'schizophrenia' - a carer's journal

2010-09-29T23:28:00.005+01:00

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.

2010-06-01T18:31:00.002+01:00

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.

2010-04-11T18:40:00.002+01:00

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.

2010-04-02T16:33:00.002+01:00

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.

2010-04-01T16:31:00.000+01:00

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.

2010-03-31T16:28:00.000+01:00

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.

2010-03-02T19:21:00.006Z

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.

2010-03-01T21:16:00.002Z

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.

2010-02-20T18:15:00.006Z

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.

2010-02-19T21:27:00.004Z

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.

2010-02-16T18:56:00.008Z

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.

2010-02-14T18:28:00.002Z

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.

2010-02-13T18:01:00.003Z

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.

2010-02-12T17:58:00.002Z

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.

2010-02-10T01:46:00.000Z

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."

2010-02-08T19:59:00.003Z

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.

2010-02-06T17:58:00.003Z

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.

2010-02-04T18:12:00.006Z

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.

2010-02-01T16:25:00.000Z

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.

2010-01-31T16:56:00.000Z

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.

2010-01-30T17:51:00.003Z

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.

2010-01-25T18:52:00.004Z

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!

2010-01-22T18:41:00.003Z

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?

2010-01-21T21:52:00.002Z

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.

2010-01-20T18:29:00.002Z

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.

2010-01-19T18:31:00.002Z

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.

2010-01-18T21:18:00.002Z

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 ... ?

2010-01-13T20:55:00.002Z

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.

2010-01-12T17:28:00.000Z

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.

2010-01-11T23:16:00.002Z

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.

2010-01-10T17:43:00.003Z

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.

2010-01-09T17:53:00.003Z

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.

2010-01-07T17:48:00.001Z

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.

2010-01-06T18:44:00.001Z

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.

2010-01-04T18:36:00.003Z

It seems that the kind folk over at Mental Nurse have given me a blog award for "Best Carer Blog" of 2009. Thank you to those readers who took the time to recommend my blog.

You can find out all the other winners here.

2010-01-03T18:19:00.002Z

Sam was due home again today for a few hours. Though after how he had been on Thursday it was decided to see how he got on over the next few days beforea final decision was made.

He'd rung us a few times and seemed very changeable - several times smashing the phone against the wall after what had seemed to be a sensible conversation. His named nurse was going to talk with him and explain that it was best for him not to come home. He genuinely didn't want another incident and for Sam's leave to be cancelled.

But he didn't manage to have the conversation with Sam before Sam phoned us. He was looking forward to seeing us ... so Jane said he had better check with the nursing staff. Then he was angry. Didn't we understand how important it was for him to get out? He had been threatened several times that day. He could hold it together as long as he new he would get out for a few hours calm.

Then he started banging the phone against the wall again ...

I agreed to visit. I was a bit concerned about how he might be - but he was fine. Well - giddy and excitable but there was no mention of him not having come home.

2009-12-31T19:08:00.003Z

We'd arranged for Sam to come home today for a few hours a little while ago. Then we got a call this morning ... trying to put it off as there were other staffing problems. However several calls later it was decided Sam could come home. We then got one from Sam to reassure him it was happening. He picks up on all that is going on.

But when I picked him up he was very excitable. We found later he had been like that all day. I wonder if that had been the real reason they had been thinking of putting off his visit. The visit kind of went well though until the end. He seemed agitated. He needed space. He became surly in a way that threatened aggression. As we got to the car he opened the door then slammed it even more open almost breaking it off and causing expensive damage.

Then he walked off down the road.

He had no intention of stopping. He walked on. We were fortunate the nurse with us was a very experienced one who we got on with. We've had similar situations to this with Sam so many times but another nurse might have reacted in a way that could have exacerbated the situation. But his nurse joined Sam on his walk off and I brought up the rear ... staying at a distance at first in case I might make it worse.

Sam insisted on walking to some rocks where he used to climb. He needed to feel the rock and sit calmly there for a while to get his thoughts together ... or to combat the demons in his head as he described it to his nurse.

Eventually we got him back to the car and back to the hospital. He was still excitable but he was back and safe.

Now Jane and I will have a meal together, watch some television, open a bottle of bubbly and wish each other, with thoughts of Nell and Sam, "Happy New Year".

A Happy New Year too to all of you reading this.

2009-12-25T10:03:00.001Z

It has just been confirmed that everything seems set for today. We pick Sam up at one o'clock. The Turkey is in the oven, there is snow on the ground and the sun is shining. Lets hope it is a good day.

Happy Christmas everyone.

2009-12-24T15:19:00.002Z

Sam's named nurse rang yesterday. Changes for tomorrow ... not to worry, Sam is still coming home - but he would not be the nurse coming with him and the timing would need to change. Staff shortages, etc. It is a shame as we get on with him well, as does Sam, and he is very experienced.

Sam phoned a couple of times later on. He was worried about the changes. He believes something will go wrong at the last minute and he won't be coming home on Christmas Day.

2009-12-22T17:46:00.000Z

We had a good visit home with Sam again at the weekend. But he has kept phoning.

About Christmas.

He is coming home - isn't he? He needs reassurance. It is special to him. If they cancel it again this year as happened two years ago he will react very angrily as he will not be able to understand the reason.

2009-12-21T21:35:00.002Z

Sam rang he other morning, very upset.

He had been for a walk with a member of staff to the shop to buy some tobacco. He believed the member of staff had tried to steer or push him onto some waste land by the footpath and thought there was a sexual intent. Sam was clearly sincere in this and upset and worried. He said he had lost his money on the way - he wasn't sure where it had gone but that this made a good excuse to return.

He had talked on the phone to Jane in the morning. Later in the day he spoke to me. He told the same story. I asked him about going on leave climbing as he now does once a week. It had been cancelled. When he got back from the walk to the shop he had been angry and upset and had kicked at the door. It was perhaps more than this but we have not managed to find out from a member of staff exactly what Sam had done. But his leave had been cancelled.

All of what happened on the walk may have been in Sam's imagination. Something innocuous might have triggered something in Sam's mind. Perhaps he has been abused in the past. Or it could have been real. But it shows how difficult such situations must be for staff and patients.

2009-12-10T21:04:00.004Z

A few times recently all leave has been cancelled on the ward. We have been told it is because there has been "an incident" on the ward. There are procedures to be gone though, forms to be filled in, managers to be placated.

It feels though as if a naughty boy in the class has done something wrong so then the whole class is being kept in as a punishment.

Also recently at a meeting Jan asked if we might take Sam for a walk outside the grounds as his recent leave with us inside the grounds (ie around the car parks!) has been going well. We were told that was against the rules.

What rules are we talking about here though we wondered? Whose rules are they? Who has the power to change the rules?

But this is a forensic ward. There are patients here who are potentially dangerous. So we wondered if the regulations might be from the Home Office. But Sam is not on a Home Office section. He is a patient detained under section 3 of the Mental Health Act and should be treated as such.

So we decided to ask ...

That is all. Just ask.

Finding who to ask was the first hard part. Staff were just following regulations. But whose regulations were these? Who could we ask? Nobody seemed to know. Getting in touch with senior managers was a nightmare ... and then they did not seem to know if it was their responsibility.

But then yesterday we got a phone call. A very nice man. It seemed these were local regulations - not imposed from outside. They had been put in place a number of years ago following some serious problems and had not been reviewed since. So they were now reviewing them. He thanked me for bringing it to his attention. He would raise it at the next risk assessment review group meeting - whoever they are. I wonder if they ever think to invite service users or carers to contribute to these meetings? If they did then they might not need us to tell them when the rules were acting against the best interests of patients.

I asked him to let me know the outcome of his review.

I'll keep you posted!

2009-12-08T16:41:00.000Z

Sam phoned yesterday. I was out - taking long walk in the rain.

He said he was fine. He was very apologetic about the previous day. He had been hit earlier in the day by Dan Adams. He had come to believe that he was Dan Adams and so he had to hit me.

So I had been right. It really was the violence on the ward that was creating Sam's violence.

2009-12-07T16:13:00.002Z

I wasn't hurt by Sam yesterday. He just pushed me up against the wall. I hurt myself on a window frame trying to bang on the perspex window to the office next door. Of course nobody noticed so it is good that Sam let me go.

The room we had been sitting in was a bare tiled room with just one settee for two people. There was no other furniture and nothing on the walls. But at least it was closer to people than the cosier room we sometimes use.

When I called out and banged the window Sam let me go and I got out of the door and into the corridor. I explained to a nurse that Sam was being aggressive and I thought I should leave.

He checked I was okay and unlocked the exit door. We were between the two locked doors when I could hear Sam shouting to me. He seemed distressed. I asked if we could go back. I guessed Sam had realised what he had done and wanted to put it right before I left.

As we returned he was standing by the door. "It wasn't me. It was Dan Adams. He was inside me. It wasn't me. I didn't want to hit you."

I told him it was fine, smiled and got him to give me a hug. He still looked worried and disturbed. I told him I would see him again soon, then I left again.

On the way out the nurse asked again if I was all right. Did I want to go to a room to talk it through? He noticed me sucking on a small trickle of blood from the self inflicted wound on my hand and asked if I wanted a dressing. I told him I was fine.

He expressed surprise that I had dealt with it all so calmly, that I hadn't become angry. Did he think I would be still there ten years on with Sam if I was going to get angry with him for being ill?

Then he got it. My anger with the system that had created violence from such a peaceable young man. As Sam said to me in a confidential tone soon after his first admission ... "If someone was poorly with mental health problems you wouldn't put them in somewhere like this."

And of course you wouldn't. It was violence on the ward that was triggering Sam's confusion and distress that had lead to violence. I asked the nurse if he was in psychological or emotional distress whether this would be a good place to be? Of course he had to admit it wasn't. But what else should we do - he asked almost plaintively?

There wasn't time to go into all that and the alternative possibilities. I was tired, drained, distressed and feeling very weak. I wanted to go home.

2009-12-06T20:33:00.004Z

I'm a bit shaken.

I've just got back from the ward. Sam assaulted me there.

I'm not hurt - well only a small scratch and bruise where I swung round to bang on the window to try to alert someone as he pushed me against the wall.

Just worried about the future for Sam again ...

I could write more but there is a film coming on TV now that I want to watch. Perhaps that will do me more good than writing. So more soon ...

2009-11-25T17:41:00.000Z

I'd been worried for a while that I was going to become more ill again. It must be over eight years since I had my breakdown. It was a struggle for a few years but recently I have been fine most of the time as long as I don't over-exert myself physically or emotionally - and one can affect the other.

But I'd had a premonition of sorts. Perhaps it was just me feeling a bit flat about Sam. It's been going on for so long and progress sometimes seems non-existent. We continually seem to have to fight the same battles over and again. One wants to run away from it all sometimes and I can remember feeling like that before I first became ill.

So when last week I had another attack of my fatigue symptoms I feared that I was going to become seriously ill again. I sometimes have a twenty four hour attack which just leaves me a bit tired but on this occasion it was lasting over into the second day. There can be self fulfilling prophesy about this that the worry and depression in the fear that it was going to be bad contributes to the symptoms and makes it worse. But I have managed to keep going. I've had some busy days and managed to cope. A few times I have been totally drained and exhausted but have managed to bounce back. It is why I am not diagnosed with Chronic Fatigue Syndrome - it seems with that to have that you are not allowed to bounce back!

But I have been left tired and with aching limbs and pains in my back and emotionally fragile. So there was no way I could have gone to the ward round with Jane yesterday. I was in tears and anger just going through her recounting of it. If I had been there I might have raged against them. That might have done me some short-term good but would not have done our cause of helping Sam any good.

So I am trying to get back into pacing myself again. I need to feel strong if I am to be there for Sam.

2009-11-24T17:29:00.004Z

We've been talking about Christmas recently ... well despite our determination to start early this year we still haven't got any presents. But this isn't about presents. It's about Sam.

Sam has missed the last two Christmases at home. He had not been able to leave the ward. That is despite the year before last so much effort on our part to make it happen. So as Sam has been coming home recently we thought it might be worth starting some conversations with the ward about this ... and there are other issues. The violence on the ward is making Sam more poorly but he is also enjoying his time off the ward so much and responds well to it.

So Jane went to the ward round meeting today. All the psychiatrist was interested in was the fact there was a low level of Clozapine in his blood. Perhaps Sam was hiding some of his medication. This must be the reason for his current "elation" - which disappears when he has been off the ward for a while. However the doctor couldn't accept an environmental cause for his distress - it must be all down to the medication. Why do these doctors have such a one-track mind?

But Christmas? Yes. We are hopeful. They will be doing the rotas soon and we hope Sam will be home some time around Christmas.

2009-11-20T18:24:00.002Z

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.

2009-11-12T18:17:00.003Z

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.

2009-11-03T16:44:00.000Z

"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.

2009-11-02T16:41:00.000Z

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."

2009-11-01T16:43:00.000Z

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?

2009-10-31T17:34:00.002Z

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.

2009-10-25T17:31:00.004Z

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.

2009-10-24T16:56:00.002+01:00

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.

2009-10-23T17:49:00.003+01:00

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.

2009-10-19T18:51:00.007+01:00

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.

2009-10-18T17:51:00.006+01:00

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.

2009-10-13T18:08:00.000+01:00

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 ... ?

2009-10-12T17:41:00.000+01:00

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.

2009-10-11T17:25:00.000+01:00

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.

2009-10-10T17:30:00.000+01:00

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?

2009-10-09T20:52:00.000+01:00

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.

2009-10-08T17:50:00.000+01:00

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?

2009-10-07T20:38:00.002+01:00

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 ...

2009-10-01T21:34:00.003+01:00

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.

2009-09-30T20:40:00.003+01:00

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.

2009-09-27T21:18:00.003+01:00

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.

2009-09-24T21:09:00.002+01:00

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!

2009-09-23T17:46:00.000+01:00

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!

2009-09-22T20:39:00.003+01:00

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 ...

2009-09-18T17:52:00.002+01:00

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.

2009-09-17T22:03:00.000+01:00

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.

2009-09-16T21:57:00.003+01:00

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.

2009-09-07T13:51:00.000+01:00

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.

2009-09-06T20:42:00.002+01:00

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!

2009-09-02T20:20:00.003+01:00

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 ... !

2009-08-29T15:52:00.000+01:00

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.

2009-08-27T19:54:00.000+01:00

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.

2009-08-25T18:48:00.002+01:00

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 ...

2009-08-21T21:20:00.003+01:00

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.

2009-08-16T15:43:00.003+01:00

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.

2009-08-06T21:49:00.003+01:00

It went fine with Sam today. He rang beforehand to ask what the arrangements were so he was clearly aware and ready for it. He was fine and in good humour when he arrived. We walked to my parents house where my visiting family are staying.

As we were walking down the hill to their house we saw Sam's young cousin outside with his Dad. He waved and started walking to meet Sam. Sam held back. Perhaps he was unsure or nervous in some way. He was restrained at first. But later he suddenly gained his confidence and played with his cousin and chatted with the adults. He even made some sense at times.

He'd clearly had a good time and we had too.

Everyone seems to think it has gone well so lets hope that more outings for Sam can be planned soon.

2009-08-05T22:59:00.003+01:00

We managed to get leave for Sam tomorrow. A lot of people have put themselves out to make it happen. They know it will be good for Sam, they know it will be good for us but ...

... I suppose we all think for different reasons that it could be risky in different ways. I'm sure it will be fine. Of course it will. But I'm a worrier!

Sam's very young cousin who he rarely sees is visiting from an ocean away. He goes home in a couple of days. Everyone in the family wants them to meet again including each other.

So Sam's coming home for a few hours tomorrow.

Watch this space.

2009-08-04T17:46:00.005+01:00

It was a CPA meeting for Sam today. It is a planning meeting that is supposed to take place every six months. Different settings seem to take them with different levels of seriousness. With some everyone has done reports and it is very formal. With others it is just a very informal meeting. This was in between. There were a couple of brief reports but of course none had been circulated to us. So we were trying to skim copies quickly handed to us, depriving someone else of theirs, while the meeting started.

The room was full. Sam took one look and decided he didn't want to be there but just pointed out to everyone his view that he was "not schizophrenic" before he marched out.

I had been anxious all morning. I know the ward think he is making great progress but although he is calm the underlying psychosis still there. What is the point in taking dangerous anti-psychotic medication if it is not dealing with the psychosis? There was lots I wanted to say about this and his weight gain and the lack of leave that was promised at the ward round meeting a few weeks ago. But how to do it without just antagonising everyone?

I had wondered whether I should go at all.

But I did and I sat there and listened to them all say how pleased they were with him. How much progress he had made. So when I was asked for my views I just had to say what I felt. I praised them to the heavens first but then said my bit. They listen ever so politely then totally ignore everything you have said. So by the end I'd said most of what I had wanted to - but of course it had no effect.

I'm not sure in the end if anyone was clear what decisions had been made. A planning meeting from which no plan results. A typical CPA meeting I suppose.

2009-08-01T17:19:00.002+01:00

One of Sam's friends from his college days had planned to visit him today. We'd set it up so that he could go out for a walk with Sam and a member of staff.

He was coming to us for lunch first and was late ... then we got a call. He'd had a minor traffic accident. The radiator was badly damaged. Of course he had no breakdown insurance and it was his works van and he couldn't get through to anyone on the phone. We drove to him to try to help sort it out. In the end he managed to get a breakdown truck to take him home at some expense.

So all Sam got was a flying visit from me later in the afteroon. He didn't seem too down about it though. Lets hope this friend manages to arrange a more successful visit before too long.

2009-07-30T20:34:00.004+01:00

The day after the ward round meeting we had a family meeting with Sam, his psychologist and his care co-ordinator. It was agreed that Nell could join us. She's family too after all.

In fact Sam sometimes has some problems with Nell. Sibling rivalry and all that ... but it is writ large. Sam was the older brother, the popular one, the one destined to succeed. But now the ball is on the other foot. Nell has become the popular successful one while Sam languishes, detained on a psychiatric ward.

We were worried he might become aggressive or at least antagonistic with her. But that didn't happen. He searched for things to praise her for. Most were very off the wall and not necessarily grounded in reality ... but he was trying to celebrate positive aspects and said he loved her.

Everyone seemed to think the meeting had gone well but I continue to be upset that Sam seems very psychotic despite his medication but that staff are pleased with him because he is calm.

2009-07-29T19:05:00.000+01:00

Sam phoned the other night. Nell was here with a friend so he was keen to talk with them but seemed quite mad to them!

Later when I talked with him he explained how the day before he had been crying, thinking about his mum, and needed to walk into town. He was out on leave and he thought they'd had to call the police.

I phoned the ward and it seemed when on ground leave (walking around the car park!) he had insisted on going across the road to some sheltered accommodation with another client who was allowed to do that ... then started to walk into town. He didn't run off and his escort walked with him and called the ward. Two other nurses came to them in a car and Sam agreed to come back with them when they explained that he didn't have leave for that. The staff on this ward are good at not panicking and dealing with issues proportionately. So often that is not the case.

Sam had a ward round meeting with his psychiatrist today.

He gave him a a bunch of daisies he had picked in the courtyard. Then he explained why he had wanted to walk away. So he got his local leave reinstated. He's such a charmer!

2009-07-28T19:00:00.003+01:00

Nell is home fo a few days to see her cousin and her uncle and aunt.

When she came with us to see Sam at the weekend Sam insisted on telling her about how we had deserted him and left him to live on the streets and that the only reason he was on the ward was because he had nowhere else to live. Nell said she knew that wasn't true

... but perhaps Sam need to say that for his own self-image when meeting his sister who has what must seem such a positive and exciting life to him.

2009-07-26T11:20:00.000+01:00

Jane and I went to see Sam for a family meeting with other staff. But there was confusion over the dates. So it was just Jane and I with Sam.

We met in the small meeting room just across from the patient's lounge. The TV was on full blast. There was a lot of loud talk and shouting. It was sometimes hard to hear Sam above the noise. I found the atmosphere stressful and oppressive. If I'd also had a more severe mental illness I wonder what an effect such an atmosphere would have had on me.

From the start Sam was unwell. He was initially quiet, then aggressive and confrontational. Lots of previous delusional beliefs that we thought had been resolved started being raised again. He said he had been told to kill me but wasn't going to do so. He talked of guns and drugs on the ward. He said he as frightened. He talked of his anger about things we had done in the past that were not what had happened that the family meetings had been working on with him. It was as if all that work had come to nought.

We stayed through it though and by the end Sam seemed to have calmed and become more cheerful.

When we left I had to walk around for a while in the quiet fresh air to come down from the stress and pressure of the ward. Yet that is regarded as an appropriate place for mentally ill patients?

2009-07-25T12:07:00.002+01:00

Sam's uncle and family are visiting from a different continent. We see them so rarely. He is excited by the fact he has a young cousin he has rarely met. So I arranged to visit with his uncle. He seemed so excited on the phone the day before.

But when we arrived he was quiet and listless. When he did talk it was of things inside his own head. He hardly recognised his uncle and seemed unaware of his presence despite having seemed so keen to see him.

It was disappointing to see him so withdrawn with 'psychotic' symptoms that had not been there the week before.

2009-07-24T11:57:00.000+01:00

At the ward round meeting I raised the issue of Sam's weight.

I'd wanted to make it the main issue. But of course they would just see us as being negative and not recognising improvements.

There have been improvements for Sam on this medication. I do not dispute that. But mostly they have been to his mood rather than his mental state. He still has lots of symptoms that would be described as psychotic ... but he is no longer angry and disruptive. He is amenable. His behaviour has been seen to improve. So whatever is still going on in his head they see him as better.

But ...

Since he has been on this medication he has gone from twelve to seventeen stone in weight. (About 170 pounds to 240 pounds.) Most of it is in his midriff though he has filled out all over. This is just in a few months. Until we raised it nobody appeared to be aware. They weren't even weighing him. So at least now there is some evidence of his weight gain.

Such huge weight gains are hugely detrimental to health - and this is a hospital! But he is allowed to order take out pizzas, curries and burgers. If they can control his medication then surely they can also control his food.

2009-07-23T11:49:00.001+01:00

Last week before we went away we had attended a "ward round" meeting.

I wanted to discuss Sam's weight and Jane wanted to discuss future leave. In the end everyone was arguing for more leave for Sam - saying how important getting out into the countryside for long stretches was for his recovery. We were astounded that we had to say virtually nothing.

So he was granted four hours leave three times a week for extended visits. His daily leave was increased from one hour accompanied leave to two hours.

That was over a week ago.

There have bee problems on the ward that nobody has explained to us since then. So Sam has had no leave at all until the last two days where he has had a walk around the grounds.

Sam was so surprised and excited to have been given such leave.

He must have been dreadfully disappointed that it has not happened.

Yet again he has been lead to distrust those who detain him. Nobody has thought to explain to him the reasons for the change.

So guess what ...

... yes, he has become more poorly again.

2009-07-22T21:25:00.002+01:00

We'd been away for a few days over the weekend so Jane arranged to pop in to see Sam on Monday evening. She booked in at six - what they regard as a good time.

She arrived and signed in as usual and the receptionist phoned the ward. Soon a nurse came down and collected someone else from reception and with a smile said he would be back soon. Fifteen miutes later another nurse came down to collect the delivery of a take out meal. He also said 'Hi' to Jane mentioning that Sam was listening to music on his bed.

The take out meal delivery man was driving a very large luxury car. Not the typical vehicle for a pizza delivery boy. We've heard stories of drugs being delivered to wards by such means. All of a sudden it felt possible and real.

The clock ticked round and when it got to well after six thirty Jane decided to leave - with a message to the ward to say he could stay no longer.

Sam rang me.

He'd been sitting in the meeting room. They'd told him that Jane had arrived to visit him. But she had not come.

He could not understand this and thought we were lying to him. He got very cross with his mum, assuming it was her fault and that it was she who was mad and making up fantasies. It took a while to persuade him of the truth.

Jane rang the ward to explain that Sam was a bit excitable ... and the nurse apologised profusely for what had happened.

Something has been going off on the ward while we were away but nobody is saying what. Also there are a few new patients and that often unsettles Sam. I think they are also understaffed - perhaps staff illness with the flu outbreak.

But with everything else going on nobody has noticed Sam getting unsettled and more poorl. Because he is quiet and causing no problems he is down the list of priorities.

2009-07-05T17:07:00.000+01:00

When we arrived to see Sam yesterday he seemed a bit cross or frustrated. He looked as if he could easily become irritated or surly. There was little in the way of friendly greeting from him. We had hoped to take him for a short walk with a nurse. He was eager to get out as soon as possible.

Once we did and he'd had a couple of cigarettes he began to relax and become more chatty and friendly.

It must be so difficult being cooped up on the ward for most of the time. There is little to do on there. Anyone couped up in such a place with another dozen or so young men would soon get angry and frustrated. I would send anyone mad. But if you are already mad and mixed with other mad men then ...

Interestingly the nurse accompanying us was saying almost exactly the same thing.

2009-07-04T17:01:00.003+01:00

Sam has spoken on the phone a few times saying how much he enjoyed his birthday and his presents.

One present from a friend was a poster that she knew Sam would like. He has never before in any of his hospital rooms wanted to decorate it or put anything in it to make it nicer or more homely. It is as if he refuses to accept that hospital rooms are in any way his - that he wants no part of it - that he intends to move out as soon as possible. Making it nice would imply he wanted to stay there.

Well he put up the poster on the wall and a picture of his young cousin wishing him "happy birthday". He also displayed his birthday cards around the room.

I hope this acceptance and more positive attitude to the hospital ward is constructive.

2009-06-30T18:39:00.002+01:00

It is so annoying when the media news is all about sun and heatwaves because it is hot in London - whilst elsewhere we are getting showers of rain and murky cloud and mist.

It was raining this morning. That shouldn't matter. Such a small thing. Except that it is Sam's 30th birthday today and we had got him some leave. Most days he is lucky to get a walk round the hospital grounds with a nurse. Today we had managed to arrange for four hours leave accompanied by a nurse to have a picnic at a local beauty spot that Sam likes. Sam's first extended leave for ages ... for a picnic ... on his birthday ... and it was raining!

But the rain stopped - and the sun even made a very brief appearance as we were eating our picnic together. Sam loved it. He liked his presents and just enjoyed being out. I began to panic slightly when he started to talk of how he could jump into the river as we were standing on a bridge - and the wicked gleam in his eye accompanied by a rather worrying grin as he edged closer to the river as we walked back to the car ... !

But he was returned safely back to the ward without his usual reluctance with thanks for a nice day.

Lets hope the success of today leads to more planned leave.

2009-06-29T19:32:00.002+01:00

It was Sam's "Managers' Hearing" on Friday - a kind of appeals tribunal against his detention. Of course it was not found in his favour but he coped with it very well. This time I didn't go - just Jane attended. I think sometimes we can build the tension when we are both there.

On Saturday we managed to arrange to go for a short walk with Sam. It took some organising but was sorted eventually. Sam was fine when we arrived but when we went for the walk he seemed more pensive as if he was having some troubling thoughts. He discussed some of these with us as we walked. I think he had partly been disturbed by a new client on the ward - someone straight from the prison system. But Sam thought he was settling.

By the end of the walk Sam had calmed and seemed settled.

Tomorrow is his birthday. We have managed to get him leave to take him for a picnic at a local beauty spot with a nurse from the ward.

Must dash now to wrap his presents and prepare the picnic!

2009-06-25T19:38:00.002+01:00

He was angry on Wednesday. The day before, at the ward round meeting, the psychiatrist had shown him his care co-ordinator's report for the Mangers' Hearing tomorrow.

A Mangers' Hearing is one of the appeal mechanisms to get out of hospital when detained. It was through one that we - unusually - managed to get Sam out (is it really five years ago now?) to go to France.

Sam was angry because he said his care co-ordinator had lied. He had described again the time when Sam had a serious road accident. It is often used as an example of why Sam is at risk. It was before his first detention in hospital almost ten years ago. Its relevance now seems low - its inclusion just lazy reporting of Sam's current state. Sam may also be right. He probably gt hit by the car because it was a dark night, he was wearing dark clothing and he was drunk. But it gets dragged up again and again because he was seriously injurred. He has done more stupid things and more dangerous ones as a result of his psychosis. If they were emphasised more then Sam might have to reflect rather than turn to anger as a response.

As we talked and explained he calmed and seemed to understand.

We also had to explain that he was unlikely to get out tomorrow - that he needs another strategy - but I think he knows that anyway.

2009-06-17T17:32:00.001+01:00

We had seen Sam last Wednesday for the family meting. To start of with Sam was surly and uncommunicative - but for the second half of the meeting - after he had been out for a cigarette - he was very sociable and much more rational.

So we were surprised and disappointed to find him really surly and antagonistic when we visited him on Saturday. Conversation was difficult. He seemed to be trying to pick arguments with us when he talked at all. Then he told us that he was finding our presence really oppressive. he said he loved us but we were creating a strong feeling of anxiety in his chest that he could not understand or control. We suggested we should leave but he asked us not to.

"No, I'll go for a cigarette and perhaps I'll feel better."

So he went for a cigarette but on his turn things continued as before ... so we left saddened and disappointed. The staff said how well he was doing - because he is calm on the ward ... but his mental state is still very, very confused.