Sunday, January 16, 2011

Cutting out the insects

Just had a phone call with our sons nurse. She'd taken him to the zoo - on a wet, northern Sunday afternoon - great success in fact. He was really alert and because they were the bulk of the people there, he got to have stick insects and skinks (some sort of reptile) crawling over him. He really enjoyed it and took a lot of notice. This for him is really good. Finding things that get his attention can be quite hard and dispiriting sometimes, so these days are to be greatly celebrated.

We'll make the most of them while we can. He went there in his wheelchair adapted van bought and run using his Mobility Allowance - and that's being taken away next year, thanks to this compassionate government of ours. I'm currently looking at how their proposals for DLA will affect him and am getting increasingly alarmed that because he's part time in registered care, he'll lose that as well the year after. Depressing.


  1. I have just found your blog, and will come back to read more. Another long term carer, though my daughter's needs are not as acute. Problems are the same, though, and I can certainly identify with your poo-post.

    In these perilous times, our isolation is the biggest problem. Only good can come of sharing notes.

  2. Good to hear from you. A problem shared is a problem ... well it's easier to cope with if you're not on your own. Nobody not doing it thinks about the poo, or the time it takes to get ready to go out, or the how hard it is just to get someone into bed, or wash them etc. etc.
    If all this blog does is tell one person that some other people understand and they're not on their own, it's worth carrying it on. All the best, Ned

  3. Ah, I said I would read some more, and I have. Just read your post on personalisation, with, as we have just been personaised, a good deal of interest. I suspect I am rather fortunate that I do not know who the CQ? are - though I am familiar with the attitude of mind. My nightmare initials tend to be CoP and OPG -something new to me, and not quite in the same league I don't think.

    My daughter is also regarded as having complex needs - but at the moderate CP behavioural problems end of the spectrum, not the medical. How is one size fits all supposed to deal with such a wide variety? The SAQ questions on parental involvement were certainly a bit of a hoot. Whose needs are being identified - hers or mine? I am also newly an employer - nothing else to do, after all.

    There are a lot of us out here. And maybe getting a bit tired of being long-suffering?

  4. More of out there than we often think - and we're all different. One size fits nobody. Not sure about the initials (let me know if I've used any without explaining them, it's too easy to do.)
    CP - cerebral palsy (more a label than a diagnosis), CQ - don't know, CoP - could be COPD - chronic obstructive pulmonary disease, OPD - obstructive pulmonary disease, SAQ - don't know.

  5. SAQ - Self Assessment Questionaire - the one size fits all tick box exercise, which leads to the RAS - Resource Allocation System, which leads, by some byzantine logic, to the Indicative budget. I wish I knew how. Apparently, some councils deduct points for family carers, sone don't. CoP and OPG are rather more esoteric concerns of mine - the bodies involved in overseeing the Mental Capacity Act. Steer well clear of these two if you can, but if the Council bring them up, get informed fast, as they can be very bad news. As parents, we have responsibility without authority, which I find rather irritating.

    Off to read your new post, which looks interesting.

  6. Sorry meant to spell out - Court of Protection, Office of the Public Guardian.

  7. Thanks for details of abbreviations. It's a real maze out there. Best of luck with the CoP and OPG - we were lucky and didn't get involved with them, just 'Deputies' for his benefits. Mind you we've been forced not to give him any other money of his own to avoid them taking it off him. (It's real 1984 speak - Court of Protection and Office of Public Guardian when their main function seems to be to 'protect' severely disabled people from spending their own money - and charging them for the privilege.)
    Most of our acronyms tend to be medical - It's amazing what pictures you can build up from the different acronyms people are familiar with.
    All the best,

  8. Was CQ? meant to be CQC maybe? Care Quality Commission - although it's arguable whether they actually care about quality any more :(

  9. I've posted myself on CQC (Care Quality Commission) here - Couldn't Quite Care. Our own experience of them isn't good - tick boxes and one size fits all, but act arbitrarily like the care police. It was better when they were CSCI (old version of CQC - Commission for Social Care Inspection)