Good To Talk?

He actually seems quite happy at the moment though but I think that he is still very psychotic and delusional.  He has stopped trying to escape from the ward and he is not getting as angry with the staff, he just seems to be very accepting of his position.  I am torn about this situation.  I am glad that he isn’t angry and upset all the time but I really worry that the ward staff are giving him too much medication to keep him controllable for their sakes.  I also feel guilty because while he is like this we all get a sort of respite from all the drama and incidents. 

It’s funny really because my mom and I seem to almost ride the waves of his illness with him.  When he is worked up, we all get pulled along.  We too get anxious, angry and upset. When he is just accepting and calm, like now, we get really sad and feel we need to protect him. I have also been feeling less fired up and I think that has been part of the reason why I haven’t written the blog sooner, I have been trying to ignore some of the things that have been going on, having a sort of emotional break.

Luckily (I think), I still have my moments.  I have been pressing forward with the complaint.  I did get a response to my letter, I am afraid though their first “standard response” sparked a second letter.  I wonder sometimes if the staff think that I am the one that should be on the ward!!.  I felt that they were trying to use confidentiality as a barrier.  The usual “if you want to investigate yours brother’s individual case he will have to give consent or we will not be able to take the matter any further …”.  I really do respect confidentiality and I really think that it is important to protect people, but it was such a closed statement.  I honestly don’t think that it would be appropriate at the moment for me to try to get my brother to sign something asking for his permission to investigate these incidents. He would either sign because he would imagine it would lead to his instant discharge, or he wouldn’t sign because he would not want anyone to make it harder for him to “escape”.  Maybe I am wrong, I don’t know, but I asked them to reconsider their standard response and think about their process.  Not sure if anyone else has any views on this or has had experience around this issue?

Anyway, they are doing a general investigation into the things that I raised and I am expecting a response any day.  They are a bit late, they promised me a response within 25 days, but I will give them another week and then muster the energy to write again. I’ll let you know what happens.

As to the care he is receiving on the ward, I think I must be way too critical.  I really worry about the standard of care and it seems such obvious and sometimes really small things that make all the difference.  They way the staff talk to him, and us for that matter, their attitudes seem to close the communication rather than open it up.  The lack of interaction between the staff and the people on the ward and just a general feeling that the staff have given up, there seems to be little imagination on their parts. 

An example of this was my suggestion in one of his ward rounds that I thought Paul would value from some regular, protected time, where a member of staff just listens to him and talks with him.  Say an hour a day or every other day.  I tried to explain why I thought this.  One day when I was visiting Paul he had been talking at me non-stop for about 10 minutes, most of the things he said weren’t true or were very unrealistic, but unless he actually challenged me to say that I believed them, I just let him talk.  However at one point I had to ask him to stop, just for a minute, because I was feeling overwhelmed by it all.  He looked at me calmly and said “OK”.  He paused and then he said “it’s just that I think it helps me to get it off my chest”.  I looked at him, and I smiled and told him to go for it, I was glad to listen. It was like a moment of clarity.   

Anyway I find that this approach really seems to help me now when I visit him.  We spend sometime just talking about general things, then sometimes he just gets things off his chest.  We get on so much better and he doesn’t hate me anymore.  I get less worked up and worried about the things he is saying and he gets less worked up because I’m listening and not contradicting all the time.  I told the care team this in a ward round and I suggested that they dedicated some time to just listen and talk to Paul on a regular basis.  Although one nurse said she thought it was a great idea, the rest of the team just looked at each other and said they didn’t think it was possible.  It is so hard to believe that the staff can not make time to do this.  Paul is spending 24 hours, 7 days a week confined to the ward and they do not think that sparing a few hours a week to listen and talk to their patients is worth doing.

I will be bringing it up again next week, but this time I am going to try to arm myself with evidence.  I am off now to try to find some best-practice guidance and look at some information about the Star Wards programme.  Perhaps this will make the reconsider, not just for Paul, but for all the other people on their wards as well.