Desmond O’Neill: An appalling (Irish) vista

Desmond O'NeillIt is sad that the memory of Lord Denning, the eminent jurist, will always be associated with the unhappy phrase “appalling vista,” pronounced during the appeal hearing of the Birmingham Six. By this he meant that prolonged, pervasive, and systematic wrongdoing by agencies of the state was inconceivable: unfortunately, subsequent scrutiny was to prove him misguided.

Such system-wide failings are not a monopoly of any one nation, and the Irish Ombudsman presented an equally appalling vista to the Irish people and government last week, even if somewhat eclipsed by the travails of the Irish economy. Concerned about persistent complaints to the Ombudsman over 25 years by older people and their relatives over failure to inform them of their rights to publicly funded nursing home care, she launched an extensive investigation. Her findings were quite categorical in confirming what many clinicians already suspected: over a period of almost 40 years the state had continually failed to clarify eligibility under an 1970 act of parliament which established a right to publicly funded long term care to those who needed it (1).

This left a vacuum whereby the vulnerable, disempowered and voiceless – knowing little better – opted for either a lesser subvention (a fraction of the cost) or paid the full cost. Those in the know, and those with feisty advocates or support from clinicians willing to counter the prevailing culture, could avail of this eligibility as either a publicly funded place in a private nursing home, or in a public or voluntary nursing home. Nearly the only way to be in a position to do this was from a hospital bed, but those who did so were often vilified as “bed-blockers” or viewed as unreasonable or demanding.

Some of the most heart-breaking scenes in my clinic over nearly twenty years were from families who were now cracking under the financial pressure, yet felt unable to use the only routes to a publicly funded bed. These were either to sue the health services – a risky and potentially highly costly process for people already under huge pressue – or to engineer a return to the emergency room and hospital, an unpalatable choice at many levels. Worse, from my time as medical director of our national Alzheimer’s society, were those who recounted tales of clinicians and discharge planners instructing and/or pressuring them to find a nursing home as their care episode was “over,” without informing them of their eligibility.

Our unit and hospital came under frequent verbal and organisational pressure not to clarify the eligibility: our rejoinder that we would comply with instructions to that effect in writing never prompted a written reply. Indeed, at one meeting of very senior health service executives, the conversation took a pointed turn to criticising geriatricians who clarified this eligibility. I tried to short-circuit this by again asking for written direction, and was told that “geriatricians should know the score.”

This typified the depth and breadth of complicity/collusion with a deliberate ambivalence that effectively concealed an important entitlemement from many vulnerable people. It is therefore not surprising that the Ombudsman expressed concern about the failure of the Irish Department of Health and health service to provide information which she required.

A further unfortunate consequence of the lack of clarity over eligibility was the build-up of a large constituency of the aggrieved, who were paying the full or partial cost of nursing home care. These then welcomed a scheme called the “Fair Deal” set up in 2009: older people pay 80% of their income, and after death, 5% per annum of the value of their house (for up to three years), and 5% of their assets (with no time limit), the most most dramatic loss of an eligibility in the history of Irish health care. Ironically, this was promoted on the supposed inequity of some getting publicly funded care, rather than the real inequity of the failure to inform, and support access to, publicly funded care.

While compensation for those affected between 1970 and 2009 is likely to follow its own logic (significantly, it emerged that the Department of Health had already settled a number of compensation cases out of court with stringent confidentiality clauses), a deeper malaise to be resolved is how to ensure a space for virtuous thought and action in healthcare services.

Even though this collective failure occurred under ministers of health of virtually all political parties in the state, many generations of doctors, nurses and healthcare administrators have also questions to ask of themselves, in particular how their practices perpetuated, aided and abetted a system which persistently averted its eyes from impaired access to an important service for its most vulnerable patients. Such sustained ambivalence about eligibility would not have been possible for cancer, cardiac services, or childrens’ services, and raises questions about deeply-ingrained ageism within the system.

There may also be uncomfortable elements of apocalyptic demography, portraying long term care as a disproportionate burden. This too is a worldwide phenomenon, as witnessed by the failure of the English parliament to embrace fully the findings of the Royal Commission With Respect to Age which showed that long term care free at the point of delivery was containable almost within patterns of future growth of the UK economy.

It is a measure of the man that Lord Denning could admit 11 years later that he had been wrong about the appalling vista: as physicians we should take note and aim to create a healthcare system that allows us to make space for recognising where we have erred, make amends, and do better next time, particularly for a vulnerable group which many of us will join in time.

Desmond O’Neill is a consultant in geriatric and stroke medicine in Dublin, whose research interests include transport, driving, and ageing.

(1) Office of the Ombudsman. WHO CARES? An Investigation into the Right to Nursing Home Care in Ireland. Dublin, Office of the Ombudsman, November 2010.