Time goes quickly but there is not a day that I do not think about Elizabeth and she is a long distance away but in a nice peaceful environment. The only thing wrong of course is that, unfortunately, the “care” under psychiatry wherever you go seems to be all about drug pushing.
Anyway, I went out mid-week to watch horse racing with work colleagues which was very nice and actually won some money and I was about to return tickets as well, as I noticed that the tickets were not for the right race that I asked for! I decided to book in a hotel as I work a long distance from where I live and that made a nice change as I did not have to rush in the morning to get ready.
I do not phone Elizabeth every day but it is very upsetting when the phone is not with her and you have to go through the office – you start to imagine that they have confiscated the phone or else perhaps Elizabeth is ill and there have been occasions when she has been very ill recently on these chemicals. Being kept waiting a long time on a mobile is costly and sometimes you are told you cannot speak to her. Well on Thursday, after several days of not speaking to her I decided to phone and Elizabeth was not at all well. The worst thing about the “care” is lack of information and communication. I was further upset to hear that other family members had full knowledge of the Tribunal date and had been contacted by a member of the team and when I asked on my visit I was told nothing as though it was secret and I feel as though I am being excluded and that the team do not like me as in the past I have been outspoken but I have not been outspoken under this hospital apart from matters to do with the family not being able to get through on the telephone. When you hear information third party especially about things as important as the Tribunal that makes you think in light of the last time, what is going on? Last time they tried to replace me as Nearest Relative but the father of Elizabeth has recently told me that he has no desire to be the “Nearest Relative”. He has enough of his own caring responsibilities but the one thing we agree on is she should not be sectioned. A section should only be necessary when someone is at risk to the public or at risk to themselves. Elizabeth should be allowed time to spend with her family alone and I as nearest relative should have the right to some information but it is as though noone wants to communicate with me at all. Her father saw the psychiatrist who I thought was on holiday and has been given a lot of information unlike me. I have got to hear all of this information third party.
So we both agree she should not be on a section and also that a visit should be allowed without a member of staff sitting in a small visiting room listening to every single word of conversation. I think this is very very wrong. Unless you as a parent are suspected of terrible abuse then no visits should be monitored. Even in the prison camp environment of the last hospital you were allowed to see someone and at least have a conversation with the person you care for without a member of staff standing practically next to you all the time. It is as though they do not trust you and I think it is against someone’s human rights and unnecessary completely especially when relatives have to travel from a long distance away.
Yesterday I went to a meeting with new friends – the new friends have formed a group who wish to campaign for improvements in mental health care. They are known as “Speak Out Against Psychiatry”. This group is mainly patients and some carers who have all suffered tremendously under current psychiatric care. They are not into violence but are a caring group. This group are currently concerned and worried for one of the members in hospital and the meeting discussed how best members could help that person who is now in hospital. The group engage in peaceful protests to draw the public’s attention to a subject that is not highlighted enough in the press and acted upon by Government. The fact is the “care” is failing so many people and it is very sad to listen to what others have suffered and I think it is extremely brave of those people who have been under psychiatric care to speak out about it and try and get things improved in a positive way. Many of the members who have suffered so much try their best to get on with life and think of others which to me is very admirable – these are caring people, people who want to help others yet many of them work/do things in the community in a caring capacity and are highly intelligent. I would not wish to associate myself with anything that was endangering other people’s lives or causing trouble but this is a worthwhile group who should be highly recognised.
I get to hear more and more that care in the community does not work for so many and I have seen patients beg to come back into hospital where they feel safe. There is simply not enough support given and many people under the mental health when discharged from hospital become isolated and extremely lonely. There is no encouragement to integrate patients into society and for those who have been in hospital a long time like Elizabeth they need more one to one support in order to get back into life and work for instance. Elizabeth lost all her confidence and I tried to help by taking her to college and trying to get her away from mental health activities but her social worker patronisingly said “she would feel more comfortable with her own kind” – this is terrible – I saw Elizabeth get on and mix well with other people at college and the psychiatrist was furious that I had gone over their heads. However before a class started Elizabeth suffered panic attacks like never before but at the end of the class she was so happy and it was a floristry class and the teacher was full of praise. The care is dreadful because they do not encourage a patient to do things they hold them down and control and do not help them in restoring their confidence or give any encouragement. It is disgusting what is going on. Elizabeth was eventually placed in a flat but in the evenings there was nothing to do and not enough going on during the day and not enough support. She was not happy there but noone listened. The placement was entirely wrong but noone would put their hands up and say they made a mistake. This is where care is failing. Being in London is a busy and hectic place to live and stressful. People are rushing around all the time. I think therefore Elizabeth is in the right environment because I do believe environment plays a part but disagree that it is just down to home and family like so often is blamed. Elizabeth had previously taken on too much for herself and I told her to cut things down and she did but life just got on top of her but there was much more than that which I cannot mention.
Getting back to the group, everyone wants reforms in mental health care and I cannot wait until one day when hopefully the law is changed to allow a patient choice and to stop the current abuse that is allowed to go on. Elizabeth is now in what she describes as like “four star hotel” – Cambian Four Star Wards and the food is supposed to be lovely. Every ward should be like a four star hotel with nice food etc and although she is a long way away I am pleased she is there rather than on the awful acute wards locally. On a local acute ward things are far from good. The food is awful, the wards are noisy and sometimes unsafe. The care is all about drugs and more drugs. I have seen the same patients return time and time again so this says care is not working under the NHS. The so called “flagship” of the NHS under SLAM – the Maudsley was the worst place on earth for Elizabeth to go and I was shocked the minute saw what has been known as “BEDLAM”. Well it was like prison – the grounds were beautiful.
Anyway, I am still waiting for a satisfactory response to my letter and it is taking a long time. I am going along to their meeting soon and am looking forward to this very much because I will get to meet the very people who I have written to face to face.
Meanwhile I spoke to Elizabeth – finally they returned her phone which apparently was in the office charging for days on end. I spoke to her Friday and Saturday and was relieved she seemed OK after on Thurs medical staff were with her and I could not speak to her. She said she was happy there but commented on the Clozapine that she wants to come off it – her words not mine. Ihave been told this is one of the worst drugs to come off and no doubt it will make her very ill but if she is suffering on it now then it is for the best. Meanwhile because of my concerns of the huge lack of communication and information on the part of the Cambian Group I have appointed independent advocates for myself and Elizabeth and also, I have solicitors on standby. It is a shame you have to go to these lengths but the lack of communication is so awful and it affects you so very badly and it is law that the Nearest Relative gets given some information and that is why I am determined to get something sorted out as this has been going on far too long. All I want is for Elizabeth to be happy and she is happy where she is so she tells me but there are faults. The awful drug Clozapine for one is terrible and should not have been given to Elizabeth.
I am looking at some literature now about NICE praising this drug. I am horrified that NICE do not speak out about what is going on under the Maudsley and how they are using this terrible drug against patient’s wishes and ignoring FDA advice. How can NICE sit back and allow the kind of experimentation that Dr James MacCabe is doing and other doctors.
The next thing I want to do is to go down to the Royal College of Psychiatry and confront some of these people myself. I have seen the most horrifying research papers and I would also like to go to the offices of NICE and meet with them too. They should not be praising the drugs like they are doing when I have papers that I am sure the hospital would not wish the patients to read as I have seen the sheet of paper they give up to highly drugged up patients who are too weak to even know what they are agreeing to like my daughter who was blissfully unaware but suffering terribly and still is on a chemical that makes her feel disorientated and dizzy and so she says has put a “strain on my heart”. These chemicals shorten a patient’s life by 10 years if not more and I am very keen for Elizabeth to have hollistic care and if I knew of anywhere I could send her I would do anything to get that care for my daughter as it is cruel and abusive to push drugs at someone in the circumstances where the promised drug free assessment was NEVER given as you cannot take someone off as much as 150mg of Seroquel and not expect that person to go downhill and the next thing they slap on a section then by law they can experiment to their hearts consent and get their money from the drugs manufacturing companies in doing so. The information the Maudsley give the patients is very little but I have done huge research on these drugs and when I brought the true facts onto the ward and wonderful alternatives this was not appreciated by the staff but I was treated like a criminal and I cannot wait to see the heads of this organisation at the forthcoming meeting.