing an articulacy on the fullness of life of those affected by illnesses of the nervous system, without appearing in any way to minimise or neglect the very real challenges of these diseases, is a skill which will require tact, sensitivity and endurance.
Breaking prejudice and nihilism about brain illnesses will not be easy but can be done – the public negativity around John Paul II when physically disabled but sharp intellectually was helpfully challenged by Prof Tim Lynch in the Letters column of this newspaper in 2002. In the US, Obama’s audacity of hope has become somewhat careworn, yet it has resulted in major changes in the framing of healthcare system.
We too need to find practical and inspirational ways to move from the view of the acquisition of brain illness as a disaster, and promote a cautiously audacious hope that it will be seen as a life change which can be better managed with better services, and closer working between the many disciplines involved.
Des O’Neill is a consultant in geriatric and stroke medicine in Dublin