Ehlers Danlos Syndrome and the gap in protocols for people undergoing treatment.

So there's no protocols put in place for people coming in? Nothing, well let me tell you about my needs. Okay go for it. I was in hospital for seven weeks, I was discharged from there into the rehabilitation hospital. When I left the rehabilitation hospital I was supposed to been in there 10 weeks. They discharged me after five weeks because they needed the bed. I was told I'd still have the same, I was getting physiotherapy daily to get me up to try and walk and get stability. I got sent home, my legs were double the size they were, I was in pain 24 hours continuously. I was on morphine before I was getting exercises, they gave me morphine. If I went, they like to get you up and sit around the table for your meals, they gave me morphine and then they discharged me and I had home help for two weeks coming in. give you breakfast, give you lunch and your dinner, right, but it's ready meals. They didn't tidy up after themselves. Terrible mess. I had a disagreement with the nurse on a Saturday morning, which she caused, but she turned it round and made it out that it was my fault, and I was blacklisted. And when I got one of the nurses in to take some bloods, I said to her, oh, you've come in? And she looked at me. I said, well, I'm blackballed, aren't I? She said, oh, shut up, Robert. It's nonsense. We know that nurse and she's not right. So I blackballed, didn't have no carers, didn't get no physiotherapy, because all they were doing for the first three weeks I couldn't do no exercises because they didn't give me no morphine or nothing and my knees and legs got worse because there was no motion in the bones or muscles so I got discharged there. I had no home help and when the manager came from the company to say why they discharged me, and she wouldn't let me explain myself why we had this argument. I said, well, what am I supposed to do? I'm in a wheelchair. I can't wash myself. I can't clothe myself. I can't feed myself. I was making a sandwich. It takes me about half an hour. I said, because as I'm going along, my legs are hurting me, my back's hurting me, then I've got to go and lie down on the bed, then get up and go back, so it took about half an hour for one giant leech. You know what she said to me? I don't care. I don't care. It's your problem. I think it's fine, okay then.