Tuesday, September 30, 2008

Last week I picked up a friend at the airport - he lives in France. We went on to a nearby town to visit his brother. His brother is in hospital. It is a sad story - he was attacked a few months ago and has been in a coma since. I do not know him but by coincidence my sister knew him slightly in our original home town and in his current town when she was living there.

He was unshaven and his moustache hadn't been trimmed for ages. We talked to him and he stirred. Trying to get information from the nurses was like getting blood out of a stone. One was from another ward the other seemed to know nothing. Junior doctors strode about looking at charts trying to appear important. At my friends request a nurse took the temperature of his brother as he seemed very red and hot. Otherwise there was no contact between patient and nurse apart from necessary tests and support for his diabetes. Perhaps they overheard us talking as the next day he was shaved and his beard trimmed.

I rang the consultant but she would be in a different hospital many miles away the next day and would not be available to meet. To be fair my friend should have tried to arrange this before he came.

The one kind person who spent time with his brother was a cleaner. This was clearly a daily ritual where she put down her mop and came over to him and held his hand as she talked to him and asked him how he was and talked to him about this and that before she had to pick up her mop again.

Didn't nurses once have this role with patients? Now they sit at a work station talking on the phone or writing notes - too busy to talk to patients or family members.

I was almost in tears about it all. It was all the things we are fighting about with Sam - and here I found it to be just the same on a neurological ward.

Things must change.

Sunday, September 28, 2008

On Saturday last weekend I was just getting ready to pick up Sam for his leave when there was a knock on the door. I opened it full of surprise to see an old friend of Sam's - Andy. Sam and Andy were at school together, they became keen rock climbers, they had gone travelling together to Australia and South Africa climbing. We hadn't seen Andy since his marriage over two years ago.

He was in the area just for the day - his wife was on a course near by. Did he want to come with me to visit Sam? Sure! So we were off.

Sam was thrilled to see him but sady wasn't at his best. Andy stayed and had lunch with us. Sam struggled to be friendly and polite - but he had to keep going away to try to control his thoughts before returning and trying again. The following day he expressed regret that he had not been well enough to be really friendly with Andy.

This weekend and last Sam has struggled. There has been some lovely weather so it has been nice to be outside and to have some walks. We've enjoyed the views and the sunshine. It has helped Sam be calmer. It has been as if summer has been trying its best to come at last before autumn sneaks in. Last weekend we saw a beautiful blue and green dragonfly go past - but this weekend dropping Sam back at hospital I noticed the leaves of oak trees beginning to turn brown already as I drove home.

Friday, September 19, 2008

I was going to write a post about anger today but instead I am going to write a post about sorrow - and action. A carer friend of ours died recently. Jane has just received this message from her daughter about the subsequent death of our friend's son ...

On the 10th of October 2008, World Mental Health Day, we will symbolically escape St Ann’s Psychiatric Hospital in Tottenham. Dressed in pyjamas, we will go ‘on the run’ and push a psychiatric bed across North London to Parliament Hill. We will be hotly pursued by a giant syringe to symbolise the narrow-minded drug focused approaches that still dominate NHS mental health treatment. At the summit of Parliament Hill at 4pm we will have a Mad Hatters Tea Party to celebrate holistic approaches to madness and recovery. Why not join us for cake and cabaret!

This Great Escape Bed Push aims to honour the life of Daniel Galvin 1979 - 2008 (brother of Ana Silvera who is organising and attending this event)

Daniel was a bright, gentle young man whose life changed irrevocably when he was given powerful psychiatric drugs at the age of 15 after experiencing ‘unusual thoughts‘ and sleep problems. Reacting severely to the medication - in Daniel’s own words he was left feeling ‘totally deadened and zombified’ - he was hospitalised in St Ann’s at the age of 16, never recovering from the devastating fallout of his treatment.

In August this year, aged just 29, Daniel died of a heart attack, a problem known to be associated with the drug Olanzapine that he was given, at times on a compulsory basis for the last 5 years.

We want the Daniels of the future to get real choices about their treatments so that the chemical cosh approach to mental health becomes a thing of the past.

Show your support by joining us for any part of the day you would like!

For further details, contact psychologist and campaigner Rufus May (seen recently on Channel 4's 'The Doctor Who Hears Voices' - see www.rufusmay.com:
rufus@rufusmay.freeserve.co.uk )

Perhaps see you there!

Thursday, September 18, 2008

We went to a meeting the other day about "direct payments". It is a scheme where social support can be converted almost into cash - that if one is unhappy with the provision provided to meet a need then one can have the money to purchase the support elsewhere.

The room was full of angry carers. They were desperately hoping for new money and new support - but of course there is none. It is just moving the money around. The trouble is that there is no support for most carers of people with mental illness. They are just left to get on. it is not like a physical problem where someone might need getting up in the morning or having cleaning or shopping done because of physical disabilities. Psychological impairments are not recognised in the same way. So social workers refuse to even do the assessments because at the end they know there will be no money available any way.

During the meeting there were two carers in tears trying to describe their situation. It is just how it is caring for someone with mental health problems. Few others can even begin to understand what it is like.

Earlier in the day we had been at a planning meeting for Sam. At that I was concerned about the level of support he would receive if we get him out of hospital. This meeting just reinforced my worries.

Wednesday, September 17, 2008

On Monday morning we had a CPA meeting at the hospital - a planning meeting with all the professionals.

I awoke early from a dream where I was describing what a CPA meeting was. As I dozed I went through in my mind all the things I was currently angry about. Just about now and recent events. I imagined myself saying this list at the CPA meeting. I knew though that I must not do it - if only because it surprised me at how long it was even though I hadn't finished it.

But in the end ...

Yes I got angry and said some of it. Not a fraction of it really. I doubt it did any good but I had to say it.

They had supposedly tried to arrange this CPA meeting properly. They had even invited the occupation therapist and the pharmacist. The pharmacist told us she had never been invited to a meeting on the mental health ward before!

The only problem was that the psychiatrist was not there. The date of the meeting had originally been arranged at the previous meeting to fit in with Jan's diary and the psychiatrist had said he could make it. Then we got a message to say that the psychiatrist was not available on that date and just giving us a new date. Jane had to cancel some work to be able to attend. We were all sat round at the meeting waiting for the psychiatrist when we were told he had been "unavoidably detained".

"Under section 3?" quipped Jane - the section of the mental health act that Sam is detained under.

It was later when Jane rang to try to make an appointment to see him later that she discovered why he wasn't there.

He was on holiday.

Tuesday, September 16, 2008

We were unsure what to do on the Sunday after the previous day's events. I was totally drained by the experience and couldn't countenance repeating it. We decided not to decide what to do until we had slept on it. We thought perhaps that to take Sam for a walk if he seemed well might be better than bringing him home. As we were discussing timings Sam phoned. He didn't actually apologise (he rarely does!) but he recognised the previous day had not gone well and that he had not been well.

As he seemed aware of this it gave us confidence to try again. Jane phoned the ward and made arrangements - we would take him for a picnic lunch at a near-by beauty spot.

When we got there it looked as if the previous day might be about to be repeated - but observed by crowds of families having a Sunday out in the countryside! But Jane gave him some hard words about what he was saying and how hurtful it was. When he started to talk about such things I told him to save them for another time and just to think of now and where we were.

He seemed to calm a little over lunch. Then we walked to the particular spot we knew he liked. It is a very dramatic area where he has done some climbing in the past. When he saw it he looked over his shoulder at me with a joyous beaming smile on his face. From then on it went well. He was talking of climbing and the beauty of the situation. He was happy to sit by the stream and smoke, a lovely tea at a cafe with a garden by the stream, then a drive over the hills to another climbing area he likes and a soft drink outside the pub.

He went back to the ward happy and content.


Monday, September 15, 2008

The weekend started less well.

We were looking forward to Sam coming home on Saturday. He has up to six hours leave now. It started okay. But he soon became fixated on us and was hearing us saying things that we hadn't said. He insisted on telling me he had magic powers and the fact he was in a mental hospital didn't stop that being true. He said he had heard us discussing divorce in front of him and was angry with us telling us how inappropriate it was. He rang some friends of ours to tell them this. I must check if they now think we are getting divorced!

He calmed a little and I went for a walk with him. Parts of it were hard but we managed. When we got home though he became angry, belligerent and aggressive again. He slapped Jane across the face. We managed to calm him - on the ward they would have set of loud alarms, three or four staff would have pinned him down and he would have been injected with a tranquiliser. That has happened several times since he has been on that ward.

They too could have calmed him if they had tried - instead he was pinned down as a punishment.

But he soon became extremely argumentative again and we managed to get his agreement to go back to the ward. The journey back was difficult with Sam being challenging and belligerent in the car. We rang the ward to say we were returning early. Two were waiting to help. They obviously had a major incident in their minds and seemed almost disappointed by our low-key description of events (omitting Sam having slapped Jane.)

Sam calmed as we arrived and even came to give us both a big hug as we left.

Sunday, September 14, 2008

While we were away my mum and dad had visited Sam. They phoned us and let Sam talk to us and we phoned them back later. They thought Sam seemed more positive, friendly and polite - but they felt he was over-sedated.

It was interested that they thought this.

When we got home we visited Sam intending to see him briefly at first and perhaps go for a short walk. But Sam was keen to go out and as he seemed so well we went to a local pub for a meal. It was in the countryside with lovely views and space outside where Sam could sit and smoke. It all went very well. Sam was asking after us and taking account of us and our preferences rather than just thinking of himself. Clearly this was an improvement. But underneath this facade there was still lots of evidence of his psychosis. it was as if the new medication had made him more compliant and amenable but had not really affected the underlying issues. it was all on the surface. But the staff of course are thrilled. They see it as a major step forward and huge progress - because they take a behaviouristic approach and if he isn't causing them any problems then he must be getting better.

His named nurse even said to us that he was well enough to have some unaccompanied leave - and that she now has a good relationship with him. She clearly hasn't had some of the conversations with him that we have.

Is it carping of us not to accept what they see as his improvements?

To be fair it was lovely to have a nice evening with Sam - and he himself was aware of his improvement.

Saturday, September 13, 2008

We got back from holiday a few days ago. There have been ups and downs already as you might expect. There were several days I wanted to write about things while I was away - I managed it just twice - the results are below ...

Thursday 4 Sept

We were moving on today to another location in France. We may have less access to the phone and internet. Jane decided to phone the ward and to talk to staff and to Sam. We've been getting messages and have spoken with Sam several times.

Sam's named nurse was on duty and so Jane chatted with her about how Sam was getting on - more settled from their point of view. Jane asked if there had been any changes in medication. She said Sam was now on a depot - his medication given by injection periodically rather than orally on a daily basis. This is more usual for people living in the community or where there is an issue about them agreeing to take the medication. There seemed no logic to Sam being on a depot. Given that we were wanting to continue to raise several issues about Sam's medication and dosage - the fact that he is on a depot is like a "fait accomplis". It has been sorted, it cannot be easily changed so there is nothing we can do about it.

Jane flew into a rage. She was distraught. But it was no surprise to me. I knew they had it in mind. I knew it was coming. Perhaps I'd already had my rage. It flies in the face of all logic - but logic has nothing to do with it. To them Sam is calmer so it is working. The fact his speech is slurred and his thoughts are just as disordered have not even been noticed.

I feel as if our holiday is already over.

Friday ...

We joined our friends in going to a "soirée" with French, Dutch, German and English people who live in this part of France. We managed well - I don't think we mentioned Sam once. In fact we had a lovely evening - and even stayed on to help with the washing up and a coffee after everyone else had gone - until our chauffeur felt safe to drive home!

Earlier we had phoned Sam's care co-ordinator. We're cross that he is sidelined by it all ... but in the end the system doesn't work - and if it did it would be more work for him that he hasn't time to do. But he listened very supportively. In the end I think we have to get through the current problems. I believe the Assertive Outreach team really do have plans to try a new approach. I think we have to stand back a bit and give them a chance. It is just so hard when one sees the system being so bad - one wants to change it all for the benefit of all suffering from it - not just Sam.

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