Monday, 12 December 2011

sigh


Blatant whinge. The hospital have buried Nenna's hearing test data from two weeks ago in a pile and only dug it out today when I rang to chase it. It is now 'on the audiology consultant's desk' and it will be 'looked at as a priority'.
sigh
It's really getting to me now - we are constantly having to push and chase and poke to get things moving along, on every level - the benefits she is entitled to as well as medical stuff. The DWP managed to lose my carer's allowance application from June and that has only just been sorted - by me doing another application. We are involved with seven different health-care professionals - physio, speech and language, ENT, audiology, paediatrics, the health visitor and the GP; the disability social work people; various different benefits departments; and support workers from Nenna's nursery.
I think that the level of support we are getting on a pastoral-type level is fantastic - the social workers and the HV and nursery are all brilliant. As are the medical people, in their individual fields. As B has just said, they are an information-gathering organisation, not an information disseminating one. As for the DWP, the least said about them the lower my blood pressure will be.
Whilst we are drowning in all this, all Leo's crazy pre-school can focus on is that our payment for this month is one working day late. Snippy email and everything. To which B was equally snippy in reply. We are not moving him, incidentally - we think he is too settled and it's only twenty weeks until the end of the summer term.
I am trying to get in to the Chrismas spirit by knitting frantically in front of an open fire and shopping for slippers.

6 comments:

  1. So sorry to read this. You should move to France where children have medical priority. More virtual sloe gin and a large slice of virtual chocolate ;-)

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  2. Thinking of you all. I am frantically doing likewise by casting on a cardigan in front of the stove; are you free any time in the next couple of weeks, for tea and a chat or something similar? xx

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  3. One advantage of instigating a CAF (Common Assessment Framework) is that they ALL get copies of EVERYTHING - so they ALL know what is going on...(allegedly)...

    might be worth thinking about instigating or at least investigating/ Hugs to you all, anyway - it is exhausting - I know as we have been through it as well..( and are still)

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  4. Thank you everyone.

    @EW, in principle, yes. I will email.

    @CW, we are involved with something called MAISE, which I think is the local version of CAP - they should have bi-annual meetings to discuss her case. They are still in the info-gathering stage, though - and everything seems to grind to a halt from mid December until mid January :(.

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  5. the familiarity of your story as it unfolds is surreal.

    I wish you lots of energy to keep on fighting; it's just so tiring.

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