'schizophrenia'

- a carer's journal

As Sam's visit home on Saturday had gone well we dicided to pick him up on Sunday as well. Jane was keen to see some more of him.

When I arrived I had to use my phone to get in again, the intercom not working. Sam was still in bed despite the fact I had phoned earlier to say what time I was picking him up.

Once we got outside he was desperate for a cigarette so we had a short walk down the road. We came back to pick up the car and there was someone else having difficulty getting in. I offered her my mobile phone to ring the ward. She was delivering their newspapers.

Once we got he Sam became a bit excitable. He was also doing unacceptable things like uringating outside the back door. he wasn't responsive to any discussions about his behaviour. I suggested I would take him back.

He took himself off to the living room and sat quietly for about half an hour. After that he was fine again. He'd managed to get himself back together again. We went for a long walk which exhausted me but was just what he needed. He had loads of energy and was striding ahead. It was a beautiful autumnal day and I wished I'd had my camera - but in the rush I wouldn't have had time to stop and take photos.

He was fine again when we returned home until just before it was time to go back to the ward. He became quite difficult again then - especially with Jane.

I hope it will become easier with time but both days this weekend he has asked why he has to go back. Why can't we just ignore the doctor he says. I know there will come another day where he refuses to go back or runs off again.

Sam was home again today.

We went to some nearby rocks this afternoon. He was so excited. Running from one to another, pretending he could still climb them. Talking almost sensibly because he had something to focus on.

Collecting him and taking him back was so difficult because at weekends there is nobody on reception - and the intercom buzzer doesn't work. There's nothing to say that the intercom buzzer doesn't work so you wait and wait. It's been like this for weeks at least.

Jane rang the ward on her mobile and they came. This morning her mobile phone was recharging and so she was not able to do this. Last week I saw ambulance staff having the same problem. It's not good enough but they clearly don't care.

We've been very disappointed about the CPA meeting last week.

It just seemed to be going through the motions. Many wards have taken CPA meetings very seriously with full reports from everyone, proper minutes and plans for action agreed. Here the nurse had to find the psychiatrist to remind him and let him know that we and Sam's care co-ordinator from the Assertive Outreach Team had been waiting in reception for ages.

We were trying to build a good relationship with the psychiatrist as he'd seemed very positive when Jane had seen him before. Perhaps we should have been clearer and firmer. It's easy in retrospect.

But nobody else had produced any notes apart from us. There were no real future proposals. Nothing is going to change. No real note was taken of the issues we raised or even the issues they raised about Sam's safety.

So we rang Sam's care co-ordinator. It's half-term. He's on holiday.

Last week at the CPA meeting it was agreed that Sam could have lengthier leave with Jane or myself.

So I arranged to pick him up before lunch on Saturday. Jane was away for the weekend and I was a little nervous about taking him on my own - never mind for up to six hours. Recently he has been very changeable and unpredictable. Sadly staff never take him out because of their own concerns despite the fact that he is entitled to such leave.

When I arrived the nurse brought Sam down to reception rather than me having to go through the long palaver of being taken up and Sam signed out before coming back down again So that worked much better.

We drove home. We had time as the leave was longer. It was the first time Sam had been home since he had stolen his Granddad's car some months ago.

Everything went well. We had lunch then went for a longish walk. We stopped off at my mum and dad's but Sam seemed rather distracted so I decided not to stay long. We went home for a cup of tea then another shorter walk. Back home - another cup of tea and it was time to drive back to the hospital.

The longer Sam was out the more relaxed he seemed. We chatted away well even though some of it didn't make a lot of sense!

Though when it was time to go back Sam became quiet again. He clearly found the transition difficult.

When we arrived at the hospital there was an ambulance parked outside. I tried to take our time so they could go in first. It looked as if someone had just been sectioned and they wouldn't want us getting in their way. But the ambulance medic was having as much difficulty getting anyone to answer the intercom as we always do. So they were still at the door waiting as we got there.

Having got back Sam was determined. He'd got into the mindset of being back. He was no longer listening. He was focused on the task of returning. The door opened and Sam stepped forward. I called him but he ignored me. I took his arm but he shook me off and pushed past into the foyer. The medic looked at me and smiled in an understanding way.

A slim, rather forlorn looking young man stepped nervously out of the ambulance and was led in to be met by a burly male nurse and they went off to the ward.

Another nurse was just coming off duty. She asked us what we wanted and called to the burly nurse to phone through to Sam's ward.

Sam and I sat down in reception and waited. The nurse sat near by texting on her mobile phone as she waited for her lift home.

We sat like that for nearly ten minutes. The nurse then went to get someone to phone through again. Eventually Sam was collected with apologies. Sam went with barely a backward glance. He was back in hospital mode now.

It was Sam's CPA meeting today. That's a planning meeting with all relevant staff. But sadly we don't seem to have come away with any plan!

Not that we were surprised but ...

It all seemed very low key. On some wards this is taken very seriously with proper reports and action plans. Here the only statement presented was ours. And despite our request for it to be circulated to all attending it was given to the consultant alone. There were fewer people there than at others we have been to and it was rushed by the consultant. We got the impression the were going through the motions because we had requested it rather than it being a genuine planning meeting. I suppose none of them are genuine planning meetings. This is what we have found about the Health service - both the NHS and private providers - that meetings are for the sake of meetings. Real plans for action are decided elsewhere.

Sam just came in at the end. His answers to any questions were totally unrelated to what he had been asked.

Then suddenly - even though we had already discussed and agreed a medication plan - ie keep everything stable for a while - the notion of reintroducing Clozapine was suggested again. There has developed a dispute about why Sam was taken off it and whether it really would be dangerous to reintroduce it. We of course are very cautious and Jane in particular is very against it. But if they only had half decent records it would avoid this kind of dispute.

We took him out on leave immediately afterwards. Then he became more articulate!

We had bought him some new trainers. We got him to try them on. His bare feet seemed to be covered in black oil and he had blisters. We'd brought spare socks. Fortunately the trainers fitted him. Unfortunately he was wearing a dirty zipped fleece top that was not his own and nothing underneath. We had hoped to pop in to a pub for a meal. So we went to the local supermarket store and Sam chose a couple of sweaters, a new fleece, some socks and boxers.

We found ourselves walking round a cemetery of all places - with wonderful views of the city centre below and hills behind. Then we walked back to the car still parked at the hospital where Sam got changed.

We drove to the pub with Sam now looking almost smart! Though when we arrived he suddenly wondered off into fantasy land again. Despite having spent the last half hour saying how hungry he was once there he didn't want anything to eat. He asked me if the chefs needed killing - and that was even before he had tried the food. Afterwards I was tempted to answer "yes!"

He calmed down and ate something and we went safely back to the ward. There we had to wait in reception for over half an hour as there was an incident on the ward. It doesn't inspire confidence.

Jane usually goes out on a Wednesday but she was so upset following the meeting that she felt unable to. It's just rather depressing again and adds to the feeling that nobody any longer has any real ideas of where we go from here.

Sam phoned earlier today to discuss buying some new trainers (sports shoes). He was sensible and organised.

Then this evening he phoned again. He wanted me to pick him up then to take him climbing in the dark. He sounded really high.

I know he is very changeable but I worried seriously about whether there might be non-prescribed drugs on the ward tonight.

We took Sam out yesterday. First we were summoned to speak to a nurse. I wrote about that yesterday.

After that we had to wait to be let out as the other staff members were out with patients having their hourly cigarette break.

We sat and chatted with Sam for a while. His face looked less bad than I had thought. Everyone had said how bad his black eye was so the reality seemed less severe somehow - though I was glad it was his rather than mine!

His eye was bloodshot. (He'd rung one evening to say how his eye was red where it should be white and was worried - so we tried to reassure him.) Around it was a fascinating mix of shades from yellow through to blue and black. However it was not hugely swollen and seemed to be already getting better.

We spent the afternoon walking through a park in the drizzle and having a lone cup of tea in the empty cafe just before closing. But it was good to have the fresh air and look at the beginnings of autumnal colours. Sam ran just for the hell of it down the grassy, damp hill. Then he became morose for a while.

"Do I have to go back to the mental home?"

Sadly yes he did. But he seemed so much better out of that place.

When we visited Sam to take him out today we were told the nurse in charge wanted to speak with us. We were guided to the "Interview Room".

Again we were being persuaded to encourage Sam to "press charges" against the patient who assaulted him. He has been moved from the ward but she made it clear he would return. It was almost as if we were being threatened by that if we didn't persuade Sam.

We expressed concern though about a person with mental health problems being processed through the police system rather than the health system.

In talking of this patient - who is clearly very ill and is very violent - when talking about alternative placements she repeatedly talked of him being disposed of ...

I was shocked the first time - but she used this same phrase at least three times. I find it very hard hearing a nurse talking of patients being "disposed of".

I wonder if she might one day talk of Sam in the same way?

I had a phone call from Sam's ward today.

"Sorry - but there had been a serious incident ..."

What could it be now? Had he gone over the wall again? He'd propositioned the matron?

No - it was almost a relief to hear that he had been beaten up again. It's the second time he has been assaulted on the ward by another patient in the last few weeks.

The doctor was visiting him as we spoke. He was put on to me - "a thump to the cheek, no broken bones, he'd have a black eye in the morning."

The nurse was encouraging me to complain to the psychiatrist. There is a ward round tomorrow. The ward clearly want rid of this difficult patient. A complaint from me will help them.

But ...

... if it was Sam who had hit rather than been hit I might feel very different. if the violence was part of his psychosis he deserves the best possible care. it is the staff's responsibility to cope - yes I know that is difficult, but just passing him on is not resolving the problem. He might benefit from staying longer on that ward.

Having said this, all-male psychiatric wards are unhealthily violent places. Mixed wards are discouraged for obvious reasons but are much more amenable places for male patients - but sadly not for female patients.

On Saturday we took Sam out again. As with each of the previous weekends it seemed to go well. He was a bit up and down. About half way through the walk he suddenly started to tell me quite aggressively that he had set up a death squad from Johannesburg to kill me. Then moments later he was fine again.

Sam phoned twice yesterday - then again today. He seemed very well each time.

I think he was just bored.

We took Sam out on Saturday.

When we collected him he seemed fine. That was good as he had seemed very confused, psychotic and angry on the phone the day before.

Then in the car he suddenly started questioning me very aggressively about his money and how much, if any, he had and how we were looking after it for him. He was worried it was causing me stress. Eventually he seemed satisfied and calmed down.

We went to the same place as last Sunday which had worked well. We had a different but nice walk, a tea at the cafe and a stroll back to a different car park. It all seemed to work out very well. Sam seemed calm a appeared to enjoy it. On the way back though he suddenly started running up and down some steps. It appeared that he was running off and I'm sure if he had been out with staff they would have marked it down as an "incident". But he was just exuberant and needed to burn off some energy.

When we got back Jane went back to the ward to collect a drawing he had done for a friend whose birthday is later this week. It made us realise that he must have been well for some of the time last week. We'd got it into our heads that he must have been unwell all week as that was how he was each time he was poorly. Perhaps it was only when he was poorly that he felt the need to call us.

The picture was wonderful. I do hope that the friend likes it.