Posts
"I'm still, on a daily basis, witnessing how terrible the services are for families...nothing's improved and I find that soul destroying."
"The main communication we got was our letter about Community Care charges. Rather than a text or a call or a letter saying, 'How are you?' there was no 'How are you?' Or 'Are you?' even. 'Are you alive or dead?' You know, there was no compassion shown. It's very disappointing to...read more
"Things have gradually been going downhill with personal budgets and the understanding of personal budgets, compared to the old system of direct payments... we all know the local authorities have their own internal policies that they follow. And they're not always abiding by the letter of the law. And they...read more
"Social care wise, it's working for me at the moment. But they just want to reduce my package and expect me to pay through the nose for it. And so that's driving me insane. "
"[As carers], we don't get recognition or value in terms of what we do on a day-to day basis, when it comes to managing the care package of our loved one. So I think that's another thing that needs to change for me. They need to value, respect...and not necessarily pay us, but certainly...read more
"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
"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."
"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. "
"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'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
"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."
"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."