It becomes obvious from the start when the team do not like you and you do not get an explanation face to face. The explanations are done behind your back as I have seen.
It is not that I have threatened anyone – this is not true but I have had cause to be outspoken.
At local level there were several very serious incidents. I even went to solicitors on one occasion but was told that it would not be worth taking matters further even though both solicitors cited negligence. I cannot write about the other serious incidents however they were so shocking that I requested the file on more than one occasion. Anything can be written behind your back – such things as accusations of “threatening behaviour” “nasty” “abusive” “aggressive” and even more shocking things. My name has been portrayed like mud in the files by the local team and God knows what the Bethlem put. I requested the files under Data Protection Act as my daughter’s face was absolutely covered in bruises and the ward manager had to ask me what date that occurred because she could not recall seeing any bruises. There could have been a good explanation for these bruises but it looks very very suspicious when the team protect one another. I have already mentioned how I have been treated because I was upset but not aggressive – the team did not like it because I complained. I had in writing a letter from Professor Murray promising a drug free period. Instead of that in the first week my daughter was offered Clozapine and she was against this drug and all I have ever done is support her. They drugged her up so much that she did not even know what they had put her on and whilst at work I received call after call and had to listen to my daughter distressed and upset. How very cruel the care is in the UK.
All I have ever done is listen to my poor daughter unlike the team and because she is weakened by the drugs I have spoken up for her. This is where the team gather together, have meetings behind your back and exclude you.
At local level there was freedom. Patients on a Section 3 could go out unescorted as part of their human rights. However at the Bethlem things were very different however Elizabeth was allowed out at first in the grounds and then I used to come up and take her out every weekend as I felt sorry for her being stuck on that dreadful ward.
When I got banned that was around about the time I found out what drugs she had been put on – 300mg Clozapine and 500mg Metformine off label for weight loss – when I complained and showed the letter from Professor Murray I got accused of causing upset on the ward and being aggressive and then I got banned. The letters copied in about 8 people at times. The meetings sometimes had 9 people and Elizabeth said she dreaded these meetings. That whole hospital was awful and they just used her as a human guinea pig discarding the Advanced Declaration that no further experimentation be carried out. Elizabeth also gave consent for me and other family members to see the file but the team blocked that.
I was given a day’s notice she was being moved to Wales without even giving me the opportunity to say goodbye. There was no discussion with me first but they took into consideration the fact that I wanted Elizabeth to have a fresh start. Things had not worked out locally and at the time she was at risk as regards someone she had met on a mixed ward.
So when Elizabeth first came to Cambian I was delighted as I had read their brochure and was most impressed at what they said they offered – pets, dog walking, outings, patient involvement – you name it! I have not seen anything of the hospital as I have never been invited to a single meeting and have not seen past the visitor’s room which is very very small.
On the first two occasions staff were there in this small room all the time and I have documented the fact that on one occasion someone else turned up late and I was told to come back the next day and on that occasion a member of staff stood over me and did not leave for one single minute. You would have more dignity in prison than in this hospital. I was shocked as this was not what I had in mind for Elizabeth – I wanted patient involvement for a start and humane care but this was nothing but strict control.
It became evident that the team did not like me – the psychiatrist referred to “my past behaviour” so this has left me thinking that things have been written behind my back that are not nice. The psychiatrist referred to the Bethlem as a leading worldwide renowned hospital and I thought this was the case but I was horrified when I saw what was really going on. http://nationalpsychosisunit.blogspot.com. I had no idea this was a research hospital and I trusted Professor Murray who distanced himself.
So, I had nothing bad to say about Cambian and was delighted Elizabeth was out of the Bethlem and in a nice environment or so I thought. Wales certainly is a nice environment but a hospital however nice inside is not a good environment surrounded by other seriously ill people. I do not think it is right to keep someone in a hospital for years and years on end but this is going on at huge expense to the public. Cambian must be even more expensive than the price of keeping someone on a local ward however it must add up and Elizabeth has been in hospital now about a year. On previous occasions she has been in hospital for 2 years but being local I was allowed to have her home at weekends and I so wanted her to settle into the community but again I was shocked. I was right about the placement – I knew Elizabeth needed more support but capacity is played on and you are excluded if you ask for something like direct payments – what was missing was the young companions and Elizabeth did not ask – if you do not ask you do not get but some people are not well enough or strong enough to ask like Elizabeth. When you ask as a mother it does not go down well. The local team decided to appoint someone from Disability Action to find out what Elizabeth wanted – they completely dismissed me as the mother and excluded me in terms of whatever I said would improve matters. Everything I said was discounted. Elizabeth was isolated and living in a flat in the community she said “no one knocked on her door”. Then something awful happened to her under this scheme and in addition to this, she had all her possessions stolen and the team allowed her to go missing time and time again through her association with a “friend” she made on a mixed ward. Whilst missing I doubt Elizabeth was taking the drugs – Dr Ann Blake Tracy says even if you skip a drug for one day it can have bad effects. So, I listened to Elizabeth unlike the team, I paid for a companion and was going to advertise for someone else so that she could be in safe company instead of talking to strangers as she was vulnerable. I paid for Elizabeth to see Susan Hepburn, a leading hypnotherapist because the “Personalisation” was providing nothing whatsoever after nearly 6 months. I thought I would find out in 1 hour what she wanted because the team would not listen to me and I had asked and discussed with
her. When this was booked I have never seen so much panic and this I could not understand. Apparently this is not recommended under NICE guidelines yet it is the only thing that worked. Apparently in some areas it is on offer under the NHS – surely this is better than all this drugging.
Elizabeth has been in Cambian for several months but was granted no leave during the time she was at the Bethlem – so in all she has been in hospital a year now and the only leave she has had was just 1 night when I was allowed to bring her home. The temporary psychiatrist had noted that all went well and there was no problem but now the other one is back and in the past leave was denied to me and only escorted visits and then when I complained I could not get through on the telephone as it was always charging and no one did anything to rectify matters I received a letter from the Manager and it was not nice at all. The letter granted me supervised phone calls only once a week at a time when surely the team must have known I could not ring – this was the time I was travelling home from work. I cant tell you how upsetting the whole thing has been and I want to warn others about this kind of treatment I have received at Cambian Healthcare. Elizabeth already had a firm of solicitors and a very good firm and the team set about persuading her to go with a Welsh firm of solicitors. When I asked Elizabeth why she changed the firm she said it was because someone in the team suggested it would be better for her to have a Welsh firm. The IMHA then got involved as advocates and I must admit I did not know much about them but of course this is I believe a Government funded advocacy scheme for patients who are sectioned- they claim to be independent but I have seen how Rethink were at the Bethlem. I think the advocates work very closely with the hospital and team and of course I was completely excluded by the advocates.
The team have excluded me from the beginning – the rest of the family have been treated differently. At Xmas when Elizabeth was brought down she was just left at the grandmother’s house but with me I had two nurses there all the time and they only brought her down for a few hours. This was witnessed by many of my close friends who have known Elizabeth for years. I thought the nurses looked a bit awkward and in no time they had to take her back. Why on earth could this psychiatrist not allow just 1 night with myself and 1 night with the rest of the family – it was after all Xmas. Elizabeth looked visibly upset and my friends were horrified. There were two new friends there who were former patients and they both felt very ill at ease seeing the nurses as this brought back terrible memories of their own personal experience. I tried to make the occasion as happy as I could and knowing I could not have a conversation with my own daughter I invited people who she knew very well and who have known her since she was little.
I have asked the team many times why I have been treated this way – excluded from the Tribunal, excluded from every single meeting, excluded from being kept informed and communicated with in terms of everything in that hospital. I asked “did they not trust me” – to which the reply from the manager was “that is not true” I then said “well what is it then about me” – no one would come out and say yet all the time behind my back no doubt this is well documented in the files which they are desperate I do not see. I asked if they were worried I would tell Elizabeth to stop taking the drugs but again you did not get an answer – I explained that whilst I was not happy I am not a doctor and not qualified to take her off but I wish with all my heart I could send her somewhere else even if it is abroad. I know that 14 mind altering drugs are doing harm to her body. I know of people who are now suffering from long term health problems yet these doctors do not care less about my daughter because they just want to carry on and on and on drugging my daughter and reminding her all the time of her diagnosis. However from my point of view there are several different diagnoses in the file which I have. One expert said she had Aspergers and the rest stick together with Schizophrenia. However where is the proof and the awful thing is that I saw no adverse behaviour all through her teens until a doctor put her on Cipralix and she took herself off this in one go. That was the start of hospital admissions and labelling one after the other.
I know why they do not like me and that is because I have spoken up for my daughter and defended her against them. Yes I dislike the drugs and would like holistic care in preference but I know it is not possible to just come off these drugs and would not recommend or encourage her to do so. I have made that clear to the team yet I have it in writing now that this psychiatrist is accusing me of not acting in my daughter’s best interests by favouring homeopathic remedies rather than anti-psychotic drugs. The team disagree with this. What is wrong in wishing that my daughter can be properly assessment by Dr William Walsh of the Walsh Institute and NO I DID NOT EVER SAY ABOUT HER STOPPING THE DRUGS ALTOGETHER HOWEVER THESE DRUGS ARE CAUSING NO END OF DAMAGE AND NOW I HAVE THE PRIVATE TEST RESULTS. THESE ARE CURRENTLY BEING ANALYSED BY DR WALSH. What mother would not wish their son or daughter to be on the minimal of drugs and have the kind of care available in Tornio, Finland. There the psychiatrists do not enforce drugging for a start and they listen to the patient and INCLUDE the family unlike here. It is upsetting to see in writing the description that the team think you are unfit to be the nearest relative and I suffered no end of bullying by the local team to the point I was in tears. This was done at work and whilst I was at the hairdressers witnessed by other people.
Also it has been pointed out in writing that Elizabeth requested I had no access to the files which was the opposite to the consent given to her previous firm of solicitors and I did not push her to accept this firm – she did this herself without me being present.
The team at Cambian refused the file to my solicitors and I am entitled to a Manager’s meeting but this did not go ahead in the end.
This psychiatrist states Elizabeth as the capacity to make decisions however everything the team at Cambian say Elizabeth is saying the opposite to myself and her sister.
For instance her sister asked was it her idea for the supervised calls and was someone discouraging her to have contact with me, her mother to which Elizabeth replied that it was NOT true she requested supervised calls from me and yes someone was discouraging her ……………………I will leave that to your imagination as matters will be going to court soon.
I got on well with the temporary psychiatrist. He rang me back and was very nice in the way he dealt with me however not once has this psychiatrist ever telephoned me and has gone off on holiday not granting my request for leave before now.
I am very upset because I have a long way to go to see Elizabeth and the team suggested a nice place called Bluestone but it is hardly worth us going there. By the time we get down we will have to book in for one hotel and this is a couple of hours journey away on top of a 3 and a half hour journey from London depending on the traffic. So not only is it expensive for us to go all the way to Wales but we are granted by this psychiatrist at Cambian very little time and my younger daughter I understand tried to telephone to get this extended – so by depriving me with contact to see my daughter they are also depriving her sister.
The worst thing that this team have done is on her Birthday in February the team brought Elizabeth down to see the rest of the family and I do not know if it was them who said DONT TELL YOUR MOTHER. Even if they all hate me this is surely wrong and not the thing I would have expected from a hospital who have won awards for Best Care Provider.
The psychiatrist is playing on confidentiality and capacity in her decisions to deprive me from reasonable contact with my daughter and we were deprived of having her at Xmas. How come this private hospital can act this way whereas at local level human rights are taken into account.
I am most concerned at hearing that they keep people a long time at Cambian. I have heard this can be as long as 3 years – bearing in mind a section can be renewed constantly for up to 9 years surely this is so very wrong when a patient is of no risk to society. However the drugs make someone very disabled and that is what they have done to my daughter. The longer she is kept in hospital the more disabled as far as I am concerned.
The assessment by Dr Walsh is going ahead based on private test results.
The Tribunal has been delayed because of the fact the team have said “she has not consented to seeing the independent doctor”. However, Elizabeth is not at all happy being on a section and who can blame her. Once again I as a mother support my daughter in coming off the section. I would have been happy for her to remain voluntarily but if a doctor is saying things that are not nice about you behind your back perhaps this is not the best environment for Elizabeth to get well.
I have been down to see the Head Office of Cambian which is near to where I spend most of my time. What a beautiful location on the waterfront and in magnificent grounds. Elizabeth would like it here. The office looks more like a luxury hotel and I have found out who I should deal with at this Head Office. The Chief Executive, a Mr Asaria did not get around to returning my calls and I spoke briefly to a psychiatrist there in the evening. It was a pleasant conversation but I pointed out that it was not nice the way I have been treated and that I was sad that only 1 night was given as it was not possible to book for Bluestone National Park.
I really thought that the care under the private sector would be better. I am so bitterly disappointed.
My daughter is miles away from home and I am now worried for her – it is not a nice environment and when a patient is advised not to have much contact – this is more like a religious cult in my opinion.
Yes I have been outspoken and not everyone will agree – I can understand why more people do not do this.
Speaking the truth about what is going on under the current care system has caused me no end of stress. Whilst none of this has affected my mental state of health it is affecting my physical health.
It is so hurtful to be excluded from a team because they have read a past file and a doctor who has never met m e before has formed an opinion.
Worst still when asked to guarantee that the supervised phone calls etc will not reoccur I wish to share with you this:
It is stated that Cambian cannot make promises or assurances about the fact that unsupervised telephone calls and visits will continue in the future.
I went to the Carers UK Conference and got up to speak and never thought I would have the confidence – I have nothing to hide as a mother but I have stood up for my daughter’s rights by listening to her. The team have tried to turn her against me and deny contact. The court case has been drawn out longer than it should have been.
All I want is for my daughter to be free and happy but with the right level of care. I want to be able to keep in touch with my daughter as she is a long way from home. I want to be included and not treated like a criminal like Cambian have treated me.
“I will call the Police on them Mum, you are still my Mum” – I believe the entire team want to get rid of me as the mother. I have had every right to complain and not any of the complaints have been dealt with properly. The PHSO have shut down my case, the Local Government Ombudsman have also shut down the case. The CQC give ratings that are highly inaccurate and I met David Behan at the Carers UK Conference and also The Rt Hon Norman Lamb. Both spoke about changes in care so that families where possible can be included and not excluded and I do not know how they are going to implement this as from what I can see I think strict guidelines need to be put in place and a new system of ratings as there are vulnerable people involved here.
I would like to see Elizabeth out from hospital but I have quite a battle on my hands. I wish there were more therapeutic communities as I think this could be the answer. I think that patients some of them like to help others and Elizabeth was like this – always looking after someone weaker on the ward. So there are many patients locked away who are not at risk to the public but because there is not suitable care in the community they are kept locked away at huge expense to the public and something needs to be done about the whole system.