In depth: My experiences with disability
"Maybe you're worried about his teeth. [With] absolutely everything, you have to start from a zero base. So I'll say, 'Well, I think he needs a blood test.' [They say] 'I'll give you a form.' You can't get a blood test anywhere locally. Because it has to be done by a professional person. You can't get...read more
"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
"With health and care, and specialised training in our circumstances, for adults with cerebral palsy that seems to fall into a void. And so we have long distances to travel out of county annually."
"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
"With different bodies of health and social care, it's very hard to kind of get all the support that you need. And you get into this battle of 'How bad are your needs?' to get the support that you need. "
"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'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."
"My daughter was in hospital for well over a month. And I felt that her physical state was very much attended to and taken notice of and followed up and what not. But her emotional being was not taken into consideration at all. To the point where there was a...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. "
"This system isn't funded properly, it's not recognised. It's been a bit of an add-on to the actual NHS for a century. I don't think that it's actually been good enough. There have been lots of cuts. And I'm not happy that we always have to fight for things. "
"We had a meeting and someone from Social Services came. It was an opportunity for us to bring up our fears of growing older and what our care would look like. What we all agreed was there needed to be a special residential home for deaf people. And what’s happened...read more
"I’m battling with our county council at the moment over care charging. I feel devastated and shattered, basically."