On request I have been given forms to complete regarding the carers assessment which I had to request as it is costly to have to travel to and from Wales but then again I have not been going that often as I work full time and have used all my holiday on various hospital meetings I had to attend at the Bethlem Royal Hospital. Since her move a long distance away, I have only been to visit twice and now I am not sure even a visit would be allowed. I do happen to know Elizabeth was allowed out with her father and partner recently alone. I contrast I have a weekly slot of 6pm every Monday to ring and cannot because I am travelling home from work and so I have nothing much to write at the moment. It would seem from the very beginning my contact with my daughter has not been encouraged by the team at Cambian Four Star Wards and now I have it in writing that my daughter has requested supervised phone calls only once a week at 6pm.
Because I cannot phone I asked her sister to tell her that I would not be phoning as I see this an infringement of human rights to listen in to a personal phone call.
The social worker at Enfield Mental Health has written to say there are no grounds to ban me from Nearest Relative – in other words they cannot find any reason. As much as I am against the drugs – there is nothing I can do – my daughter has no choice but to keep taking them and whilst on a section they can forced the drugs and you can just imagine what must go on behind closed doors if a patient refuses to take the drugs and I have heard many refuse and they have no choice as these drugs are so highly dangerous you cannot just come off them. Like I have said before there is not one single facility for someone to go in and come off prescribed drugs. Even if that person has terrible side effects, health problems caused by the drugs themselves – it is like giving someone a life sentence – there are no words to describe how upset I am that Elizabeth got put on these drugs in the first instance and I am sure it was because the anti-depressant Cipralix did not work, caused her behaviour to become adverse and aggressive like I had never seen before, caused her skin to react and become itchy and scars appeared all over her face whilst taking this terrible drug. When Elizabeth decided on her own accord to take herself off this drug at 30mg I only wish I knew what i know now just how dangerous the drugs are and that this simply cannot be done. That was it, something happened and things got taken out of my hands and sadly this was a pattern of hospital after hospital after hospital admission which made her worse than ever. I would have Elizabeth back home again if her behaviour was manageable but I do not know how much care she would need in place now and this may mean that I would have to give up my job which is full time to look after her and then what of her future? it looks bleak – a lifetime of drugs, a lifetime of hell and living life like in prison that could end in an early death. I have just posted a comment on a website stating that it is all very well to speak out but what is being done about things – NOTHING. This requires money. I am thinking to myself what can I put on auction to raise money to build an alternative care centre so that at least my daughter is treated in a humane manner because all of these hospitals especially the Maudsley and the private sector Cambian exercise huge control. I am deeply disappointed as I had read that the private sector hospital was one where they respected and took on the ideas of patients who had been on acute wards. You get no information whatsoever – they cut you out completely as a parent if you dare to speak up and complain.
Well I have no regrets for doing this because if noone does this and just complains then that is no good however more – much more needs to be done and there are three organisations which would like to offer alternative care and accommodation and I would really like so much for Elizabeth to go to such a place where the care is not all about drugs and imprisonment however measures have to be put in place for the possibility of someone becoming unwell on say a lower dosage of drugs however, there are more and more experts and nutritionists and alternative therapists that could help in such a way that could resolve all of these problems. If only you could see what I have seen – the suffering and the state of some of these wards and speaking to the patients who are human beings and are treated like rubbish, stripped of their human rights and drugged up to their necks to make life easier for the staff.
On the bright side I have joined a fabulous new gym near to where I work. I think exercise is so important and so is diet. Elizabeth once took a keen interest in diety and nutrition but now she craves for junk food and sugary things like never before. I believe this is as a result of the drugs she is on. When she was in the local area I used to take her to my local gym on occasions, but then she became worse and worse to the point she no longer wanted to do anything any more. I have not heard whether she will be coming home at Xmas or if I will be allowed to see her at all during this time. Such is the control of the private sector hospital where she is right now (Cambian) that so far I have only been allowed supervised visits and now supervised phone calls only and now I do not bother to ring any more because I see that as an infringement of human rights. I think that she will be allowed to see her father over Xmas but not me – I am not looking forward to Xmas this year at all. On these rare occasions it is nice for the family to get together but I do not know if that will be possible this year.
I cannot say too much about what is going on right now but I have asked for more information from her social worker as to what is going on as you are not told anything.
Whilst my daughter is like in a prison environment where the control is enormous, my life too is like that because you feel in a trapped situation when someone is miles away there is nothing you can do or change the situation other than through court and now this is up in the air and may not take place before Xmas due to an error on the part of the court so I understand.