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Monday, January 2, 2012

How civilised are our societies?

Happy New Year to our readers!

Wish we could start at 2012 with more positive news then the reported 74 deaths, or more,of people who have intellectual disabilities within the U.K.'s national health system. These deaths were "either caused or complicated by mistakes in hospitals and decisions by staff who failed to treat them properly and displayed ignorance or indifference to their plight, according to the charity Mencap and families of some of those who died."

These deaths were identified as having occurred within the past decade. Intuitively this feels like a very low number. It begs the question: do we know the real number of people with disabilities - and not only those with intellectual disabilities - who have died in the UK's national health system? How many have died or may have received further impairments or illnesses in health systems and hospitals in any country?

Professor Sir Bruce Keogh, the NHS's medical director was reported as saying that "one of the measures of a civilised society is how well it looks after the most vulnerable members of its society." This line is often quoted. But concerns about negative experiences of people with disabilities and health systems are not new. They are increasingly being raised these days but earlier recalls for action do not seem to have made the difference that is required. We seem to have been living in uncivilised societies for a long time, despite promising rhetoric.

Perhaps it is not really surprising that fundamental change with regard to health disparities of people with disabilities or with regard to adverse events in hospitals, or elsewhere, is so hard to achieve.

Most of us live in economies these days, not countries, or societies. The ways in which economics has been practised since the 1980s, influencing almost every sphere of life, has made everyone into health consumers, who often represent the throughput in 'health systems' and hospitals that are run along business lines. In the economic approach to health care efficiency and effectiveness is prized above meeting health needs well. You might remember the hospital awarded as the most effective and efficient one in the entire UK in the BBC's Yes Minister TV series. It was fully staffed and had no patients.

The often complex, are long-term needs of patients who have disabilities, combined with sometimes challenging behaviours and different ways of communication, require time, and careful attention. In essence their health needs are no different to those of anyone else but how the needs of disabled patients are met represent a real  litmus test for the civilised nature of our health systems, or otherwise.

And when the effectiveness and efficiency meet with a medical view of disability the result can be a poisonous mix.

It is attitudinal change that people with disabilities need first and foremost. The attitudinal change that we need revolves around paying attention to health needs, taking responsibility for them, doing so competently and doing so in genuine participation with us as patients. It is doubtful that such attitudinal change could flourish within a dominant economic/medical values framework, which is at odds with it. It is also doubtful that attitudinal change could be sustained by a once-off module given during medical training, or by disability liaison officers within an environment of high staff turnover and a general ignorance about disability. Good disability health advocacy of an ongoing nature will protect some vulnerable individuals and may even affect some attitudinal change, but how do we lastingly transform prevailing attitudes towards people with disabilities within the health system when that system itself is embedded in a society that has a long way to go in fully including people with disabilities as equals?

It seems that only a practical framework that is embedded in all processes within the health system, one that genuinely revolves around care, could transform attitudes and civilise us. Taking care by paying attention to the person's needs, consciously taking responsibility for meeting them, doing so competently and in partnership with the patient can be practised at the admissions desk, in preventive health care, at the hospital bed, by any surgeon and in any surgery. Our actions, values and attitudes continually inform each other.

It seems quite plausible that by first acting within this framework of care we will come to eventually internalise a more positive view of others, who are presently seen as SO different, and transform ourselves as naturally caring people. Doing so does not necessarily cost money. It might even save some. but most of all it seems a sensible approach towards saving lives of those among us who are most vulnerable. A civilised society anyone?