Still in hospital. Original problem resolving - slowly. Secondary problems of disability spin off problems now to be dealt with. The critical ones are the medical ones, mainly drug side effects/undesirable impacts of necessary procedures. But a significant number involve the inability of hospitals to understand the impacts their organisational procedures have on disabled people and their carers - and there are lots, some more serious than others.
They range from the irritating - poorly organized car parks locking in nurses cars because no one is manning the barrier 'intercom' late at night - to the high risk - urgently needed epilepsy medication being delayed for 2 hours because of the administrative procedures required to sign it 'in' and 'out'.
Will probably elaborate further once he's out of hospital. Just now sleeping is my second highest priority.
One of the problems I always have is hospital staff blocking my care support staff from continuning to support me - taking my ratios down from 2:1 and 1:1 at home (24 hour support with 3 hours of double cover) to 1:8 or whatever it is on the ward. It's ludicrous - I need support all the time and that doesn't change when I'm in hospital, if the flipping ward managers would just let my Personal Assistants do their jobs then my impact as a very high-needs patient would be much less on the nursing staff. Stupid. Hope Ludd Jr is feeling better very soon!
ReplyDeleteStill in hospital - phase two is after dealing with original problem, dealing with drug interaction spin offs.
ReplyDeleteWe do get to use our own nurses in hospital - hard work getting the protocol agreed. Main tactic was to do it and wait for objections, then escalate via PALS and matron, and generally make life administratively uncomfortable.
It's bonkers not to allow this - it's usually blocked by the 'fear of litigation' lobby. I'll try to reply more when things are a bit more stable.
Fingers crossed it all gets sorted, Ned.
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