'schizophrenia'

- a carer's journal

I was tired when I awoke.

I usually am but my limbs ached and getting up felt a real task.

I realised I was anxious though I knew not about what. Well I did. It was the CPA meeting - a planning meeting with all the professionals at the hospital today. I wasn't specifically anxious about it but I'm sure the low feelings I had were related to it.

My legs didn't seem to want to work and I found it difficult to hold a coherent conversation.

We visited a friend in the morning who lives in a first floor flat. The climb up the stairs seemed impossible.

Of course we talked about Sam and ...

When we speak about what goes on people are shocked. Shocked at the attitudes of staff and the incompetence of our health service - and of course upset at what was happening to Sam.

Talking of it distressed me again. Perhaps not an ideal preparation for the meeting in the afternoon.

I really didn't want to go. If Jane had suggested I stay behind I would have been flooded by feelings of relief. But of course I went and could feel the muscles at the top of my back and my shoulders beginning to tense and cause pain.

We had decided to try to say little. Jane had talked with Sam's care co-ordinator the day before. He was concerned about Sam following recent visits from himself and another member of his team. They were going to insist on joint planning, their own consultant psychiatrist was going to attend, they were going to express concern at Sam's depression, they were going to push for an early move back to the rehab ward.

So he could say it all for us.

But of course he didn't.

Jane had persuaded an advocate who had worked with Sam over a year ago and who knows his history to come too. It was so nice to see her again. So reassuring and kind. Perhaps she would say it all for us.

But of course she didn't.

So it was down to us yet again ...

The care co-ordinator joined us in the waiting room. His team's consultant psychiatrist sent his apologies - his wife had been taken ill.

There was only an attendance from the rehab ward because Sam's care co-ordinator had pushed for it - at Jane's recommendation.

We were very good - for us!

I coped better than I thought. Once the meeting started I got into gear. I'd decided I would say nothing which was a good idea as it meant I only said a reasonable amount rather than taking it all over!

Sam coped well. It's hard. A room full of people talking about him and disecting and criticising his behaviour, making value judgments about the most intimate of things.

Jane had to prompt Sam's care co-ordinator and the advocate to make their planned contributions which they did in a somewhat more deferential manner than we are prepared to use nowadays. We remained polite though. We hope that plans will be in place but we had no copies of the reports. Well I think there was just one written report. I doubt we will get copies of the minutes. But they are all just pieces of paper. It is what happens on the ground that is important.

They do know we are keeping an eye on that - but it shouldn't be up to us.

Following the meeting with the manager he arranged another meeting for us to see the consultant psychiatrist.

Unfortunately jane couldn't go so I attended on my own.

I was really feeling very shakey before and after it but felt I'd aquitten myself reasonably.

He just sat there and nodded sagely and was pretty uncommunicative whilst trying to give off the air of a reaonable and caring man.

It didn't quite come off but I didn't challenge him too hard. Perhaps I let him off a bit.

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Wrote that a while ago ...

unfinished I think.

So much is nowadays.

Tomorrow we have a CPA meeting - a planning meeting about Sam's future. We think at least that a few more people are treating it seriously and making an effort because of our efforts.

Whether that helps Sam get better in any way though I don't know.

The day finally came to see the hospital manager. The ward manager was there too.

it wasn't just an opportunity to moan on about Sam's clothes. We talked about the act that we were not complaining about specific incidents but about the hospital's overall lack of respect for carers, poor communications, putting barriers to our involvement - such as the psychiatrist only giving Jane ten minutes and barring her from attending any ward round meetings and so on.

Despite this we eventually get a letter in response that only addresses a few specifics and not our overall issues. So we've put our response in writing.

All we're really after is a statment saying they have a commitment to involving families and some action in staff training and organisational structures to show they mean it. Not so hard really, is it?

The next afternoon Jane was taking Sam out. She asked to go onto the ward to help sort out the problems with Sam's missing clothes. She was not allowed. That would not be possible - but with no explanation why. The following day after several phone calls Jane managed to get an appointment arranged to see the hospital's clinical manager.

It was a few weeks ago now - one Sunday.

I'd phoned to say I was picking Sam up for the day. Jane was away for the weekend. That's why I had decided not to have Sam overnight - just in case it turned in to an all night job - which it often can do - and I was too tired to cope on my own.

So I rang in the morning to remind them I was picking Sam up at 11.30.

I arrived a bit after that - only five minutes or so.

The reception area is closed at the weekend - not that we go there anyway. It only slows things down. There is a separate wing where the wards are situated. They have their own intercom for out of hours so we go straight there. Not that they are much quicker for us than for Reception!

So I buzzed through to say I had arrived to pick up Sam. I was answered and yes they'd bring him through. So as usual I waited. Standing outside under minimal cover. I waited about ten minutes beginning to get cold in the sharp wind then the intercom crackled into life. A disembodied female voice apologised for the delay. They were just trying to get Sam into some suitable clothes for coming out then he would be with me.

Jane had made a fuss previously about this. He comes home wearing no underpants and no socks. If we are taking him out to eat and his trousers are falling down - as is often the case as they no longer fit him this can be an embarrasment.

So I waited.

Eventually after another ten minutes or so waiting outside Sam was brought to me. It was his "Named Nurse" who we have seen or spoken to only briefly.

Please could we bring in some more trousers for Sam he asked as these were all he had. Sam was wearing a pair of trousers with a rip across the knee. I asked Sam if he was wearing underpants. He wasn't. He had on a hooded top but was wearing nothing beneath it. So after twenty minutes or so of trying to get Sam presentable after they had been informed I was collecting him anyway he came out wearing trainers, no socks, torn trousers, no underpants and a hooded jacket with nothing beneath it.

If they hadn't made such a point about taking time to get him ready - and then sending him out like this. It seems that all his clothes had disappeared.

Well I just flipped. I hadn't realised the emotion bubbling around inside me. I was so angry. I just went for this unfortunate member of staff with all our complaints about the lack of care for Sam and lack of respect and communications with us.

I had to sit in the car for several minutes to calm down before I could drive back home with Sam to try and find him some more clothes.

Sam had been quiet as we walked the suddenly he started to chat.

"I'm feeling really angry about the system," he said.

"In what way Sam?"

"About being locked up."

"Is it getting you down?"

"Yes I hate being labelled as mad."

Later back home,

"I don't want to go back to that place. It's awful being with all those mad people."

We were returning on our walk this afternoon from the nearby rocks with the sun shining on the glowing birch leaves glowing dramatically against the dark clouds.

"I was serious about committing suicide last week you know," Sam said.

"I wanted to jump but realised I'd probably just break my legs and be in a lot of pain."

He looked at me, grinned and chuckled.

We walked back.

Last Sunday evening Sam had suddenly walked out of the house and set off down the road. I hurried after him in a pair of slippers. He was soon at the edge of the rocks as I stumbled and slipped in the dark on the steep, greasy, muddy path. I called Sam but he was now almost out of sight striding on ahead. I kept calling him but he ignored me. Eventually I saw him walking back towards me. I gave him a hug and we set off back.

"I wanted to go to heaven," he said, "but the rocks weren't high enough.

If we told the hospital about this they would stop his leave.

I've been feeling a lot better today. Thank you to those who have contacted me.

Still tired - but not that totally exhausted unable to do anything pathetic figure of the couple of days before!

I rang to arrange a time to visit Sam.

Apart from anything else he would be running out of tobacco.

I was told by the Ward manager who answered the phone that S from Assertive Outreach was visiting this afternoon but they didn't know what time. Someone would ring me later when they knew so I could fit in around it. Towards the end of the morning I got another phone call from Garry, the Assistant Ward Manager. S was visiting at 3.30 - so I said I'd get there by 1.30 and take sam out for a short walk before then.

So I arrive about 1.40 (I'm always late - don't go on at me!!!) and eventually someone from the ward comes out to me. All the patients are out. They've ben out all morning. The floor is being done so half have gone bowling and the other half ... Sam wasn't due back until 2.00.

So let me get this right ...

There are no patients on the ward and the Ward manager and the Asistant Ward Manager haven't noticed????

I didn't dare ask.

I'll try to update you on our recent complaints soon.

I went to get some tobacco for Sam. By the time I got back Sam had returned from his bowling.

Garry rushed to reassure me and apologise yet again. They are clearly worried after recent complaints - he was just sweetness and light. Sam was tired and so we drove around for a while, stopped for a ciggy and a short walk then back to the ward.

Later that evening Garry rang again. He wanted to apologise once more about what had happened. They must be really frightened of us! He chatted about how well Sam was doing. The he apologised again. Then we discussed potential futures for sam. Then he apologised again ... And so it went on.

But this was the same guy who had been so rude to Jane only a couple of weeks ago.

I do hope he is being as polite to all carers and families now

I'm really tired now and need to go to bed soon - but I wanted to give a brief resume of today given my last night's post.

Here's the short version.

Of course the ward doctor was on holiday and the consultant was working somewhere else today. I had left a message asking for the consultant to call me. Eventually I found a message from his secretary returning his call.

However I had managed to talk with the ward manager in the end. He's pretty straight and promised to check it all out as he'd been away most of last week.

He rang me back and managed to explain the situation in full detail which has given us a believable picture.

We think it is probably the second opinion doctor who has misled us. Yes Clozapine still is a option in theory - but in practice it is not currently being discussed. However it has to be specified separately on the forms in case it might be used. The psychiatrist Jane was talking to yesterday had clearly got the wrong end of the stick and hadn't even read Sam's notes properly.

We're still shaken and disturbed and angry and upset - it's just another case of arrogant ignorant overpaid psychiatrists causing yet more mayhem.

The consultant system is the weakest part of the National Health Service and has been so since it's inception because they were given too much power to get them on board.

It's time someone took them on.

I'm off to bed now tired and aching I'm afraid.

Sleep well.

We've discovered tonight that they are proposing to put Sam's life in danger by prescribing a dangerous medication that he previously had to be taken off because it might have killed him.

We only know this by accident. We don't know if it is an accident or a calculated risk.

Nobody has talked to us - despite a meeting earlier this week with the clinical manager of the hospital.

Am I angry???????

I wrote the post below to explain but may have rambled so you have the headlines above.

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I've got two posts half finished.

I guess I'm not coping so well lately.

Perhaps I'll finish them soon ...

... or not.

I'm sorry.

I don't know why posting has been so hard.

I've been so angry.

You would think it would spur me into writing - but instead ...

it gets too hard.

Then tonight I got so angry again.

Again ...

I'll get round to telling you about the previous anger but tonight ...

Look.

I don't get angry.

I'm a really calm, laid back person. Honest.

But you tell me ...

Sam was staying home overnight on Friday. We'd already had several conversations about the arrangements for this.

Then we get a phone call.

Can Sam be back by three o' clock on Saturday as a second opinion psychiatrist needs to see him? Nobody had told us about this. If Sam hadn't been home we probably wouldn't even have been aware of it - though when this happened the last time at a previous hospital we had been made aware and he phoned us in Venice!

We were obviously keen to be able to talk with him though the ward insisted in putting obstacles in our way.

So Jane took Sam back for three - but the doctor was delayed. Any time between four and six. As it got closer to six ...

... he couldn't make it. So tomorrow between three and six.

So today we took Sam out for lunch with relatives. He found it hard and I took him back early. Then Jane went back to meet the psychiatrist. No - they hadn't heard from him. No idea when he was coming. They would phone Jane.

But of course no answer. So two days running Jane was waiting for a psychiatrist who hadn't the courtesy to let others know what he was doing.

Eventually Jane was sitting in the car waiting in the car park because there is nowhere to wait on site when a large car draws up and a man in a suit with a briefcase gets out. A psychiatrist. Jane phones the ward to let them know he is coming!

Eventually she is let in too and can talk with him about Sam.

It is only at the end of their discussion that he explains why he has been called in.

The hospital want to put Sam back on Clozaril. Nobody has told us this.

Clozaril is regarded as an effective anti-psychotic medication but it had to be withdrawn because a significant percentage of patients who had been prescribed it died. This was regarded by many psychiatrists as a bloody nuisance so they managed to get it reintroduced with safeguards to filter out those who might be vulnerable to being killed by the medication. Stringent checks have been put in place. Blood tests have to be taken each week and sent off before the suppliers will send that weeks medication.

Sam was put on it a couple of years ago. After a month or so he had some serious symptoms.

Sam had an "amber" warning from a blood test - not quite as bad as a "red" result which would have stopped the medication immediately. However soon after he had symptoms of Myocarditis serious enough to make the hospital send him to see a private heart consultant at eight o'clock at night. The consultant was concerned enough about the effects on his heart to insist that he was taken off Clozaril immediately

We only know that they want to put Sam on Clozaril again because the second opinion psychiatrist says that was why he was brought in. Nobody has discussed it with us. We wouldn't even have known a second opinion psychiatrist was being brought in if not by accident ...

The second opinion psychiatrist did not know Sam had previously been on it - despite having supposedly read his notes. We don't know whether his consultant is wanting to try it again or whether he also has not read the notes and is not aware that Sam had to be taken off Clozaril. If nobody talks to you ...

And can you believe we have just had a letter from the clinical manager following a meeting with him that highlighted communications ...

So tomorrow ...

Who do I phone first?

I've found it difficult with Sam recently and over this weekend.

Maybe that's part of why I've found it hard to post.

It just is very very hard maintaining that relationship - which is maybe why so many can't. The hospitals and mental heath staff rely on that. They know you can't go the distance.

Perhaps that will be what will keep me going.

I'm not going to let those bastards walk over me and Jane and Sam and Nell.

They will learn how to do it properly.

Even if they are right ...

... they will learn to treat us all as human beings.

Bastards!!!!

I started a post a couple of weeks ago.

I was angry.

Too angry to finish it I guess.

I've been angry again since.

Perhaps that's a good thing.

I need to find an outlet though I guess so perhaps I should be back here again reflecting my anger to you dear readers! You are so kind to have worried about where I was. Thank you.

So if you get an angry post tomorrow - you have been warned!!!!