4 times it has taken me to get consent for leave and the team suggested Bluestone National Park but when I booked it was not possible just for 1 night. I tried to get two nights but this has been flatly refused by the team who give no reason whatsoever and try and make out it is my daughter’s wish.
Here is a list of things, some of which I have highlighted in my email to Cambian today:
1. Excluded from the beginning unlike the rest of the family.
2. Referral made to my “past behaviour” – this means that there must be bad things written in the file about me – the psychiatrist has never met me before and had judged me on what has been written about me and thus I have been excluded from every single meeting unlike the rest of the family.
3. Local solicitor – a very good firm that Elizabeth appointed herself and without me being present replaced. Someone in the team apparently suggested she would be better off with a Welsh firm. “Mum, I do not know why I have got all these letters from Welsh solicitors” I then said – did you wish to change your solicitor to which she said that someone but she could not say who suggested it would be better as she is now in Wales. It is notable that consent was given to view parts of the medical files to the previous solicitor ie the very basic of information
4. First visit to Cambian led to a small room – friend present. Elizabeth was brought down to see us. We were not taken around the hospital – we were confined to a small visitor’s room only and for a very short time. Tried to find out about the forthcoming Tribunal for Elizabeth but the member of staff made out he knew nothing of this but I was later to find out that the rest of the family knew about it.
5. The Tribunal went ahead without my knowledge – her father was present and someone from Enfield Mental Health – the Tribunal failed of course and was no doubt destined to fail! I wondered if she had any representation for her Tribunal.
6. Second visit took place. Someone was late in coming and we were told to leave and come back the next day – this was the occasion where the nurse stood over us all the time which I found absolutely intimidating and my friend was absolutely appalled by this. It was my Birthday and we only had time to say hello and goodbye because someone else was late. We then came back the next day briefly before going home.
7. Solicitors appointed and having listened to Elizabeth who was not happy on the section, I felt strongly that everything to do with her care has been shocking and appalling. The care had failed locally and one drug after another pushed at my poor daughter. I have witnessed her suffering on one drug after another and seen that the teams could not care less – she is just another number to them. The team do not care less about my daughter and they do not care less about what damage they do to the family. So I felt a bit better having got solicitors appointed as the last time I was unprepared and suffered about 2 days of bullying and harassment by the legal teams at Enfield Mental Health Social Services – they even sent me the court papers for displacement of me as Nearest Relative giving just 1 day notice to me at work followed by call after call after call – anyone else behaving in this manner would be arrested for harassment. The calls continued after work when they did not get an immediate answer so not only did my work colleagues witness all this but other people at my hairdressers. I could not find a solicitor in such short notice and had to back down and then they slapped on a Section 3. This time I was ready whilst she was at Cambian – I had solicitors and I later got told they were again trying to replace me as the Nearest Relative – I think this is because they wanted someone else in the family who happened to live in a different area. Perhaps this meant that they could just wash their hands as clearly this is a case they all wish to be rid of as well as rid of me as the Nearest Relative.
8. As the Nearest Relative I have the right to attend a Manager’s Hearing. Cambian flatly refused the file to my solicitors. They were desperate for me not to see the files however whilst I have not requested the files I have the right to see what has been written about me under the Data Protection Act. I can guarantee my name is like a piece of mud – I have some of the files so I know that a team can get away with writing whatever they like to the point of libel. Noone else can get away with such things but it would appear that the team think they are above the law. It is no wonder why some of them sit there laughing in the meetings. My solicitors had to call off the meeting.
9. A new psychiatrist was temporarily appointed and he is one of the few psychiatrists that have made the effort to communicate and even though he may not have agreed with my wishes for holistic care, he was very polite and courteous and listened to me. I presented him with evidence from the patients I am in touch with of my concerns about Clozapine. I mentioned why I was upset about the section because the National Psychosis Unit had caused the psychosis by the reduction too steeply of Seroquel and then mixing it with Olanzapine. I know all about these drugs thanks to Dr Ann Blake Tracy and I joined her site called the International Drug Awareness Coalition and this even gives you proper advice on how to correctly be reduced off these drugs. I passed this on to the Bethlem but they would not listen and they went against Professor Robin Murray’s written advice of a drug free period of assessment. Professor Murray then tried to distance himself despite the fact he told my daughter that he had one or two contacts – it is appalling that he did not do something to rescue my daughter from this hell on earth place.
10. As I said to David Behan – Chief Executive Officer of the CQC, the Bethlem did not do things properly and therefore why is my daughter on a section on their account. This should be immediately lifted. I told him how appalled I was at seeing bruising all over my daughter’s face. I have not had a satisfactory response about this or even a hint of an apology for the shocking way I was treated myself.
11. I had such high hopes of Cambian but when a doctor does not like you and is pro the previous hospital then what hope do you have ie., “I have heard all about your previous behaviour” . From my experience a team have to follow the advice and guidance of the consultant psychiatrist and that is what is happening at Cambian. So now the temporary consultant psychiatrist has left the other one has returned and the reason I am so upset is that two nights is not too much to ask. If Elizabeth was not feeling too good then I would bring her back immediately but to think that most of our time will be spent travelling and I wanted to book spa treatments and make it nice for her. I am so bitter towards this hospital Cambian that have supposedly won Best Care Provider 2012 and have associated themselves with Ruby Wax and Roger Black which I have seen on their website.
12. So I have just passed the message to my younger daughter that she cannot see her sister for more than just a very short time and she was naturally very upset. We do not visit that often because of the distance and I feel this is most unreasonable. I told my solicitors all about this and then I tried to contact the Chief Executive of Cambian whose offices are very near to where I spend most of my time.
13. “I will have them arrested, Mum – you are still my Mum” “I have to watch my reputation” “it is very strict here – you have to do what you are told” “don’t embarrass me Mum otherwise this will get back to me.” When I could not get through on the phone as it was forever charging in their office I asked my daughter “is anyone in the team recommending you do not have contact with me – “yes Mum but I cannot say who – I’ve got to go now” “Mum, the drugs stop me from thinking clearly – I feel dizzy and have to hold onto the walls” – Her sister asked “did you wish for my Mum to have supervised calls only” – her reply was “no I did not”.
Now the Manager of Cambian has said that it is my daughter’s wish that she only sees us for 1 night. I would dispute this as well – this is not what she has been saying to myself or her sister.
At Xmas Elizabeth was brought down for a very short time escorted by two nurses. I tried to do a little party – you cannot have a private conversation with two nurses listening to every word you say and that was deliberate. I have to say the nurses were nice and looked a bit awkward as I happen to know the rest of the family were allowed to be on with Elizabeth.
So we were all deprived as a family by the consultant psychiatrist and team of Cambian to have my daughter just for 1 night and then she could have spent 1 night with the rest of the family. My daughter was deprived being with her family because of the team.
Then on her Birthday shortly after Xmas I did not know it had been arranged to bring her down but my younger daughter had been put on the spot ” don’t tell your mother” How awful is this. No doubt they will try and say “it is her wish”
So, under the temporary psychiatrist I put in a request that for the first time could she be allowed out without an escort unsupervised and this psychiatrist allowed it. I collected her with my younger daughter. We took her to see the hotel where we stayed. We took her on the Brechen Mountain Railway and other places of interest including having nice meals out together and then we brought her home just for 1 night. However when the rest of the family got to find out the grandparents wanted to have her over and that meant I had little time with her. The next morning staff came to pick her up.
On each occasion I have had my daughter there has been no problems. I feel I am being treated like a criminal and to think I was training to go into the police at one time.
I have tried to reassure the team that although I do not agree with the drugging of my daughter there is nothing I can do – it is heartbreaking because I know that her health has deteriorated having had private tests done. This team will do nothing to reduce her off the drugs prescribed by the Bethlem.
There is nothing I can do as a mother except watch them destroy my daughter’s long term health by 800mg a day and one of these drugs is being given off label. They do not work as Elizabeth can remember shocking things.
Some people may think that it is best not to complain then you will not get treated this way however I would disagree because how on earth are things ever going to change for the better unless you do speak up. I am just one mother that the team hate and they have ganged up – there is no inclusion or understanding of how I feel.
The law is failing to protect the weak and vulnerable. There needs to be something done as the complaints procedures are dismissive and there should be a system where individual complaints are looked at properly. I have every reason to be upset and am right to complain about the care as many shocking things have happened to my daughter and no one has even said “sorry”. It is no wonder she has gone downhill – it is not only the healthcare I am talking about here but the residential care in the community and there is a lack of decent care available.
I like the sound of a therapeutic community – I do not wish for Elizabeth to remain in hospital forever and especially under a team who treat you like you are nothing and I think it is very very sad that Cambian will not give 1 extra night bearing in mind the long distance of driving we have to do and the fact that previous visit was successful. Of course the Chief Executive of Cambian could not be bothered to ring me back today.
Last of all, the Tribunal is an important occasion whereby a patient can get off a section. I already know having found out from the rest of the family that Cambian want to keep her for about 18 months but why cant she be voluntary and have the holistic care programme backed by a nutrition and proper assessment by Dr William Walsh of the Walsh Institute especially in light of the shocking evidence I now have seen.
The tribunal and legal process has already been drawn out for longer than necessary on the basis that Elizabeth has not agreed when in fact YES SHE HAD AGREED. I pointed out to the team that everything she is telling them she is telling us the opposite.
I am getting increasingly concerned for my daughter’s wellbeing. It is distressing for her to be pulled in two directions and that is what Cambian are doing. Like a religious cult they do not seem to want for her to enjoy time with her mother who they see as someone who is bad and not fit to be a mother. The reason they see this is that they wrongly think I will tell her to stop taking the drugs. This cannot be done – I am not a doctor qualified to reduce her. I know it is possible but the appalling thing is in the UK the whole care system is cruel and inhumane – something should be done about it as no attention is paid to the long term health of the patients on these drugs and there is question about my daughter’s diagnosis. She was not given the promised drug free period so this in my opinion is in question – she has about 5 diagnoses and the latest “Chronic Treatment Resistant” I wish I could just take her away from the UK and go and live in Finland in a place called Tornio. It is not stigma that worries me as I am proud of my daughter – associate my shame towards the rotten care on offer of enforced drugging in the UK and to think this is allowed to go on. Where are the voices of churches? There are patients of all nationalities and religions under the care system forced to take drugs. What are the religions of the world doing about this? What is the Government going to do to improve matters and provide alternative centres. Perhaps someone should go out to Finland or better still let me take my daughter over there so that she can get well again under their humane and unique care as we have nothing over here.
The only hope I have got is if Chy Sawel can be set up and similar places.