"Sometimes he just wasn't capable of saying what he felt - he'd always say things were ok even if they weren't. He doesn't have an idea of what his rights are..."
A mother describes her son's experience.
Throughout that time he was in and out of hospital, and when he left hospital to live in supported accommodation he was still on a compulsory treatment order. That order was lifted last summer and I was not told about it until after it had been lifted. I was worried about that at first, worried we'd be going back to how it was before, but the support he gets there is good, and he gets help from psychological services at the hospital.
I go to carers' meetings at the hospital every month, and have had some very good experiences, but there is a problem with staff not being consistent, and at times I have felt I had nobody I could speak to. For example, at first when he was in hospital I used to be able to go and sit with my son in his room, and I knew I could just go into the office and speak to staff there if I needed to. Then it all changed. I can understand why, that there could be a security issue, but for me it meant I had to wait at the door and I wasn't allowed in his room.
Sometimes, too, they forget to tell me about reviews, even though I am his named person. I felt I wasn't being considered, but I am not the professional. Recently, though, I have been getting more information.
My son, too, has had good and bad experiences. Sometimes he just wasn't capable of saying what he felt - he'd always say things were ok even if they weren't. He doesn't have an idea of what his rights are, and that means relying on different personalities at the hospital have dealt with him, sometimes in ways that were upsetting.
My main point on patients' rights is that a lot of the time it depends on who the staff are that are working with my son. You get better information if you get to know staff more, then they move, then you have to sort of start all over again.
Having a clear written down document showing what a patients' rights are could be very useful in getting consistency, no matter how long the staff have been working with someone.