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Monthly Archives: November 2013

First of all I will start with extracts from the Minutes.  I decided to do the minutes in protest at the fact I was never given a copy.  I am shocked by this as everyone should receive a copy of the minutes but the consultant psychiatrist at the Bethlem said no and when I asked why he said he wanted to concentrate on the “care”. 

I always took someone along to these huge meetings as a witness and they were shocked.

I am documenting the second minutes I did where I did an introductory paragraph relating to the last meeting where I had a disagreement with the consultant psychiatrist as to how the reduction would be done in terms of what had been promised in writing for my daughter – a drug free period of assessment.  That was why my daughter was at this so called leading  hospital.

So the psychiatrist had announced at the last meeting he would reduce the Seroquel by a huge amount and that my daughter was being given Olanzapine on top.  I was distressed to hear this as this was not what was promised.

Elizabeth had been sectioned for wishing to go out in the grounds and the fact she did not feel like speaking to two nurses who tried to stop her from going out.   I was upset at this second meeting because the previous weekend I was told Elizabeth had to be back in 3 hours and that police would be called if I did not do what they said.  Prior to all this we had all day to spend together but they had imposed rigid restrictions on Elizabeth whilst they tampered with her drugs.  Elizabeth described this place as prison – she wanted to come home and was very unhappy about what they were doing with the drugs.  I felt my daughter had been betrayed.  The rest of the family thought I had been tricked.

 

Anyway the meeting consisted of less people than the last one.  I have documented how I confronted the psychiatrist about the mixing of drugs leading to her being sectioned.  I requested she be taken off the Olanzapine as I had read this to be harmful – I had brought documents to prove this but he was not interested.    I discovered my daughter had been put on a Section 2 which is for 28 days.   The mixing of drugs caused shocking distress to my daughter.   When I confronted the team about this drug and a study done by Professor Healy, I could see that both the psychiatrist and psychologist were smugly smiling.  When I commented the psychologist stopped smiling but the psychiatrist continued.  He was dismissive and asked what alternative did I have in  mind.

The alternative would be obviously the drug free period that was recommended by the professor in the first place.  The psychiatrist still kept on smiling.   When I stood up in distress as this doctor refused to listen to anything, he immediately called a halt to the meeting.  “Get out of this room or I will call security and have you removed”

I commented that what I had seen going on was against God  – he still kept smiling when I accused him of abuse by not listening to my daughter’s wishes.  She had after all signed an Advanced Declaration before going in to that hospital I thought was a top leading renowned hospital where my daughter was going to get decent help.

The lead nurse ushered me downstairs and then a social worker came to see me.  He was attached to the hospital and I have to say this was one of the few staff I came across that I would highly commend. 

I felt nothing had been achieved and wanted my daughter out of that place into somewhere nicer as she was not happy.  Everything was up in the air.  What had happened to the contacts that the leading professor said he had?  Suddenly he distanced himself and was no longer a part of that unit.

My friend and I took Elizabeth for a meal but she ate nothing.  Whilst the grounds are beautiful surrounding this hospital, it is when you get onto the wards that you see the true reality.

About my letter of Complaint

On weekly basis where possible I got calls from the Lead Nurse but you never got given any information – just a chat about nothing really.   I referred to a conversation such as this in my letter and asked as to whether anything had been sorted out regarding me being allowed to take Elizabeth out at the weekends.   I voiced concerns that no one trusted me in the team and Elizabeth was forever stuck in on that ward because of staff shortages in terms of availability for escorts.  Elizabeth looked very pale as though she was not getting enough fresh air.  She had piled on weight whilst on the Olanzapine.   I was now having to be escorted everywhere during visits- suddenly the nice days out alone just the two of us had disappeared.    To allay the fears of staff about my daughter’s safety I offered to get character references and up until recently had been training for the Police.  I asked for clarification, questioned what their problem was and as I received no proper answers, I felt all of this was personal against me and that is because I spoke up for my daughter –  even if you speak up nicely this does not go down well with the team and they start to label you are well stating that I was causing distress to other patients and to staff on the ward.  For instance when Elizabeth told me she was upset at being offered Clozapine twice in the first week I confronted staff in the office but not in such a way where I was yelling and shouting however Elizabeth was distressed at just the mention of staff trying to push her on Clozapine.  She started to speak out I don’t want this.  I then stuck up for my daughter and defended her as any mother would do.    Elizabeth was on a Section 3.  Attempts had been made to displace me as Nearest Relative and I have never suffered so much harassment in my life.   I thought Elizabeth could have remained voluntarily whilst a placement was being looked at for her but at the same time I felt that she had been let down badly.  I was considering having her home as she was stable however my attempts at overturning the section did not work out and her solicitor noticed she was distressed at going through the Tribunal which I got to find out about by chance.  “Do you really want to go through with this –  you do not have to if you don’t want to”  –  I had taken a day off work and my daughter who found meetings stressful  had backed down.  The staff surrounded her in the hallway away from where I was sitting in the lounge area of the hospital.  Never on any occasions did I ever see the advocates Rethink present at meetings which I knew my daughter dreaded.  I did not feel my daughter was being represented fairly at all.    I had also questioned why Elizabeth’s face was covered in bruises.   A section 3 locally is so different to that once you move away from the local area.  Locally, patients are allowed unescorted leave but Elizabeth was not allowed out even in the presence of her family.   I begged for a placement for Elizabeth in that letter away from the hospital.  Elizabeth was complying with the drugs and was unhappy on the ward. 

I felt the staff were accusing me because of my outspoken comments against the drugs that I would encourage her to stop taking them or attempt to take her off myself.  However  whilst I am far from happy I would not attempt to do this myself.  My wish would be though that she is on the minimal drugs together with supplements because I think of the long term health of my daughter unlike these professionals.

 

In my letter as my visiting hours had been cut so drastically I had requested brining a personal trainer onto the ward.  The ward had the atmosphere of a morgue and it was depressing to even visit.  I liked to take my daughter off the ward so I could be alone with  her as staff were everywhere.

I heard one of the patients last night on the programme state that it was all about control and how right he is.

My daughter was moved away so quickly none of us in the family had the chance to say goodbye.  I believe the motive of this was to get her away from me and I discovered even more control and restriction under the private sector care given to the point of phone calls being monitored and supervised.

I thought C4s programme was very sad when so many staff approached a patient who was already distressed forcing that patient to take the drugs.  Even when my daughter was suffering Akathisia a  direct result of the drugs she could calm down in an instant if a friend from the ward or an animal was suddenly present. 

We got Fluffy the cat for Elizabeth as she used to visit at the weekends and I noticed how positive her reaction was but then Elizabeth has always like animals.  The only animals going on the ward at the Bethlem were sniffer dogs.  I found this amusing when it was the staff who were the drug pushers.  There were hardly any visitors for the patients and I tried to liven things up  with a personal trainer and classes on the ward after all what could I do in just 1 hour.  Nothing came of this because eventually I was banned altogether.

I did not get a satisfactory response to my letter either.

I have only spoken to Elizabeth twice in the week.  Her text is down to 1 word  “Hi”.  I might get a text like this during the day and cannot always ring her back straight away.  I then phone and we have a chat.  The first thing she mentions is her cat.   I told Elizabeth we would be down soon to see her very soon  but before this I am looking forward to meeting up with other mothers, some of whom I have never met before and one mother wants to come from Ireland where the care is equally shocking.  It is appalling that there only seems to be the right care in a small area of Finland called Tornio.  If only we had open dialogue here.

I have an important meeting coming up and I wish to discuss what should be set up in the UK and the alternative to acute wards.  I appreciate some people may be happy with the acute wards but even stepping on some of these wards made me feel bad.  I have been on them in the evening at times where the atmosphere can be volatile and noisy/disturbing. Such wards are not peaceful and some people prefer peace and quiet in order to get well. 

 

I would like Elizabeth to go to a farm in the countryside –  Elizabeth would not adapt so well to a city any more as she now suffers from panic attacks.

 

I hope a decision is made soon but I am also concerned about her long term health.  I cannot dismiss this at all as I see this as a risk factor which should be weighed up by the professionals and not ignored especially now I  have received top level advice – this is something they should all sit up and take notice of in my opinion.  

 

 

 

 

 

 

 

 

 

 

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A date and venue has been agreed for an informal meeting of mothers, some of whom have sons/daughters on sections for years on end. What a waste of public money when many of these people if given the right care and support could thrive in society. It is so bad that people are written off and left to go downhill as the longer the stay in hospital the hard to rehabilitate that person. Today I have been busy writing to the mothers to see how many wish to attend this meeting. Of course the bulk will wish to attend as none of these mothers are not at all happy with the care and have had their families and life ruined. Some of the mothers have suffered physical health problems as a result of the stress of having their sons/daughters locked up on never-ending prison sentences often through no fault of their own as the drugs themselves can cause psychosis and when reductions are done completely wrong under hospitals it is no wonder why a patient can suffer psychosis and adverse behaviour. As Dr Ann Blake Tracy quite rightly says reductions should be done very slowly and carefully over a long period of time not in two weeks like the Bethlem did and then mix it with another drug. The reason so many are on sections is because there are no facilities suitable for them to go into and this is the kind of care that is needed. Why throw someone in a hospital for the rest of their lives and just give up. This is disgusting and an abuse of human rights in my opinion. There may be underlying health problems that could be affecting someone’s behaviour for instance but many of these people are not violent or a risk to society and it is unacceptable to me to see o many are just being written off.

I wish to introduce the mothers to one another and help in any way I can as I am keen to see Chy Sawel set up and am looking forward to when Dr Walsh comes over here. If any experts are sceptica, it is wrong as they should keep an open mind about matters – it is all very well and good to experiment to their hearts content with drug after dangerous drug but when these do not work what is the harm in trying a new approach. Obviously these professionals do not even stop to consider how they themselves would feel if they were forced to take drug after drug that cause terrible side effects and then be ignored and told you have to take them for the rest of your life. I do not accept this at all.

If a specialist centre was set up with doctors involved then there is a possibility that some of these people can be helped – these people who cannot speak for themselves as they are locked away. Dr Walsh will look at diet and vitamin/mineral deficiencies and in fact everything in depth unlike what is done in the hospitals. In the right environment reductions can be done in a humane way and this will save money in the long term to the NHS as obviously if people are affected with their long term health this will put a burden on the NHS. If someone has diabetes, they are immediately taken off the drugs but as I have documented, nothing is done properly in the UK as regards a reduction and no wonder things fail. Why wait until someone has developed a life threatening illness if it is proven that the drugs are doing harm.

So once I have found out the numbers I will contact Sandra to let her know and some of these mothers are in despair as they get no communication or help and have to witness their sons/daughters going downhill.

It is not just me who wants to see change even some of the medical profession and because of lack of facilities this is why patients are left far too long in a hospital.

It wont be long now before we go down to see Elizabeth. I phoned her yesterday and she sounded a bit down. I believe her sister will visit shortly alone and I have booked the wonderful farmhouse for when we come down to stay.

I am so happy that this meeting will take place on the 16th and I have offered to have stay with m e some of the mothers for 1 night.

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