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"I took up a part time job. And I'd worked out that I was still underneath the bracket, which was fine. I checked, I could offset my care and my childcare. But then I was offered the ability to do more hours. So I contacted them and said, 'Look, I'm taking the option...read more
"Care in the community doesn't happen unless people have connections to disability or carers themselves. It's been like this for decades. But also the stigma that disability carries in the community prevents people from assisting those in need. "
"I didn't plan to get emotional. But I have felt for years that I have had to become the medical professional that my son needs, in order to go and request things... It hasn't been the case, it has very much been me going and educating myself in order to support my son."
"My experience of health and social care is as an outpatient in my local neurological unit. I had an assessment to social care shortly before lockdown. I was told I was not eligible for support, which didn't surprise me. I made it clear that I wasn't prepared to adjust my...read more
"I would like there to be a standard pathway that is a minimum level of care. And if you don't get it, there is somebody held accountable for it. Because I think the the other aspect of everything is no matter how many pathways you can have, if there's no accountability, and there's...read more
"When Deaf people get old and need a home, we just get put in with hearing people. We need our own home, for Deaf BSL users, not with hard of hearing people. Because one home for all doesn’t work. Deaf people just get forgotten. (cc39) "
"I'm going back to a few years ago. I was like 'Well, I can't manage. What am I going to do?' And I was like, 'Refer yourself to social services.' Well, you have to understand that someone who is dyslexic and autistic having to refer themselves to social services is not an easy...read more
"I've had so many bad experiences in my local hospital that unless they do something about it, even if it's an emergency, I won't even go."
"She's got a really good plan where she's done some volunteer work, she has a social life, gym, swim, you know. A lot of that is free. So she's got a really well planned week, she's very happy. But I find with reviews, they're always sort of threatening. Instead of saying, 'Well done...she's not...read more
"It often feels like once you have support, it's a relief. And good support is hard to come by. Because there aren't enough people in this system to actually work with people. And give them the time that they need. "
"I've now got something that works for me social care wise, but they wanted to charge me £200 a week for a basic wash. And then I've got a PA who helps me in the house and garden to keep me out of hospital, really. And they're trying to reduce his...read more
"The bad thing is the system of social care, to me. [Social workers] tend to mess me up and talk down to you. Or they don't treat you as a human being. So my experience is pretty bad."