My daughter has sent me numerous text messages asking when I will be coming down to see her.
I did not see Elizabeth over the Bank Holiday however after the next Bank Holiday I have requested to visit Elizabeth and take her out as she has texted me asking to go to a Theme Park. There are plenty of nice places to visit in Wales you are spoilt for choice but am still waiting for consent from the Team governed now by the previous psychiatrist and have no idea whether such leave will be granted. I have requested three times and have not had an answer. A response requires a meeting apparently and this is taking place next week where Elizabeth will be quizzed by the team as to whether she really wants to go out with me or not. It does not matter if you have written proof by way of text message – a team can say the opposite and deny you the contact with your son or daughter as they see fit. It is easy for them to do this under the Mental Capacit Act and of course a doctor can greatly influence a patient by putting them in such a position where they HAVE to agree and I do not believe the advocates are truly independent as from what I have seen at the Bethlem, Rethink were constantly used in such a way by the consultant psychiatrist and never once did they attend a daunting meeting involving about 9 professionals which I know that Elizabeth hated. A patient can be made to feel terrible if a team gang up and they can be shown up in front of other patients.
So this is what my daughter said.
First of all she texted me back as I have requested her to come and stay with myself and younger daughter in a hotel for 1 night and this makes me feel that someone in the team has been speaking to her. I do not believe the team at Cambian are at all happy about this one night in a hotel and I do not know what their problem is. I would not wish to take Elizabeth out with me at all if I felt she was that unstable but I have no doubts that she is fine to come out but cannot walk far as she constantly feels dizzy and that is the effect of the Clozapine and high level of drugs she is on with Metformine being given by at 500mg. To begin with even more drugs were being given but I had to complain about this when I heard Lorazepam was also given on top.
So, I have not received an answer from Cambian and will know next week what the outcome of my request is. If the answer is “No” then my younger daughter will be devasted and extremely upset. Already the family has been torn apart as I have documented by this team.
It will be interesting to see what happens next week as this psychiatrist is the one who has NEVER granted me any contact with my daughter apart from supervised/escorted visits. I do not think that this psychiatrist likes me at all from the way she has spoken to me and the things I have heard. I hope that the personal feelings of this doctor do not get in the way of granting my daughter time to spend with me by trying to say that she has changed her mind. Elizabeth has already indicated at the strict control there is under Cambian and certain members of the team have not been able to hide their feelings by the way they have reacted I feel not everyone agrees but are forced to agree. The previous psychiatrist was wonderful and really nice – this previous psychiatrist was just temporary and allowed me time with my daughter and always communicated effectively and personally rang me. I much appreciated this as I have felt totally excluded by the team who have only communicated with the rest of the family and seem not to like me at all and I am not imagining things one bit in this respect.
Every visit, every contact with me so far Elizabeth has enjoyed and when I see my daughter I take her out for meals and go out of my way to make it nice. I am not able to go down that often because of the distance.
The last visit not long ago was a home visit for the first time and this went well apart from the burglary at my house and Elizabeth was so happy to see her cat who she misses. However, the rest of the family who were allowed to see Elizabeth on her Birthday whereas I was not, wanted to see her also and I could have said no to this to be fair. I know that Elizabeth likes going to her grandmas and did not stand in her way but it meant that I had virtually no time with my daughter and one night is not enough to travel all that way by car only to be collected the next morning by the team. Still it was better than nothing and thanks to the previous psychiatrist.
I wish to share with you some disturbing comments:
“I have to watch my reputation, Mum”
“Please don’t cause me any trouble as things get back to me”
I get the picture! so – if I disagree with the team in any way they go and speak to my daughter and tell what I have said or what I am doing. It is terrible that a team is involving her and repeating anything that could be used against me to my daughter. Elizabeth has shown signs of fear of going against the team who have control over my daughter. This is what is going on at Cambian and not just Cambian but the NHS as well in places like the Bethlem. All this and complete lack of communication is against what Norman Lamb and David Behan were saying as they were talking about inclusion of families not exclusion as this is a common thing in terms of confidentiality and capacity that a team can play on. So if Norman Lamb and David Behan of the CQC state this then they should do something about it.
As a parent and carer I have every right to say what I think as I have listened to my daughter but then a team can turn around and say that you are interfering in the care. It is not good when a patient is afraid to speak and tell people what is being said – this patient is made to protect the professionals but Elizabeth has confided in her sister disturbing things against me that was evident to me all along in that it was not encouraged for her to have contact with me and that was clearly the case as communication was definitely one sided and not only I felt that but legal professionals too. When I have asked the Manager of Cambian “don’t you trust me” I have not had an honest answer – at one time this manager looked down at the floor and I have picked up on some body language of certain members of the team similar to this like when they brought Elizabeth down for just 3 hours and took her away despite the fact it was Xmas and she would have enjoyed Xmas to spend not only with me for one night but with the rest of the family. Everyone I had invited to the little party was shocked and horrified by this treatment as it is inhumane. Anyway I have the impression that within a team there are members that do not really agree but are forced to go along with whatever the Consultant Psychiatrist says or does.
So “I have to watch my reputation, Mum” – I hope that my daughter is not made to stand out in front of other patients just because I happen to disagree with the whole system but still I have never suggested that Elizabeth stops taking the drugs and I suspect that is the main reason because they have not got a clue how to properly reduce anyone in any case. As I am not a doctor I could not do this however if only there was decent care as I would like to see her on the minimal of drugs. I wonder how that doctor would feel if this was a member of her family but Elizabeth is just another number to her and no one can possibly care as much as I do. I would like to see a proper centre and care of a humane nature set up with proper assessments and holistic care such as Chy Sawel but that does not mean that I suggest she or anyone else stops taking the drugs. This can only be done under the guidance of a professional doctor in the correct way described by Dr Ann Blake Tracy and combined with treatment by Dr William Walsh. This cannot be done and I am not even a doctor to suggest this so what is this team panicking about – it would seem that they suffer from a problem of anxiety! What they completely fail is to put themselves in my position – how would they react in my shoes. However, everyone should question that if someone can still remember shocking things that have happened that despite 14 mind altering drugs they have failed to erase such things then my question is – what point is there in carrying on with such a treatment as the drugs are expensive and also not one of these doctors stops for a minute to think about the long term health of my daughter. I know people who are deeply affected and then they become in need of care from the NHS that is already being drained of resources. I am well aware that these drugs are highly dangerous and the risks are not properly explained. You cannot just come off them but it is a complete lie to say you have to be on them for the rest of your life that is rubbish. Like with any drug withdrawal has to be done very carefully and very very slowly – there is no help in the UK at all but Dr Ann Blake Tracy is correct as I have seen the effects of drug withdrawal and NOT ONCE HAVE I SAID TO STOP TAKING THE DRUGS. However help needs to be given for patients who are suffering terrible side effects – after all the leaflets say you should be able to turn to your doctor but when a patient does do this they just get ignored or get given more and more drugs or a different drug.
I must admit that at first I begged for my daughter to go to the private sector as I genuinely felt the care was failing my daughter at local level but I did not expect to be treated like a criminal by this team.
I got up to speak in front of lots of professionals at the Carers UK Conference and I told them how damaging it is to a family to be excluded.
“I will call the police on them, Mum – you are still my Mum” – these words speak for themselves and then you get the preferred family members telling someone who is very ill and involving the younger sister to keep quiet about a visit as only they were included and I was excluded. I think this is very sad and that is why I would like a change and choices given to mental health patients. If a patient is held for 2 years in hospital then how can they be expected to just get on with things in the community. When a patient is drugged up – the professionals job is to try and get them to do things to make themselves independent and this involves persuasion and to some point bullying. It is not a case of being lazy on the patient’s part as how do these professionals or anyone come to that know how badly the drugs may be making that person feel. Elizabeth suffered from lethargy and she was not eating well or living well but if someone is showing signs of decline to the point a team feel that there is any risk to themselves then that team will stay away leaving that person to decline to the point that further hospital admission is necessary or else the patient begs to go back on the ward in desperation.
I had a long chat with David Behan of the CQC – it was brilliant going to the Carers UK Conference. Mr Behan seemed very interested in what I had to say. I also managed to hand a leaflet on my website to be passed to Norman Lamb and I hope I get that reply from the Minister’s Office as Carers UK contacted me to say that they wished to get in touch.
I feel so strongly about a change in the care system and I am sure that there are many members of very good nursing staff that would also like to see change but they are powerless to do anything because at the top there is intimidation. However I am not intimidated by any of these powerful people and feel that it is the right thing to do to speak out if you wish to see wonderful changes and an end to a culture of bullying.
I think it is great that there is a blog by Mental Health Cop – in relation to articles in the Evening Standard I do not believe that the Police should be completely blamed although I have to say that many patients do not have much good to say for them. The patients should really be looking at the law – the law is wrong – it is the law that fails to protect the patients and shelters professionals who distort the truth and reality.
Today I am meeting with a group of wonderful former patients. None of them have had a good experience on the wards and yet they wish to help others and I admire this very much. The group wish for Open Dialogue and this group could be helping by way of peer support. My daughter would often respond more to someone as a “friend” rather than a bossy controlling member of staff – unfortunately this was what was lacking in her original care. The group also wish to bring to the public’s attention what is going on – the fact is that many people are affected by mental health problems and personally I am not ashamed to bring this out in the open. I also have plenty of positive things to say about such patients who are extremely brave enough to stand up for their rights.
Today no doubt we will be discussing the DSM 5 as there is a conference coming up shortly in London.