A date for the Tribunal has been virtually set and I have had to fit in with the team of Cambian as the Consultant Psychiatrist seemed unkeen to accommodate my younger daughter’s request but we have had to work round this as a family and the entire family want to be there for this occasion to support Elizabeth. Three times now I have heard nothing – no response to my emails from Cambian in Wales and this has led me to finding out the email address of the other social worker (my daughter has 2) and I understand these social workers attend such meetings on occasions but never once has anyone invited me. Well Elizabeth has said openly that she wants me to attend the CPA meeting and I have written three times now. Bearing in mind the convenient location of Cambian’s Head Office I am not too worried about the wall of silence as I can pop down there every day if necessary. Even though I am far from happy with the goings on at Cambian and social services it is not my intention just to go down there to complain – I want to meet the Chief Executive Officer and all the staff. If the consultant psychiatrist has a problem with me attending the CPA – it may be because she is afraid of me (don’t know why when I just want to sort things out openly and honestly) – it may be that she just does not like me at all and certainly has come out with some choice words which have got back to me. I understand she has also used a not so complimentary word to describe Dr Ann Blake Tracy who has given me huge advice. Anyway I am more concerned that she has tried to influence my daughter against me as Nearest Relative – I think this is terrible and she has gone beyond her duties as a doctor to do this. She has referred to my “past behaviour” and I would like to know more about these comments as this could have been derived from the previous hospital The Bethlem. If there are things written about me then I have a right to know about them. I do not care if the comments are totally uncomplimentary – I would rather this than secrecy any day as I respect honesty. I do not feel I have had honesty with the team at Cambian or the Bethlem but I cannot comment on Head Office. They may be oblivious to these problems going on and all I want to do is to try and sort things out as the Nearest Relative.
So I have the email address of Mr Asaria, CEO. I wrote and requested an appointment when I heard nothing once again from Cambian in Wales. I was told by his PA he was out and could not see me but I was in the area of Fulham Reach and decided to call in to their plush offices today in my lunch hour. All I wanted was to make an appointment but his PA did not even bother to come down or bother to speak to me on the telephone. I would never be dismissive like this in such a position. I did not expect to see Mr Asaria as she said he was out however the receptionist told me had just missed him – what a shame as I would have liked to have introduced myself to him. I did get a response from the social worker – one of them “you are welcome!” in response to my email stating thanks for passing on the email address of the other social worker. I explained that now I was in touch with everyone there would be less likelihood of such shocking communication errors occurring again such as when the Tribunal was arranged and everyone knew – the entire team except for me. I am keen to rectify such errors so that they do not happen again through lack of communication. Now I am in touch with Mr Asaria’s office I am waiting for a date and time in order to meet with him and I have suggested after work. I will give them a day to decide on this before contacting them again and a further visit to their office. In fact I found it an extremely pleasant walk and once again my thoughts turned to Elizabeth and how much she would have liked it there where they are building luxury flats – you do not think you are in the heart of London – whoever decided on that as a location for Cambian’s Office – I commend them.
Anyway, I am happy a date has been set but am waiting for Cambian to let me know the details of the CPA – I have not once been invited to such a CPA and if they really don’t want me there then Cambian at Head office should do like a video link to include me in the CPA – as Nearest Relative it is important that I know what is going on as this will be discussions about the section and where my daughter will be placed and so they would concern me. The entire family are very concerned about Elizabeth right now and do not feel she is getting any better – in a hospital environment – it is not good – if she was in the therapeutic community I feel this would be great which is supposed to give more one to one care but in a hospital such as Cambian it is strict control – Elizabeth is not allowed out to go to the shops on her own even – it is even stricter than Prison and what on earth is my daughter doing on such a prison sentence when it is not her fault. She has been described as “a victim of the pharmaceutical industry” – she has been used as a human guinea pig and her behaviour in the past was caused by the drugs and not her so called conditions of which she has several. I only had to look at her eyes, completely dilated and her moods would vary whilst on the drugs. I have seen the effects of psychosis and watched the suffering of my daughter. Noone will ever take responsibility for their mistakes and it is far easier to carry on with more of the same treatment not thinking about what can be done to improve things and give humane care as opposed to the current “care” of enforced drugging and CTOs. I am in touch patients who are off the drugs now but have suffered extensively and have long term health problems as a result. I would describe the current system as cruel, abusive, wicked and evil -against human rights.
I am campaigning for better mental health care and think that therapeutic communities could provide the answer with peer support and a look at decent nutrition and diet according to the assessments by Dr William Walsh and with the correct help a patient can be then on the minimal rather than maximum drugs. This would be a better solution that keeping someone on an extremely high dosage, shortening their lives by 20 yrs or more and causing long term health problems.
Elizabeth has ballooned in weight, She is stooping and looks disabled now. She suffers panic attacks – the whole family who were once in favour of the professionals and their “care” are now concerned because of what they quite rightly see as decline. What is not provided is a decent carers allowance that allows people to survive but even then it may not be the best option for someone to live at home. Elizabeth needs to have support outside the family but try finding anywhere decent and a hospital is not decent in terms of getting better. The same patients return time and time again to the wards as I have seen but I want Elizabeth never to return to the wards. I want her to be free – I want her to have one to one support for a while and I think it quite right that this should be provided as the care has failed her and made her disabled. There is no way she should be kept in a hospital for years on end at huge expense to the public – this is why it is important that there is communication.
People may say that perhaps I am the one causing the lack of communication – in answer to this I would point out I was originally overjoyed she was sent to Cambian as she was most disturbed at the Bethlem. The only thing is the distance and we do not see much of her but I did not bargain for the way I have been treated by the team and have been made to feel like a criminal. I am not alone with this bullying in mind and that is why I have decided to document it – Other mothers who have been quiet are still treated like dirt.
The answer is not to be quiet but speak out about this if things are ever to improve and I want to meet Mr Asaria as soon as possible. I want to show him the book by Dr Walsh especially bearing in mind the new law in Wales which my daughter is being deprived of ie holistic care. Mr Asaria should send doctors to the new Chy Sawel Conference as Dr Walsh is looking for 20 to train up. In fact he himself should go to this wonderful event.
Once again though I would point out as I have done on numerous occasions to the team that I am just a mother who would not attempt to take my daughter off the drugs and feel this should be done in the right environment under a professional doctor – I am not qualified to do this and neither would I encourage her to stop taking them – sadly she could die if she stopped taking these highly dangerous drugs and Clozapine is the third most dangerous drug apparently. Having said all of this there should be such facilities provided. Choice should be given – for instance some patients who may be under-methylated get on with the drugs whereas others do not. Such problems would not arise if Dr Walsh was to do the assessments and this is why I have turned to him – I was most impressed by his research – what has Elizabeth got to lose when an expert looks at nutritioln and correct diet. There is not one facility in the whole of the UK that helps someone come off the drugs if they are having adverse reactions and this is a disgrace – what if errors have been made for instance when someone is multiply diagnosed – Dr Tracy could help with her advice there. That is what makes the care cruel and inhumane as many people have been pushed these drugs and not told the risks from the very beginning then they are told they have to be on them for the rest of their lives. Like any drugs, withdrawal has to be done very slowly and gradually however the Bethlem did it by 150mg and mixed with another drug leading to the section and this is why everything is so very unfair and cruel.
I do not intend to sit back and do nothing and I think a hospital who have won Best Care Provider 2012 as well as 2013 should at least get back to me but they are ignoring my calls and dismissing me and the more they do this, the more it will look bad on them as far as I am concerned and the more visits they will get from me that is for sure.