Wednesday, March 9, 2011


Back in the real world, we've been walking on eggshells for the past few months. Our shared care relationship with one of our sons care providers has been less than comfortable. Partly some personality clashes and partly changes in the care framework. CQC somewhat to blame for their 'tick box culture' of what nurses can and can't do under different forms of registration as well as the normal drift towards having to document and protocol everything that moves and araldite everything to the floor that doesn't, just in case it decides to move.

Anyway, I think we're moving back from a suspended hostilities relationship via mutual co-existence with a target of reinstated trust. Half of care is actually about care, the other half is about trust - and if anything damages the trust (internally or externally caused) the care itself is in real danger. We've had a lot of sleepless nights working out how we could avoid this impacting on our sons actual care and it's caused a fairly massive amount of stress - hopefully things are getting better. We're (both sides) starting to trade apologies for the smallest things not perfectly in line and going out of our way to do little things that show willing over the small daily crises that are normal life. I think it's going to work - it has to as there isn't really an alternative.

All this has been going on while we've been distracted by the service cuts and his care review - both still ongoing and likely to get worse. His equipment still breaks down with disturbing regularity - feed pump failed over the weekend and no replacement arrived, tyre came off wheelchair and damaged wheel so new front wheel needed, postural drainage 'chair' has given problems and issue with oxygen prescription being 'cocked up' still isn't finalized.

But all this is about things, and things can be mended - mending relationships is infinitely harder and far more critical.

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