'schizophrenia'

- a carer's journal

This is a sincere apology to anybody who may have written to me since I stopped writing this blog. For reasons I will not go into now I was no longer able to continue with the blog. I also stopped accessing my email account at that time. I am aware I will have received messages for many readers who may have wondered about me and those in the blog.

I am well and life has moved on apace. I do not intend to restart the blog but may write an occasional post to help long term readers get up to date with more recent events.

A consequence of me not accessing my yahoo email account is that Yahoo have deleted it and I can no longer access it. If anyone wrote to me years ago and never got a reply then please accept my apology. You can contact me now at mikemindriddles@gmail.com.

I hope in the future I may be able to use some of the blog together with further writing about the issues addressed in ways that may be of interest to a variety of readers.

I will try to explain soon why I have not posted for some time. However my post today is not to do with me or with Sam. It is about an Iranian blogger - Hossein Derakhshan, known as Hoder.

Not long after I started this blog I suddenly got a huge number of hits - far more than usual. Why I wondered was this? I discovered that Hoder had written a post that linked to my blog. I discovered he was an Iranian, at that time living in Canada with a huge following in Iran. I forget the details now but it turned out he had a family member who also suffered from mental health problems. We exchanged a couple of emails.

I had forgotten him until by chance I came across a short article hidden in a corner of today's newpaper. It has taken me some time to track it down on the net.

In brief he returned to Iran where he has been sentenced to 19 years in prison for anti-state activities because of his blogging. Reports said that prosecutors had requested he be given the death penalty.

The newspaper article is here with further comment here and here.

In the UK there is a charity and campaigning organisation called Amnesty which tries to act in support of people unjustly detained across the world. They have written of his case here. You will find there a link to a page to "Take Action" about such injustices.

I guess my blog has in part been a campaign about Tom being detained, if not unjustly, at least for reasons outside of his and our control for nearly ten years. Hossein Derakhshan is in danger of being detained for writing about and supporting democracy in his home country.

I urge all readers to do anything they feel able to protest about this and offer him support.

Hello.

Long time, no see.

I'm sorry.

I've just found it hard to write recently. Just to let you know we are all still okay and there are many positives despite the numerous occasional blips. I'll try to catch up soon.

I would like to say a special thank you for the supportive emails I have received. I do apologise for not having replied to any of them. It is quite inexcusable of me. It has been very good to know that people have been thinking of us so kindly. So again - thank you.

There is a lot to say.

Ups and downs ...

... downs and ups.

But it has recently sometimes become a stress to write about it rather than a release. So if I have been here less often I am sure you will understand. Though I am sure you will read about it all here soon.

Jane has had further meetings with the psychiatrist over the second opinion suggestions. The response from the psychiatrist has been interesting ... non-committal at first then more positive ... after Jane had spoken with his boss. We have suggested someone who may have a broader approach who Jane actually knows. That could make for complications but there needs to be a consideration of alternatives.

We've seen Sam lots over the last few weeks. He's phoned as well.

Yes - he seems very positive. He is irrational and unable to hold a conversation but he seems happy and content. Though one sometimes wonders if being happy and content in such a situation is a rational response ... though it is what the ward staff are looking for as evidence of progress.

Sam phoned early one morning last week.

The sun was shining on the cottages that he could see through a gap between the buildings from the courtyard where he had been having a cigarette before breakfast.

We both cried that this was the main pleasure he would get from that day and most.

Jane went to see the psychiatrist today with a friend. She wrote out an agenda of questions for discussion but he was bemused by it. He thought he ought to have all the answers but didn't have an answer to one of them. He seemed not to understand that they were points for discussion rather than direct questions of him.

He was frightened that he didn't have the answers.

He was even more frightened that he didn't understand the questions.

Jane was yet even more frightened that he didn't understand the questions.

He felt "got at" because of this ... but it was a genuine attempt to have a multi-disciplinary discussion. As the team leader, surely he should feel competent in this? Their ward rounds are described as multi-disciplinary team meetings. But he didn't feel confident. He could talk about medication, leave and risk assessments; anything else sent him into a panic or denial.

Consultant psychiatrists in the NHS are not used to being questioned or having to substantiate what they are doing. They expect deference and in return do what the ward staff ask of them.

It is four weeks since he suggested he wanted a second opinion for Sam. He has done nothing since then.

When Jane discussed this with him he suggested a name for the second opinion. We have Googled him and he is an expert in "Schizophrenia", in medication and in treatment resistance. He has written papers about the additional medication that Sam's psychiatrist wants to introduce. What is the point in getting a true second opinion from someone whose background is such that they are almost certain to support what Sam's psychiatrist intended to do in the first place?

We have been very polite with him so far. Perhaps it was good to have made him squirm a little today ...

Though on previous occasions this has often had negative outcomes.

I'm here at the computer to escape a TV programme. It is about a man whose father was killed by someone with serious mental health problems. In the news last week there was a murder of a boy whose elder sister was also injured with stab wounds. The accused is their brother who had a history of mental health problems.

These are desperately sad cases. One's heart goes out to all in the families. But I cannot bear to watch this programme as the advance publicity gives the impression that people diagnosed with schizophrenia will be demonised as wild and dangerous people. Perhaps it will be more balanced but the main media view is that people suffering psychosis are dangerous to society whereas in the main they are more dangerous to themselves.

If the programme looks afresh at approaches to supporting people with mental health problems that may be positive ... but I fear the outcomes from such programmes are likely to be more negative.

We had hoped we might have been able to go for a walk around the grounds with Sam and a couple of staff when we visited today. Jane had rung to try to arrange it yesterday. But just before we were due to set off we received a phone call from Sam's named nurse, J.

As well as smashing his guitar on Thursday evening, on Friday evening Sam had slapped J's face and later thumped him in the stomach. He was unable to explain why he had acted in this way. He denied he had done it and claimed the mark left on J's face was a birth mark.

So of course his leave has been cancelled again.

It is lucky in a way - though not for him - that it was J. J is very experienced and genuinely wanted to try to understand why Sam had acted in this way so reacted to it all very calmly and properly.

The phone conversation though was very positive and both J and Jane said how useful they had found it.

Sam was quiet but fine when we visited. A bit distant perhaps. Friendly to start with but became more distant as we chatted. He mentioned slapping J but could not explain why - other than he was angry at being detained.

He seems angry too at seeing us get older. Perhaps it reminds him of having lost his youth in hospital. We have noticed too how he is aging more quickly - lines around his eyes and so on. No doubt effects of the medication. We worry the internal effects may well be the same.

When we have spoken to Sam on the phone this week he has just seemed so very rational and sensible. It is good that he seems to be settling again. Jane reminded him that we were visiting tomorrow and would bring him some tablature for his guitar.

"Don't bother," he said.

"Why not?"

"I've smashed the guitar."

That's third now, I think. Or is it the fourth?

But the monetary value of it is only the same as the cost of less than two weeks of his tobacco consumption at the moment. If he is getting pleasure from it - and even from smashing it in frustration and anger at times - perhaps we should regard it as a disposable resource.

Jane decided she wanted to go to ward round meeting. She had rung the day before to say she was coming and arranged to be there at two. It has been made clear that we are welcome.

Then at about half past eleven this morning Jane picked up a message from our phone that the meeting was this morning as the consultant had another appointment this afternoon. He would have to leave by ten past twelve.

As it takes us at least twenty minutes to get there, depending on traffic, I revved up the car while Jane grabbed her coat and tied her shoe laces. Twenty minutes later I was pulling up outside as Jane was phoning to say we had arrived.

Sam was really calm. He was great with Jane and was polite in the meeting and quite positive. Until ...

the doctor spoke of him getting a second opinion from another psychiatrist.

Sam cannot accept that one psychiatrist should offer an opinion on his mental health never mind two! So he became angry and started swearing at the doctor. It doesn't help him get his home leave back ...

but he never has been good at playing the game.

Later in the corridor with Jane he was looking over his shoulder and calling out aggressively to the doctor.

He calmed down with Jane and went into the activity room to show Jane a painting he had done of a blue face.

"It helps me to paint in blue when I am angry."

Then he played his guitar for Jane - it is kept in that room for him. Even she could tell it was out of tune. After a chat with the occupational therapist it was agreed that I would pop in later and tune it for him and bring tobacco - he has run out again already.

Then he went to sit with Jane in the dining area. They sat on a couple of easy chairs at the side. In the middle are large table and seats units made from heavy metal with the four seats and the central table all welded together. We had been sitting on one with Sam at the weekend when Sam had begun to get a little aggressive and I had been worried as it was difficult to escape easily from it when sitting in it. Well Sam got angry again with Jane talking about the doctor and stood up - then lifted and threw the heavy table unit against the wall before storming out.

Jane knocked on the office door as she felt someone should know about it. Nobody made a fuss but the unit was lifted back into position. On other wards they might have been setting off alarms and people running down corridors. Sam has been pinned down and injected for far less. But here it was just matter of fact. Everyone was calm and the situation did not escalate. The occupational therapist joked with Jane about it saying that she had been surprised they were not bolted to the floor - so it had clearly happened before. Jane waited there on her own while Sam had a cigarette.

The ward manager wandered past and popped in to chat with Jane. "I'm worried about you being in here on your own," she said and took Jane to the quiet room where we often meet Sam - much further away from the office if there was a problem! There though she chatted with Jane and made a point again of saying how she has two adolescent sons and that if either of them had to be admitted to a psychiatric ward then she would be on the phone every day. She emphasised that she thought Jane was restrained and would be justified in making even more of a fuss about things. This was all from nowhere ... she has spoken similarly after Jane has had to complain to her but now it was just one mum talking to another about distress for one's children and how to deal with it.

Sam came back in and said to Jane, "We don't argue really do we mum? We're just saying the same thing really."

I was sitting in the car reading the paper I had walked down the road to buy. I hadn't planned to go today. It is just too much for me at the moment. Jane rang and I went to pick her up. I had planned that we might then pop to the pub down the road for lunch as it was getting late and I guessed Jane might appreciate it. But she explained we needed to get tobacco and then tune Sam's guitar. So we went to the shop and came back and waited in reception ... and waited in reception ... and waited in reception. Jane told me of the morning and as she started to talk of the conversation with the ward manager I had to hold back the tears. It is always human kindness that does it to me. Eventually we got in.

Sam was great. He seemed pleased to see me. The activity room was opened and I looked at Sam's picture and tuned his guitar. I started to remind him of some basic chords. A few more patients came in to listen and watch. Soon the nurse came in and explained it would be easier for staff management if we went to the quiet room while we tuned the guitar and then returned it to a member of staff. But he did it very nicely.

Sam had remembered some chords and was beginning to enjoy making music. It is good for him to have something to focus on outside his head. I promised to find him some tablature to take in though I know he will have difficulty in concentrating to follow it. But it was a good session.

Then Jane and I went for a late lunch - and a beer!

This evening we have both been drained and exhausted.

Sam phoned just now. He was clearly very over-excited and irrational.

He mentioned his named nurse J who was in the office writing things down.

Alarm bells rang in my head straight away. A senior nurse, in the office, writing things down - and a very excitable and lively Sam wo saw this as being significant. This sounded like an "incident". From previous occasions Sam knows that a nurse writing notes after he has one something stupid can have consequences.

I tried to get him to tell me what he thought J might be writing down. He was in such a state that it was difficult to get anything sensible out of him but it was clear he had been racially abusive to someone who had become very upset. Sam mentioned the words he had used. I hope it was only verbal abuse and nothing more.

I suppose we had better ring J in a while to find out what he has had to write down and hope that Sam has settled a bit.

We visited Sam today and he seemed in good humour. He talked about irrational things in the most rational way.

It was just towards the end that he seemed unable to keep it under control much longer. He started staring at me strangely and telling Jane she was ill. So we decided to leave while the mood as still quite light.

Last week Sam asked if he could have a guitar. He has been enjoying using a mock guitar with a computer game on the ward which has probably got him interested again.

In the past he has smashed up two guitars he has had on the ward - one within hours of him getting it. But they are only cheap acoustic ones. He spends more on tobacco in a fortnight so it is no big deal.

Jane rang the ward to ask if we could bring one in ... it would have to be discussed at ward round. I suppose the strings are potentially dangerous items.

Well at ward round it was agreed that he could have one so yesterday Jane took it in - of course with some more tobacco! Sam was thrilled to see it. He spent half an hour concentrating on trying to play it with her. She had been told that he had been not at all himself and very rude with staff on the ward that morning but now he was so settled. It is good to have something for him to focus on outside of his own head.

The phone rang again this morning. Jane answered it.

"Hello Mum, can I speak to Dad?"

"He's in the the shower Sam. Can I give him a message?"

"Just tell him 'Thank you'."

"Thank you for what?"

"For everything."

The phone rang.

"Hello?"

There was a clunk as someone put money into a payphone.

"Dad?"

"Hello Sam." It was unusual for him to have the change for the phone. Usually there was silence and we rang him back.

"I've been locked up with mad people for over eight years. What have you done to help?"

"But Sam we have tried to ..."

There was a click as he put down the phone.

Sam seemed very well when we spoke to him on the phone this morning and when we visited him this afternoon.

But we were told that last night he had smashed his CD player and had urinated on his bed.

Jane decided to attend the ward round meeting earlier this week. We had been to the planning meeting only a couple of weeks earlier. But of course, yet again, things change so quickly that there is a need for a short term response and the longer term plan can be quickly forgotten.

We wanted to emphasise our thanks to the staff for the fact that they were still being positive with Sam and with us while things have been difficult. Also we wanted to suggest that there needed to be a major input of some sort in terms of psychological and therapeutic support to try to get Sam over this blip.

They started though by trying very hard to reassure Jane that they had no intentions of trying to move Sam elsewhere. Jane must have mentioned this. It is a real fear. It has happened everywhere else. They are so used to "improvement" in their behavioural sense with the possibility of patients moving on. When an initial improvement leads ultimately to further decline they are at a loss and eager to move him on before it becomes apparent or because they do not know want to do next. Sam is now on a forensic ward. Where does he go from here if they can't cope?

But only a few weeks ago on Christmas Day Sam and the family enjoyed a lovely day together. So it can go well for him and us. How do we get back on the upward spiral?

So they were trying hard to reassure Jane of this. Then they started to talk of medication.

They see a need for change. They do not understand him. He seems to be outside their experience. Usually on Clozapine patients do so well ...

Sam has been there for eighteen months now. This is the second time he has been on Clozapine. Both times he has been taken to hospital with physical health concerns.

So what do they propose now?

More psychological and therapeutic support?

No ...

... an additional anti-psychotic as well as the Clozapine! Amisulparide. I haven't even Googed it yet - or any evidence of its efficacy combined with Clozapine. But haven't they got it yet? Sam as been on so many combinations of anti-psychotics and other medications and none of them have been the long term answer. Any idea that they will suddenly find the magic combination seems doomed to failure. As a psychiatrist once made the mistake of saying to us as they tried a new combination, "It's just a game."

Jane did very well at keeping her temper ... or so she tells me! I think she may have done so. Because the consultant also talked very genuinely about wanting a second opinion as this was out of his experience.

A previous consultant at a different hospital a couple of years ago had suggested the same ... but they moved Sam on before it could happen.Then we were recommended a name. He had agreed to be involved. So Jane recommended him this week and it seemed to be taken seriously.

Whilst in many ways it is very bad news that Sam continues to be so troubled, it is perhaps good news that it is recognised that what we have said continues to be true and that they are open about looking at different approaches.

Of course also after all this in the meeting there was not time to discuss our view that there needed to be an emphasis on psychological approaches. There are occupational therapists and a psychologist attached to the ward. Why are they marginalised?

So it was left vague ... additional medication ... a second opinion ...

In it all Sam calls on the phone ... very positive to us at the moment ... but in a world of his own.

On the phone on Saturday Sam had seemed very well when he called up a couple of times. Much better than we have heard him for ages which contrasts with his recent behaviour. That boded well for our visit in the afternoon.

The visit started well - though we now have a staff member standing just outside the door again. It became noisy outside - people talking loudly to be heard above the vacuum cleaner that was getting close. The door was left open - "for our safety". Sam has always hated the sound of a vacuum cleaner. I wonder if it sets off difficulties in his mind? I know often myself I find too much noise stressful.

But Sam suddenly changed. He started talking with us aggressively about illnesses and weaknesses of our own. Why had we become ill and weak? We were getting old - but that was in the mind and we should not succumb. He became aggressive and I was concerned he might become violent. The staff member outside was chatting with another patient. I could have called him but it did not become necessary. I said to Sam that we had shopping to do and ought to go - but he pleaded for five minutes more to finish the conversation. Then he started to harangue us again. Soon we found a break to leave. Sam didn't seem sorry to see us go. He was angry with us for getting old and weak (not our perceptions of ourself except on bad days!) Much of our weakness is caused by our reaction to Sam's own distress and containment - but also much of our strength.

We have both been concerned that Sam is rarely getting any leave. He is entitled to outdoor leave with two male members of staff. But of course he is not getting it. The excuse is usually either that there are not two male members of staff available or that Sam isn't well enough or a combination of both. So Jane spoke to a few staff including the ward manager raising concerns about this. The more he is couped up the more poorly he will get so they will say he isn't well enough to go out - and we are into a dangerous downward spiral.

It was emphasised at the meeting the previous week how important it was to try to get Sam out more and back onto the upward spiral. So we were keen to encourage them to do something to try to begin that process rather than wait for the opposite.

We had a call later in the evening. The ward manager had asked the nurse in charge to try to make two male members of staff available to take Sam out. She managed to arrange this and went to tell Sam the good news. "Hi Sarah, how are you?" said Sam as she approached. "I'm fine," she replied but before she could tell Sam that she had arranged for him to go out he slapped her across the face with no warning.

It was some time later that she rang to tell us about it but still seemed upset. Even if not badly hurt such things can be a huge shock and she was on duty until late in the evening. It is a credit to her that she had not gone off duty straight away but perhaps that might have been best for her. She was even grateful that it had happened to her rather than in the grounds where a member of the public might have received the slap. But this highlights the problems ahead in getting Sam leave. If he can slap someone when he seemed well, with no warning the assumption will be that this could happen at any time. The risk assessment will be that his unpredictability makes it impossible to give him leave - and staff will not want to be responsible. So the downward spiral will go on.

Jane was very sympathetic. It is a shocking thing to happen to a nurse and is just what Sam was doing when he was first admitted. But he has been on Clozapine now for over a year. So what is their plan B? Of course there isn't one. On every ward Sam has been on there has been an assumption that once they got the medication sorted out it would be fine. Each time there is an initial improvement but then he deteriorates again. But each time this deterioration goes even further. Now he is in a forensic ward ... where next?

We have been very depressed by this.

When Jane was talking with a nurse on the phone from the ward at the beginning of the week the nurse said she was surprised we hadn't had a call from them at the weekend!

Sam had mentioned on the phone a few times that he had been to the hospital at the weekend and they had electrocuted him! This seemed most unlikely but Jane just mentioned it. To our surprise it seems he had been taken to the accident and emergency department at the local hospital. He had been chasing up and down the corridor - it seems he has been doing this a lot. Soon after he was given a routine blood pressure test. This was so high it went off the scale so off he went to hospital.

All the tests there said he is fine - including the blood pressure so they are putting it down to a malfunction of their equipment. But it is a concern as Clozapine has had an effect on his heart the first time it was prescribed for him a few years ago.

We didn't get a phone call from the hospital while we were away for the weekend. Often when we have been away we have had calls about some disaster that has happened. But this weekend we had a lovely time with relatives - meeting half way between us as we hadn't managed to meet up at Christmas. And there was no disaster phone call from the ward!

I had wondered if I would be able to go though. I had another of my fatigue attacks on Friday and collapsed into bed finding it difficult to be roused the next morning when we had to set off. I could so easily have said I was too poorly but we managed to get ready between us and fortunately we had decided to go on the train rather than drive.

A friend once said to me that the antidote to chronic fatigue syndrome is pleasure. Well we had a very nice weekend with good company, good food and plenty to drink! The town we visited was surprisingly beautiful and the family hotel where we stayed was good too. So it has done me good ... though I found it all very tiring and am just aching for a few days to collapse and do nothing.

My dad said that Sam had phoned a few times over the weekend and had seemed very confused. Jane phoned the ward as soon as we got home. The nurse said he had been manic and running up and down the corridors. He had also been making inappropriate sexual remarks to female staff again. But there had been nothing they described as serious incidents. She said she would let Sam know that we were home.

The phone rang immediately. Sam was calm, reasonable and loving - if totally bonkers! They must have just given him some Lorazipam!

We're going away for the weekend so visited Sam today. We'd hoped to go round the grounds (I mean car park) with him but it was raining. We rang on the way, half an hour late, delayed by the traffic as the school buses and cars arrived at the three High Schools we had to pass. We apologised for being late and wondered if we might go with Sam to the Visitors' Centre in the main building if it was too wet to go for a short walk. It was explained that Sam hadn't been at all well today. There had been a minor incident when he went out in the morning so it was felt it was best for him not to go out again with us. That was fine. We knew he hadn't been well on the phone the other day and realised the decision had been made sensibly in terms of Sam's and our safety. But it might be possible to go out with Sam into the hard area (or "cage" as we know it.)

When we saw Sam we realised how sensible it was not to take him out. He was waiting for us but was troubled. He wanted to go out with us and his fists were clenched, his body language aggressive. He wanted a cigarette and to go out. Staff were very good with him and it was decided we would go out into the hard area with him and a member of staff. Sam's named nurse, a senior member of staff, came out with us.

Sam was surly and aggressive, it was hard to find any topic of conversation with him. We were pleased we were not cooped up in a room with him. We would not have felt safe. Even trying to be close to him and supportive outside was hard.

Sam was verbally aggressive to Jane and then threatened me ... coming towards me as if to attack me. We all realised it was time to go and the nurse let us out of the area while he stayed and settled Sam.

We were so pleased that it was an experienced member of staff who we knew and trusted who came out with us. He knew how to sort out Sam and us. He was confident and calm. A less experienced member of staff might have exacerbated the situation.

It is obviously distressing that Sam is getting worse. We've always felt that yet another different medication wasn't going to be the magic answer. But if it isn't then .... what next?

Sam phoned this morning. He didn't say much but seemed all right. We chatted for a short while. Then he said he was tired and started banging the phone on the wall.

He phoned again this afternoon. I answered in a positive tone and he seemed fine. We chatted for a while about things to do with his MP3 payer. Then he started to ask me if, before there was war, were there vampires and zombies causing evil? I started to say I thought they were probably just stories then he began shouting and banging the phone on the wall again.

On the phone recently Sam has seemed so well.

He was over-excited at the CPA meeting yesterday. He hates people talking about him and judging him - wouldn't any of us? - especially as he thinks we are all ill and he is well. But in the main he doesn't seem a lot worse than he has been at many different times recently. So it is important he gets his leave back.

He rang this morning.

"What day is it?"

"Wednesday."

"Oh - I might go climbing."

"No Sam you don't have any leave."

We've tried so hard to talk this through but he doesn't seem to be able to hold it in his mind.

So we went to the CPA (planning) meeting today. As always I get a bit anxious about such meetings ... and always afterwards wish I had handled them differently.

Sam's care co-ordinator wasn't there. We get on with him well but he hadn't been in touch. We wonder if he had even been invited. Despite asking for them we didn't have copies of the reports for the meeting beforehand.

We tried to play it low key ... but they seemed also to have that strategy! So there was danger of it turning into people reading their reports around us all listening to the psychiatrist trying to show how sensitive and accommodating he was.

It didn't help that Sam kept coming in and out - each time increasingly manic. But that was just how he responds to such meetings. Afterwards we went for a walk with him around the grounds - with two members of staff - and he was fine.

We had hoped to ensure there was some clarity about plans from the meeting ... but I'm not sure there was. Driving home we were still wondering what had actually been decided and what was the plan.

But the more we talked the more we decided that we had got what we hoped for from the meeting. We managed (I hope) to disguise our horror that Sam had been administered the new PRN (on demand at the discretion of nursing staff) of Olanzapine - another anti-psychotic on top of his Clozapine - on an almost daily basis. Sometimes this had been twice a day as well as the PRN of Lorazipam. Yet they were unable to tell us of any serious incidents. To be fair the doctor had the medication record there and told us this detail - we've been to other meetings where the consultant had no idea what he had prescribed. As he talked us through it I think he shared our concern and removed the Olanzapine.

So that was one thing we had hoped for that was achieved.

For the rest of it we just want them to work towards Sam getting his leave back soon - and they genuinely seemed to share that wish. But there was little clarity of action towards that other than looking at how the ground leave he now has with two staff continues to work. But he only has that because Jane spent a long time on the phone to the psychiatrist who was covering that week and that the psychiatrist followed it up.

So we got home and treated ourselves to a chocolate biscuit and a cup of tea ... and a little later something a bit stronger.

I'm not sure how to help you catch up with events since my last post.

It's not that there have been lots of "events" - just phone calls, visits, conversations, elation and despair. Just the usual really.

It is just the up and down ... and the down and up.

Jane's spoken on the phone with the psychiatrist who was covering last week - who seemed very good and took on board our feelings that it was important to get Sam out. Jane also bumped into the ward manager when delivering Sam his fix of tobacco and reinforced this message yet again.

So they gave him leave - just around the grounds (ie the car park) with two members of staff escorting him. But at least it happened. And he's played football two days running in "the hard area" (or "cage" as we describe it.) We visited on Saturday and were able to walk around the grounds with Sam - and of course two staff. But he was fine. The more it works well the more they will see it is okay again and we can get back onto the upward spiral.

But tomorrow we have a CPA meeting - a regular planning meeting. After making a fuss about asking for a copy of his last plan, the minutes of the last meeting and reports for the next meeting we finally got a copy of the last plan. They had some trouble tracking it down. It clearly wasn't a working document then was it ... ?

My aunt died on Christmas Day. It was not unexpected. She had been ill for a while.

Sam hardly knew her so we hadn't motioned it until my Dad did. So Sam suddenly built this up in his mind.

I took my parents there yesterday and we stayed overnight before the funeral today. Everything went well and we were all again reminded at how sad it was that extended families only seem to meet up at weddings and funerals.

I had been worried about the snow and the journey back with a weather forecast of snow ... but the journey went fine apart from a short part near home. So we got back safely.

Then unpacked, got drinks, prepared a meal ... and got a call from Sam.

"Hi Sam."

Silence.

"You there?"

"Yes."

"You okay?"

More silence.

"Sam?"

"Been attacked today."

"What happened? What was that about."

Sound of banging the phone against the wall.

I called the office a little later. I tried to explain and asked how Sam was. At first all I got was that Sam had ben fine today. But after some questioning ... there had been an incident at lunchtime that had not involved Sam.

I guess it was a serious incident ... but it is bound to affect other patients. Because I suppose of "confidentiality" little was said. So it is hard to interpret Sam's reaction ... or whether anyone else there has noticed or cared.

After we met with the ward manager yesterday we went onto the ward to see Sam. She checked first to find out how he was. But it was decided he was okay - though someone stood outside the room all the time we were there. At one time Sam took off his shoes ... special shoes for walking and climbing he had got for Christmas. He was showing them to us, trying to explain. But looked as if he was threatening to throw one. The nurse came into the room asking Sam to replace his shoes. It was understandable but caused some tension. We managed to persuade Sam to replace his shoes.

It could have got difficult then but Sam cheered up. At the start he had been quiet ... he had perhaps just woken ... then he was sullen and quiet ... but later cheered up and it turned into a positive visit.

A new member of staff showed us out. He made a point if introducing himself to us and learning our names. I had said to the ward manager earlier that the attitude of staff on the ward was down to good management. This seemed to be a good example of that.

We had a meeting with the ward manager today. I was anxious ... not keen to go ... not sure of how to take it. We knew there were issues ... but how to address them?

So we wrote them down almost at the last moment ... and they looked right. Yes... that was what we wanted to say.

So we said it ... but not necessarily in the same order!

We'd sat a while in reception then met with the ward manager in the visitors' room. She was good ... tried hard to listen ... to accept ... to take notice.

But she said in all her years of experience she had not met a client like Sam before. So why do they all have to see this for themselves and try their own method and fail before passing the parcel ...

It is not good enough.

As we couldn't take Sam out on leave yesterday we visited him on the ward. We had taken in a new CD player for him. It was only a cheap one as he seems to damage or lose them so quickly. The last he had taken to pieces because, he said, he was embarrassed at not understanding how it worked.

He seemed pleased with the CD player but was a bit distracted. A member of staff let us know she was near by. They were clearly worried that he was unsettled. He looked a bit unpredictable and I was a little concerned. Then abruptly he said, "Right - are you leaving or shall I?" We started to say that we could go if he wanted us to - but then he took the CD player and marched off to his room leaving us alone.

Yesterday Jane phoned the ward to see about possible leave for Sam today. He is still not well. The nurse said not to worry as he was now being prescribed Olanzapine as well as Clozaril.

Not worry? Jane went ballistic. We've been here before ... Sam goes into temporary decline so they increase the medication dosage (already done recently) and then add further medication. Meanwhile Sam gets worse or turns into a zombie or both.

Jane managed to get in touch with Sam's psychiatrist. It turns out that the Olanzapine is just PRN - to be taken only when needed. But depending on who is on duty this can become a daily event. Usually Lorazipam has worked at calming Sam when necessary but they now say he seems to become "disinhibited" after taking that. Jane complained also about the nurse she had spoken to (who also happens to be the deputy ward manager) had not been able to communicate what was going on or offer any reassurance.

So later the ward manager rang. She too got a hard time from Jane but to be fair did do her best to be reassuring and understanding. There is a CPA (planning) meeting soon. It wold be excellent if there was a plan! Though to be fair trying to plan anything in relation to Sam seems to be fraught with difficulty. They seemed to assume that Clozaril would be the magic answer. Now that it does not seem to be working there does not seem to be a plan B.

We are seeing the ward manager on Monday but I worry that if we have already upset staff then our attitude can be counter-productive. However there has to be a balance where we can freely express our concerns without everything going pear-shaped as has happened too often in the past.

Sam has been phoning quite regularly recently. Too often this has been quite early in the morning! Often he has sounded not at all well - and a few times has banged the phone on the wall.

He phones other friends and relatives too. He will often phone his Granny and Grandad. Yesterday he told his Grandad that he was evil for killing people in the war. My father - Sam's Grandad - served in the medical corps.

Sam has had his leave cancelled again. Though it may be only temporary.

He went out for a walk the other day with one of the occupational therapy staff who he gets on with very well. It all went fine. Until just before they were due to enter the hospital grounds Sam took down his trousers and urinated on the pavement.