I’m carer for my 21year old daughter with Downs Syndrome and my 16year old daughter with ASD/Tourettes, plus three elderly relations. My other daughters both live away from home…one of these has ASD and adhd. I have M. E. and fibromyalgia myself…….sounds like a big collection of conditions when you write it down!
Being a very positive person I hope to offer some support to others while here. I work from home and love all my charges, plus suffer a tendency to write poetry.
This is from registering my daughter as c.e.v last year;
In November I remember to register El on line.
Get a number, though no confirmation
Nevermind, there’s time.
I ask the Dr, Dr says “She should be on the list.”
I ask the Dr “Would you check?”
He says “She won’t be missed…” off I go and ask the nurse, “Is El on the list?”
I ask the nurse “Can you check?”
She says “Mmm…shouldn’t be missed…” off I go and ask reception “Is El on the list?”
I ask reception “Please will you check? Don’t want her to be missed.”
In December, mid December El’s re-registered on line
No confirmation, no explanation
It’s only the second time.
By December, late December, we finally get the gist
Someone somewhere, someone somehow’s missed El off this list.
Once again I ask reception, ask them to confirm
I’ve tried repeating, tired of asking, as such my tone is firm.
But my reception from reception leaves me feeling low
Have they flagged El’s patient record?…we literally don’t know.
It could be they don’t want to act or just want to delay
Forced to voice my acronyms, I verbalise away;
Use CMO’s and DSA to back up what I say.
Talk as if JCVI are pals who come to play.
Downs Syndrome isn’t proof enough
Actual records just don’t count
It’s as if they don’t know what to do
Staff tension starts to mount.
For patients highly vulnerable their system should be better
Luckily The DSA yields a strongly worded letter.
After seeing this the surgery officially agree
Eleanor has qualified…she’s now a c.e.v!
(*DSA = Downs Syndrome Association, CMO = Chief Medical Officer, JCVI= Joint Committee on Vaccination and Immunisation).