A small piece of plastic on my sons suction machine (to keep his airway clear) broke last week. It got reported to the Community Loan Store who sent... the wrong bit. So they were rung up again ... and came and looked at the wrong bit, saw that wasn't broken and went away ... leaving it still not working. They've been called again and we've marked up the broken bit with tape - like Harry Potter's broken glasses ... maybe they'll get the message this time. This isn't some luxury gadget - it's a life critical piece of equipment. If this had happened in a hospital there would probably be a full blown inquiry, but out in the community it's seen as just another hassle by the Loan Store, who frequently take the phone off the hook when it gets too busy. Now I have lots of sympathy that they are overworked and under resourced, but these things are important.
This week his gastrostomy tube (he's fed directly through his stomache wall) failed - they only last a couple of weeks anyway, so the nurses asked for a slightly early replacement. And they got an earful from the dietician telling them how expensive these things were and how it was going to affect her budget (they cost about £5 each). Without a tube he can't eat, drink or get medication - what are they meant to do? They and we shouldn't have to worry about someones elses budget problems. After all, she is paid a salary to manage the budget, and she isn't going to die if she's £5 overspent.
These are just the current examples - there's always one or two problems like this we have to sort out, on the go at any given time. I dread to think what it would be like if we were on Direct Payments and had to source all his equipment, buy it and maintain it on top of caring.