From “Estates of the Nation”, Lynsey Hanley

“Social isolation is treated as a fact of life. Women living on higher floors with young families repeatedly lament the fact that they cannot let their children out to play, and often that they don’t see people other than their spouses or children from one day to the next. Several people – usually men living alone – comment on the role of home aquaria in providing quiet company and relieving stress.”

 

Lynsey Hanley,”Estates of the Nation”  (review of “Vision and reality” by Stephen Willats) TLS, October 7 2016.  http://www.the-tls.co.uk/articles/private/estates-of-the-nation-2/

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“disrupting Health insurance” ≠ “improving the quality of healthcare

A few days ago I saw the following on my twitter feed:

I followed the link to the HIMSS website. What are the 4 ways in the Tweet? Well, they are:

  • The Use of Wearables in Wellness Plans
  • Three billion mHealth App Downloads and counting
  • Sensors and apps are everywhere
  • The Big Data Revolution

According to the blog post at least. I’ll leave it to the reader to make their own judgment.

I guess it may have been the trigger word “disrupting”, but I posted a rather grumpy tweet:

To which, shortly after, came a reply:

 

Perhaps I should have replied “solutions to what exactly?” (cf prior posting on solutionism) Anyhow, I replied and Stefan graciously replied and a rather civil exchange ensued.

Thinking about it again, perhaps I deviated from my original point too fast. Health insurers are in the business of selling a product to consumers. The product is coverage for access to healthcare – they are not providers of health care itself. Surveying the world of digital health, I sometimes wonder if the complexities and vagaries of the US healthcare sector – which represents the highest proportion of GNP of any developed country, and yet is notoriously complex, difficult to navigate, and all round obtuse – deforms how many players approach the sector. We often hear about engaging clinicians and “clinical workflows.” Insurers are clearly players in the game, and important players (especially in the US) but they are not clinicians or indeed service users.

I keep coming back to Neil Versel’s piece (and the comments following) from Feb 2013:

What those projects all have in common is that they never figured out some of the basic realities of healthcare. Fitness and healthcare are distinct markets. The vast majority of healthcare spending comes not from workout freaks and the worried well, but from chronic diseases and acute care. Sure, you can prevent a lot of future ailments by promoting active lifestyles today, but you might not see a return on investment for decades.

And indeed, other factors may scupper your promotion of active lifestyles – all of this can be for naught with highly effective technologies encouraging consumption of calories and media (“binge culture” has several sides) at the same time.

More thoughts on forest bathing

“Forest bathing”, notwithstanding my thoughts in this blog and in previous posts, does seem to straddle the boundary between my medical and non-medical interests. There is a wider debate as to the nature of health and illness which the pursuit of forest bathing may inform…

Séamus Sweeney

I have posted before on “forest bathing”; the first post being perhaps a little over-critical of the potential for over-therapeutising what is essentially an attentive walk in the woods, the the second more celebratory.

Since then I have spent more time in the woods, both alone and with family. I suppose my initial resistance to the “forest bathing” concept was grounded in a fear that, as can often happen, an activity worthwhile for its own sake becomes taken over by purported health benefits.

Yet being aware of the concept of forest bathing – and the concomitant sense that This Is Good For You – hasn’t dimmed my enjoyment. Now I see forest bathing as less a “therapy” than a call to engagement in the world, and in the world of nature in particular. It is easy to be cynical about the whole concept of “nature” and “the natural” and…

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“a wry, gentle masterpiece” My review of “A Smell of Burning” by Colin Grant in current issue TLS

Having alluded to this beforehere it is

 

Dreamy states and forced thinking

Subtitled The story of epilepsy, Colin Grant’s A Smell of Burning is, most vividly, the story of Grant’s younger brother Christopher, who died in 2010 aged thirty-nine, during a seizure – a Sudden Unexplained Death in Epilepsy, or SUDEP. Christopher was the dedicatee of Bageye at the Wheel (2012), Grant’s memoir of a 1970s childhood in Luton dominated – until his mother showed him the door – by his father, the perpetually choleric, feckless Bageye. “In Memory of Christopher Grant (Baby G) – A wry, gentle, amused and thoroughly splendid fellow” reads the dedication, and A Smell of Burning captures the adult life of Baby G adroitly.

Bageye has a cameo in A Smell of Burning, thirty years later, anxiously asking Grant “How Christopher? I hear him have head trouble”. As Grant writes,

my father was a Jamaican born in 1928. His ­perception of epilepsy would have been shaped and governed by superstition that runs like water through the island. People marked with head trouble were all the more scary because until they did something that revealed their condition it was impossible to tell them apart from anyone else.

This fearful regard of epilepsy was not ­confined to Jamaica. On one levelA Smell of Burning is an account of (partial) progress, with fear and ostracization gradually giving way to a greater level of understanding, both neurological and social. These approaches have an uneasy relationship: “often the patient is lost in these early accounts of the growth of neurology; the focus is on medical advancement, and the patient is the means to it: his body provides the pathway to enlightenment”.

Enlightenment about epilepsy existed, at times, in the pre-Enlightenment world; Herodotus, in discussing the illness of Cambyses II, distanced himself from the notion of a “sacred disease”; the Hippocratic text On the Sacred Disease is an attack on the very notion of epilepsy as a deity-induced illness. And for all the advancement that has been made, epilepsy retains much of its mystery: considering the visionary, logorrhoeic experiences of Philip K. Dick, Grant writes that “all too often it has been assumed that psychiatry offers the best model to describe some of the behaviours and personality changes in temporal lobe epilepsy, but maybe these behaviours have only the appearance of similarity, and something altogether different is going on in the brain”.

The book is something of a hybrid; the disease memoir crossed with a more detached journalistic account of the history of a particular condition in history. Careful to point out the pitfalls of retrospective diagnosis, Grant weaves his brother’s story together with those of Fyodor Dostoevsky, Harriet Tubman, Vincent Van Gogh, Julius Caesar and a much wider cast of anonymous epileptics. We also read of the medical mavericks, megalomaniacs and pioneers (many of whom merited all three descriptors), whose insights merged eerily with the literary; “the language of Dostoevsky and Hughlings Jackson was uncannily similar. Both men were able to conjure for readers the spooky ‘dreamy states’ and ‘forced thinking’ of epilepsy”.

Some of the richness of the book comes from a sense of holding back. The same restraint was already evident in Bageye at the Wheel, whose somewhat wry, amused take on Bageye’s misdeeds carried a depth of emotion all the more powerful for forgoing the template of the misery memoir. Grant, who studied medicine for five years at the Royal London Hospital, presents us with a superb memoir of medical student life in the mid-1980s. In asides to the main story, he evokes the blend of detachment, disorientation, reverent fear of the consultant and a sense of practical uselessness which characterizes much of medical student life.

When, shortly after a seizure, Christopher insists on driving, Grant experiences a feeling chillingly familiar to many who care for those who, in one way or another, lose control – “a sudden sickening fairground ride of emotion – a shearing-away of certainty”. Later, he is asked one of the most arresting questions a carer of someone with epilepsy can consider: would you wish to experience what they experience? There is a veil of unknowing over what happens to the person, a veil they themselves cannot penetrate after the event. Christopher

with age seemed to grow more accepting, as if he had reached some accommodation with the seizures. At times he woke after a seizure with a look of such disappointment; and I imagined him at the end of a dialogue with the fits urging them not to go just yet, like Horatio commanding the ghost of King Hamlet, “Stay, illusion!”

The visionary seizures experienced by Harriet Tubman after a head trauma helped inspire the Underground Railroad, and while not personally religious, Grant is open to ­considering the heightened religiosity seen in some epileptic presentations as being on the credit side of the ledger.

Like so many with a chronic condition, Christopher kicked against being defined by epilepsy and its treatment.

“If he would just tek the medicine. Why the boy can’t tek the medicine, God for tell”, was a constant refrain of my mother’s. When questioned about his non-compliance Christopher would counter that the drugs didn’t work. Or that they dulled him and left him thick-headed. Other sufferers have spoken about how they have felt trapped in this way by the condition.

Colin Grant’s exploration of the literary, political, medical and scientific history of epilepsy is hugely compelling; his telling of the story of two brothers transcends the book’s twin genres and leaves us with a wry, gentle masterpiece.