Sunday, November 28, 2004

I'm staying with my sister for a few days which is good. We had a nice day out today.

Phoned Jane who had been to visit Sam.

He wasn't too well but they enjoyed being able to go out. Sam blamed how he was on the medication. He said he had drugs to lift him up and drugs to bring him down and smoking cigarettes sent him floating between.

What was disturbing though was the way Jane was treated by ward staff. They were really rude. When She returned with Sam they wouldn't even let her back onto the ward to go to the office to check if Sam needed any more money. She said she'd check and let her know via the intercom.

Jane had taken in some mince pies and the empty plate was just thrust at her.

I find all this very upsetting. I guess it's because of the complaint but it's so unnecessary.

Friday, November 26, 2004

I was going to visit my sister today for a break but it got delayed for a day.

Probably a good thing.

We've been revising the complaint today to resubmit it. There were things that needed changing and lots missing.

Jane's found it so hard.

Writing it all out has meant reliving it all. She's just been stretched out and drained. Meanwhile I pad about and try to help where I can.

This evening the consultant rang.

He must be worried!

He tried to sweet-talk Jane.

What one thing could he do that would help put things right?

Where do you start?????????????????????????????

Given that he is one of the subjects of the complaint I think it is totally unacceptable that he should be making direct contact. It could be seen as being intimidatory. Given that Jane was totally drained by it all anyway she could have responded inappropriately. However she responded wonderfully. She was totally calm - even though I was chatting loudly the other side of the door to my mum so that Jane could hardly hear!

She listened and refused to engage in arguments. We have requested a change of consultant as part of the complaint is against him so Jane said she would discuss medical issues with the new consultant next week!

Earlier in the day she had talked with an advocate who works on the ward.

She has all the same issues that we were raising. One of her cases is going to judicial review. It made us realise that it wasn't just us.

That really helps. Jane has sent drafts of the complaint to other carers for comments. They have all responded so helpfully and supportively. They all say how much it reflects their own experiences but they never had the courage to go down the formal complaint route.

Meanwhile the system continues to abuse and ignore carers.

It's not good enough.

What we are doing isn't just for Sam or us. In the end that will be too late.

It's for everyone else out there who may soon be clients or carers of clients on that ward.

Thursday, November 25, 2004

So what has been going on over the last couple of weeks ...

... well enough for us to write a formal complaint to the hospital where Sam is.

Nothing dramatic or drastic - but just a straw that broke the camel's back.

You remember Sam received his notice that his detention under section 3 was to be renewed (under section 20 of the Mental Health Act)? Well, Jane received a letter confirming this and saying a Managers' Hearing would be held. This is normal in such cases (and part of the law) to protect patients interests.

Jane phoned again to find out when this might be held - it's also a useful forum for her to share other views - only to be told it had been decided to do it as a paper exercise as a recent hearing had already been held.

This might be seen as reasonable and sensible - except:
Jane wasn't consulted,
Sam's care coordinator wasn't consulted,
Sam's named nurse wasn't consulted and
Sam's solicitor wasn't consulted.

It all comes down to communications really and the general view that as long as they keep within the law they can do what they like - and we're just a hindrance for wanting to be kept informed.

So the letter of complaint came to six pages.

You've probably heard most of it already.

So I won't bore you with it all now!

More tomorrow if I can ......

Wednesday, November 24, 2004

Wednesday's post was just over a fortnight old.

Since then I've written nothing.

Why not?

No, its not that I'm fed up with the journal. Got to keep my public happy!!!!!!

And there's certainly been quite a bit to write about.

I'll try to bring you up to date over the next few days. The pressure's on now as I've nothing left saved up to publish for you!

I've not been feeling too well and the last thing you lot want to hear about is me moaning on about aches and pains and fatigue.

I have been publishing some of my photos on my other blog so that's been good.

I may publish a couple here for you too.

Back soon.


Tuesday, November 23, 2004

Jane and Nell went to see Sam today.

He's not so good.

It's distressing as he had seemed to be making progress.

No reason for a relapse.

Where do we go next????

Sunday, November 21, 2004

In a couple of phone calls from Sam over the last few days he seemed really well.

But when I visited him today he was still clearly having some strange ideas and beliefs.

I suppose there are bound to be ups and downs - but he has been so rational recently, I was saddened to hear some of the things he eventually confided in me. I wonder if he has confided such things to the ward staff?

They think he's doing fine.

Friday, November 19, 2004

We've both been a little upset tonight.

Sometimes it's so hard.

Wednesday, November 17, 2004

It seems that the number of people suffering from mental illness - including psychosis and schizophrenia - is increasing rapidly.

There is a growing recognition that drugs use (or should we say 'misuse') is a serious contributory factor.

More about this can be found here. Thanks to tiny.vol for this link.

If you are interested in joining an email exchange group about this subject do email tiny.vol.

We believe that excessive cannabis use was a contributory factor to Sam becoming ill.

Tuesday, November 16, 2004

Sam's social worker and psychologist from the Assertive Outreach team are both also very negative now about Sam's hospital.

I think another move may be on the cards.

So ....

Watch this space!


I still worry though that unless we find something really good it could be counter-productive.

Sometimes it's best to try to change the current situation and make it better rather than cop out and look for a better alternative. For instance the Social Worker is going to ask for a change of consultant which would also mean a change of ward doctor.

Sadly neither I nor Jane really have the emotional energy to work at changing this hospital as well as the rest of the world that Jane is changing at the moment.

She's had a couple of messages giving her a real boost about her work this week - one locally and the other nationally. It really helps her to know that some people value her work in this area when the hospital clearly doesn't.

Maybe it's the difference between theory and practice!

Friday, November 12, 2004

Well we met with the ward doctor today.

How did it go?


I'm not sure. At least it didn't end up in fisticuffs and Jane managed not to get too upset.

The doctor felt that currently whenever she spoke to us on the phone - and Jane in particular - it just ended up with us criticising them. Why couldn't we just trust them.

I tried to explain about the confusion in information we had been receiving recently and that trust was something that had to be earned not just given blind.

We talked for a long time but she didn't understand. It was clear when we made a number of points that she just misunderstood. I think she came to realise herself that she didn't understand. But there was an antagonism there.

She couldn't accept criticism as part of a discussion or debate.

She took it personally.

Okay - we all do. Jane has taken lots of things that have been said personally. But in this context we are the people they are working with as professionals. We are not the professionals using professional skills to ensure good communications...

... well, actually, at times we are, and they are not.

In a previous existence as a senior manager in the public sector a large part of my job was listening to concerns of people and trying to reassure and support them - even if at times they may have been angry or even abusive. It went with the job. I didn't try to attack them for being critical. I might have been assaulted if I had done!

But this doctor demands trust and respect even when she cannot relate to us.

It's her job - or at least it should be.

She asked what we wanted...

... but did not understand the answer.

We left her some leaflets that described good practice in working with carers. She left them on the table.

They were picked up by the ward manager who had also attended the meeting.

I'm so glad she did.

She has "people skills". There were mistakes that had been made that were down to her but she owned up to them in an open manner. She wasn't defensive. She knew what we were talking about.

I'd tried to explain that if we sometimes appeared angry, upset or antagonistic that wasn't what we were trying to portray. We were just venting our frustration and upset that Sam was becoming so ill in their care and that we needed support not confrontation.

The ward manager got it.

She seemed almost in tears at one time.

The doctor just seemed bewildered.

It's good the ward manager was there as towards the end we were just talking with her. She was modeling good practice in talking with distressed carers.

The psychiatrist, despite her training and eighteen years experience just had no idea.

At the end we shook hands politely with a commitment to try to make things work.

Later, after spending some time with Sam (sadly not quite so good today, the ward manager let us out - double locked doors and all that). I made a point of thanking her for attending the meeting and helping it not be a disaster.

She said in an undertone, "Just phone me," and gave her times of work.

She understood what it was all about.

Thursday, November 11, 2004

Although we're going to the hospital tomorrow for the meeting with the ward doctor I still visited Sam today. It was convenient and I haven't seen him for a couple of weeks.

He seemed really well. He was insightful about his condition but clearly had some symptoms. The thing is though - he was mostly in control of them rather than the other way round. I tried to discuss with him a move to another setting but he was not at all positive.

He just wants out.

He wants his independence back.

He is worried that he is going to end up institutionalised for the rest of his life.

He has seen examples of this all around him in this and other hospitals.

It was nice to see him quite well and to be able to chat but he does seem a little down.

I drove back to try and get dinner ready - which I have managed but I'm aching all over again. I've been much better the last couple of days. Maybe it's trying to do more - or maybe it's worry about the meeting with the ward doctor.

Who knows?

That's the trouble - I just don't know what makes me feel better and worse.

Tuesday, November 09, 2004

Jen received a call from the psychologist from the local Assertive Outreach team.

He had visited the hospital yesterday and had been talking with the doctor.

He also as many concerns. He would like to do some training with the staff there.

At least it might be becoming obvious that it is just us that are concerned.

Monday, November 08, 2004

I had told Jane that I would speak to the ward doctor today about what Sam had said regarding the medication and leave at Christmas.

I wasn't so sure then and I was even less sure today. Jane seemed to have forgotten about it and I decided that it was better to leave them the chance to phone us first or to try to introduce the discussion in a more informal environment.

The last time I had questioned the ward doctor she said she had been about to phone me - I didn't want the same excuse again.

As Jane left for a meeting she said she would phone the ward and leave a message for the doctor to contact her.

Later I got a phone call from Jane sounding very distressed.

She'd been in a meeting with senior health care professionals who actually have control over the funding for Sam's current placement when she received the call.

She went outside to take it and returned to the meeting unable to continue. She was clearly distraught and was taken to a separate room to rest.

She had raised the issues about the medication and leave with the doctor and she just denied it all.

This may be right.

Sam is poorly and often confused - though he also usually is straight about such things.

Jane went on to raise her other general concerns and the conversation quickly deteriorated.

They clearly don't see eye to eye!

A couple of hours later she phoned again to ask us to a meeting in a couple of days. It had to be that day and in the morning. It's a three hour return journey for us - and we do occasionally have other things in our diaries - well Jane does, anyway.

I tried to take it as a positive step of her trying to rebuild bridges but she still sounded very defensive on the phone.

Late afternoon Sam's care coordinator phoned to apologise that he hadn't been in touch and to touch base.

He was really intending a quick hello - and talk tomorrow, but I think it was well over half an hour later when he got off the phone.

He wants to come to the proposed meeting with the ward doctor.

It might be right but she mustn't think he is coming because we have asked him.

There is too much paranoia already.

This is a psychiatric ward.

Sunday, November 07, 2004

We used to get lots of phone calls and then there was no reply.

They were from call centres automated settings. We've subscribed to a system where we shouldn't get them any more and recently we've had few.

Today the phone rang twice and there was no reply.

Sometimes this is Sam. We ring for the number calling and recognise the number for the ward phone and call Sam back.

When it rang twice today though there was no number available.

Jane began to worry it was Sam who had run off again and was calling from a call box ... anywhere.

She rang the ward and asked staff if they could get Sam to phone us. He did. It wasn't him. Relief.

But then he said he'd been taken off the Olanzapine. But he'd only been on it for just over a week!

And the doctor had said he might be able to have leave at Christmas.

He's just had leave cancelled because his safety cannot be assured given that he ran off the other day - but when they are short staffed at Christmas ...

Sam may be confused but we need to ring tomorrow to check this out.

I'm not looking forward to it though.

Saturday, November 06, 2004

I had a bit of a tummy bug yesterday.

It has seemed to exacerbate all of my ME symptoms. I'm still aching all over today and have no strength. I had hoped to visit Sam. I haven't seen him for a fortnight.

Jane went with her brother who is staying with us for a few days.

They made a day of it and visited a local tourist spot after seeing Sam.

Sam seemed better than last week which is good. Maybe this change in medication is working.

I do hope so. We're coming to the view that there have been so many changes in medication since he has been in this place and he has remained poorly. Maybe it is time to gradually remove medication and then begin from scratch. He couldn't be much more poorly than he has been recently.

Friday, November 05, 2004

Jane rang the ward today.

She wanted to check that Sam was okay after trying to run off.

There was nobody who could talk to her.

She rang again later and got to talk with his named nurse.

Jane poured out all of her concerns. The nurse was very good in listening but there is a limit to what she can do. It's all down to the consultant but after the last meeting Jane has little faith in him.

He tried to show he understood Jane's worried about Sam as describing them as like an itch that you can't scratch. Jane justifiably thinks this was just crass.

Wednesday, November 03, 2004

We had a call from Sam's named nurse today.

That usually spells trouble.

She's very nice but doesn't generally just ring for a chat.

Sam had tried to run off when taking a walk with two members of staff. They'd run after him across some muddy grass and caught him. They came in very muddy and somewhat displeased.

Sam said he was heading for London.

Are we surprised given my previous post?

Tuesday, November 02, 2004

Sam phoned last night.

He said he was depressed.

He had done all he could to make people better but they weren't getting better any more.

Then he mentioned -

he'd been given a letter.

It said he was going to be detained for a further six months. (Not that he had understood the timescale or details.)

I'm sure that was why he was depressed but he said he was okay about it.

However the letter was the first he had heard about it. The consultant psychiatrist had to make the decision for the paperwork. The decision had been made. They knew he would be getting the letter.

But nobody had thought to discuss it with him. Didn't anybody think of the impact on a young man getting a letter to say he was to be locked up for a further six months. Anybody would be upset and deserve some support - but someone with mental health problems???

Am I asking too much to suggest that this should be handled differently as a matter of course?

Surely this is an issue for all patients and wards should have a policy for how to explain this to vulnerable individuals.

To send them a letter ..........

It beggars belief.

Monday, November 01, 2004

Before we went to Venice we understood that the anti-psychotics that Sam was prescribed were aripiprazole and quetiapine.

The phone call from the second opinion doctor when we were in Venice said that the ward intended to remove the quetiapine.

When we spoke to the ward doctor on our return she said that the intention was to remove the quetiapine but reintroduce Olanzapine.

At the meeting last week with the consultant psychiatrist and the ward doctor we were told that for the moment they would continue with quetiapine but a future change to olanzapine was possible.

Sam phoned last night. He said he had been on olanzapine as well as quetiapine and aripiprazole for a few days. He would have started on it the day after our last meeting where medication was being discussed.

I rang the ward today to try to find out if Sam's account was right or whether he was confused. I explained to the nurse and asked if he could please check for me what medication Sam was currently prescribed.

"Just a moment."

And then in the background, "Is there a 'secret' button on this?"

The phone went dead for a while.

"The ward doctor will phone you back after ward round. It could be an hour or so."

I'm still waiting ...


She's just phoned.

They are changing the quetiapine over to olanzapine.

The decision had been made with the pharmacist immediately after we left the meeting with them last week.

I just can't believe that we could be in a meeting with the consultant about medication for an hour and then immediately we leave the medication is changed and us not be informed.

Yes, they did say that a possible change to olanzapine was being considered but that for the moment they would stick with the quetiapine.

So how can they tell us one story and then half an hour later change their mind? And not even bother to tell us?

Of course, she was going to phone us today to let us know.

Of course she was.

I don't think we put the phones down on very good terms!


Earlier Sam's care co-ordinator, the social worker from the Assertive Outreach team, had called. I discovered I was in a bit of a state. I hadn't known until I tried to talk and be articulate. I'd been a bit choked by a simple line in a play on the radio earlier but thought little of it. But when I came to talk with the care co-ordinator I just couldn't get my words in any order at all. As I went on I managed to get going and was able to say what I wanted about Sam's current situation.

That left me a little shaken so I think I coped well when the doctor phoned from the ward. I could have either burst into tears or just started ranting at her. Although she could tell that I was clearly not pleased I think I managed to stay reasonably calm and polite.

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