Hi, I’m Dawn…carer to 5 and new to the forum

Hello everyone,
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).

Dear Dawn_2107
Hi I think you must have a lot of your plate and it is great that you write poetry and your poetry is great! You have an exceptional talent. Im glad you have found something for you to do in your breaks from your caring role and it is brilliant that you want to help other carers on the Forum.
Well first of all i would like to say Welcome to the Forum! You are not alone in your caring role we are sure that many on here will understand exactly how you are feeling and will offer you support as the carers will leave you messages when they can. Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted and unable to attend social groups etc. if you have had the time to spare to go that is.
Carers UK are running online weekly meet ups for carers and you can find the information on how to register at Care For A Cuppa-Online meetups | Carers UK. Then there is another online weekly meet up called Share and Learn-Share and Learn | Carers UK.
Our telephone number is 0808 808 7777 and it is open from Monday to Friday between the hours of 9am-6pm. Our email address is (advice@carersuk.org).
They provide information and guidance to unpaid carers. This covers:-
-Benefits And Financial Support
-Your Rights As A Carer In The Workplace
-Carers Assessments And How To Get Support In Your Caring Role
-Services Available To Carers And The People You Care For
-How To Complain Effectively And Challenge Decisions
Best Wishes