Meanwhile back in the real world, our son is reported to have been 'grumpy' all day - sideways looks, not happy (he can't speak - this is how he communicates). So we checked things over. His feed pump (he is fed directly into his stomach) has been telling the nurse he'd had his full amount. When we checked the bottle however, it was still full. He'd actually had no feed (and minimal fluids) all day. I think he had every right to be grumpy.
It's not meant to do this but the 'giving sets' are poorly made and packaged (this one had x2 severe 'kinks' in the tubing, blocking it off) and the pump is badly designed (it doesn't alarm if the blockage is in certain parts of the system). So it happily pumps nothing all day but shows everything is OK. the nurses should possibly have checked the feed itself (we did), but they shouldn't need to. This equipment is inadequate - we've reported it a number of times (yes, we have used the official yellow card system) but it's standard issue. The most insulting bit of all is that the call centre we reported it to seemed to think that sending us a free box of giving sets was an adequate response. This is not a substandard DVD, it's a piece of medical equipment. It shouldn't fail like this, it should alarm if it does fail and they should recognise that failing to provide fluids and nutrition for 24 hours is a serious problem.
We will of course report this to his dietician - again - but I'm not holding my breath. Last time the same thing happened, the result was precisely the same as the food delivery - nothing. A disturbingly large proportion of his medical equipment fails or is poorly made - wheelchairs, hoisting slings, urine sheaths etc. and it's got worse in recent years. I assume the NHS is buying cheaper products to save money. At least they won't be able to cut costs on these - they can't get much cheaper and nastier.
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