'schizophrenia'

- a carer's journal

Sam was quiet when we visited him yesterday and today. Each time he had just woken up. He seems to be sleeping a lot. Perhaps he has a lot to catch up on.

When we have phoned up and visited, staff have always been very friendly. It seems there is even a carers' pack of information - but it would have been even better if someone had thought to give it to us last week!

We were about to leave when a nursing assistant asked us if Sam had any toiletries. Well clearly he hadn't - so why hadn't they transferred with him from the previous hospital? And few clothes it seemed too. He suggested we come to Sam's room to look. Sam seemed to have nothing. Virtually no clothes. No wonder he had been asking for clothes for Christmas when we had asked about presents.

Then a nurse came along and insisted we move - we weren't allowed on that part of the ward - but it had been a member of staff who had invited us - suddenly we felt as if we were being put in the wrong again - and now we were complaining - where were Sam's clothes - were we again going to be labelled?

Before we knew it we were in a room with two nurses and Sam discussing where his clothes had all gone and the fact he wasn't capable of looking after them himself. This was not good for Sam who started to find it difficult - and it was I who tried to calm him. As it is a new ward so they have to observe him for six weeks to discover he is incapable of looking after himself properly ... in the meantime he doesn't have a toothbrush. Are they incapable of passing on records? He has a filing cabinet full - perhaps that is the problem. But surely there should be some transfer record system for all this kind of information. Do they trust each others judgements so poorly?

So we had to go to a local shop and buy some shower gel and toothpaste and a toothbrush for Sam. Tomorrow I will go back with some underpants, tee-shirts, sweatshirts and a fleece. No wonder he claims he is living on the streets.

Jane phoned the ward today. She spoke for a long time with a nurse. That nurse had been on the ward that Sam was been admitted to when he was sectioned all those years ago. Jane remembered him then as being a kind person. He remembered Sam from then also. It helped Jane to chat with him and to be able to reflect with him that so far on this new ward all the contact we have had with staff has been positive.

I phoned today to see how Sam was. Our phone had rung last night and there was nobody there - I wondered if it might have been Sam trying to call us from the ward.

I found myself talking to the ward manager. She was really friendly. It is clearly early days yet - but she did tell me that there had been an incident last night and Sam had assaulted a member of staff. But she didn't tell me in an accusatory kind of was as had happened on the last ward. There was no edge in her voice. It was clearly of concern and she wanted to tell me of it - often we never knew on the last ward unless we asked specifically.

It seems Sam had had a bath in the evening and later he wanted to go for a bath again. It was clearly a difficult time and a nurse tried to reason with Sam about it. Sam hit him.

There is clearly no excuse for this - and I make none. I am upset that Sam's start has been marked, as we feared, by more violence.

I tried to explain that until recently Sam had been a very peaceable young man but his frustration with being locked up has turned to anger. His reasoning powers to recognise that this is doing harm to everyone seem no longer to be there. Sam is often more agitated on an evening, he finds baths relaxing - so he was possibly trying to find a quiet place to chill out and cope with the racing thoughts in his head - when a nurse tried to stop him ... - I tried to explain some of this and she seemed eager to listen and to try to understand.

I asked if Sam had been restrained. She sounded shocked. No - of course not - patients were only restrained if they were a danger to themselves or other people. On the previous ward Sam was restrained and rapidly tranquilised regularly - in a way that had seemed to me to be more of a punishment than an appropriate response.

Sam will have been cross that wasn't allowed a bath when he wanted one - but I hope he might have enough understanding to realise he wasn't dealt with in an authoritarian way. I do hope this might still give the possibility of starting again on an upward spiral despite all that has happened recently.

We phoned this evening to see if Sam had arrived at the forensic ward and had settled.

A friendly nurse answered - Sam had arrived a short time before and seemed calm. But he was out of tobacco - as his previous ward wouldn't let us visit yesterday. So could we bring some in?

Yes - and could we see Sam?

Of course - no problem. I was surprised as we have never recently been allowed to see Sam on his first day on a new ward.

We arrived and had to wait in reception for a while - but at least there was a reception and somewhere to sit inside.

Then a nurse collected us - friendly and cheerful. We had to leave coats and bags and pocket contents in a locker but then were shown through to the ward. I was surprised. I was expecting to be shown through to the visitors room just off the reception. But we were shown right onto the ward, passing other patients and into a side room. In both the PICUs Sam has been detained in we have never been allowed on the ward. I assumed partly it was safety and insurance issues - in case a patient might assault us. But here - on a forensic ward where I would have imagined rules to be stricter- no problem. It was just natural and open. The nurse had met Sam before as a student working with the Assertive Outreach team and started chatting with us about it.

Sam was holding it together - big hugs for us both - he was trying very hard. It must be so difficult for him but he was coping.

We met two more members of staff who were also both friendly and welcoming.

It is as if they have nothing to hide here. They are open and accepting.

That must be a good start.

I was supposed to be visiting Sam this afternoon. I had promised him yesterday.

Then we got a phone call from the ward this morning. Sam had been good yesterday - but after our visit, which they agreed had gone very well, Sam had been unsettled about his move. Also they had a new admission planned of someone who was very manic. In terms of their management of the ward it would be better if we didn't visit Sam ...

But I had promised ... did he have enough tobacco ... when was he leaving tomorrow ... ?

We agreed not to visit.

Sam phoned early in the evening. Jane couldn't hear him properly. The phone was still dodgy.

She phoned the ward and asked to be put through to Sam on another phone. She could talk now. Sam told her of the new patient. Sam was clearly scared of him - and with his move coming tomorrow that he was already scared of ...

He started to blame Jane again. Jane tried to explain ... then he started beating the phone against the wall once more.

Another broken phone.

Another broken patient.

Sam rang today but the line was very crackly and then cut off each time as Jane was trying to talk to him. It couldn't be that the phone is damaged from Sam's constant banging of it on the wall could it?

So we decided to both visit him this afternoon as we were worried that he might think that Jane had been cutting him off deliberately. He said he hadn't slept the night before so could be quite hyper. Also when we visited last week he had been very aggressive at times.

So it was a pleasure to find him actually waiting in the visitors room when we arrived to see him. He was quiet and gentle and loving throughout the meeting. It was a pleasure to be with him even if most of the conversation was about his miracles, him being on the television, the fact he had controlled the result of a football match and so on. Once upon a time we would have en horrified by his state of mind. Today we were just pleased that he was calm and still felt close to us.

He talked again of how staff were unkind to him there. I just hope that on his new ward that staff will be kind to him. Is that too much to ask?

I had a meeting with the consultant psychiatrist from the forensic ward today. He was very friendly. Very smart with his fine wool pinstripe suit, Pringle socks and silk tie. But very friendly.

Why do they have to dress like that? Who are they trying to impress and why? Or is it just to set them apart from the rest of the people working or being treated in the hospital as nobody else can afford to dress like that?

It has been decided that Sam will transfer to the forensic ward at his hospital - the first hospital Sam was admitted to. He will go there on Monday. The ward managers were discussing the arrangements as we spoke.

He and his ward have a good reputation but ...

It still just seems part of the downward spiral. Sam has committed no crime but is being transferred to a forensic ward because everyone else has given up hope. Except us.

Sam hates the current ward as he perceives that the nursing staff act like warders rather than like nurses. But on the ward he is moving to I am worried that there may be a similar attitude from staff on a forensic ward. Sam also hates change - and is frightened by other patients. He may find other patients on the ward difficult - act out of character - be perceived as antagonistic by staff ... and we are further along this downward spiral.

So we are trying to be positive about this move. However, it does represent and highlight quite starkly the failure of the system to support him so far.

...................

I was talking to my mum this evening and she thought that Sam's escape last weekend at least showed they still hadn't broken his spirit. Jane's still hasn't been broken but I have to admit I feel very tired by it all at times and have to psych myself up to keep going. But in the end my love for Sam is still there despite how he sometimes behaves towards me and Jane. I know underneath it all that he still loves us both too however antagonistic he might seem at times.

Sam rang again today. He didn't seem too well and didn't have much to say. Then he started on again about how we had locked him up. So I started to argue once more that we hadn't and I suggested we change the subject.

Then he started banging the phone against the wall again.

There were two meetings on Monday.

The forensic consultant psychiatrist was meeting with his team to decide whether or not Sam was appropriate for their ward. We had heard on Sunday that members of his team had also visited Sam last week. We did not hear the outcome from the meeting or any decisions - but we did receive a phone call from the consultant's secretary. Could we come to a team meeting on Friday? Jane can't but I can. It is nice to be asked - but it would be good to know the context. Yet again we are put at a disadvantage.

The other meeting was the ward round where they were discussing whether or not the family meetings were going to continue. On Sunday I left some notes with a nurse to inform the ward round meeting of our views about this. I had no idea whether my notes had got passed on. We heard nothing from the meeting on Monday. Given I had taken the time to write some notes to inform the meeting surely someone would have thought it appropriate to inform us of the outcome? But no.

So the next morning Jane rang the ward. They had just had a call from Sam's care coordinator and the room had been booked. So the meeting was going ahead. No feedback as to why or any response to my notes or my conversation with a member of the nursing staff about it. Often it is as if we do not exist.

Jane and I visited Sam in the middle of Sunday afternoon. He had just woken up after his adventured the night before and looked a complete wreck. His ankles were still filthy with mud - so the shower when he got home in the early hours must have had little effect.

He was angry and depressed. He talked of suicide. He didn't want to be there. He wanted to be home. Why couldn't he come home? Then he was just angry with us.

He kept asking why had I sworn at him. Why did I call him a "bastard". I have never sworn at him. Sometimes Sam hears this in his head. This has been going on for a long time. Sam asked for a pen and paper to write. Sometimes this helps him focus. He got a pen and a post-it note from the nurse at the desk outside the interview room.

He started writing manically for us then stopped, screwed the paper up and threw it at the nurse as she asked for the return of her pen.

Shortly afterwards Sam apologised which is unusual. Then he asked for a hug. But immediately afterwards he started accusing me of swearing at him again.

Eventually the meeting ended difficultly as Sam wanted to stay in the visitors' room to sleep on the sofa. We thought we had done well to engage him and finish the meeting positively.

When we were then about to go we were asked to stay as the nurse in charge wanted to speak with us. They had read the note Sam had screwed up and thrown at the nurse. I couldn't believe it. I was being accused of swearing at Sam. They had documentary evidence as he had written it on the piece of paper ...

This was the nurse who I had argued with the day before.

"Don't mess with us."

They will now have written this down in the notes. If ever in the future I was to accuse a member of staff of speaking or behaving inappropriately to Tom they have something to come back at me with.

As I said ...

"Don't mess with us."

................

Earlier Nell had phoned. She fell the night before and hurt her elbow and wrist. She had been to A&E and they could find no break but she is in excruciating pain. They wouldn't even give her painkillers until she started to cry. She returned the following day and they gave her more painkillers and a different sling.

She has just started a new and exciting but very stressful job. She was wary of doing it two-handed ... I have such confidence in her though that she can do it one-handed!

I was upset in the morning though. We do so much for Sam and we need to be there for Nell with just the same intensity when she needs us.

I've written the story of what happened on Saturday here ...

Saturday 10.00 pm

We had a call from the ward at about ten to seven. Sam had gone over the fence ten minutes earlier. They'd looked in the grounds and he was nowhere to be seen. Remember, it takes them five minutes to get out of the building as nobody can ever find the key to the gate in the fence and there are innumerable locked doors to get through to get out the main way.

The police phoned a little later. Did Sam have access to a car? No - ok they'd look at the bus station. Did he have a bus pass? They seemed to have no idea. An hour or so later though another policeman phoned who had more sense and they had already got a helicopter out. By then of course he could be anywhere.

After three hours if he hasn't been found then he is rarely found quickly. In the past after about three days the effects of his medication wear off and he begins to behave bizarrely. However now he is on a depot injection the effects of his medication will last much longer. Having said that - the medication doesn't seem to be having much effect at the moment so I hope people will recognise how ill and vulnerable he is.

As always in these cases we start to wonder whether we will ever see him again.

Sunday 9.00 pm

We received a phone call at 2.30 in the morning. It was from a taxi office in a small town nearly ten miles from Sam's hospital. Sam was there - trying to get them to bring him home to us. In the background was the sound of drunken people trying to bargain for a lift home with no money. We were lucky they had recognised that Sam was unwell and vulnerable. Jane exchanged a few words with the Pakistani receptionist in Urdu and then asked him to look after Sam and give him a cup of tea. The few words of Urdu helped.

Then Jane phoned the police. But Sam was in another district! This was a problem. They couldn't go there to fetch him ...

In the end of course it was sorted - though when we phoned the ward it was as if we were waking up the member of staff on duty who seemed to have no interest in the situation at all.

Eventually Sam got back to the ward soon after 3.30. The ward did phone us and the nurse seemed a little more animated now and involved. Sam was very cold so he was having a warm shower then they were going to give him a cup of tea.

At last we tried to go to sleep hoping all would be well until the morning.

And then ...

soon after 6.30 I got a call from the ward.

Sam had climbed over the fence again. He is only allowed out with two members of staff and the fence is fine wire mesh too close together to get a finger grip - but Sam is a climber.

I won't keep you in suspense - he is safe back in hospital now. Though "safe" is a relative term.

I'll write about it tomorrow.

I visited Sam yesterday and while I was there he was spoken to very curtly by a nurse who Sam doesn't like - he says he is a security guard and to be honest he does look and behave a bit like one. After he had spoken curtly to Sam - who was only asking to go out for a cigarette - Sam came back into the room very cowed and started to talk of sad things.

On the way out this nurse showed me out. He asked how I was. "So, so." I said.

"I understand how you feel," he replied.

"No I don't think you have any idea how I feel. I don't believe anyone does."

And then it all came out. I told him exactly what I thought of him, the staff on this ward, Sam's deterioration, the inappropriateness of the treatment, the way Sam was being regularly pinned down, the effects the medication was having on his speech, the fact it clearly didn't work, the lack of space outside ...

I was emotional but I think I managed to do it in a way that wasn't just ranting. I tried to be reasonable and to help him understand what I was saying and why. In the end there were some bits he agreed with - and he didn't pin me down!

We heard yesterday that the ward want to stop the family therapy work we are doing with Sam and his psychologist and another member of the team. It is the one thing that holds out some hope ... so they want to stop it.

Perhaps they are blaming that for Sam's deterioration in behaviour despite the fact that we've only had two since he was admitted to that ward and that both have been very successful. After all Sam's deterioration can't be anything to do with their care of Sam since he got there can it???

We met with Dr Brown yesterday - the consultant from the forensic unit. We have heard good reports of him and the unit. But it is a forensic unit ...

He was very personable and welcoming and seemed genuinely pleased to meet with us. But it was we who had had to set up the meeting.

He was good at listening, genuinely seemed to take on board what we said and made lots of notes.

We are concerned that he genuinely decide if they are right for Sam at this moment rather than whether Sam is right for them. He seemed to take that point. He clearly had no definite view yet as to what they might do that was different from what Sam has previously had - in which case what is the point other than containment - and they seem no more secure than other places Sam has been. The trouble is, this kind of feels like the end of the line if they accept him. If they cannot have an impact - then where next?

Sam rang yesterday. I asked him as we chatted if he'd had any visitors during the week and he answered, "no." But then later in the conversation he mentioned that Dr Brown had seen him that morning. Dr Brown is the psychiatrist from the forensic ward who is going to assess him. Sam rarely remembers the name of anyone on the ward let alone a visiting doctor. Also he rarely talks to doctors - he is very suspicious of them. I asked if Dr Brown had asked Sam any questions. Sam said no - but that they'd had a nice chat. So Dr Brown seems to have a way with him!

We have asked to meet with him so we will see.

I asked Sam if the doctor had mentioned a move and Sam said he had. I asked what he thought of the possibility. He said it was all right ...

"... as long as there's a bit of freedom and I can have a cigarette occasionally."

Sam doesn't really ask for much.

I visited Sam on Saturday. He was quiet and thoughtful and prepared to listen. I talked of what had happened and how it would affect his leave and moving forward. I talked of how we and his solicitor had worked at the tribunal to get him leave again. I talked of the possibilities for the future. Sam listened. He seemed to understand. Then he said, "Shall we go now? I feel I am free to leave." It was as if he hadn't taken in a word I'd said.

He seemed gentle and calm. Just upset still at being detained.

"I hate it when they tell me what to do."

He must take after his dad.

The next day Jane phoned the ward to confirm a planned visit. It was almost in passing that the nurse mentioned a serious incident the night before - after I had seen Sam.

He had thrown a cup of hot cocoa over a nurse that night. As I said he hates being told what to do. He couldn't sleep and was told to go to his room or to the lounge. He was told very politely I am sure. But he was "told". It is a hospital not a jail. The nurse had to call for medical attention and Tom was pinned down and tranquilised again so it is not good - especially when they are thinking of transferring him to a forensic ward.

Sam refused to write a card Jane had taken him to apologise to the nurse. He was adamant that he didn't want a nice card going to the nurse who had held him down with a knee in his back as he was tranquilised.

Sam was wrong in what he did of course. But more sensitive nurse could have got Sam to move without a confrontation and should not have responded in the way he did.

Everything just seems to be escalating out of control.

Sam had a Mental Health Act Tribunal this morning. We are entitled to attend with Sam's permission but of course we received no invitation. It was clear to Sam's legal representative that Sam was not going to be released and he manged to get Sam to accede to that and instead asked for recommendations about long term planning and leave. We agreed with that.

Leave was recommended and accepted. Sam wanted to go out straight away - so we did.

We went for lunch and then for a walk along the canal. There was some autumnal sunshine and beautiful colour in the leaves of the trees.

Sam was kind of holding it together but seemed a bit distracted. Then without warning he jumped into the canal. He went right under the water and the fraction of a second before he emerged again seemed like an eternity. He climbed out with a grin on his face. It was just for fun. He was like a naughty schoolboy stamping in the puddles - but the scale of the lack of rationality behind it was different.

We turned to walk back to the car as quickly as possible before Sam got too cold. Then Sam pushed me and I found myself in the canal. Fortunately it was not as deep there and I went in just up to my waist.

We managed to get safely back into the car. Jen had told the ward by phone so they knew what to expect on our return.

We had to emphasise that there was no malice in what Sam had done. He was not angry or attacking us. Part of it was just that he needed to shock himself into some sort of sensation of reality. Then it became inappropriate silliness rather than an attack. We knew how easily it could be misunderstood. And of course it would not be written up by us.

Sam rang yesterday.

"I'm worried about my brain. It's not working any more. There's a black spot in it."

They have just increased his medication. That couldn't have anything to do with this could it?

I had a phone call from Sam's care coordinator yesterday and then today from his named nurse. They both wanted to tell me about a professional's meeting on Monday. Of course we hadn't been consulted about our views.

Having two different reports of it has given an interesting insight.

But ...

They have put up Sam's medication again. This always happens. When he moves to somewhere new they change his medication as they assume the previous medication wasn't working. When the change doesn't work they increase the dose. When that doesn't work they scratch their heads, blame Sam and then pass him on to the next place where ...

You get the picture. Few though seem to understand why we are frustrated and cross and why Sam is frustrated and cross.

Also now they are having a doctor from the forensic service assess Sam. This team have had some successes - but it is not an appropriate unit for Sam. He is not a criminal. Being locked up with the criminally mentally ill will put additional stresses on him that will make his symptoms worse.

But what do we know? We are just his parents. And why should anyone think to include us in these discussions? Then they wonder why we get upset and cross.

When we visited Sam on Saturday we were surprised at the security they put in place for us. On Tuesday - the first time we had seen Sam after he had attacked his mother - a nurse had just left Sam with us in an unsupervised room.

On Saturday though we were in the secure visitors' room and the furniture was moved to make sure that everyone could be seen by the security cameras. We were asked if we wanted a member of staff in with us.

On Sunday I visited with my sister. Again the furniture was carefully placed and we were reminded several times of the alarm strip around the room.

On each day Sam was calm and kind and loving.

On Saturday he was talking again of how he wanted to be out of hospital. He sounded so sad and despairing when he asked plaintively,

"Am I going to be locked up forever?"

On Sunday it was too much for my sister. She had been appalled at the security fencing we'd had to go through and the negative attitudes of the staff towards Sam. She just burst into tears before the end of our time with him. She too could not bear to see such a kind and lovely young man locked away.

"It's my thinking that's the problem," said Sam today. "My heart is still caring."