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Monthly Archives: July 2013

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.

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The photographer from the Daily Mail came to see me today and took photos in the garden – it has been beautiful weather all day long. I am thrilled that a leading newspaper such as this has taken interest but would have liked even more included in the proposed article. There are many people I know who would love to speak to the Daily Mail themselves about the abuse they have encountered both patients and carers themselves.

Now I am not alone in the house and have been interrupted several times as I had to quickly tidy up the house before this photographer arrived. I have been accused of losing the remote control, papers and various other items and my thoughts are that these things should not have been left lying around by other people in the first place. I refuse to look for another item that may be missing from now on.

I hope these photos are good and that the photographer takes into account my request – unfortunately I do not get a choice of which photo is going to be used.

Anyway after that took place I then decided to phone Elizabeth. I was disappointed to hear that Elizabeth has not been out all day. On a day like this she is on the ward!

This enforces my belief that Elizabeth should be out in the fresh air and certainly not in rigid and strictly controlled environment such as Cambian. I thought there was patient involvement but they do not even involve carers let alone patients. Anyway this is wrong and something should be done about it.

I have written twice to ask when the CPA is and have not had any replies. It would be good for this to be arranged in line with the Tribunal. The whole family want to come down for the Tribunal to support Elizabeth. I have heard Cambian like to keep people a long time and 3 yrs is far too long especially when Elizabeth is starting to lose confidence however finding the right place in the environment is crucial but how can the family present their ideas and thoughts when the team have excluded everyone.

I have said to Mr Lamb at the Institute of Psychiatry that the failure of care at local level has led to this move miles away from home but I apparently am not alone. I know of other mothers who are faced with this situation and are deeply unhappy about it. Mr Lamb mentioned had I not discussed this with my local MP however this system is not working either. If a local MP says he cannot help you then you have to go to a higher level. I have found out that the complaints procedure is not effective – nothing has been achieved except when it was under Healthcare Commission and referring to the Chief Executives claims of Excellent Care – they had to respond to me in a nicer manner but how on earth did the Healthcare Commission come up with “satisfactory” instead of Excellent. Well I would not rate it satisfactory at all especially when I had approached out of interest two firms of solicitors who stated negligence and I have the letters to prove this.

Anyway you cannot rely on awards or ratings so it would appear and one case I cannot even talk about.

It would seem that staff stick together protecting one another when things go wrong that is for sure.

Despite my dissatisfaction in the care both healthcare and in the community, I have come across some good members of staff. They are mainly junior members of staff like nurses – an outstanding nurse was the one who came out running in the Bethlem Hospital for instance and the keyworker at her scheme in the community but she left unfortunately. I also came across an outstanding member of staff at a group Elizbeth was sent to – this member of staff could see something was wrong and acted accordingly. I cannot go into details but there has been so many things that have gone wrong for me to be resorting to this blog. You never get an apology and if you complain this is not dealt with properly. My biggest complaint is that Elizabeth should never have been put on drug after drug after mind altering drug to the tune of 14. No way should a social worker push drugs such as Clozapine – I think the system is rotten to the core and needs changing. There are lots of organisations out there who are doing good work however the law is rotten and until this is changed then some certain staff like psychiatrists can use the law to their own ends, playing on capacity, confidentiality, exclusion of families, chemical brainwashing. This is what is going on – the Tribunal arranged with the entire team going except for me the nearest relative. Then I am told by a member of staff from Cambian the date cannot be changed and I said Oh yet it can and got straight on to my solicitors. I clearly need a mediator in this and have found someone who is excellent. I have not had a carers assessment and miss out on everything going for carers at the local carers centre as I work. However the one thing I need is a mediator and if I have to pay for this myself then I will.

Tomorrow I am planning to do a barbecue – if the weather stays nice like this then it will be ideal. Elizabeth told me last of all that she missed me and fluffy the cat. It is too far to take him to see her at Cambian = I will never forget how cruel the staff were at the Bethlem how she was not even allowed downstairs for 5 minutes on a beautiful sunny day. However I would like to take Elizabeth to their fete as this was the only time I have seen a happy environment there at this hospital. Maybe that can be arranged and also Elizabeth wanted to come with me to the Institute of Psychiatry. I had such a great time there and would recommend this to everyone – the whole event was organised brilliantly and the person who did this gets my highest vote. I have just heard from Eleanor Longden and I liked so much what she said – a condition rather than an illness! I fully agree with this. I also liked the speech of Frank Bruno.

Unfortunately Professor Shitij Kapur had disappeared as I wanted to give him a copy of my leaflet and tell him of the wonderful plans of Dr Walsh to train up 20 doctors. I thought he may be able to help in this respect and I intend to write directly to him. I am sure I will bump into him again at one of the wonderful AGMs – I must find out more about Cambian and when they propose to hold their AGM but the best one I have been to so far has been North West Central London NHS as my dream was fulfilled in holding the Olympic Torch and this was another well organised event. I took some shocking pictures as an example to show what damage had been done in both cases of my daughters with the drugs and how they do not work for everyone and the book of Dr Walsh explains this. I cannot wait to see Dr Walsh over here and he should be invited to the IOP – something should be done as a matter of urgency for people like my daughter stuck in hospital, left to lose their confidence and become institutionalised. There is no way on earth I want to see my daughter spend the rest of her life in hospital in such a controlled environment – neither do the rest of the family. AS long as Elizabeth has the right level of support nothing can go wrong.

I went along to this event and thought it was very good. There were many outstanding speeches and a good turnout. I thought Frank Bruno and Eleanor Longden were brilliant. In fact everyone who got up to speak were fantastic. It takes courage especially when someone has suffered from mental illness and been on the wards suffering in some cases shocking treatment and there were members of SOAP present (Speak Out Against Psychiatry) – the group of mainly former patients who have done so much to help me and care about others who are abandoned and who have done much to support me as a mother. It was an all day event about Stigma and Discrimination and this not only affects service users but the families too. Some families are ashamed to speak out whereas I take a different approach and to eradicate stigma my approach is the right way in my opinion. I hope by getting up to speak and with by blog it will educate those parents and family members who may have distanced themselves from someone they care for, son or daughter – many patients said to me “I wish you were my Mum, my Mum dies not want to know me any more”. I would suggest that a parent/carer reads the book called Prozac Panacea Pandora by Dr Ann Blake Tracy. Also they should never give uo as parents or turn their backs. I as a mother have done research into this and have found many interesting books such as Pharmageddon by Prof David Healy, Molecules of Emotion by Dr Candace Pert, Dr Walsh Nutrient Power and he is looking for 20 doctors to train up for Chy Sawel. Surely anything must be better than yet another acute ward. When the care fails a patient needs a peaceful surrounding and understanding – peer support can bring greater understanding and encouragement to get well as they have a real understanding unlike myself and professionals who do not listen. My daughter was always saying “why wont they listen, Mum”. Frank Bruno mentioned about the negative response from professional’s too.

Getting back to me it is no wonder patients are upset as just look how I as a mother have been treated. It is easy for me to stand up to this kind of abuse but not so for the patients.

I am currently up against a wall of silence at Cambian and social services. Since I found out the Tribunal was arranged behind my back I am very cautious as to what is going on and feel I need a mediator to communicate with such a team which would end the lack of communication. Well I have managed to find one who is very experienced with court proceedings . This person has given me tremendous advice.

The date for the Tribunal is being sorted out right now – I know what I am up against – a team who have tried to get rid of me and do not explain to my face the reason why. It is like being up against a brick wall. At least I am being open about things. Instead meetings are going on behind closed doors and having heard from my daughter that she wants me at the next meeting I have requested from Cambian the date of this meeting but have for some reason had no response.

I shall sort this out next week – I shall make an appointment to go right down to the Head Office – it may be easier to deal with them at Head Office plus I want to know when their AGM is. I enjoy going to these events very much and I have not had the pleasure of meeting with the Chief Executive yet. He is obviously a busy man as he has not bothered to return my calls. Elizabeth would like the location of these offices and at the same time there is no harm in me looking at what wonderful accommodation there is that could be suitable for my daughter. As long as the one to one care is provided by the Local Authority then that is great. There is no way that I as the nearest relative want to see either the following:

Elizabeth In hospital for 3 yrs or more! – this is ludicrous – Elizabeth should not even be on a section and if there is any problem with the funding then they should let me know and I will do what I can to help because there is more than one responsible here for my daughter’s decline.

I do not wish to see Elizabeth in a scheme where there is not enough support and I have given this thought. It is essential that I am there to discuss this and other important mattes with the team themselves and this is the second request met by a wall of silence.

Elizabeth should not be on a section and neither should so many and the sooner something is done about this shocking expensive situation the better as far as I am concerned.

It is not good enough in my opinion to act in this way.

Luckily Cambian have found the oils ordered through Dr Tracy but I am also waiting to hear about the electronic cigarettes. Elizabeth has asked for these on several occasions. I am not happy if my daughter is being ignored and shall take this up with head office.

I have decided not to waste any more time with chasing up responses when I have Head Office within walking distance on my doorstep.

Tomorrow I have the Daily Mail coming to see me and I am thrilled that a leading newspaper is taking such an interest in my case. There needs to be a lot more said about the shocking system whereby young people are trapped on never ending sections simply because there are no suitable facilities where they can get the level of support they need in the community such as a therapeutic community. This may not be right for everyone but at least there should be choice.

Anyway, although the conference yesterday was about Stigma, I was delighted with the speeches of Frank Bruno and Eleanor Longden that are inspiring to so many like my daughter – only wish she could have been there – she did ask but she is miles away under a section which is unfair. I had to be honest and although it was about Stigma I found myself speaking about the shocking care too but pointed out in a relevant way that I as a mother am proud to stand up and talk about what is needed and on behalf of those who have no voice to speak for themselves that the public are unaware of and what is costing a fortune – how much does it cost to keep someone in hospital for years on end and then they end up deteriorating as the only care is enforced drugging. This money could be better spent on the A&Es that are being shut down . How is anyone going to get better on a neverending section when what should be provided is more support in the community and the involvement of other former patients as companions and peer support and the choice of a fresh start perhaps (which may not suit everyone) however there is no choice and nothing good in the current system.

Congratulations to the organisers of this event who worked hard to provide wonderful food, I could not fault the way this whole event was organised and the organisers would do a fantastic job if they were involved in patient’s activities and the provision of decent facilities and food etc for the patients. Well done to the organisers of this event.

I have not spoken to Elizabeth for a few days but I am not having the consultant psychiatrist of Cambian tell me the anything of the sort against what others have heard in the family that Elizabeth DOES NOT WANT ME AT THE NEXT CPA. OH YES SHE DOES. Elizabeth has requested I be present at the next CPA! I currently waiting for the response to this. I need to know the time of this meeting. I have not once been invited. I have never met the consultant psychiatrist either. I need to hear whether they have found the mauve rug and the outcome of the allowance of the Electronic Cigarettes too – there is much needed to be discussed at the CPA that is for sure.

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