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Another week, another inquest. Actually, this week, two of the ghastly things: Oliver McGowan‘s in Bristol and Danny Tozer‘s in York.  The Bristol Post is doing a sterling job of summary reporting of what was done to Oliver and how it is being presented in court (big shout-out to the Post’s education reporter, Michael Yong, whose coverage of this epitomises local journalism at its finest).

Meanwhile, George Julian is live-tweeting Danny’s inquest.  There are grim similarities between the treatment of both these young men, and also with what was done to Connor Sparrowhawk.  All three had epilepsy, autism and varying forms of learning disability.  All three had their epilepsy discounted, being treated as though its symptoms were behavioural or mental-health problems, rather than signs of a physical brain malfunction.

Danny’s epilepsy manifested itself as tonic-clonic seizures, the sort that used to be called ‘grand mal’.  It was known that if one of Danny’s seizures lasted more than five minutes, he needed medical attention, and it was also known that he was susceptible to seizures at any time.  The logical inference to be drawn from this was that Danny shouldn’t be unobserved or unmonitored for more than five minutes at a time, but the implication seems to have eluded the people supposed to be looking after him.  He was routinely left for ‘fifteen to twenty minutes’ in the morning for ‘private time’ (masturbation).  Danny’s Mencap ‘independent living placement’ (rebadged residential home) had installed a seizure monitor in the form of a movement-detector placed under his mattress, linked to a remote audible alarm.  But when went off during Danny’s ‘private times’, this appears to have been assumed to be due to his movements while masturbating, rather than to any resulting seizure activity.  It also ‘was going off frequently throughout the night’, according to John Andrews, the waking night worker who gave evidence yesterday.  He reported the fact to his managers.

The alarm, appropriately for an emergency warning, was loud: “Like a fire alarm”, according to Angela Stone, one of the day workers.  Inconveniently loud.  “It was going off disturbing everyone” said Ms. Stone.
So the engineers were called to ‘tweak’ the monitor.
“I
t was a case of getting the settings right”, explained Ms Stone, adding, “I don’t know where I’ve got the word settings from.”
That suggested that some, at least, of the people working with Danny misunderstood the gravity of his condition.
Ms Stone was categorical: “I felt <bed> was a safe place for Danny, we had the mat, we knew that worked, he wasn’t seriously epileptic.”
Myself, I can’t imagine in what universe repeated tonic-clonic seizures are considered ‘casual’ epilepsy.

There was no mention, yesterday, of what clinical advice, if any, was provided to the engineers to ensure the revised settings were still suitable to keep Danny safe, nor any mention of a medical opinion being sought about the ‘frequent’ alarms.  Tellingly, when Danny was found in bed, grey and not breathing, on the morning of his death, the forceful, rhythmic activity of cardio-pulmonary resuscitation did not trigger the system.
It suddenly struck me after everything was over”, said Ms. Stone, “We’d not heard the alarm go off. I couldn’t get my head around why we hadn’t heard the alarm go off.”
In a gruesomely farcical passage, she described herself and her manager checking the alarm:
“So Rachel, the manager, and I went to Danny’s room to look at the mat, that was the first thing that occurred to us, something had happened, something was wrong. The mat was on, the light was green.  Rachel showed me how you had to move around in a certain way to set the alarm off, and the alarm went.”
“Who got on the bed?” asked the coroner.
“Rachel,” said Ms Stone.  “I didn’t have a clue how to do it.”
Nope. No clue.
Is it possible that the sensitivity of the mat’s ‘settings’ been so narrowed as to render the sensor useless for practical clinical purposes?

Jo Fannon, Danny’s 1:1 worker on the morning of his death seemed nearly as uninformed.
The Tozers’ barrister, Ben McCormack asked her, “You mentioned earlier that the only time you’d heard it was when he was having private time, was there any chance anyone would have turned it off?”
“No,” said Ms Fannon, “You’d never turn it off.”
“Had it ever been set off by someone sat on the bed talking to Danny?” asked Mr. McCormack.
No,” said Ms. Fannon. “It required momentum.”
Mr. McCormack persisted.  “You mentioned it was changed, were you aware of the defects, what was wrong?”
“I wasn’t aware of the defects,” said Ms Fannon, “But it was replaced.”

I may have mentioned that G uses a number of machines.  They alarm from time to time.  If they do, I NEED to know why, in order to be sure that the action I take is appropriate and also to be aware for the future if there is a pattern of events.  If there is a pattern of events, I need to know the underlying causes: Is G unwell, or is there an intrinsic flaw in the tech?  Machines provide information.  Some do a limited amount of analysis for you, within human-defined parameters and algorithms.  They do NOT replace thinking, and they are absolutely pants at intuition and human empathy.  It’s more than regrettable that some people don’t seem so hot on these human functions either.

Now, we all know there are numpties who will take the battery out of their smoke alarm because their inability to master Toast-Making Without Charring means inconvenient decibel-levels.  But I was trying to imagine what staff would have done if a real fire alarm had gone off.  And I bet it wouldn’t have been to call out the engineers to modify the noise.

“Hi, Maple Avenue here, can you send out engineers to turn the fire alarm down? Keeps making a helluva racket. We want it so it only goes off if the fire moves in a certain way, with a bit of momentum.”

Quite apart from anything else, they’d have been as at risk as the residents of getting fried.  Because it would have been their lives on the line, and not just Danny’s, they’d  have dialled 999 for the Fire Brigade, straight away, no question.  So why were the engineers, not the emergency (medical) services, called for Danny?  Did he as an individual not matter?

It’s worse than alarming.  It’s terrifying.

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