'schizophrenia'

- a carer's journal

Sam phoned this evening and spoke with Jane. She told him a friend of his had phoned earlier asking after him.

Sam asked for his number.

"I want to ask if I can stay with him. I think I'll get kicked out of here soon. I think they're getting fed up with me now. If they throw me out I've got nowhere to live."

What has been said to him on the ward?

We had a CPA meeting at the hospital yesterday. This is a planning meeting with all the professionals concerned to plan for the way forward.

Supposedly!

They vary hugely between institutions - and from meeting to meeting. Some have been very formal with piles of reports from everyone. At others there has been nobody there and no reports.

At the last meeting it seemed very informal. Yesterday it was better organised but there was still no agenda and the psychiatrist seemed unprepared. He had lost his junior doctor and was struggling to take notes and engage in discussions at the same time. The named nurse from the ward was taking her own notes as was Sam's care co-ordinator from the Assertive Outreach Team. So much for trust and joint working.

The psychiatrist was trying hard to be conciliatory. He seemed frightened of us. That is worrying. He is a professional and needs to be confident of his position.

We made some strong points about leave that lead to discussion. Ther was discussion about medication.

In the end though it was clear they had given up on Sam. He'd made no progress. He was a problem. They didn't know what to do next.

"He has complex needs that we can't meet. We are a rehab ward," said the named nurse.

But the ward is described on their website as to meet complex needs. They don't want it though. They take the money providing a little extra security than is available in the NHS but can't deal with the real issues any better.

I want to talk with one of the commissioners about it. People are making millions out of the Health Service through this.

But what for Sam ... ?

He wasn't invited in to the meeting. That is unusual. Good practice is that he should be invited for all of it. It can be helpful at times to discuss some items first, and this can avoid stress for Sam, but we were shocked that he wasn't there at all.

So afterwards we went on to the ward to feed back to Sam. A senior nurse expressed surprise to us that Sam hadn't been called in - while his colleague, Sam's named nurse, was busy chuntering to colleagues in the office about the meeting.

Sam seemed down. He talked of wanting to die. He would be happy to fall asleep and die. He seemed to have given up hope again.

I had managed the first half of the meeting but become drained by the second half.

Now with Sam being depressed I felt in despair myself. We left feeling down. Sam didn't want to be there. They didn't want him to be there. But we knew of nowhere else. This is actually one of the better places of its kind.

Later in the evening though I had a call from Sam.

He was cheerful and positive. He was checking we had got home safely and chatted with some life and vitality.

So I cheered up.

A bit.

We took Sam out again yesterday with a member of staff. He got a bit unsettled towards the end of the time but the staff member was paying too little interest in Sam to notice. He seemed more worried about his shoes getting muddy.

At least it is another leave with no "incidents" to record - so at the CPA meeting (a planning meeting with psychiatrist and relevant staff) this week we may be able to negotiate better leave arrangements.

Sam rang again twice today and sounded quite well. He seems to be back on a slightly upward spiral again at the moment.

Fingers crossed - almost as effective as medication!

There was a crash as the door opened and a loud "Hi!!!!"

It was Sam!

What was he doing here? How had he got out?

He had a big grin on his face and seemed happy to be home.

Then his care co-ordinator from the Assertive Outreach team followed behind with a student.

Phew! I could relax again. Well, almost!

They had taken Sam out for drive - which is more than any of the ward staff will do. Sam suggested they came here - so they did. Sam was so chuffed. I found him some tobacco and he had a smoke outside and we drank tea.

Sam asked if I'd take him for a walk. (Yes I know he's not a dog ...)

I asked the Care Co-ordinator. He looked unsure. Strictly it is illegal. The leave was with him not me.

So he said yes and Sam and I went for a short walk. Sam talked nonsense but he did it in a social way. He was modelling normal social activity. It was pleasant and enjoyable.

There was no problem about getting back and Sam enjoyed it all. Then he decided it was time to go - and off he went together with his care co-ordinator and student. Sam looked positive - as if he was in charge. Perhaps he was.

Later he phoned.

"Thank you for letting me come home."

"No, Sam! Thank you for visiting. It was great!"

It really was.

We had a meeting today with Sam and other staff who know him well. It was the first of what we hope may be many to work together with Sam.

He's not so well though now so I was worried it could be a waste of everybody's time and that Sam might become pressurised by it all.

It was hard at the start - and Sam found it difficult to contribute anything relevant. I guess it was the competence of the staff and the efforts of all of us to be supportive that helped Sam to eventually come out of himself. Most of what he said would have made little sense to most people but he was really trying to explain how things seemed to him. He used pencil and paper to help him and got cross if he thought we weren't paying proper attention.

By the end Sam had at least become articulate. He might have been describing ideas that most would find quite bizarre but he had become articulate about them and was making far more sense than earlier. Given how many of us were there he had done brilliantly. The meeting had lasted over an hour.

Afterwards he went for a walk with his psychologist - from the Assertive Outreach team. The ward staff still won't take him out.

Despite the cold - it was two degrees centigrade below freezing today - Sam had to go out for his walk in shorts. He had wet his long trousers and they had not been washed.

It was agreed we could take Sam out today. He rang in the morning seeming fbut then twice later seeming not at all well.

When I arrived to pick him up the nrse said, "He's been very lively - but we're going to let him have his leave. The nurse has been told though to coms straight back if he is at all worried."

So that was a good start.

It was quite hard. On the walk he was clearly disturbed and saying the stranges of things and occasionally looking at us suspiciously. At one stage I was worried if we'd get him safely back to the car. We did do though and on the way back home for a cup of tea he sudeny apologised to Jane recognising he'd not been well. After that he seemed calmer and more relaxed.

It was good to be able to take him back calmer than when he had left. Let's hope it might help them to believe that going out is a help to his recovery rather than just a risk.

Later yesterday evening it seems that Sam refused to go back on to the ward from the small outside enclosure where they go for a cigarette each hour. A member of staff talked with him for a log time but eventually had to call for some more staff. What happened then has nt been relayed to us. When they got back to Sam's room they dicoveed he had pulled the bathroom door from its hinges.

So Sam is not in their good books and leave in under question. They have a new policy about leave - and it seems that a patinet has to have had a settled perion before leave is allowed. If by this they mean ten minutes I guess Sam has a chance - otherwise he'll never get leave.

Sam phoned at half past nine this morning. That's early for him. He's rarely up until after lunch. Although the new ward manager has instigated a policy of having patients up and about during the day, if Sam has been psychotic all night - which it seems can be often - then he is excused.

He was so polite - he was sorry to bother me and if I was busy he understood - but he had so enjoyed coming out with us at the weekend - could I pick him up and take him out again now?

Of course leave restrictions do not allow it - though it would clearly have been good for him. I said we hoped to do it again at the weekend if a member of staff was available to accompany us. Perhaps he could talk about it with staff and get back to me?

But of course he didn't and rang me again in the afternoon to ask the same question.

I rang the ward and asked to take Sam out again at the weekend. The nurse promised to put a request in. It didn't sound promising - even though the last few weekend leaves have gone well. There is only one member of staff who is keen to take him out - the others are like frightened rabbits.

We had a phone call today.

From the nurse on Sam's ward who had come out with us yesterday. Sam wa really good today - the sun was shining - would we like to go out with Sam again ... ?

So we rushed to get organised and over to the hospital.

Sam seems in very good humour and very well. We had to wait a while - but then were off.

We thought.

A nurse came rushing after us outside - after we had passed the seven locked doors and was in earnest conversation with the nurse accompaning us. It seemed the other nurse on duty was questioning the legality of the leave. Were we allowed more than two leaves in the same weekend ... ?

The nurse we were with was theoretically the nurse in charge that day so why did the other feel the need to interfere - enough to send a nurse down to us?

This was the same nurse who had stopped the leave on Christmas Day.

I don't know what passed between them but we went anyway. Sam was already sat in the car. Getting him out now would have caused an altercation.

It was a lovely warm afternoon and the parkland we visited was full of families enjoying the unseasonal warmth, couples together and people walking their dogs.

Sam was pensive and troubled. He found it difficult to relax and enjoy it - but at one moment he made me turn and look back as we were waling through the woodland. he had noticed and enjoyed the sight of the winter sunlight shining on the stream rushing between the trees. You don't see such sights on a psychiatric ward. It looked beautiful to me. I can't imagine how it must have looked to Sam.


We had cups of tea and a cigarette outside the cafe. Then as we were leaving Sam suddenly ran off. I had a tray full of empty cups that I was trying to return bt had to put it down quickly and follow. But of course Sam as just being exuberant. He wasn't trying to escape. Though with another member of staff this might have been recorded as yet another "incident".

Suddenly though Sam settled. he wanted to talk with me. Much of what he said made little sense but he was wanting to model a couple of men walking and chatting having an iteresting and amusing conversation. So we did. It was part of wanting to be normal again - of enjoying the idea. I enjoyed the conversation too - even if I understood little of it!

Then we were back to the ward with hus and goodbyes - until next time.

But this friendly nurse is on holiday now for over a week. And other nurses are not prepared to take the risk.

This is porfessionalism?

What a lovely day today.

It has been warm and sunny all day. A touch of spring in the middle of winter.

Sam came out with us and a nurse from the ward. We went to a popular beauty spot that is also a venue for climbers. There were so many people there - it was almost like a summer public holiday - everyone making the most of this beautiful day in the middle of what used to be winter.

It went very well. Sam loved it.

A touch of spring in the middle of winter.

I went to pick Sam up on Saturday. He was waiting at the door of the ward peering through the strenghened glass of the small window with a uge grin on his face. I wasn't sure if this was good news or bad.

He seemed though as if he was trying hard to stay in control. We went to his room while staff got themselves organised and he was willing to be persuaded to put on clothes appropriate for the cold weather outside.

Eventually we left. The afternoon went well. It got better all the time. Being in a "normal" situation helped Sam to be "normal". Rather than being institutionalised by being on the ward it was an attempt at normalisation from being off it.

On the way back in the car he regressed again into being very psychotic. My heart sank. The view on the ward could then so easily be to decide home visits made him worse rather than seing the benefits. At least one lone member of staff had seen it. I'm sure she will support out view.