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You may have seen the figures going around about how people with Learning Disabilities die, on average, fifteen years sooner than people without.  I stumbled today across the 2010 report that seems to be the original source of the figures.

It’s called, in a superbly what-it-says-on-the-tin, no-bull way, ‘How people with learning disabilities die‘.  For a report based on statistical analyses of probability and therefore necessarily using terms like median, Standardised Mortality Odds Ratios, confidence intervals and Chi Square tests, it’s brilliantly readable.  Props to the authors for thinking very carefully about their use of language.

What it says is that All groups with definite or possible learning disabilities died younger than people without.  People with learning disabilities, but no physical condition reported as a cause, lived longest; but the age by which half of these had died was 15 years younger than for people without learning disabilities.

In other words, even if you are physically fit and healthy, having a learning disability is likely to shorten your life significantly.

If you have a physical condition underlying your learning disability, such as cerebro-spinal malformations or a genetic disorder, your lifespan is likely to be even shorter.  People with Down syndrome commonly die in their fifties and sixties, and people with hydrocephalus / spina bifida in their thirties and forties.  I guess it’s commonsense that if you have a physical condition, your body is likely to wear out sooner.

We had to begin facing this when Grenouille was seven-and-a-bit.  The little body that, up to then, had seemed perfectly healthy, began manifesting various conditions that are life-threatening.  Ever since, G’s, and our, time has unfolded in the shadows of a growing mass of medicines and machines that narrow our view down the days, even as they keep the slightly-bigger body tethered to life.  Every so often, my mind tiptoes around the idea that one day we will probably have to say goodbye to G; that it’s very unlikely to be the other way about.  How many parents, I wonder, live with the knowledge that it will almost certainly be them, one day, burying their child?  I probably have a disproportionate number of such parents in my acquaintance.  Like calls to like.

I tell myself that at least we had those seven (and a bit) gloriously carefree years; and that a couple of brushes with the darkest shadows since have taught me to value every day in a way that I didn’t before.  That as G’s Mum, if someone has to follow a coffin, grieving, I would rather it be me than G.  Only if it’s G’s body giving out, though.  Not if it’s because somebody blundered with the medicines or the care.  If that were to happen, I would be a tornado of fury and retributive vengeance.  Less Psalm 23 and more Exodus 21:24.

The authors of the report, of course, did not go into eye-for-an-eye mode, but they did recognise that it was eminently possible that some of these very early deaths were not due simply to imperfect bodies breaking down faster.  They looked at specific causes of deaths by age groups and compared causes of death in learning-disabled and non-learning-disabled people.  They found, as you’d expect, that people with Down syndrome, for example, were more likely to die of heart or thyroid-related problems.  Heart and thyroid problems are commoner among people with an extra Chromosome 21 than among the general population.  It would be likely that causes of death would correspond with the prevalence of those conditions, giving rise to the differences between people with T21/Down syndrome, and people in the general population.  However, even allowing for the deaths that could be linked to specific physical conditions, it seemed as though the death-rate amongst people with learning disabilities was higher than that of the general population.  It was reasonable to infer that some of these deaths were probably preventable.

On the subject of avoiding preventable deaths, the authors said, Two, possibly preventable, causes stood out as particularly important, because they were common and affected most groups of people with learning disabilities. They were lung problems caused by solids or liquids going down the wrong way (14% of deaths where a condition associated with learning disabilities was reported), and epilepsy or convulsions (13%). 

They also noted that Just over 5% of people with hydrocephalus / spina-bifida died with pressure sores; in three quarters of cases this had led to an infection of the blood.

And their conclusion? Services looking after people with learning disabilities should pay particular attention to these problems.

I’m guessing this short report never showed up in the heaped paperwork loading the desks and occupying the attention of the people at Slade House and Sloven Health.  I can’t help asking myself if it would have made a blind bit of difference if it had.  And answering myself, “Probably – not.”
Another blot of gloom to add to the cloud weeping above our vale of tears.