'schizophrenia'

- a carer's journal

Sam's been home on leave accompanied by a member of staff a few times recently - last weekend and yesterday. Also he asked his psychologist when he was meeting Sam earlier this week if they could come home together. Sam has decided he wanted to discontinue the family meetings on the ward. I wondered if wanting to come home with his psychologist was an attempt to set them in a different context, more relaxed and under his control.

Each time he has come home recently though he has started off very excitable, somewhat confused and unpredictable. But once home he has settled. His more difficult behaviour seems to be response to the ward - its aggression and violence, its expectation of madness. After a little while at home he seems to settle, become calm and reasonable - and more happy in himself.

He has talked lots on the phone and on visits home of being assaulted by other patients - the odd thump or kick. In the past he has been assaulted on other wards four times seriously enough to have to be taken to hospital. A couple of weeks ago another patient was assaulted seriously enough to have to be kept in hospital overnight. So these relatively minor assaults must be frightening and bring back previous traumas.

He is not currently a danger to others and should be on a ward with less violent patients. His present situation stops any possibility of him getting well.

A review has been published today in the UK on the use of anti-psychotic medication with patients suffering from dementia. Such medication is prescribed to 180000 such people each year. The report suggests that it is of no use to 150000 of them, has unacceptable side effects and may even be killing 1800 people.

You can read a news item about it here.

I have just written this comment on a BBC news blog:
"If it is unacceptable to give these dangerous, mind altering drugs with dangerous and potentially fatal side effects to elderly people it is also unacceptable to give them to young people diagnosed with 'schizophrenia'.

The withdrawal symptoms experienced when people stop taking anti-psychotics suddenly is like an extreme psychosis and has resulted in many tragedies.

Most of the positive research on the use of anti-psychotics is funded by the drug companies that are making a huge amount of money from selling them to the NHS. There is woefully little funding available to assess and trial non-medical approaches.

It is time that the use of this expensive and potentially dangerous medication of dubious benefit is reviewed for ALL patients."

Sam has been prescribed about ten different anti-psychotics over the last ten years - sometimes more than one at a time. Their positive effects have only ever been short lived. He has had many side effects including lethargy, aching limbs, slurred speech, agitation and weight gain. Recently he put on over 60 pounds in weight in a few weeks when he was prescribed a new anti-psychotic. He was once rushed to hospital with a suspected severe heart complaint associated with his medication. Yet he is still psychotic.

"Am I going to be in a psychiatric ward forever?"

Sam has often asked such things. It may be a sign of him getting better. Planning for the future.

"No Sam. Of course not." And I started talking of possible futures.

More perhaps to persuade myself than him.

We were sitting outside in the unseasonably warm wather. He had become calm and almost content.

"I woke this morning and thought of you and mum. I understood that your love was not going to run out. It made the day good."

Sam came home again yesterday with a nurse. He seemed very giddy at first. Laughing and giggling inaropriately, taking incoherently of strange things. He was in reasonable humour but he did not seem as well as I had hoped. He had been kicked that morning by another patient. His leg was bleeding. A patient had stood at Sam's door threatening him. Another shouts at the ward as the demons in his mnd.

It is no surprise Sam is in a state when he has to cope with this.

When we got home Sam sat outside smoking a cigarette. The last day in October yet it was so warm. Sam was loving just enjoying peace and quiet and calm. We went for a walk up a local hill and enjoyed the long view and the beautiful cloud formations. At home Sam enjoyed a new CD that Jane had bought for me recently - covers of John Lennon songs published by Amnesty Inernational in aid of Darfur. Another cigaree, another rest of the sofa listening to the music and th time to go ... relaxed ow and in a much better state of mind.

If it is the ward itself that is making him ill then surely somewhere different should be found?

We had a meeting with Sam's psychiatrist yesterday. It had been planned some time ago at our previous meeting with him that we had called to raise some issues.

Sam is getting more leave now which is good for him but there are a couple of very disturbed and violent patients on the ward at the moment which is disturbing Sam and it is not helping his own mental health. So we discussed a move to the other ward which has a different client group.

The psychiatrist listened well and seemed to take note of our views. I suppose we couldn't have asked for much more. But it was he who mentioned that Sam must have been there for almost a year now. Another year of Sam's life spent locked away. Surely there must be a better, fairer way.

A little after I wrote yesterday Sam phoned to explain and apologise. He'd been little distracted. He was sorry at how he had been with us but ... well things are difficult on the ward and he couldn't help thinking about it.

Some of what we had worked out was right but there was more too.

He had been worried about the patient who had got beaten up and had to go to hospital - but he was back now and seemed okay.

But he was also worried about another, new patient. He had been cutting himself and defecating on the floor in his bedroom. His room was covered in blood and faeces. Sam was upset and worried about this patient. He had been trying in his own way to help him.

He had also kept going to the office to ask the staff to do something. Despite how busy they were all supposed to be ... when we visited Sam yesterday there were at least five of them in the office.

Sam asked if they could get a bucket and mop and cleaning equipment. He said he would go and help clean it all up if a member of staff would come with him. Of course Sam was told to go away. But he kept asking. When Sam phoned tonight the room had still not been cleaned. Perhaps they expect that patient to sleep in the room as he had created the mess. Sam knew that was not right. He understood the distress of the patient and was angry that the nurses couldn't or wouldn't sort it out. He was even able to understand the reason why. He compared it with nurses who had to see lots of amputated legs and needed to turn off from it. He understood it ... but he could not forgive it.

So Sam spent time with the patient and talked with him in the yard and tried to understand and help. Then the patient started to shiver violently and Sam thought he must have found God and been better now.

More likely perhaps that he was going through "cold turkey" coming off drugs. Yet although this young man was in a UK hospital he was being allowed to suffer this with the only support coming from another mad patient.

Despite Sam's illness I am proud of his humanity and care for others.

Sam rang this morning. He knew we were collecting him and a member of staff at two o' clock. He was comming home until five. It had all been arranged. But when he had talked to a nurse about it there seemed to be a problem. Please could we ring and sort it out. He seemed so reasonable. Not cross in any way. There was clearly a minor communications problem that could easily be resolved, seemed to be his attitude.

So Jane rang the ward to enquire. "What leave?" was the response.

Jane had rung to arrange it earlier during the week. When she did so she was told that it was already in the diary. When Jane explained this the nurse on the phone said she would see what she could do. But a patient had been taken into hospital suddenly the day before and a member of staff had to be with him at all times which was putting pressure on their staffing of the ward. Also the war was currently rather unsttled. She would see what she could do and would get back to us later.

An hour later she phoned. She was off the ward now writing a report but hadn't managed to finalise anything. If we rang before we set off she could let us know if by then anything had been arranged.

So we rang then to find she was in a handover meeting. She would be discussing with the new nurse in charge what could be done. Eventually we got a call to say that they hadn't managed to organise anything for Sam to be able to come home so we arranged to visit. We had to wait for ten minutes in reception but eventually someone came to collect us and even sorted out for us to have a walk round the grounds with Sam. A young female nurse who we have not met before accompanied us. She was a little nervous and tentative but at least she was keeping an eye on Sam.

From what Sam was saying and bits we picked up from staff it seems there is a new patient on the ward who can be very difficult. Sam thinks another patient had been knocked down by him the previous day. Perhaps it is he who is in hospital. They probably need additional staff on the ward at all times to ensure safety and security. But it is very unfortunate how this also affects Sam.

He was not at all well while we were out with him. He was talking of violence, guns and death and the end of the world. He seemed very confused and worried.

Though he did manage to try out some of his climbing skills upside down on the underside of a concrete fire escape! So he is in form for his climbing visit next Wednesday. Let's hope that still goes ahead.

When Sam rang the other day he sounded more excited that I had heard for years. He had just been climbing with member of staff. He'd had a wonderful time and was thrilled.

The day hadn't started so well though. He woke early as he was excited about the prospect then after breakfast a female nurse had said that he wouldn't be able to go. So Sam went on and on about it all day and then the member of staff who was supposed to be taking him said that it would be possible after all. But when it came to the appointed time the minibus hadn't returned so again it was no longer possible. The staff member took Sam for a walk in the grounds and a cigarette. As they were walking round the minibus returned so they rushed to get Sam's gear and set off.

He must have been so disappointed just before they were finally able to go. Perhaps that added to his pleasure in the end.

He gets so little real pleasure and happiness it was wonderful to hear him sounding so cheerful.

There is another visit planned to a new climbing wall next week.

It is good that they are getting him out more now. There had been a problem last week when he had hurt a female nurse through being rough and inconsiderate and had had his leave stopped. I am sure the incident partly came about because of his frustration so I am sure restarting his leave will pay dividends.

I've just heard about a very distressing case of a seven year old girl who has been diagnosed with schizophrenia. Sam was nineteen when he received such a diagnosis - and even at that age I am not sure if the diagnosis has helped him. If you doubt it then just read the whole of this blog. I am also not sure if "schizophrenia" is a useful term. There are many professionals who would like to get rid of it as its use can be unhelpful. I cannot imagine though how difficult it must be too for the girl's parents in trying to decide what is best for her.

You can read about the case here.

I know that I am very concerned about the diagnosis being given to a seven year old as this almost inevitably seems to lead to the administration of very powerful neuroleptic medication. Others are too. You can read the views of Intervoice here.

This is not a intended as a campaigning blog. I aim to tell the story of Sam from my own perspective. Then readers can make up their own minds of what has worked well and what could have been done better.

But this is a case that I think should receive wider attention and I hope that readers will at least look at the case with some concern - and hope for this young girl.

We've been away for a few days visiting friends. It has been a short but very nice break.

We often find something goes wrong with Sam while we are away so when my mum phoned to say that they'd not been able to visit Sam as planned yesterday my heart sank a little. They went to see him in the morning but he was sleeping. He had been very lively during the night and hadn't slept so they didn't want to disturb him. We rang to see if we could visit today on our way home and that was fine.

We were met though by Sam's named nurse to say that there have been a few recent problems. He has been slightly violent on a couple of occasions - once he pushed a door into a nurse, trying to get into the office as he wanted his tobacco, leaving her with a badly bruised arm. So his leave had been stopped for a few days to make a point. There is a point to be made but I'm not sure Sam will get it. If he could respond logically he wouldn't be there in the first place.

So we were unsure what kind of Sam would meet us on the ward.

Well he was fine! In really good humour, friendly, welcoming, rational and ... just nice to be with! We didn't stay very long as it was soon time for Sam's cigarette and we wanted to get home to unpack. But the time with him was good and promising. A nice welcome home.

We are going away for a few days.

Visiting old friends in France. I have often found peace there ... I know I did when I first became ill.

We've not been there at this time of year though so I don't know what to pack. Thick jumpers or tee-shirts? As we are going for next to nothing with Ryan Air who discourage checked in baggage it will probably be lots of tee shirts that I will wear in layers depending on the temperature!

Something usually goes wrong when we are away.

I wonder what it will be this time ... ?

I think I was a bit worried about Sam coming home again for a few hours this weekend. He had been very unstable on the phone during the week and was quite unpredictable when I saw him earlier in the week. I just wondered how he would cope with leave home. Also I did not know the member of staff who would be accompanying him. That can feel like an additional stress too.

It might be coincidence but I felt I was coming down with something again ... I started to ache all over and especially in my back and started to feel shivery.

But once Sam was here it was fine. He wasn't well and was over-elated and the staff member was quiet and withdrawn ... but it went very well. Sam enjoyed it and we did. I'd got some of Sam's climbing equipment out that he had asked for as he has been promised leave with someone from the Occupational Therapy team to go to a local climbing wall. It reminded him of old times. He found the climbing shoes he had worn in South Africa before he became ill - where the is a picture of him on the Internet that often comes up in search engines.

But when we went on a short walk in the afternoon he insisted on taking his climbing gear with him and doing some low level bouldering. Getting his now seventeen stone frame off the ground requires more strength than he has so it is quite safe but you could see he had not lost his technique.

And he loved it.

Climbing again ... if only a few feet off the ground. It was reality again for him. He needs more of this not less.

Sam seems to have been taken out a lot this week and more is planned. Perhaps even to a climbing wall which he would love. So perhaps our rant to the doctor and to ward staff has paid off with real results.

Though sadly his mental state seems to be deteriorating again. I hope they don't relate this to his going out and cut it again.

On the phone to Jane he said he had relatives and friends there on the ward with him who we know are scattered around the country. He wouldn't be persuaded that they were not there.

I had a rant to a nurse on the ward the other evening. She is really helpful and cooperative and was trying to do her best ... but seems to assume that everyone else on the ward is the same. I was just trying to arrange leave for Sam with us this weekend .. but it as as if we were getting in the way and Sam already had leave planned with staff then. If only we had arranged it earlier!

Well, I just blew - Sam hadn't been out hardly at all until the current week. The previous week it had taken three phone calls to arrange some leave for him. Until now he only got extended leave when we asked for it. It was if again we were being penalised. I could hear my anger and kept apologising for it before I went off on another rant again.

I was lucky. She is a kind and considerate member of staff. She understood. She sorted it. Sam could come home for a few hours this weekend.

Sam spoke to Jane on the phone the other day. He was worried about Nell.

He often expresses such worries but hasn't done so for a while. It seems that he was taken out with a group into town to play pool. That in itself is good - that he is regarded now as well enough to go out on visits organised by the Occupational Therapy Department. But into town? To play pool?

It might be what the other guys fro the ward want to do ... and what Sam wants to do but ...

It brought back to him memories of extreme situations on the streets and in such places. He was remembering bouncers and scary situations he had got himself into in cities and such places. It has combined with lots of news about violent city murders. He lives with men who talk to him of murders they have committed. As he is on a forensic ward this may be true rather than illusion. It has made him worry again about Nell living in the city. He said though that it was good that he and Nell had been brought up with love ... that none of his acquaintances on the ward had similar backgrounds.

So Sam seemed disturbed by his visit into the city. But perhaps the countryside is a scary place for other patients on the ward?

Although ... might they not find some peace there also if they gave it a try?

I visited Sam on Tuesday. It should have been a family meeting but Jane was unwell and there was a mix up with dates so instead it was just Sam, me and his care co-ordinator.

I took in a book Sam had found at home at the weekend but forgot to take back. It was about Yoga and he was so articulate talking about that and explaining it to us ... but became staring-eyed and aggressive when I tried to discuss him making requests of activities for his planner.

He told his care co-ordinator he was being negative and told me he could read my mind and knew that I was being aggressive. But when we left he gave me a hug and said he loved me as if to undo those earlier words.

We had a good day with Sam on Saturday ... we could use our car to pick them up so that was okay ... went for a walk, saw Sam's Granny and Grandad, listened to some music, looked at some photos, found a book Sam wanted...

So a good day.

Why hadn't that and other good days with us at weekends been considered when planning the coming weekend?

I'm shaking.

Just totally in a state. I don't know why. It was just a phone call from the ward to arrange some leave for Sam this weekend. Jane had rung earlier. They were just returning the call.

They had some leave in for Sam on Saturday when we wanted him to have leave with us. And on Sunday it turned out. They were just doing what we had requested ... demanded even!

But it was as if we hadn't phoned early enough ... as if Sam was at fault for not discussing it in writing up his planner.

We have put so much energy into Sam getting more leave then it is almost being used against us.

It was as if we hadn't tried to organise it soon enough. They would organise it when we rang given enough notice she said ... but last week it took Jane three phone calls to organise it.

I was fuming but trying so hard to be calm ... so I was almost shouting at her but apologising at the same time knowing that anger would be counter productive. I was trying to be calm and reasonable but could hear my anger in all I was saying.

Then in all the emotion I got the days and times wrong and had to ring back again ...

So a nice cup of tea now ... and perhaps a glass of red in a minute.

At least Sam is getting out now. That is what we have asked for so I shouldn't be complaining. It is all good. Isn't it ...

Sam phoned this morning just as we were getting ready to go out.

He could hear his dead Nana's voice in his head. Couldn't Jane hear it too? She must be able to ... just listen ... Nana was speaking to both of them. He was determined they could both hear her though he always denies he ever hears voices.

Then ...

Stop it ... talk normally now!

Was someone going past? Had it suddenly got too much for him?

Then a few minutes later a call from the ward. He had run out of tobacco and money ... he had so much on Sunday.

So later in the afternoon on our way back we called in and dropped off tobacco - and underpants as he seemed to be running out of those as well! We went for a short walk around the grounds but Sam was curt, surly and aggressive. He chain smoked as we walked around even though smoking is banned in the grounds - after rushing across the road outside the hospital to cadge a light from a passing stranger. I'm not sure if the member of staff with us chose to ignore all this as he wasn't aware of it, was just really laid back or had decided it was the course to cause least conflict.

There was a problem getting Sam back on the ward because the reception staff were playing at being little dictators again (some of the nurses are afraid of them!) Sam just needed to get straight back there as he was finding it difficult. But it was soon sorted.

And we've managed to organise a few hours leave for Sam with us at the weekend so that is good too.

Later Sam phoned to speak to Jane .. "I love you mum." It was his way of apologising for earlier knowing he hadn't been in a good state of mind.

Not sure where it came from ... the anger and frustration. It just boiled over.

Nothing has happened in particular ... perhaps that is the reason. We asked for a meeting last week to try to sort out these things but nothing changes ... they just seem to become more embedded.

Jane rang yesterday to try to sort out seeing Sam this weekend and taking him out again. They would try to organise it and get in touch ... but nobody did. So Jane rang again today and asked the same ... the same response. Nothing had been done.

Sam had written nothing in his planner so nothing would happen. Sam will never write anything in his planner. His plan is to leave. That's it. Full stop. Leave. He doesn't want to be there. Writing in his planner would be an acceptance that he was ill, that he should be there. He believes he is well, that he is being held against his will - which is the case. So why would he want to fill in a planner? That would be an acceptance that he was ill.

So he doesn't.

So he does nothing.

So he sinks further and further into illness.

So I rant and rage and want to stop being reasonable but to rant and rage once more against them ... but that would bring their fury down on Sam once again.

I have said this to them and they look shocked. Surely not? But when we have complained before ...

... some responses have been catastrophic for many people.

"Don't mess with us," it seems to say.

I think I'm ready to mess with them again though.

I've been feeling a bit down physically and emotionally for the last few days. Part of it was trying to do too much gardening! But part of it too was perhaps trying to sort some things out with the ward and Sam's psychiatrist.

I woke today feeling dizzy and weak. I felt anxious and couldn't discover a reason. Jane wondered if I was worried about taking Sam out today. Perhaps it was but know I wasn't fully aware of it.

In the end the afternoon went great. We had chances to chat with Sam's named nurse and Sam really enjoyed an extended trip into the countryside to visit some of his climbing haunts.

Though when we returned he rushed off. It was far more important to get back before dinner had disappeared than to say goodbye properly.

Well we had a meeting with the consultant psychiatrist and the deputy ward manager.

They seemed to have got the message. The psychiatrist collected us from reception rather than an underling. We were very honoured!!! We were spared ward round also and had a meeting just with the two of them.

We said what we wanted and they seemed to take it on board. But will it make any difference? I wonder ...

Sam came in for part of it and was totally bonkers. He's been much better recently but it does the psychiatrist no harm to see him like that when he is trying to say how effective the "anti-psychotic" medication is being. At one time he was very antagonistic towards the doctor and turned to me and quietly said, "Can I hit him Dad?" I was proud of myself for telling him, "No"!

It was interesting that Sam had also been taken out for an extended leave that morning by ward staff for the first time since ... well, I can't remember. It was a nice walk in a country area. Coincidence?

We discussed Sam's possible move to a more open ward, what they seem to call a "step down" ward. His current ward is very secure and we feel this contributes to him being unwell. The psychiatrist explained that the new ward was turning into more of a rehab ward and was getting more staff. In the afternoon we discovered that it is getting more staff because it is going to be another "locked down" ward like where he is now.

Do they think we are stupid?

Perhaps it is best not to answer that!

We have tried and tried to discuss the fact that Sam has not been getting leave despite agreements and recommendations at ward round meetings. Jane has spoken again and again on the phone requesting a meeting and certain information. Then this week I get a phone call from a nurse who says that at our request he has been asked to set up a MDT meeting - multi-disciplinary team, I discover! Though I just hear "disciplinary meeting" and wonder what is going on!!!!

So he arranged for us to go to ward round again. We don't want to go to ward round again. That is the point. We keep going to ward round and everyone is very nice and agrees on what should happen but then none of it turns into reality.

What is it about the health service that nobody understands that plans are supposed to inform action rather than being just nice pieces of paper to file away?

So we will go to ward round and then are hoping for a proper meting to thrash things out. We don't want to do it in ward round but if that is all they give us then it will have to do ...

Watch this space!

We'd tried to arrange some longer leave for Sam with us on Saturday ... but it wasn't possible. Perhaps next week ...

It turned out to be Eid at the weekend so perhaps that was part of the reason. While we were sitting waiting to go out with Sam on Sunday a Muslim nurse from the ward arrived in his best clothes with a large beautifully decorated display of Asian sweets to take onto the ward. He gave us a beaming greeting as he arrived.

We had a nice walk with Sam - he was quiet but seemed quite well.

But we have been reflecting on the lack of communcation and the lack of action in carrying out agreements on leave and other things. We have asked so many times recently for a discussion about this ...

Jane rang yesterday to see if we could arrange to take Sam out this weekend for an extended visit with a member of staff. But no - despite Sam having been told that he can have such visits, when it comes to arranging it there are always problems.

Jane asked further about Sam's activities and even the nurse she as talking to was surprised to find that Sam had done nothing this week. And so it goes on.

Sam rang yesterday morning. Could we go for a walk in the countryside. He'd talked with the doctor the day before who said he could. Would I pick him up now?

I explained that these things needed organising. I encouraged him to talk to the staff and ask when he might go out.

"Can't you ring and ask?"

It was almost plaintive. Clearly he feels his words have little effect.

He complained that his agreed leave was not written into his weekly plan - that we have only just discovered exists. He was upset that other leave he has been promissed had been deleted from it. I said I would ring and ask about it as well as arranging for him to come out with us for the weekend.

"No Dad. Please don't do that. They will hate me for it. Just ask about us going out."

Is he really so frightened of them? is that what our actions do? Create anger towards Sam because we are trying to get them to do heir jobs? Sometimes it seems as if it is so much easier for them to sit in the office than to take a patent on a planned excursion.

It has to be said also that whenever we have complained it has rebounded on us. So maybe Sam is right. Yet again we should just leave it.

But I am the one who is getting really angry again now ...

I have been for the last few weeks and it is affecting my own health again.

When I saw Sam on Saturday he talked of being high and smoking crack in the garden that morning. He may have been high but I think it was his psychosis rather than drug taking. But it is worrying to hear him talk of drugs again. The conversation flowed gently with no real meaning for most of the hour I spent with him. He was friendly and sent a hug for his mum who was unwell.

On the way out I felt I wanted to talk to the nurse about the mention of drugs and the fact I am concerned about his psychosis that seems almost unrecognised on the ward. But we started talking in a lighthearted way about clothes and ward dress codes and other things. So that for me to have suddenly got serious would have been such a change of track to give more importance to my few casual words than they deserved.

So I said nothing and worried again all the way home.

Sam phoned last night ... he's been phoning quite often recently. But in the call he mentioned something that implied drug taking on the ward.

He has been less well for the last few weeks. In that time he has mentioned things that might have implied drug taking a few times. On one occasion he was quite open about it ... but we weren't sure whether that was because drug taking had caused psychosis or that his psychosis made him believe he was taking drugs. It genuinely is a problem.

But he has deteriorated ... and at the last planning meeting the ward manager said there has been cannabis on the ward.

On Sunday Sam phoned again and mentioned drugs. I tried to ask him about it in a sensitive way ... he impressed on me that he wasn't ill ... I tried to explain that if ward staff saw behaviour related to drugs they would interpret it as him being poorly. I tried to keep it all very low key.

But he soon got angry. After a while he started to bang the phone on the wall again.

The call ended with me listening to the sound of the phone scratching against the wall as it swung from side to side.

I decided to call the ward and try to report my worries to a member of staff. I didn't want to complain ... just let them know my concerns in case they weren't aware of such possibilities at the moment or could possibly reassure me. I was answered by a member of staff who I had never spoken to before, perhaps "bank staff" - on call for the evening.

Her English was not good and she did not seem clear about what I was tyring to say. It was "busy" on the ward and the nurse in charge could not come to the phone. That's fine I answered but if she could just make a note of what I had said and then I would call in the morning. Just a moment she answered, she would see if the nurse in charge could come to the phone. But of course she couldn't ... so we went through a rigmarole again of what she should write down and for whom.

I just hope my message hasn't got garbled into a major complaint by the morning.

Nell was coming home for the weekend on Friday. So Sam phoned every half hour to ask if she was back yet and could he speak with her. Of course she missed a train and had to go straight on to a meeting ... so Sam got quite agitated about her not being there.

I was worried about how Saturday might go. We hoped Sam might be allowed home ... it was planned but depended on his state of mind and allocation of the minibus! I was worried that if he was cross about not being able to speak to Nell and if this exhibited itself in negative behaviour then the Saturday visit might not happen. It seemed quite tentative as it was.

Anyway, in the end Saturday morning went fine. Sam came home, was well and seemed to get on with Nell. We went for a walk and drank tea and listened to music and sat outside smoking cigarettes and even had a quick game of chess. Nell even accused me of sexism for not having encouraged her into chess as I had Sam! I'm sure it was because she was less interested but ... !

So it all went fine!

Sam has phoned a few times recently. Each time he has seemed very "elated". That's code word for "bonkers"! It has been difficult to have a sensible conversation or for him to even be able to answer a question. What has worried me though is that in recent weeks nobody seems to have noticed. Everyone keeps saying how "well" Sam is doing. How they are keen for him to move on. We are keen too ... but little seems to be happening.

I usually sleep soundly but lay awake one night this week creating arguments in my head with his psychiatrist and the ward manager.

Sam phoned a couple of times today in the same manner. Then we tried phoning the ward to have another go at getting him some leave this weekend. But guess what?

They have noticed too that he is "elated" at the moment. They are surprised as he is taking his medication! Jane explained to them that he has been taking his medication for the last eight years for the most part but after going onto new medication he soon gets poorly again. They don't seem to have any comprehension of this. Do they think that on previous wards he was allowed not to take his medication?

So it was agreed he may be able to come home on Saturday morning from 10.00 to 12.00 depending on how he "presents". At that time in the morning he will be fast asleep so I'm not sure how they will gauge it. Either they'll say he is fine or they will say they could not wake him.

We'll see ... !

Sam was due home with a member of staff at about twenty past eleven. We had wondered whether we should have phoned earlier to confirm the arrangements but hadn't done so. When it got to twenty to twelve and Sam had not appeared we decided to phone the ward.

There had been difficulty getting Sam up but he was outside now smoking a cigarette. Unfortunately though now there were some problems on the ward which was very "lively". So it was not possible to bring Sam immediately. They would phone if and when they set off.

At one o'clock we realised they were not coming and phoned again to see if we could visit Sam instead. That was fine. We could come at four or six but when we asked if we could go for a short walk with Sam it was suggested six would be better.

Then several phone calls from staff and Sam. He was out of tobacco. I had a discussion with Sam about whether he would rather we came at four and he would get his tobacco sooner or if he would like us to come at six when he could go for a walk. Initially he plumped for four and the tobacco but then decided he could wait until six as he would enjoy the walk.

That is progress I suppose - but I just hope that we do manage to go for a walk or Sam will not be happy about being kept longer.

It took not quite a rant but some careful persuasion by Jane to arrange a visit for Sam on Saturday. They seem to have put themselves out to do it ... but without our persuasion othing seems to happen. We have had three meetings recently agreeing the importance of Sam getting out but does it happen ... ?

Regular readers will not need the answer!

Sam was chatting on the phone the other day saying he had been to the "Visitor's Centre" in the main hospital. There he said he had been chatting with drug dealers and prostitutes. It may have been his psychosis ... or it may even have beeen true! We have known both there.

Jane had a rant on Saturday.

She had understood, having talked to a member of staff on Thursday, that they were going to try to arrange for Sam to come out with us for an extended visit - escorted by a member of staff. We should ring on Saturday morning to finalise details.

Of course on Saturday morning they knew nothing about it and in any case were severely under-staffed. So Jane blew her top ever so gently.

It was certainly effective as several phone conversations later it was agreed that Sam could come home for three hours with a member of staff. We didn't even have to pick them up ... they would come in a hospital vehicle.

So it happened. A lovely afternoon with a walk and even a small climb by Sam despite the fears of the nursing assistant accompanying him. But there was little danger of Sam heaving his now huge frame high enough on the rocks to be able to damage himself if he were to fall. Though I was surprised at how high he did manage to get.

He was exhausted though - and was too by the short walk we did.

He phoned today and said he was now eighteen stone (about 250 pounds). It was alright though as he assured me he had been dancing all day and in any case it was all muscle. He said he had a "six-pack".

"A two hundred-pack," I joked.

He said he cold run faster than the new sprint record holder Usain Bolt.

And they think he is well ...

I had a bit of a rant over dinner.

We've been to so many meetings recently where it has been agreed how important it is for Sam to get out and have long walks in the countryside. Jane had been to a meeting again this week where she impressed that on them and reminded them of their agreement to it. I didn't go to the meeting because I knew I would just get angry.

It was agreed that ward staff would take Sam today to a meditation session and support meeting that he enjoys. Jane rang yesterday to confirm that would happen and to arrange for Sam to have some extended accompanied leave with us tomorrow. It was all agreed.

Then this afternoon Jane rang to find Sam had been in his pyjamas all day and that tomorrow's outing with us had not been arranged.

Over dinner I was slightly ballistic which Jane had to take though it wasn't her fault. I wanted to challenge the ward into accepting their responsibilities.

I eventually calmed. Then Sam called.

Another 'Sam' has been admitted to the ward - Sam gets on with him. He said that he had gone out this afternoon with someone from his home team - a long outing for a walk near a reservoir. Perhaps it was the new 'Sam' who had been in his pyjamas all day!

Though we still don't know what, if anything, we are doing tomorrow.

We booked in to visit Sam last week before going away for a few days.

I had been feeling down. I was tired emotionally and physically. One tends to cause the other so I felt on a downward spiral. I wanted to see Sam but part of me didn't. I didn't want to see him unwell. I have been so upset recently that everyone seems to think he is doing well and making progress ... and then I look at him and see so many psychotic symptoms. It is as if we are talking of someone different.

It was nice to see Sam again and chat with him even though my distress at seeing him continue to be unwell. We were able to go for a walk and at least we were able to introduce yet another surprised member of staff to the field with the wonderful views just round the back of the hospital. For some reason they prefer just to walk around the hospital "grounds" which consists of a couple of patches of grass and several car parks.