I've had worse care because of who I am
"We should work out a way for monitoring what’s going on with coronavirus. And when Black people start dying in larger numbers than any other group, and though the NHS then starts falling over backwards to make assessments about who and what the numbers were, we still don't know why....read more
"I get given medication, but I am not sure what it is for, or what is in it. If it is the weekend or the Centre of Sign Sight Sound are not there, I won’t take the medication because I am not sure of it. "
"I'm with my child who has a disability. She has Down’s syndrome. Some of you might know, she has a lot of health issues, quirky things. I've been put off taking her to the GP because generally it's ‘Well, you know, this is very typical. Yes, people with Down’s syndrome...read more
"From my experience, and from the experience of some of my friends with elderly relatives, the big thing that everyone says is that they wish they knew what was on offer and what paths they should go down."
"There shouldn't be a stigma that just because they have a learning disability, everything is wrong with them, you know what I mean? They need to trust the parent over what is normal for this child and what we feel needs assistance. "
"Locally, the waiting lists are so long. Mainstream waiting lists are not appropriate for people with cerebral palsy. If you need footcare, orthotics, physio, it's quite specialist really. You need the continuity, and you need the person with the neurological understanding to proficiently provide the service. It feels that it's...read more
"I’ve noticed a lot of male GPs, when you're going to speak to them and you're trying to explain your body to them, they have never experienced how women function on a monthly basis… they will just ignore you."
"Everybody in our experience could do with some training [on treating Disabled people]. And yet there seems to be an unwillingness to be trained by those people with the lived experience. Our GP surgery could really do with some training... we've offered it but it's been ignored."
"In my area, until very recently, we had no post diagnostic support for adults with autism at all. You can go and get a diagnosis, and that will be that. You get a leaflet."
"As long as someone who lives down the road in the poorest area cannot afford to pay for the most expensive private care which is available, they're missing something. Someone is getting specialised care or specialised support that the other person is not getting. So that imbalance remains. "
"There are a lot of old people who don't have anyone. They come into hospital and they do not have anyone who can speak for them. And that's a scary position to be in."
"One of our ladies is a quadriplegic. She's been in palliative care quite a few times. And they basically leave them. ‘Oh, well, does it really matter?’"