1 August 2017
My son was diagnosed with schizophrenia
at 18, he is now 39.
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
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
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.
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...