'schizophrenia'

- a carer's journal

We'd arranged for Sam to come home today for a few hours a little while ago. Then we got a call this morning ... trying to put it off as there were other staffing problems. However several calls later it was decided Sam could come home. We then got one from Sam to reassure him it was happening. He picks up on all that is going on.

But when I picked him up he was very excitable. We found later he had been like that all day. I wonder if that had been the real reason they had been thinking of putting off his visit. The visit kind of went well though until the end. He seemed agitated. He needed space. He became surly in a way that threatened aggression. As we got to the car he opened the door then slammed it even more open almost breaking it off and causing expensive damage.

Then he walked off down the road.

He had no intention of stopping. He walked on. We were fortunate the nurse with us was a very experienced one who we got on with. We've had similar situations to this with Sam so many times but another nurse might have reacted in a way that could have exacerbated the situation. But his nurse joined Sam on his walk off and I brought up the rear ... staying at a distance at first in case I might make it worse.

Sam insisted on walking to some rocks where he used to climb. He needed to feel the rock and sit calmly there for a while to get his thoughts together ... or to combat the demons in his head as he described it to his nurse.

Eventually we got him back to the car and back to the hospital. He was still excitable but he was back and safe.

Now Jane and I will have a meal together, watch some television, open a bottle of bubbly and wish each other, with thoughts of Nell and Sam, "Happy New Year".

A Happy New Year too to all of you reading this.

It has just been confirmed that everything seems set for today. We pick Sam up at one o'clock. The Turkey is in the oven, there is snow on the ground and the sun is shining. Lets hope it is a good day.

Happy Christmas everyone.

Sam's named nurse rang yesterday. Changes for tomorrow ... not to worry, Sam is still coming home - but he would not be the nurse coming with him and the timing would need to change. Staff shortages, etc. It is a shame as we get on with him well, as does Sam, and he is very experienced.

Sam phoned a couple of times later on. He was worried about the changes. He believes something will go wrong at the last minute and he won't be coming home on Christmas Day.

We had a good visit home with Sam again at the weekend. But he has kept phoning.

About Christmas.

He is coming home - isn't he? He needs reassurance. It is special to him. If they cancel it again this year as happened two years ago he will react very angrily as he will not be able to understand the reason.

Sam rang he other morning, very upset.

He had been for a walk with a member of staff to the shop to buy some tobacco. He believed the member of staff had tried to steer or push him onto some waste land by the footpath and thought there was a sexual intent. Sam was clearly sincere in this and upset and worried. He said he had lost his money on the way - he wasn't sure where it had gone but that this made a good excuse to return.

He had talked on the phone to Jane in the morning. Later in the day he spoke to me. He told the same story. I asked him about going on leave climbing as he now does once a week. It had been cancelled. When he got back from the walk to the shop he had been angry and upset and had kicked at the door. It was perhaps more than this but we have not managed to find out from a member of staff exactly what Sam had done. But his leave had been cancelled.

All of what happened on the walk may have been in Sam's imagination. Something innocuous might have triggered something in Sam's mind. Perhaps he has been abused in the past. Or it could have been real. But it shows how difficult such situations must be for staff and patients.

A few times recently all leave has been cancelled on the ward. We have been told it is because there has been "an incident" on the ward. There are procedures to be gone though, forms to be filled in, managers to be placated.

It feels though as if a naughty boy in the class has done something wrong so then the whole class is being kept in as a punishment.

Also recently at a meeting Jan asked if we might take Sam for a walk outside the grounds as his recent leave with us inside the grounds (ie around the car parks!) has been going well. We were told that was against the rules.

What rules are we talking about here though we wondered? Whose rules are they? Who has the power to change the rules?

But this is a forensic ward. There are patients here who are potentially dangerous. So we wondered if the regulations might be from the Home Office. But Sam is not on a Home Office section. He is a patient detained under section 3 of the Mental Health Act and should be treated as such.

So we decided to ask ...

That is all. Just ask.

Finding who to ask was the first hard part. Staff were just following regulations. But whose regulations were these? Who could we ask? Nobody seemed to know. Getting in touch with senior managers was a nightmare ... and then they did not seem to know if it was their responsibility.

But then yesterday we got a phone call. A very nice man. It seemed these were local regulations - not imposed from outside. They had been put in place a number of years ago following some serious problems and had not been reviewed since. So they were now reviewing them. He thanked me for bringing it to his attention. He would raise it at the next risk assessment review group meeting - whoever they are. I wonder if they ever think to invite service users or carers to contribute to these meetings? If they did then they might not need us to tell them when the rules were acting against the best interests of patients.

I asked him to let me know the outcome of his review.

I'll keep you posted!

Sam phoned yesterday. I was out - taking long walk in the rain.

He said he was fine. He was very apologetic about the previous day. He had been hit earlier in the day by Dan Adams. He had come to believe that he was Dan Adams and so he had to hit me.

So I had been right. It really was the violence on the ward that was creating Sam's violence.

I wasn't hurt by Sam yesterday. He just pushed me up against the wall. I hurt myself on a window frame trying to bang on the perspex window to the office next door. Of course nobody noticed so it is good that Sam let me go.

The room we had been sitting in was a bare tiled room with just one settee for two people. There was no other furniture and nothing on the walls. But at least it was closer to people than the cosier room we sometimes use.

When I called out and banged the window Sam let me go and I got out of the door and into the corridor. I explained to a nurse that Sam was being aggressive and I thought I should leave.

He checked I was okay and unlocked the exit door. We were between the two locked doors when I could hear Sam shouting to me. He seemed distressed. I asked if we could go back. I guessed Sam had realised what he had done and wanted to put it right before I left.

As we returned he was standing by the door. "It wasn't me. It was Dan Adams. He was inside me. It wasn't me. I didn't want to hit you."

I told him it was fine, smiled and got him to give me a hug. He still looked worried and disturbed. I told him I would see him again soon, then I left again.

On the way out the nurse asked again if I was all right. Did I want to go to a room to talk it through? He noticed me sucking on a small trickle of blood from the self inflicted wound on my hand and asked if I wanted a dressing. I told him I was fine.

He expressed surprise that I had dealt with it all so calmly, that I hadn't become angry. Did he think I would be still there ten years on with Sam if I was going to get angry with him for being ill?

Then he got it. My anger with the system that had created violence from such a peaceable young man. As Sam said to me in a confidential tone soon after his first admission ... "If someone was poorly with mental health problems you wouldn't put them in somewhere like this."

And of course you wouldn't. It was violence on the ward that was triggering Sam's confusion and distress that had lead to violence. I asked the nurse if he was in psychological or emotional distress whether this would be a good place to be? Of course he had to admit it wasn't. But what else should we do - he asked almost plaintively?

There wasn't time to go into all that and the alternative possibilities. I was tired, drained, distressed and feeling very weak. I wanted to go home.

I'm a bit shaken.

I've just got back from the ward. Sam assaulted me there.

I'm not hurt - well only a small scratch and bruise where I swung round to bang on the window to try to alert someone as he pushed me against the wall.

Just worried about the future for Sam again ...

I could write more but there is a film coming on TV now that I want to watch. Perhaps that will do me more good than writing. So more soon ...