Wednesday, 11 March 2015

ENGLAND, BLOODY ENGLAND

Or is it as bad everywhere else?

Debs Apsland, a mother, writes in Special Needs Jungle

I am tired

I am tired of opening Facebook to read of another example of the child’s needs not being a priority

I am tired of waiting for CAHMS to actually meet my child – over a year since the referral

I am tired of cuts that mean services like CAMHS have to practice fire fighting rather than fire prevention

I am tired of the infighting between parents – we’re all working to the same goal so why do we spend so much time fighting amongst ourselves

I am tired of egos and personalities

! am tired of LA staff not understanding what communication actually mean

I am tired of decisions being made about my child and my family without anyone asking us what we think

I am tired of decisions being made about my child but no one telling us until we chase it up.

I am tired of receiving letters that mean I have to add another thing to my “to do” list because our LA doesn’t communicate internally

I am tired of receiving letters from one department that tells me to follow a new procedure but the department I now have to deal with hasn’t been told of the new procedure so I get passed around for an hour before someone with common sense steps up to the mark

I am tired of trying to understand new legislation and then being told ten different interpretations that make me wonder who has got it wrong

I am tired of hearing the hype of how families are happy with all the current changes, when my Facebook wall tells a very different story

I am tired of feeling guilty if I try to do something just for me

I am tired of the piles of paperwork that need either filing or action taking

I am tired of trying to balance a diary of appointments and paperwork without a secretary

I am tired of not having a full nights sleep but not meeting the criteria for overnight support

I am tired of having to constantly search for support

I am tired of people not adhering to the legislation

I am tired of the lack of accountability

I am tired to know that families are often too exhausted to challenge the lack of accountability

I am tired of hearing about poor families going through dire heart-breaking circumstances because the support they needed wasn’t available or they didn’t meet the criteria

I am tired of the sheer scale of knowledge I still have to gain

I am tired of knowing that families with children twenty years older than mine can relate to my story as nothing has changed

I am tired of practitioners telling me they understand

I am tired of explaining my child’s behavior to people who should know better

I am tired of fighting to be accepted as an expert in my child

I am tired of managers who don’t appreciate being challenged when they are in the wrong

I am tired of people talking about “co-production” when it’s not actually happening in many areas

I am tired of trying to find time to just be “mum” and have family time

I am tired of trying to recruit a PA without any help


Me, I am long weary of the second-rate and self-righteous, the spurious, the specious and the meretricious, in both people and ideas, and that these are still taken seriously and suck up so much wealth to fund the damage that they do.

Reference

Aspland, D. (2015) Do you ever feel tired of it all? Special Needs Jungle, 11 March


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