I've just about given up my illness and disabilities aren't the problem it's the degrading process I continually have to go through to get help.
I'm talked to as if I'm stupid and accused of "expecting the gold standard". I don't I'm just sick of people using me as a guinea pig when they don't have the right therapists and treatment. I haven't had a Stroke so why am I seen by a Stroke team. They push me to "get better" because "Stroke patients are much further on by now". I have a Neurological condition, I'm never going to get better but unfortunately I'm not going to die anytime soon either. I don't want to die but if I was terminal I've been told it would be easier to "get me an appropriate care package".
I've just got my mobility car back after nearly 7 months of fighting and the social worker didn't help at all. If I ring she's either in a meeting or not available. My personal budget is cocked up every month and they've just told me that my sister who's worked as my PA for 3 years is "no longer suitable" and can't work with me anymore. A panel of faceless individuals who I've never met decided all this and now I'm told that my activities payment has been cut. I go out twice a week for a brew and to play dominoes. Now I can't. I don't have any money left from my benefits to pay it myself. And no PA now either.
I've asked the social worker to ring me about appealing the decision and she warned me that my PB might be "frozen" if I do.
I also asked for help to get a new PA and I've heard nothing.
So now I spend all day every day in my house.
If my council send me one more leaflet about supporting me in my own home or towards being more independent I'm going to tell them exactly where to shove their leaflets.
It's a shambles. I worked all my adult life and I paid into tax and national insurance so why can't I get help?