I actually learnt Latin as a schoolboy - and that isn't Latin - but it does translate well. (For the non classical among you 'Don't let the bastards grind you down.')
Have just endured another 3&half hour meeting to assess nursing needs of our son as part of their review of his care package. Nice enough lady but she hadn't been given any of the documentation we'd specifically asked her to read before coming - result, had to go through everything that is 'wrong' with him yet again. It's depressing having to repeatedly spell out his 'problems' to every new face we come into contact with. As he was ill he couldn't get to the meeting - chest infection - so she hasn't even seen him yet. The saga continues - extremely slowly.
Meanwhile in the real world, his chest infection produces some really quite scary lumps from the consolidation on his lungs. The antibiotics are breaking it up, so it's a good thing really - better in the suction jar than on his chest, but I can't help thinking how uncomfortable it must be. And he can't tell us. We're now bracing for the 'scattergun' infections that tend to result from this break up of the consolidated infection. Last time he developed eye, urine and gastrostomy site infections. They cleared up after a week or so as the second round of antibiotics hit them but that doesn't make them any less painful/uncomfortable while they last.
Another current campaign of ours with Social Services/NHS is trying to get 'complex care' onto their agenda. If any of you have read the Mansell Report - Raising Our Sights, you'll be aware that 50% of people with complex care needs get no support and 80% of the rest feel the support they do get is 'poor'. We moved out of the first category after his 19th birthday and are now firmly wedged in the second.
On the practical front, more 'yellow cards' to the feed/gastrostomy equipment suppliers providing substandard equipment and abysmal service. Complaints duly entered and a strategy being developed for kicking these smug/complacent contracting monopolies where it hurts - hopefully financially, if not via publicity.
Lots going on - and we've also got a life to get on with - helping one relative deal with a major illness and another celebrate a major career milestone. I prefer life to meetings.
PS just discovered first 'scattergun' complication - on call doctor being consulted.
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