Things neeed to change on how we assess a intellectually disabled child with complex medical issues in pain.
I’m beyond exhausted after battling daily for two weeks after my beautiful 8 year old Ava has been admitted for pain management for a dislocated hip.
The way a child is assessed for pain is totally not acceptable for a child with such great physical and intellectual disability.
She has been self harming by hitting her hip and hitting her head, pulling her hair out, crying and biting her fingers, red faced tensing. This child is normally the most settled easy going child, doesn’t even budge or flinch with blood tests.
Yes she feels pain but has a different yet delayed response. The suffering she has experienced mainly in the past 24 hours has made it to her 5 worst days of her life list. I wouldn’t let my pet suffer the way she has. She went over 12 hours crying and self harming with twenty minutes here and there of rest in between morphine doses. It wasn’t working and no one was listening.
Clinical reviews happened nothing was changing – time going by still getting now where.
All resources were gone.
I was at a loss. What more could I do? I couldn’t move her or pick her up yet I wanted to run away with her and take her to a different hospital for a new open mind review but that’s impossible when she was in such pain.
Her morphine bolus was upped by a tiny 90 micrograms and this was now 11pm. She had wanted to sleep yet the pain kept waking her up, her body was spasming and aching.
Finally we gave her night meds (usual ) and in them her clonidine which puts her to sleep , it worked for three hours
My point is – the way we assess disabled needs to change
We need to listen to carers and parents and need to really give them the trust
We need to be heard – we want what’s best we actually have a life and don’t want to be in hospital and if things were able to be managed at home we would be home. We self manage so much that we really only come to hospital when we really need that help.
Please hear us…. we must be heard