On the up side, a couple of pieces of specialist 'leisure' equipment we've been waiting many long moons for, are likely to be fitted this weekend, so that our son can enjoy things a bit. They've been a long time coming so I'm hoping it all happens - it has been promised before. (We actually paid for one of them three years ago but health and safety and the building industry managed to hold it up.) This is really important, it's about quality of life.
On the down side, it's been another week of meetings, reviews and 'Partnership Boards' are taking up lots of time and making glacial progress with the real practical issues. Meanwhile the cuts and 'efficiency savings' seem to take no time at all to implement. We have got the loss of Mobility Allowance on the agenda - it's booked for discussion in January. Important though this is, it's tedious.
Back on the up side, we now have both suction machines replaced - minor panic when we came to use the second one for the first time as it cut out almost immediately - turned out just to be uncharged so should be OK by morning. This is immediately very important.
On the down side, some of our nursing cover is again looking a bit fragile - no change there then. This is critical if it goes wrong, so it's more a worry than a catastrophe - just now.
One day, everything will be fine, all his services will be in place, fully staffed/equipped, nothing will have broken down, no one will be threatening to cut his services and all the flying pigs will be fully fuelled and coming into land in a neat formation ... one day.
Wednesday, September 21, 2011
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