WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Wednesday, 26 October 2011

Fly Me To The Moon.

A very good friend, Sandie Bailes, who is a fellow service user wrote this - and gave me permission to publish it. Social Workers take note!!!!!!!!!!!!!


I have been passionate about Personalisation in both care and health since I joined NCODP.

My sheer joy at the thought of being able to choose my care – whether it be actual folk to do the caring or strategies and things in place to make my brain boogie – could waltz my wellbeing star off it’s page!

But then this joy is scuppered by the grey folk who simply do not understand or are unwilling to take on board Personalisation.

It’s not all grey folk; some are warriors and fight my corner but some simply do not want to see me smile; do not wish to join me in my world of sparkling rainbows and chocolate cuddles.

My aim is to be just Sandie; I am a unique human being; MS is only part of me – it’s not all of me. I look to my PB to enhance and enrich each wonderful day; I look to it to enable me to carry on with the volunteer work I do for NCC, NHS and NCODP. I am useful; I am worth something; I thought I’d lost that forever!

I help to shape care and health in Norfolk and I fight tirelessly for everyone to have a life that’s fulfilling and that they choose for themselves.

My support plan is written with all this in mind. My spending is done with thought and wisdom. I would rather struggle and be independent than have someone to do everything for me. My support plan reflects this.
At least I thought so.

I have been refused practically everything.
My needs have changed; I have become more dependent on others and my confidence has waned. MS is progressive and it’s constantly reminding me of this.

Almost all my wishes have been questioned; I have been asked why I need a third PA; why my two other PA’s cannot take on more hours. I thought I could choose who I employ and for how long each week – as long it meets an outcome and I have the money to do this. I have been refused a third break because it’s too much of a percentage of my total budget but in fact, it’s less of a percentage than I allowed for this year. I wanted to go to WW with a friend and lose some weight and also to gain confidence without always being with a PA or my Arf – I was hoping to be more sociable; this was refused.

I have 2 scooters and these are my legs; one in the boot of the car for shopping and one beefy little blighter that sails down to town and lets me hug the independence I crave. They need insurance; both of them. I used my budget last year to pay for both. This time I have only been allowed to insure one scooter. They have chopped off one of my legs.

I put in my Contingency some monies for a computer printer in case mine died; I use this every day in my work with NCODP etc. It’s as if I have a job like everyone else; it’s exciting and I know some of my work is valued. This has been refused.

I admit to sometimes flying to a distant galaxy and asking for a non-existent moon; I accept this and bow my head in shame!

But the grey folk only see colourless wants and needs. I am asking whether they have read my whole support plan where I state what is important to me and what I want to achieve. I thought this was epic in deciding my spending. I am thinking the only part of my plan that’s been glanced at is the money; how much and on what.

I am devastated and upset. I cannot seem to stem the tears. My heart is breaking because reasoning and compassion don’t exist. I am not a piece of paper with numbers on it and comments – I am a heart and a soul that bleeds with despair.

Please bear this in mind – please!

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The Tough Tenor (when I could walk)!

In a Mellotone

In a Mellotone
Ah sweet Youffff