The spirit catches you and you fall down

During its war in Vietnam, the USA fought a secret action against the communists in Laos. The CIA recruited the aid of the Hmong, one of Indochina’s hill tribes with little love for the Pathet Lao. Their participation cost the Hmong their lands and livelihoods, and many took advantage of American promises of reward in the USA. Few found their dreams fulfilled. The Lee family were one such. They were settled in Merced, a small city in California, with poor accommodation and few prospects.

Their daughter Lia developed intractable epilepsy. The account of their engagement with the US health services is compelling.

Every A&E department has its heartsink patients; Lia, taken to the emergency room countless times in status epilepticus, was Merced hospital’s heartsink. Hmong shamans rationalise epilepsy as what happens when the soul flies from the body: the spirit catches you and you fall down. Her parents were desperate to reunite their daughter’s body and soul; her doctors were equally anxious to control her seizures.  Lia’s tragedy was that, try though they might, they could not find a way to do so.

The family wanted the help of conventional medicine. The paediatricians – an idealistic husband and wife team - were immensely caring and tried their best. But different social customs, lack of understanding, lack of a shared language, poor education, inflexibility — all contributed to a gap through which Lia fell.

The core of the problem — or perhaps what we would regard as the core of the problem — was Lia’s medication. Lia’s doctors did not want her to have second-rate treatment simply because she was from a disadvantaged immigrant community so they strove to develop a perfect regime . The trouble was that the family could not understand the complex and continually changing medication schedule, and all they saw was that the medicines were making their daughter ill. Finally, Lia was fit-free, but at a terrible cost.

Could it happen here? Lia’s doctors saw second-best as a form of prejudice. In the underfunded NHS we are used to muddle and compromise. We accept that people may be illiterate; that they may not know their date of birth or immunisation status, and that their family structures are different from ours. British GP training is about understanding the patient’s point of view and negotiating a mutually acceptable management plan.

But we should not feel smug. Last week I saw a middle aged Somali woman, looking twenty years older than the age on the computer. She had consulted many times about her pain, often as an emergency with no interpreter. Many things had been suggested and tried. She was no better, her daughter told me while her mother leaned back in the chair, her eyes closed, groaning and rubbing her side. Her mother felt that we didn’t care. I suspect my patient’s views and those of Lia’s parents would have been similar, and that my frustration would have echoed that felt by the doctors in Merced.

It has recently been suggested that the NHS should stop funding interpreters on the grounds that immigrants would then be forced to learn English. The idea that axing interpreter services will encourage integration seems ludicrous. It would remove a crucial channel of communication. Once you are over the age of ten, it takes quite a time to become fluent enough in a language to negotiate another country’s bureaucracy. If you are elderly it usually takes more effort than you are able to make — ask the Brits who retire to the Costa del Sol. Without interpreters social equity is impossible. They are essential, not just to the provision of decent health care, but to education. Unless someone explains, how can you understand the practice’s appointment system? Or the NHS referral system — something that does not exist in countries where direct access to specialists in the norm? How can you understand about pills and potions and side effects? And how can I understand what you are feeling, and how you interpret your symptoms and what you fear? I suspect that the kindness of doctors is for many immigrants their first encounter with humanity in the UK. We have a crucial role in helping people feel that Britain is a good place to be and we need to make the most of it.

The spirit catches you and you fall down, Anne Fadiman Publ. Farrar, Straus and Giroux 1998 ISBN 0-374-52564-1

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